PEN-Powered Activity Guide

In this moment

“Is there a pressure to be positive all the time?” my friend Kathy asked.

It’s a good question. I said, “No,” and then “Yes,” and added in a “Maybe.”

But it’s not a simple yes, no, or maybe. It’s actually Yes-No-Maybe all at the same time. My kid is on Facebook and so is my family. My friends are on Facebook and they want the best or at least to know I’m not suffering. I’m aware of that and of them. But that doesn’t mean I show up fake or put on fronts. I don’t.

The pressure to be positive isn’t external. I am safe to be real with SO MANY people and that luxury is a gift beyond measure. The desire to be positive comes from within but it’s not motivated by pressure. It’s real. In general, I ACTUALLY FEEL positive.

And also, when my oncologist asks how my partner or daughter are doing, I say:

“Well, I’m cranky, lethargic, have chemo-brain, and obsessed with recurrence so that’s fun for them…”

That’s also real.

Real is positive.

So, when people say I’m strong, a rock star, a warrior, and a fighter, I can’t say I feel I am any of those things. My day to day to life has been changed and though I feel 100% half-ass as a mom, partner, friend, relative, and employee – I also know I’m doing the best I can.

I don’t even have much time to think of how I’m doing because I’m so busy doing, if that makes sense.

It’s like I woke up after surgery standing in the middle of a highway I didn’t drive myself on. The focus is dodging the cars going 75 m.p.h. on my left and right while feeling groggy and confused. When I manage to make it to the sidewalk or the rest area, the relief I feel is real. I’m happy to be alive and out of danger. It’s a genuine and consuming experience. I’m relieved any time I’m not in the road and also aware I could be dropped back on that highway in another minute, day, week, or year.

That’s the complexity and reality of living with cancer (#ovarian, high-grade serious, stage 3) that, even when it’s effectively treated, still recurs 75% to 85% of the time. To have no evidence of disease isn’t the type of blessing I’ve been in the habit of counting.

For decades, I have had the luxury of physical wellness and had never stayed overnight in a hospital. Health isn’t something I take for granted anymore but that doesn’t make me a warrior as much as it makes me someone changed by cancer more than by choice.

I used to think people were sick with cancer, and either mounted a “successful” fight and returned to living or lost “the fight” and died. It seemed either/or and as those were the two extreme outcomes.

I knew my mother HAD cervical cancer in her early 20’s and survived. I knew that my Nana and her two siblings had cancer in their 60’s, and did not. They died.

I know cancer is always a full-on fight for the person with cancer and those that live with and love them (us), but fights are won or lost and that is the problem with the “fight cancer” narrative. It’s way too simplistic for the complexity of cancer, cancer treatment, cancer survivorship, palliative care, and grief.

It omits the vast amounts of time that many of us live with cancer. We live with it in active form, or in remission, or in fear of recurrence, and sometimes with recurrence after recurrence. That way of living may last one or two years or one or two decades. We may have years we seem to be “winning” the fight and years we seem to be “losing.”

But winning and losing is far too simplistic. Some live and have loss. Some die and should be counted as winners.

I’d never known some fight the same cancer repeatedly, or “beat” it before getting another kind and another and another. I didn’t know that people cancer can be a lifelong disease and that some kinds are genetic time bombs in our bodies and families that can put us at risk even if we never smoked.

I didn’t know that one can have or five surgeries, that the side effects can start at the head (loss of hair, headaches, chemo brain, no nose hair, dry mouth, hearing loss), for example, and go all the way to the feet with lymph edema, joint pain, neuropathy, and that all the organs in between can be impacted as well.

I didn’t know that most cancer side effects are not from cancer but the treatments to fight, eradicate, and prevent more cancer.

I didn’t know that in addition to chemo, one might contend with liver or kidney issues, with high or low blood pressure, with changes to the way heart beats, the digestive symptom works.

I didn’t know that cancer surgery might include a hysterectomy and removing some or several organs, lymph nodes and body parts I’d never heard of. I didn’t know how it’s impossible to know what is from cancer, chemo, menopause or the piles of pills one is prescribed.

I didn’t know how much the body can endure and still keep going. I didn’t know I’d have a body that would have to learn and know all that I was mostly ignorant about -even though cancer is a disease not unknown to my own family members.

I am still learning and knowing and going. I hope what I learn keeps others from having to have first-hand knowledge of the cancer experience.

And even as I say that I know the ways I’ve been changed are not all bad, hard, or grueling.

I didn’t know that at, even in the midst of being consumed by all things basic bodily functioning (breathing, heart beating, eating, pooping, sleeping, and staying alive), one can also be grateful, satisfied, and appreciate life and loved ones.

I know it now and feel grateful daily.

Five months after my diagnosis, I’m what’s called NED (No Evident Disease). It means that after surgery, and then 5 rounds of chemo, a carbo/taxol combination every 3 weeks, there is no sign of ovarian cancer. My CA 125, a cancer marker in the blood, is back to normal. Things are looking better today and I’m grateful, optimistic, relieved, but also know that my life is forever changed, and I’ll never be out of the woods.

Despite my NED status, my chances of being alive in 10 years are 15%.

Despite my NED status, my chances of being alive in five years are less than 30%.

Did you know 70% of those with ovarian cancer die within five years of being diagnosed?

I’m not a statistic, but a person – still, it’s hard not to do the calculations.

5 years from my diagnosis I’ll be 57, and my daughter 21.
5 years from my diagnosis, my partner will be 62.
Will we get to retire together, ever?  Will I get 5 years?

It’s hard not to wonder if some or all of those five years are what most would consider “good” years and how I will manage well no matter what? And how my loved ones will fare…

So I focus on moments, days, and now.

My new mantra remains, “In this moment….”

It’s how I approach all of my days.

I do think and worry about the future, and even plan for the worst while also planning for the best. Because the best is always possible.

What if, I’m the 15% and live for 10 or more years? What if I make it to 62? What if a new way to detect, manage, or treat ovarian cancer is discovered? What if I discover some synergy in remedies and medicines not yet combined?

Maybe I will see my kid graduate college or start a career. Maybe I’ll help her shop for furniture in a new apartment. No one knows the future. No one guaranteed more than now.

Maybe I’ll get to go to Europe with my partner, elope and return married, or stay forever engaged.

Maybe I’ll attend a mother-daughter yoga retreat with friends like I’ve always wanted to do.

Maybe I’ll spend a month at a cabin writing and eating good food with my besties?

Maybe I’ll be able to be there for my family members and friends the way they have been there for me?

Maybe I’ll get to walk my dog at the same beach and park, with my guy, my brother and sister-in-law, and our dogs and kids?

I don’t know how much time I’ll get or what life holds.

I know when my Nana died in her mid 60’s it seemed way too soon. I know that now, if I make it to my mid 60’s, it will be miraculous.

I don’t put as much into my retirement savings.

I think more about how to spend time, and money, now.

These are not negative thoughts they are the thoughts of someone contending with cancer and wide awake while pondering my own mortality.

“You won’t die of this,” some have said. “Cancer won’t kill you.”

But no one knows that for sure. It’s not an assurance the oncologists offer.

People mean well when they say such things but I no longer bite my tongue when I hear these words.

I say, “I might die of this,” (and I think, but don’t say, and you may as well).

I do remind people that we are all going to die and few of us will get to choose the time or place or method. It’s not wrong to acknowledge mortality. It’s not depressing and it does not mean one is giving up. I want to be responsible, and quickly, as I don’t have the luxury to be as reflective as I used to be because cancer is all-consuming.

I’ve barely had a moment to reflect on the past five months never mind the last five decades. I am trying to stay on top of the bare minimum requirements of being alive. I can’t yet keep up with emails or phone calls or visits. Projects and goals and plans of all kinds have shifted, paused, halted, or been abandoned.

My energy is now a resource I have to monitor and preserve. My will is not something I can endlessly tap into or call upon to motor me and keep me motivated. There’s no resource I have yet to tap into or call upon. Each day, I must consciously and repeatedly work to fill the well. And now, when friends and family who work while sick, I no longer think they are tough or strong. I think of how we routinely punish and ignore our bodies. I notice how often we run on fumes, require more of ourselves than we have as though we will never tire out.

I think of all those who must or feel they must keep going no matter what, without pause or rest, oblivious to the toll it will take or of those who have systems that can’t fight their germs. And I think of employers who sometimes require it because they offer no paid time off.

I used to run myself ragged. I used to say, “I’m digging deep, into my bone marrow if I have to.” I wasn’t being literal.

Now, when my iron and my platelets go low, I think of my old words in new ways. Now, even my bone marrow isn’t what is used to be.

I’m entirely who I always was and completely different.

It’s both.

I am more and less of who I was.

My life and days are simple and structured now and also heavy, layered, and complex. Who and what fills my day, by choice and not by choice, is radically different.

Cancer changed my life. That’s irrefutable and will be whether I live or die in the sooner or in the later.

I speak with and interact with doctors, nurses, life insurance and disability insurance and pharmacists more. I spend more money on supplements, clean eating, and make more time to walk, exercise, and sleep. There’s so much less I am capable of.

But sometimes, even without hair, I feel totally like myself.

Sometimes, like this week, my daughter caught me in the middle of life, reading a book, petting the cat, on my bed in my heated infrared sauna blanket. I was relaxed and at ease.

I shared this photo and someone commented on how my “cat scan” was quite feline, – the image brought a whole new meaning to the “cat scan” image.

I laughed and laughed and laughed. I’m still laughing.

In this moment, in many moments, I’m humbled by the enormity of all things cancer and being alive. That’s real. That’s there. It can be intense.

But also, in this moment, I’m laughing.

And laughing, it turns out, is my favorite way to live.

Health Fraud Scam – Be Aware and Careful

Avoiding health care scams can be as simple as not signing blank forms, not providing personal information to unknown parties, and not agreeing to schemes to make money by falsifying paperwork.

Unfortunately, there is a scammer for every medical condition or concern. People who are suffering from conditions like cancer and its harsh treatment regimen may be confused and belittled by persistent phone calls or emails but there are ways to fight back.

How it Works

Healthcare fraud is a way of bilking health insurers or government programs like Medicaid out of money through a system of fake, unnecessary, or inflated bills. An unscrupulous doctor may offer you cash in exchange for your signature on a permission form that will allow him to bill for fake services.

Others, including people who show up at retirement homes or senior activity centers, may offer to provide  a medical “test” of some kind, whether eyesight or hearing, etc. The individual then bills your insurer or Medicaid an exorbitant amount for the useless service – or gets added to your monthly regimen of providers despite the service or monitoring not being necessary. A new wrinkle in this phishing scam are people who offer to provide a “genetic test” using a cheek swab at a healthcare fair, senior center, or other forum, and who have you fill out medical insurance information at the same time. They will then try to bill your insurance for the unnecessary “test” and may pursue you for the cost if your insurance refuses to pay.

Medical equipment, from oxygen tanks to catheters to shower chairs, may be provided by scammers who bill your healthcare insurance despite the item being either unnecessary or absurdly high-price. If you accept medical equipment, be sure it’s recommended by your regular doctor, that it’s necessary, and that you shop around for the best price rather than just signing an authorization that allows the provider to bill any amount.

Home health aides may be assigned to your home and billed to your insurance but never show up to provide a service. Keep an eye on your billing statements to be sure this sort of fraud is not showing up on your account, and call your provider if you see anything suspicious.

How to Avoid Healthcare Scams

To protect yourself from such scams use tools at your disposal, such as reverse email lookup, confirm website addresses and compare them to actual government websites you find on your own, or call your health insurance provider if you’re suspicious about a bill, a caller, or an unwanted package of medical equipment. Here are other tips to follow:

  • Never sign a blank healthcare or medical form that authorizes payment in exchange for a treatment (such as that described above) that was not planned and authorized by your usual medical team.
  • Do not accept unnecessary equipment that you did not order and do not use, like braces, apnea devices, or orthotics.
  • Watch your billing statements for any unauthorized charges, and report any that are unusual.
  • If you think a doctor is doing unnecessary tests or surgeries, get a second opinion. This can be a way to bill for services that you don’t need.
  • Check your billing statements to ensure that the procedures noted are exactly what you received because some scammers are able to change the name of a procedure, such as a biopsy, to collect more money.
  • Providers may also try to “unbundle” procedures and charge more for each step rather than a “package” price. Watch for this more expensive billing practice on your statements.


Related issues

Healthcare can be a confusing part of life to navigate, as many of us have multiple doctors, copayments, coverage issues, deductibles, drug coverage, and more to learn about. Unfortunately there is a scammer looking to work every angle and take advantage of anyone, so beware of the following healthcare related scams:

  • Anyone who calls to tell you it’s necessary to buy a new health insurance card or pay over the phone for a new Medicare card immediately and wants your credit card and/or social security number and personal information (you can call 1-800-MEDICARE to check the person’s identity and validity of their call before providing any information);
  • Confusing medical discount plans with medical insurance – discount plans are “club” like groups that claim to offer discounts on doctor visits, drugs, and medical devices but they are not the same as insurance;
  • If you receive Medicare you do not need additional insurance provided through the Healthcare Marketplace, and anyone who wants to charge you a fee for helping to make a decision about coverage offered through the Healthcare Marketplace is a scammer and should not be given a credit card number, bank transfer, or paid with gift cards, and
  • Anyone who claims to be “from the government” and threatens you with a financial penalty for not being up to date on insurance is a scammer and should not be told any personal information such as social security number (you can call the Federal Trade Commission at 1-877-382-4357 to ask about or report fraudulent schemes).

Learning About Lung Cancer

When it comes to lung cancer, you would be hard-pressed to find someone who didn’t know that it is linked to smoking. If you don’t want lung cancer, you don’t smoke. It’s as simple as that. Or, is it? Smoking is the leading cause of lung cancer, but it is not the only cause. Lung cancer is not a simple disease. Lung cancer is complex and misunderstood and underfunded, and it continues to be the leading cause of cancer death. With the number of lung cancer cases on the rise among people who have never smoked, it’s about time we really get to know lung cancer.

Lung Cancer Overview

Lung cancer is the result of abnormal cells growing out of control in the lungs. It is most often caused by smoking, but it can and does occur in people who have never smoked. People of any age can get lung cancer, but it is most likely to occur in adults in their 60s and 70s. Lung cancer is most successfully treated when found early, but because lungs are large, tumors can grow in them for a long time without being detected. Lung cancer can spread and metastasize to other parts of the body, and once lung cancer has spread, it becomes harder to treat. Cancer can spread through tissue, the lymph system, and blood. If the cancer spreads through tissue it moves to nearby areas. If the cancer spreads through the lymph system and the blood, it metastasizes, forming a tumor (metastatic tumor) in another part of the body. The metastatic tumor is the same type of cancer as the original tumor. So if lung cancer spreads to the liver, it is still lung cancer, not liver cancer, and needs to be treated as such. 

There are two main types of lung cancer: small cell and non-small cell. They are defined by the size of the cells when viewed under a microscope. The two types grow differently and are treated differently. Non-small cell lung cancer is the most common lung cancer, making up 85 percent of lung cancers. Small cell lung cancer makes up the other 15 percent, and it grows quickly. Usually by the time it is diagnosed, it has already spread to other areas of the body.

Non-Small Cell Lung Cancer

There are several types of non-small cell lung cancer, but the three that are most common are adenocarcinoma, squamous cell carcinoma, and large cell carcinoma. The most common in the United States is adenocarcinoma. This cancer starts in the cells that line the part of the lung called the alveoli. The alveoli are very small air sacs that are at the end of the respiratory system, where oxygen and carbon dioxide are exchanged in the bloodstream. The alveoli are balloon-shaped and are in clusters throughout the lungs. There are millions of them in the lungs. Squamous cell carcinoma (also called epidermoid carcinoma) makes up about 25 percent of all lung cancers. It forms in the thin, flat cells that line the inside of the lungs. Large cell carcinoma makes up about 10 percent of lung cancer cases, and it can form in any large cells in the lungs.

The less common types of non-small cell lung cancer are: pleomorphic, which is a rare malignant tumor; carcinoid tumor, a slow growing tumor usually found in the gastrointestinal system, but sometimes found in the lungs; salivary gland carcinoma, a rare cancer that forms in the salivary glands, mostly in older people; and unclassified carcinoma, a tumor that can’t be specified because of an insufficient sample or some other reason.

Non-small cell lung cancer has several stages. The stages are determined by the size of the tumor and whether or not the tumor has spread. Non-small cell lung cancer can also come back after it’s been treated. It can come back in the lungs, but can also recur in other parts of the body. The five-year survival rate for people with non-small cell lung cancer is usually between 11 and 17 percent. 

Small Cell Lung Cancer

The two types of small cell lung cancers are small cell carcinoma, called oat cell cancer, and combined small cell carcinoma. Small cell lung cancers usually grow quickly and are very likely to spread, most often to the liver, brain, bones, and adrenal glands. After diagnosis, most people live for up to one year. Less than seven percent survive five years.

Lung Cancer Risk Factors

Risk factors are things that increase your chances of getting cancer. Some risk factors are things you can control and others are not, but it is important to know your risk so you can help prevent the occurrence of cancer or know if you should be screened. The risk factors for lung cancer are:

Smoking

Most, but not all, cases of lung cancer are caused by cigarette smoking. It is the number one risk factor and when combined with other risk factors, it tends to magnify the risk. Using other tobacco products, such as cigars and pipes, also increases your risk. People who smoke tobacco products are about 15 to 30 times more likely to get lung cancer. Smoking occasionally or a few cigarettes a day also increases the risk. The risk increases the more years you smoke and the more cigarettes smoked each day. Using low-tar or low-nicotine cigarettes does not decrease the risk of lung cancer, but quitting smoking does. People who have quit smoking have a lower risk than if they had continued to smoke, but they still have an increased risk over those who never smoke.

Secondhand Smoke

Secondhand smoke can be just as dangerous as smoking when it comes to lung cancer risk. When you breathe secondhand smoke into your lungs it is just like you are smoking. While the doses are smaller, you are exposed to the same cancer-causing toxins as if you were smoking. 

Radon Gas and Other Substances

Radon is a radioactive, naturally-occurring, colorless, odorless and tasteless gas that causes approximately 20,000 cases of lung cancer each year. Radon often gets trapped in houses and can build up over time. There are other substances, often found in workplaces, that when exposed to them, also put people at risk for lung cancer, including asbestos, arsenic, diesel exhaust, tar and soot, nickel, beryllium, cadmium, and some silicas and chromiums. While these substances can cause lung cancer in those who have never smoked, the risk of lung cancer is higher for people who smoke in addition to being exposed to the substances. Exposure to radiation after an atomic bomb explosion also increases lung cancer risk.

Personal or Family History

People who have a personal or family history of lung cancer are at increased risk. If you have already had lung cancer you are at risk of developing another lung cancer. If you have a close family member with lung cancer, your risk of getting lung cancer is also increased, but that is largely because smoking tends to run in families. Even if you don’t smoke, but live in a home with a smoker, your risk is increased due to secondhand smoke exposure. There is also growing research that shows that genetics could play a role through inherited gene mutations (more about that later).

Radiation Therapy

Patients who have had radiation therapy in their chest to treat certain cancers, such as breast cancer and Hodgkin’s lymphoma, are at higher risk for lung cancer: the higher the dose, the higher the risk. Patients who have received radiation therapy, and who also smoke, have a higher risk than non-smokers. Imaging tests, such as CT scans, also expose patients to radiation and can increase lung cancer risk.

Air Pollution

People who live in areas with higher levels of air pollution have a higher risk of lung cancer. The quality of the air you breathe matters.

Diet

There is not a lot known about how diet affects lung cancer risk, but scientists do know that smokers who take beta-carotene supplements have an increased risk of cancer. Also, people exposed to arsenic in drinking water, often from private wells, have an increased risk of cancer.

HIV

People who have the human immunodeficiency virus (HIV) may have twice the risk of lung cancer than those without HIV. However, because people with HIV have higher smoking rates than people without HIV, it is hard to know whether the increased risk is from the HIV infection or the cigarette exposure.

Preventing Lung Cancer

It is possible to reduce your risk of lung cancer through prevention because so many of the risk factors for lung cancer are environmental or lifestyle-related. The best ways to reduce your lung cancer risk are:

No Smoking

Not smoking is the number one way to prevent lung cancer. People who already smoke can lower their risk by quitting smoking, and smokers who have been treated for lung cancer can reduce their risk of another lung cancer by quitting smoking. The amount your risk lowers when you quit smoking depends on how long and how much you smoked, and the number of years since you quit. The risk of lung cancer decreases 30 to 60 percent after someone has quit for ten years. However, the risk will never be as low as if you had never smoked in the first place.

Reduce Environmental and Workplace Exposure

Laws that help protect workers from exposure to lung cancer causing substances in the workplace can help reduce the risk of lung cancer. In addition, laws that prevent secondhand smoke help lower lung cancer risk. Reducing exposure to radon gas can also reduce the risk of lung cancer. Reducing radon in homes can be done by taking such measures as sealing basements.

There are other means of possibly preventing lung cancer, though there is no clear evidence that they will specifically decrease the occurrence of lung cancer. They include:

Diet

There are studies that show that people who eat large amounts of fruits and vegetables are less likely to get lung cancer than people who eat small quantities. However, studies also show that people who are inclined to eat a lot of fruits and vegetables are less likely to smoke, so it is not known whether the reduced cancer risk is from eating fruits and vegetables or from not smoking. 

Physical Activity

The same is true with physical activity. Studies show that more physically active people are less likely to get lung cancer. However, non-smokers tend to be more physically active than smokers, so it’s hard to tell whether the cancer risk is from the physical activity or from not smoking.

The Role of Genetics

Aside from the environmental risk factors, how can we account for the roughly 20 percent of people who die from lung cancer who are never smokers? Lung cancer in never smokers is on the rise in both the United States and Europe so researchers have started looking more closely at a genetic link to lung cancer. It’s estimated that about eight percent of lung cancers are hereditary. You can’t inherit cancer, but you can inherit a likelihood to get cancer based on the make up of your genes. Most lung cancers occur because of gene mutations that happen during a person’s lifetime, like when they are exposed to carcinogens, such as tobacco smoke or radiation. These are called somatic, and they can’t be passed down through families. However, there are hereditary mutations passed down through families called germline, and having these can increase your risk of getting cancer. Scientists have begun to identify the link between some of the mutations and lung cancer. There is a lot more to learn about the role of genetics in lung cancer, but researchers do know that young women never smokers are the most likely to have lung cancer caused by a genetic predisposition. They also know that people that get cancer as a result of a hereditary mutation are more likely to get non-small cell lung cancer.

Lung Cancer Screening

The best chances of treating many cancers come from early diagnosis and treatment. That is why it is important for people with the highest risk factors to be screened before they have symptoms. People who should be screened for lung cancer are between 55 and 80 years old, currently smoke or quit within the last 15 years, and have a 30 pack year history of smoking. A 30 pack year history means they smoked one pack a day for 30 years or two packs a day for 15 years. Often, by the time someone has lung cancer symptoms, the cancer has already spread. There are three types of screening tests for lung cancer: the low-dose spiral CT scan (LDCT), also called a low-dose helical CT scan, chest X-ray and, sputum cytology, which examines the mucus from the lungs.

Of the three screenings, only the LDCT has shown in a trial that it can decrease the risk of dying from lung cancer. The trial studied heavy smokers, aged 55-74 years, who had smoked at least one pack of cigarettes per day for 30 years or more, and heavy smokers who had quit smoking within the past 15 years. The study found that LDCT screenings were better than chest x-rays at detecting lung cancer in the early stages. The study also showed that LDCT screenings reduced the risk of dying from lung cancer. The study did not find that chest x-ray and sputum cytology screenings decreased the risk of dying from lung cancer. 

While screenings can save lives, there are some risks. It is important to remember that there is no guarantee that finding lung cancer will improve your health or help you live longer. Also, the tests can be wrong. Sometimes cancer that is there won’t be detected; other times screenings can lead to a false alarm that could result in an unnecessary, invasive procedure. Or, screenings can lead to overdiagnosis, which means that cancer cells that may never cause harm to your body and don’t require treatment, get detected. The LDCT scans also expose the patient to radiation. The risks of screening should be considered and discussed with your doctor. Hopefully, in the future there will be better screening methods for lung cancer. There are researchers looking into more effective, less invasive, and less expensive screenings, such as breath and saliva analysis.

Signs and Symptoms

Lung cancer does not always have symptoms and when it does, the symptoms are often very general and similar to things like a respiratory infection, that don’t seem serious. Often, by the time someone has gone to the doctor the cancer has already spread. When this happens, other symptoms beyond what are listed here could be present. However, any symptoms should be checked with your doctor. Lung cancer symptoms include:

  • A cough that doesn’t go away or worsens
  • Chest pain, discomfort
  • Frequent chest infections, such as bronchitis or pneumonia
  • Unexplained headaches
  • Trouble breathing
  • Wheezing
  • Hoarseness
  • Loss of appetite
  • Unexplained weight loss
  • Feeling very tired
  • Trouble swallowing
  • Swelling in the face or the veins in the neck
  • Bone pain
  • Coughing up blood

Lung Cancer Diagnosis

There are several test options used to diagnose lung cancer. Tests can include a physical exam and patient history, lab tests, chest x-ray, CT scan, examination of mucus from the lungs, and thoracentesis, which involves checking for cancer in fluid removed from the lungs.

After initial testing, if cancer is suspected, a biopsy is done. There are several possible types of biopsy, and each individual case will determine which type of biopsy is necessary. The biopsies range in level of invasiveness from insertion of a needle or a scope to surgical procedures and lymph node removal. There are also lab tests used to test for lung cancer. Some lab tests check sample tissue, blood, or body fluids for indications of cancer while others look for cancer markers, called antigens. The markers can sometimes help determine the type of cancer.

Staging Lung Cancer

When lung cancer is diagnosed, then the stage of cancer is determined. The stage is the size of the tumor, and whether the cancer has spread within the lung or in other parts of the body. Sometimes the staging is done during diagnosis, but if not, other tests are used to identify what stage the cancer is in, which helps determine a treatment method. 

Stages of Non-Small Cell Lung Cancer

Non-small cell lung cancer staging is very complex, and many of the stages have several subgroups with specific conditions based on the size of the tumor, whether or not the cancer has spread to the lymph nodes, whether the cancer has spread to the opposite side of the chest from the original tumor, whether or not there are additional tumors, and whether or not the cancer has spread to other parts of the body. A very simplified version of non-small cell lung cancer staging looks like this:

Stage I: The cancer has not spread to the lymph nodes.

Stage II: The cancer has spread to nearby lymph nodes.

Stage III: The cancer has spread to the lymph nodes and other parts of the surrounding area.

Stage IV: The cancer has spread to other parts of the body. 

Stages of Small Cell Lung Cancer

Small cell lung cancer has two stages:

Limited Stage Small Cell Lung Cancer: The cancer is in the lung but may have spread to the area between the lungs or to the lymph nodes above the collarbone. 

Extensive-Stage Small Cell Lung Cancer: – The cancer has spread beyond the lungs to other areas of the body.

Treatment

As with other cancers, lung cancer is often treated with a combination of procedures. There are ten types of standard treatment for non-small cell lung cancer. They include surgery, radiation therapy, chemotherapy, targeted therapy, immunotherapy, laser therapy, photodynamic therapy (PDT), cryosurgery, electrocautery, and watchful waiting. Small-cell lung cancer is treated with 

surgery, chemotherapy, radiation therapy, immunotherapy, laser therapy and endoscopic stent placement. Several different treatment options may be used depending on the type and stage of the cancer. There are four types of surgery used to treat lung cancer. They range from removing a small section of the lung lobe to removing one whole lung. There are, of course, risks and side effects to treatment options that patients should discuss with their doctors, and patients should also be aware of the latest treatment options available. Researchers are always looking for new, more effective treatment options through things like studies and clinical trials.

Clinical Trials

If you are diagnosed with lung cancer, you might want to consider participating in a clinical trial. There are trials available all over the country. Clinical trials help determine whether new treatments may be better than the standard treatments. The trials help to advance the treatment of cancer. Each clinical trial will have its own requirements. There are usually trials available to patients in any stage of treatment. Information about available trials can be found on the National Cancer Institute website, cancer.gov.

Recovery and Survival

The chance of recovery from lung cancer depends on several factors, including the type of cancer, the stage the cancer is in, whether the cancer has spread, whether the patient has signs or symptoms, and the patient’s overall health. However, more than half of people with lung cancer die within a year of diagnosis. This is likely because only 16 percent of lung cancers are diagnosed at an early stage. The lung cancer five-year survival rate is 18.6 percent, which is much, much lower than other cancers, such as colorectal cancer, which has a five-year survival rate of 64.5 percent. The breast and prostate cancer survival rates are even higher.

Lung Cancer Stigma

There are some that believe that lung cancer survival rates are so much lower than other cancers because of a stigma attached to the disease. When it comes to lung cancer, people tend to assume that it is a self-inflicted disease. The stigma can affect patient care and funding which could lead to advances in research. Some patients have reported feeling guilt and shame for having lung cancer, and some said that they delayed seeing their doctor about their lung cancer symptoms because of the stigma attached. Other research has shown that when patients do seek treatment, some doctors were less likely to refer the patients for further treatment if they had lung cancer rather than another cancer. Funding is also negatively affected by the stigma. Despite lung cancer killing more people than breast, prostate and colon cancers combined, federal and private funding are both way behind what other cancers receive for research. Only six percent of the federal money spent on cancer research is spent on lung cancer.

There is evidence that the lung cancer stigma is starting to change, as are the cases of lung cancer. With 60 to 65 percent of all new lung cancer cases being diagnosed in people who have never smoked or are former smokers, lung cancer can no longer be considered a simply a smoker’s disease.


Sources

“What is Lung Cancer?” Centers for Disease Control and Prevention, September 18, 2019, https://www.cdc.gov/cancer/lung/basic_info/what-is-lung-cancer.htm. Accessed February 26, 2020.

“What are the Risk Factors for Lung Cancer?” Centers for Disease Control and Prevention, September 18, 2019, https://www.cdc.gov/cancer/lung/basic_info/risk_factors.htm. Accessed February 26, 2020.

“Lung Cancer—Patient Version” National Cancer Institutehttps://www.cancer.gov/types/lung. Accessed February 26, 2020.

“Patient and Physician Guide: National Lung Screening Trial (NLST)” National Cancer Institutehttps://www.cancer.gov/types/lung/research/nlststudyguidepatientsphysicians.pdf. Accessed February 26, 2020.

Eldridge, Lynne. “Function and Disorders of the Alveoli: Minute Structures of the Lung Vital to Respiration” Verywell Healthhttps://www.verywellhealth.com/what-are-alveoli-2249043. Accessed February 26, 2020.

“Lung Cancer” HealthLinkBC, December 19, 2018, https://www.healthlinkbc.ca/health-topics/hw183816. Accessed February 26, 2020.

Nall, Rachel. “What to Know About Lung Cancer” Medical News Today, November 16, 2018, https://www.medicalnewstoday.com/articles/323701#what-is-lung-cancer. Accessed February 26, 2020.

Eldridge, Lynne. “Relation, Heredity, and Other Genetic Factors for Lung Cancer: How Family History Affects Lung Cancer Risk” Verywell Health, updated September 23, 2019, https://www.verywellhealth.com/is-lung-cancer-inherited-2248975. Accessed February 26, 2020.

Kanwal, Madiha, Ding, Xiao-Ji, Cao, Yi. “Familial Risk for Lung Cancer (Review)” Spandidos Publications, December 20, 2016, https://www.spandidos-publications.com/10.3892/ol.2016.5518. Accessed February 26, 2020.

“Lung Cancer” American Lung Association, updated September 25, 2019, https://www.lung.org/lung-health-and-diseases/lung-disease-lookup/lung-cancer/resource-library/lung-cancer-fact-sheet.html. Accessed February 26, 2020.

“Types and Staging of Lung Cancer” Cancer Care, https://www.lungcancer.org/find_information/publications/163-lung_cancer_101/268-types_and_staging. Accessed February 26, 2020.

Eldridge, Lynne. “Understanding the Stigma of Lung Cancer” Verywell Health, December 1, 2019, https://www.verywellhealth.com/the-stigma-of-lung-cancer-2249236. Accessed February 26, 2020.

Hamann, Heidi A., Ostroff, Jamie S., Marks, Emily G., Gerber, David E., Schiller, Joan H., Craddock Lee, Simon J. “Stigma Among Patients with Lung Cancer: A Patient-Reported Measurement Model” National Center for Biotechnology Information, January 1, 2015, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3936675/. Accessed February 26, 2020.

PDQ® Screening and Prevention Editorial Board. PDQ Lung Cancer Prevention. Bethesda, MD: National Cancer Institute. Updated June 19, 2019. Available at: https://www.cancer.gov/types/lung/patient/lung-prevention-pdq. Accessed February 26, 2020.

PDQ® Screening and Prevention Editorial Board. PDQ Lung Cancer Screening. Bethesda, MD: National Cancer Institute. Updated May 10, 2019. Available at: https://www.cancer.gov/types/lung/patient/lung-screening-pdq. Accessed February 26, 2020.

PDQ® Adult Treatment Editorial Board. PDQ Non-Small Cell Lung Cancer Treatment. Bethesda, MD: National Cancer Institute. Updated October 16, 2019. Available at: https://www.cancer.gov/types/lung/patient/non-small-cell-lung-treatment-pdq. Accessed February 26, 2020.

PDQ® Adult Treatment Editorial Board. PDQ Small Cell Lung Cancer Treatment. Bethesda, MD: National Cancer Institute. Updated October 16, 2019. Available at: https://www.cancer.gov/types/lung/patient/small-cell-lung-treatment-pdq. Accessed February 26, 2020.

Diana’s Story: How Connecting with Another Head and Neck Cancer Patient Saved My Life

Diana’s Story: How Connecting with Another Head and Neck Cancer Patient Saved My Life from Patient Empowerment Network on Vimeo.

After Diana’s cancer diagnosis, she was told that she had only months to live. But, after meeting fellow head and neck cancer patient Sajjad Iqbal online, Diana’s path changed dramatically and she is now cancer-free. Hear their inspiring story about the power of connecting with other patients.


Transcript:

Sajjad:                        

My name is Sajjad Iqbal. I am a physician and also a cancer patient. I have the honor of serving on the board of Patient Empowerment Network.

Diana:                         

I’m Diana Craig from Auckland, New Zealand.

Sajjad:                        

I was diagnosed with a gland cancer, which is a salivary gland, on the left side of the face. The actual histology was a salivary duct carcinoma. It was diagnosed in February of 2002.

Diana:                         

In January of 2018. I was diagnosed with squamous cell carcinoma HPV 16 on my tonsil and soft palate.

Sajjad:                        

I do a lot of counseling for the cancer patients and mentoring and advocating and all that. And as a part of that, I have joined a head and neck cancer support group, which is based in New Zealand. It’s on Facebook. And there are some great people there who advise together cancer patients. Diana posted a cry for help back in May of this year, May of 2019, where she was just given the news that her cancer had recurred in her lungs and near her trachea. And her oncologist gave her a very grim prognosis and he thought that the medication had a very small chance of success.  

And he told Diana she had a few months to two years to live. Diana was devastated. She posted on that Facebook group, and I reached out to her to introduce myself, to tell her how I have managed my own cancer, and I told her that I could try to help her if she would be willing to share the information with me.

Diana:                         

Initially, I hadn’t heard of him before.

And I felt I needed to do some research, and I was told by everybody what a good guy he is, and to absolutely go down that road. So, I happily gave my information and certainly after the first conversation or interaction with him, I knew I was in good hands. Very much so. It was, to me, I used to call him my angel, my guardian angel, because I really felt safe and informed and encouraged. And his mantrais hope and determination and that is such a valid mantra when you go through cancer.

And it’s something that I said to myself oftentimes because it was so poignant, and it’s everything that you have to be and do to empower yourself and to be proactive, to find the best possible outcome for yourself.

Sajjad:                        

You know, as you know, I have written a book about my amazing cancer journey. The book is called Swimming Upstream. And a lot of other people have found it very inspirational. So, my story was not a whole lot different from Diana in this respect: that I was given a very grim prognosis back in 2002.

I was told that I had less than 30% chance of surviving for two years and I was also told that there was no five-year survivors with this cancer. And I made it my goal to beat the odds. And I used to say that in that case, I’ll be among the 30% and if no one has survived five years, well, I’ll be the first one. So, the hope and determination that Diana just mentioned, that’s my motto. Hope and determination. And I tried to instill that in Diana.

Diana: 

It certainly empowered me or put me in the right direction as to, I mean, I like to be moving, I like to be able to fight the fight if I know where to fight to. And also, know what questions to ask. I mean, when you’re in that situation, you are told how it is. And you don’t know what you don’t know. And unless you’ve been informed by somebody else or do the research yourself, and even then, that’s pretty dubious, because you stumble across information that you don’t want to know, and a lot of it’s scare tactics. But with his knowledge, with his background, with his first-hand experience of going through what we have gone through, gave me the confidence to do everything that he said.

Sajjad:                        

And I always recommend to my friends, other patients, that going to your oncologist about the cancer treatment is so much different than going to a doctor for your blood pressure or your bronchitis or so on.

This is an area where we need to be fully prepared. We need to go in and have a dialogue with our doctors who are treating our cancer and this is a matter of life and death. Literally, life and death. So, there is no room for just sitting there passively and just listening to everything and agreeing to everything. We must ask a lot of questions to our doctor. They should be, not only willing to answer our questions, but they should be welcoming our questions. So, if a doctor does not welcome your questions, does not give you plenty of time, does not explain everything that he or she wants to do, then that’s not the right doctor for you. And you’ve got to move on, and quickly.

Diana:                         

Where would I be without meeting Sajjad? I would have no hair at this point. I would be in the middle of chemo and probably K-truda. I don’t believe that I would have such a radical improvement so quickly. Because mine had gone after three infusions, which is nine weeks. So, I floundered the first time because I felt like I needed the help and I couldn’t get any. And the last time, I felt so much more in control, and anybody would think I’m a control freak. And let me tell you, I’m not. At all.

And also, being on my own, as well, I didn’t have a partner there to talk to. It was heaven-sent. And I said to him, “If I come out okay, I’m going to come and see you.” And here I am. Coming to see you. Because it meant so much to me. It really meant so much to me. It really did.

Sajjad:

Yes, it did.

The medical science is moving at an astonishing pace to find new medicine, new modalities, to treat cancer. We cannot be  – the patient must not get bogged down in the statistics of, oh you have this percent chance of survival, or this percent chance of death. Because those numbers don’t mean anything anymore. They’re old numbers. And to fight the cancer, we need our immune system to be involved in the fight.

If we get depressed, if we lose all the hope, the immune system shuts itself down, and that helps the cancer. So, number one thing is to always have hope. Always remain optimistic. And number two is determination. You determine that you are going to fight this and you are going to survive. And then, having those two tools at your disposal, become the empowered patient. Learn as much as you can about your cancer. Talk to other people, go to the support groups. And, again, let me plug Patient Empowerment Network. Go to our website, learn about the cancer. Then go to your doctor and question them and find out how you can improve your treatment. And that’s the way you fight cancer.

What Is A Breast Bioposy?

A breast biopsy is a test that removes tissue or sometimes fluid from the suspicious area. The removed cells are examined under a microscope and further tested to check for the presence of breast cancer. A biopsy is the only diagnostic procedure that can definitely determine if the suspicious area is cancerous.

The good news is that 80% of women who have a breast biopsy do not have breast cancer.

There are three types of biopsies:

  • Fine-needle aspiration
  • Core-needle biopsy
  • Surgical biopsy

The latter two are the most commonly used on the breast.

There are several factors that help a doctor decide which type of biopsy to recommend. These include the appearance, size, and location of the suspicious area on the breast. Before discussing biopsy results, let’s first distinguish between the three types of biopsies.

What is fine-needle aspiration?

In most cases, a fine needle aspiration is chosen when the lump is likely to be filled with fluid. If the lump is easily accessible or if the doctor suspects that it may be a fluid-filled cystic lump, the doctor may choose to conduct a fine-needle aspiration (FNA). During this procedure, the lump should collapse once the fluid inside has been drawn and discarded. Sometimes, an ultrasound is used to help your doctor guide the needle to the exact site, whereby sound waves create a picture of the inside of the breast.

If the lump persists, the surgeon or radiologist, a doctor who specializes in medical imaging such as x-rays and mammograms, will perform a fine needle aspiration biopsy (FNABx), a similar procedure using the needle to obtain cells from the lump for examination.


What is a core-needle biopsy?

Core needle biopsy is the procedure to remove a small amount of suspicious tissue from the breast with a larger “core” (meaning “hollow”) needle. It is usually performed while the patient is under local anesthesia, meaning the breast is numbed. During the procedure, the doctor may insert a very small marker inside the breast to mark the location of the biopsy. If surgery is later required, the marker makes it easier for the surgeon to locate the abnormal area.

The radiologist or surgeon performing the core-needle biopsy may use specialized imaging equipment to guide the needle to the desired site. As with fine-needle aspiration, this may involve ultrasound.

During an ultrasound-guided core needle biopsy, the patient lies down while the doctor holds the ultrasound against the breast to direct the needle. On the other hand, during a stereotactic-guided core-needle biopsy, the doctor uses x-ray equipment and a computer to guide the needle. Typically, the patient is positioned lying on the stomach on a special table that has an opening for the breast, and the breast is compressed, similar to a mammogram.

Occasionally, no imaging equipment is used, but this is typically only in cases where the lump can be felt through the skin. This type of procedure is called a freehand core-needle biopsy.

There are fewer side effects associated with a core-needle biopsy than with surgical biopsy.

What should I expect from a surgical biopsy?

(Also known as “wide local excision,” “wide local surgical biopsy,” “open biopsy,” or “lumpectomy”)

As with a core-needle biopsy, a surgical biopsy is done while the patient is under local anesthesia. Typically, this test is performed in a hospital setting where an IV and medications are administered to make the patient drowsy.

The surgeon makes a one- to two-inch cut on the breast and then removes all or part of the abnormal lump and often a small amount of normal-looking tissue, known as the “margin.” If the lump cannot be easily felt but can be seen on a mammogram or ultrasound, a radiologist may insert a thin wire to mark the suspicious spot prior to the surgeon performing the biopsy. Once again, a marker is usually placed internally at the biopsy site at the conclusion of the procedure.


What Can Be Learned From The Biopsy Results?

Once the biopsy is complete, a specially trained doctor called a pathologist examines the tissue or fluid samples under a microscope, looking for abnormal or cancerous cells. The pathology report, which can take one or two weeks to complete, is sent to the patient’s doctor. It indicates whether the suspicious area is cancerous and provides a full picture of your situation. For the patient, waiting for results can be a real challenge, but being able to make an informed decision regarding your treatment is well worth it. Your doctor will go over the report with you and, if necessary, discuss the treatment options.

If no cancer cells are found, the report will indicate that the cells in the lump are benign, meaning non-cancerous. However, some type of follow-up or treatment may still be needed, as recommended by the healthcare professional.

If cancer cells are found, the report will provide more information to help determine the next steps.

The report for a core-needle biopsy sample will include tumor type and the tumor’s growth rate or grade. If cancer is found, the pathologist will also perform lab tests to look at cells for estrogen or progesterone receptors.

In the case of a surgical biopsy, the results reveal data about the type, grade, and receptor status of the tumor, as well as the distance between the surrounding normal tissue and the excised tumor. The margin, as we mentioned earlier, shows whether the site is clear of cancer cells.

A positive margin means cancer cells are present at the margin of the tumor. In cases of positive margins, the cancer has spread beyond the immediate area.

A negative margin or clear margin indicates there are no tumor cells at the margin. That means the cancer is contained in the area nearest to the tumor.

A close margin means that the space between the cancerous tissue and surrounding normal tissue is less than about 3 millimeters (0.118 inch).

If you have a biopsy resulting in a cancer diagnosis, the pathology report will help you and your doctor talk about the next steps. You will likely be referred to a breast cancer specialist, and you may need more scans, lab tests, or surgery. Your medical team uses the pathology report and the results of the other tests to determine the stage of cancer and to design the best treatment plan for you.


Material on this page courtesy of:


Related reading:

Artificial Intelligence in Healthcare

Ready for its closeup, or not ready for primetime?

Headlines about the advent of artificial intelligence, AI, in pretty much every sector of human life or enterprise seem to be a daily occurrence. Other phrases that get thrown around in stories about AI are machine learning, deep learning, neural networks, and natural language processing.

Here’s a handy list, from the transcription company Sonix, which uses some of these AI tools to drive their service:

  • Artificial Intelligence (AI) –the broad discipline of creating intelligent machines
  • Machine Learning (ML) –refers to systems that can learn from experience
  • Deep Learning (DL) –refers to systems that learn from experience on large data sets
  • Artificial Neural Networks (ANN) –refers to models of human neural networks that are designed to help computers learn
  • Natural Language Processing (NLP) –refers to systems that can understand language
  • Automated Speech Recognition (ASR) –refers to the use of computer hardware and software-based techniques to identify and process human voice

A lot of the stories I see about AI are focused on how it might impact, improve, or otherwise influence healthcare. Depending on who you listen to, it sounds like AI is already diagnosing cancer successfully – here are two pieces, from science savvy sources, on how that’s working, “AI is already changing how cancer is diagnosed” from The Next Web, and “AI matches humans at diagnosing brain cancer from tumour biopsy images” from New Scientist, for your reading pleasure.

As aspirational as the idea of AI in healthcare is, and despite the fact that it’s showing some promise in cancer diagnosis, I’m not thinking that it’s time for the champagne, balloons, and glitter … yet.

One of the biggest barriers to AI is the same barrier everyone – on both sides of the stethoscope, and all the way up to the c-suite – in healthcare confronts daily: data access and liquidity. Data fragmentation is rife across the entire healthcare landscape, with EHR systems that don’t talk to each other well (if at all), and insurers unwilling to open their datasets to anyone under cover of “trade secrets.” In “The ‘inconvenient truth’ about AI in healthcare” in the journal Nature, the authors (British, so this is not just an American problem) point out that, “Simply adding AI applications to a fragmented system will not create sustainable change.” Healthcare systems may be drowning in data (they are), but tools to parse all those data lakes into actionable insights aren’t able to bust the dams holding in that data.

Access is one barrier. Another is the ethics of using AI in healthcare. The American Medical Association’s Journal of Ethics devoted an entire edition to that issue in February 2019, with AMA J Ethics editor Michael J. Rigby calling for deeper discussions about preserving patient preferences, privacy, and safety before implementing AI technology widely in healthcare settings. He particularly notes the impact AI could have in medical education, with medical education being shifted from a focus on absorbing and recalling medical knowledge to a focus on training students to interact with and manage AI-driven machines; this shifting would also require attention to the ethical and clinical complexities that arise when humans interact with machines in medical settings.

AI, across all uses, but particularly in healthcare, has to take a long, hard look at how bias can spread algorithmically, once it’s baked into the code that’s running the machines. There are data scientists doing bias detective work, but will the detectives be able to prevent bias, or just bust perpetrators once the biased outcomes appear?  Stay tuned on that one.

Is there an upside to AI in healthcare? Absolutely, *if* the ethical issues on privacy and error prevention, and the practical issues on data access, are addressed. AI could pave the way to fully democratizing information, both for patients and front-line clinicians. It could liberate all clinicians from data-input drudgery, or “death by a thousand clicks.” The Brookings Institution has a solid report, “Risks and remedies for artificial intelligence in health care,” as part of its AI Governance series, that breaks down the pros and cons.

Circling back to the question in the headline, is AI in healthcare ready for primetime? This person’s answer: it depends. I think that rigorous study, in the development of AI in medicine and its use in the healthcare system, is required as an ongoing feature of AI tech used in human health. Upside there? A whole new job classification: AI oversight and management.

Cancer Awareness Calendar 2020

January

Cervical Cancer Awareness Month

Blood Donor Month


February

National Cancer Prevention Month

Gallbladder and Bile Duct Cancer Awareness Month

World Cancer Day (February 4, 2020)

National Donor Day (February 14, 2020)

Rare Disease Day (February 29, 2020)


March

Colorectal Cancer Awareness Month

International Women’s Day (March 8, 2020)

Triple-Negative Breast Cancer Day (March 3, 2020)

Kidney Cancer Awareness Month

Multiple Myeloma Awareness Month

Anal Cancer Awareness Day (March 21, 2020)


April

National Cancer Control Month

Esophageal Cancer Awareness Month

Minority Cancer Awareness Month

Minority Health Month

National Oral, Head, and Neck Cancer Awareness Week

Testicular Cancer Awareness Month

World Health Day (April 7, 2020)


May

Bladder Cancer Awareness Month

Brain Tumor Awareness Month

Cancer Research Month

Clinical Trial Awareness Week

Melanoma and Skin Cancer Awareness Month

Melanoma Monday (May 4, 2020)

Women’s Check-up Day (May 11, 2020)

Women’s Health Week (May 10−16, 2020)

Skin Cancer Detection and Prevention Month


June

Cancer Survivors Month

Cancer Survivors Day (June 7, 2020)

Men’s Health Week (June 10−16, 2020)


July

UV Safety Awareness Month

Sarcoma and Bone Cancer Awareness Month


 August

Summer Sun Safety Month

World Lung Cancer Day (August 1, 2020)


September

Childhood Cancer Awareness Month

Uterine Cancer Awareness Month

Gynecologic Cancer Awareness Month

Blood Cancer Awareness Month

MPN Awareness Day (September 10, 2020)

Ovarian Cancer Awareness Month

Prostate Cancer Awareness Month

Take a Loved One to the Doctor Day (September 15, 2020)

Thyroid Cancer Awareness Month


October

Breast Cancer Awareness Month

National Mammography Day (October 16, 2020)

Liver Cancer Awareness Month


November

Lung Cancer Awareness Month

National Family Caregiver Month

Carcinoid Cancer Awareness Month

Neuroendocrine Tumor (NET) Awareness Day (November 10, 2020)

Pancreatic Cancer Awareness Month

Stomach Cancer Awareness Month

How to Boost Fitness During and After Cancer Treatment

Exercise is considered an important additional therapy during and after cancer treatments, according to Harvard Health. While some cancer patients may not feel well enough to work out, others will have the capacity to exercise at home. Cancer treatments vary widely, from chemo to surgery to targeted drug therapy and beyond, so every cancer patient is different. If you want to exercise, speak to your oncologist and find out how mild, moderate or strenuous your workouts can be. In certain cases, exercise may need to be postponed until later on in recovery. If you do get the ‘all clear’ to exercise, these techniques can boost your fitness and speed up the pace of your physical rehabilitation.

Try restorative yoga at home

A study published in the Archives of Physical Medicine and Rehabilitation showed that females with Stage II breast cancer benefited from regular exercise, as it helped them to sleep better, elevate their moods, access more energy, and feel stronger. The advantages of regular physical activity for cancer patients (and for those recovering from cancer) are conclusive. The benefits have been established via a host of peer-reviewed studies, including the breast cancer patient study mentioned here. One easy way to begin is by learning five or six restorative yoga poses and holding them for about five minutes each. You should be able to find apps, streaming video and other instructional tools which help you to master restorative yoga moves at home. For best results, invest in a few bolsters and blocks that help you to achieve correct form without physical strain.

Use exercise machines to build strength

If you’ve lost strength due to cancer treatment and you want to feel stronger, using home exercise machines will be a great way to rehabilitate your body. Investing in equipment like an elliptical or stationary bike are two potentially low-pressure machines that offer the opportunity for a solid workout from home. Another scenario is that you’ve gained weight during treatment and want to lose it. With cancer treatment, weight loss is more common than weight gain, but some people do put on pounds. Home exercise machines, such as elliptical machines or rowing machines, offer cardio workouts that boost healing blood flow, burn calories and tone muscles. If you’re just getting back to exercise, start with brief workouts a few times a week and build up to half an hour of exercise four times a week. You’ll love what these workouts do for your body and your mood.

Do a little gardening

If you want to get active at home, why not take up gardening during or after cancer treatment? If you have a yard to garden in, you’ll find that being outside, among green grass and flowers, is very relaxing. If you don’t have access to a yard, do a little container gardening on a patio or start an herb garden in your kitchen. Gardening promotes heart health and relieves stress. It also gives a sense of accomplishment that’s very fulfilling. Participating in nature is inspiring and some types of gardening require plenty of physical activity, including crouching, arm movements and lifting.

Exercise is advantageous to most cancer patients and people who have recovered from cancer. Adding physical activity to your routine during this time in your life will give you strength and help you to cope with the strain, allowing you to feel powerful again.

How Leukemia is Diagnosed

Introduction to Leukemia

Cancer and neoplastic lesions are affecting our lives every day. Nearly 40% of the world’s population is affected by cancer—irrespective of age, gender, and ethnicity. Equally detrimental to cancer’s physical manifestations are the psychological influences. However, medical advancement and new research are helping to to combat this life-threatening disease.

Of all the cancers of the body, the most treacherous is Leukemia. It is a cancer of blood cells. Humans have three kinds of blood cells: red blood cells, white blood cells, and platelets. Leukemia involves the malignant proliferation of white blood cells (WBC).

Our white blood cells are major components of our body’s defense mechanism. They play a vital role in fighting against diseases, whether bacterial, viral or fungal in nature. They originate within the bone marrow, spleen and lymph nodes.

A person suffering from Leukemia has poor white blood cell functioning. WBCs start to divide abnormally eventually outgrowing the normal number of cells.

Leukemia has 4 types:

  1. Acute Myelogenous Leukemia (AML)
  2. Chronic Myelogenous Leukemia (CML)
  3. Acute Lymphocytic Leukemia (ACL)
  4. Chronic Lymphocytic Leukemia (CLL)

1. Acute Myelogenous Leukemia (AML)

Acute Myelogenous Leukemia is a heterogeneous clonal disorder. It is characterized by immature myeloid cells and bone marrow failure. It commonly affects children and adults. Studies have suggested the disease arises from recurrent hematopoietic stem cell genetic alterations.

2. Chronic Myelogenous Leukemia (CML)

Chronic Myeloid Leukemia is a myeloproliferative (slow-growing blood cancer) disorder characterized by the existence of a balanced genetic translocation of chromosomes 22 and 9. It mostly affects adults. CML consists of 3 distinct phases: chronic, accelerated, and blast phases.

The history of patients with CML shows 3-5 years of chronic stage proceeding to a fatal blast phase and then progressing to an accelerated phase.

3. Acute Lymphocytic Leukemia (ALL)

Acute Lymphocytic Leukemia is the second most common Leukemia occurring in adults. Like other Leukemias, ALL’s pathophysiology is also based on chromosomal abnormalities and genetic alterations which happen to take place in differentiation and proliferation of lymphoid precursor cells present in the bone marrow and blood. In adults, the precursors of B- lymphocytes are greater in number than the malignant T- lymphocytes.

4. Chronic Lymphocytic Leukemia (CLL)

Chronic Lymphocytic Leukemia is a tumor of CD5+ B cells that characterizes the deposition of tiny, mature lymphocytes in the blood, bone marrow and lymphoid tissues. Apart from the CD5 cells, other genetic alterations are involved in the pathogenesis of Chronic Lymphocytic Leukemia. Stromal cells, T cells and nurse-like cells in the lymph nodes also predominate.

Causes and risk factors for Leukemia

Although the exact cause of Leukemia is unknown, certain risk factors can contribute to making a person susceptible to it. These include radiation, viruses, exposure to benzene, smoking, genetics, and family history.

1. Ionizing radiations

Exposure to ionizing radiation comes from continuous radiation therapy for treating any pre-existing cancer. Prolonged exposure to X-rays is found mostly in people who work as radiologists and are exposed to persistent radiation. Patients who have received chemotherapy sessions for cancers are also prone to Leukemia. Ionizing radiations damage the DNA and result in the defective genetic makeup of stem cells.

2. Viruses

The Human T-lymphotropic Virus (HTLV-1) has been shown to have an association with Leukemia.

3. Exposure to benzene

Benzene is a toxic solvent used in cleaning chemicals and some hair dyes. Benzene’s toxic effects on the blood and bone marrow include increasing the risk of Acute Myeloid Leukemia (AML), myelodysplastic syndrome, and other hematological malignancies, such as non-Hodgkin’s lymphoma.

4. Smoking

Smoking is not only detrimental for the lungs alone but for the entire body. Although the link between smoking and Leukemia is unclear, studies say it can affect the bone marrow and increase the chances of AML in young adults.

5. Genetic conditions

Chromosomal abnormalities are also responsible for increasing Leukemia susceptibility. Examples include Down syndrome, Klinefelter syndrome, Fanconi anemia, Li-Fraumeni syndrome, Bloom syndrome, Ataxia-telangiectasia, and neurofibromatosis, to name a few.

6. Hereditary

The most common cause of Leukemia is family history. If any family member has had Leukemia it increases the risk for other blood relatives.

Signs and symptoms of Leukemia

The signs and symptoms of Leukemia vary with different forms. They are generally nonspecific and warrant investigations for proper diagnosis.

Acute Myeloid Leukemia (AML)

The signs and symptoms of AML are:

  • Fever
  • Pain in bones and joints
  • Pale skin
  • Easy bruising and contusions
  • Recurrent infections
  • Unusual bleeding, epistaxis, bleeding gums

Chronic Myelogenous Leukemia (CML)

The signs and symptoms of CML are:

  • Fatigue and muscle weakness
  • Shortness of breath
  • Pyrexia
  • Increased sweating mostly during the night
  • Cachexia (weight loss)
  • Abdominal discomfort secondary to spleen enlargement
  • Stomach bloating
  • Itching
  • Pain in joints and bone

Acute Lymphocytic Leukemia (ALL)

The signs and symptoms of ALL are:

  • Joint pain and muscle fatigue
  • Fever
  • Frequent infections
  • Epistaxis (Nose bleed)
  • Lumps felt around the neck, groin and underarms as a result of lymph node swelling.
  • Pale skin
  • Shortness of breath

Chronic Lymphocytic Leukemia (CLL)

The signs and symptoms of CLL are:

  • Nocturnal sweating
  • Fever
  • Recurrent infections
  • Fatigue and constant tiredness
  • Cachexia
  • Loss of appetite
  • Stomach bloating as a result of splenomegaly (enlarged spleen)
  • Shortness of breath
  • Pea-sized swelling or lumps in groin, neck or armpits.

Diagnosis of Leukemia

Early detection can prevent complications. The earlier the diagnosis the easier treatment is. Medical advancement has made diagnosis easier than ever before. Some of the essentials to reach an accurate and precise diagnosis are enlisted below.

History and examination

A proper and detailed history is the key to an ideal diagnosis. It involves asking relevant questions related to the signs and symptoms that can link to the suspected disease.

Your physician might ask the following questions:

  1. How long have you been feeling a fever?
  2. What is the temperature?
  3. Do you feel a loss of appetite?
  4. Have you experienced prolonged bleeding after a cut?
  5. Have you noticed any changes in weight recently?
  6. When did you notice lumps?
  7. Are these lumps felt, painful and movable?
  8. Did you feel the lumps gradually increasing in size?
  9. Do you face difficulty in breathing?
  10. Do you feel you sweat a lot while sleeping?
  11. Are you taking any medications?
  12. Have any of your family members had any diseases?
  13. When did you feel the need to visit the physician?

The answer to the above questions can lead to the next step, investigations.

Investigations for Leukemia

Investigations are the major component involved in diagnosis as they make the suspected disease clear to understand. These include blood tests, radiology and biopsy.

1. Blood tests

  • Complete Blood Count (CBC)
  • White Blood Cell (WBC) differential
  • Blood smear
  • Tumor markers
  • Cerebrospinal fluid (CSF) analysis
  • BCR ABL1
  • Genetic tests for targeted cancer therapy
  • Chromosome analysis

The most commonly used test is the Complete Blood Count (CBC) which shows a clear picture of the abnormal growth of red blood cells, white blood cells and platelets.

2. Radiology

The excessive proliferation of the cells in the bone marrow leads to marrow expansion and invasion of the cortex which, in later stages, can be seen by radiographic studies. A simple X-ray can reveal any spot bone changes. In some circumstances, a CT-scan may be needed to extensively study the disease and prognosis.

X-ray findings may include:

  • Osteolytic lesions; most commonly seen in Acute Lymphocytic Leukemia seen in small and flat bones, metaphysis of long bones.
  • Metaphyseal bands (classical Leukemia lines)
  • Bone destruction
  • Some pathological fractures
  • Radiological lesions, in later cases, are seen in the form of vertebral collapse, osteolysis of bones and avascular osteonecrosis.

3. Bone marrow biopsy

This is the gold standard investigation to diagnose Leukemia. This invasive procedure is done after the suspicion of Leukemia or when the blood test reports point to a Leukemic picture.

The procedure involves the removal of a small sample of bone marrow from the hipbone. A long, thin is the needle is used to extract the bone marrow. Once the sample has been taken it is sent to the laboratory where the histopathologists study the tissue microscopically.

Prior to examining the histopathologist or the lab technician prepares a slide. During the process, the specimen is then cut into thin slices. The sectioned structure is dyed using different dyes. The dye discriminates against the parts of the cells. The section is then placed on a glass slide and then covered with a slip on the top to keep the specimen intact. The slide is now ready to be placed under the microscope.

The samples examined under the microscope are then studied based on the type of cells, how the cells are arranged, whether the cells are normal or abnormal etc.

The microscopic findings may reveal:

  • Acute Myeloid Leukemia

Increase in bone marrow cellularity, consisting of granulocytic or monocytic forms a number of erythroid precursors

  • Acute Lymphocytic Leukemia

Hypercellular bone marrow with multiple tightly packed lymphoblasts that have undetectable cytoplasm, round irregular shape, divided nuclei, and dispersed chromatin. The bone marrow has B and T lymphoblasts with indistinguishable morphology along with necrosis in some areas.

Treatment for Leukemia

Treating Leukemia challenges all medical practitioners. Its success and failure solely depend on the extent of the disease and how far has it spread within the body.

Following are treatment options that can help fight Leukemia.

1. Chemotherapy

Chemotherapy is the use of anticancer drugs to kill or halt the proliferation of cancer cells. Generally, chemotherapy is administered orally or intravenously. In some patients, the chemotherapeutic agent is given intrathecally, i.e., injected into the CSF (cerebrospinal fluid) that bathes the brain and spinal cord. This is done after performing a lumbar puncture and injecting chemotherapeutic drugs, such as methotrexate. The course is usually repeated every three weeks.

2. Radiotherapy

Compared to chemotherapy that attacks all the cells of the body, including the healthy ones, radiotherapy is a localized treatment regimen. High ionizing-energy radiation emits to destroy cells that have an increased proliferation rate. Radiotherapy can either be given to cure the disease (therapeutic) or to improve the signs and symptoms encountered during the disease course (palliative).

3. Stem cell or bone marrow transplantation

Transplants are widely used in management and treatment of the disease. Bone marrow is transplanted from a patients’ family member, or another person who bears the same type of bone marrow, into the diseased person. The survival rates vary with different factors but the cost and affordability remain the major concern in this treatment modality.

4. Immune therapy

Immune therapy is another set of treatments that has some promising result in managing Leukemia. The immune therapy works by promoting the immune cells of the body to fight against cancer cells. One of the successful regimens in immune therapy is Gleevec, commonly given in Chronic Myeloid Leukemia. CML patients live a long, symptomless life with the daily oral administration of this drug.

Complications with Leukemia

Though Leukemia is curable, treatments may give rise to certain complications–basically the body’s response to the treatment given. The complications mostly arise from chemo and radiation.

They can include:

  • Anemia
  • Skin rashes
  • Altered taste sensations
  • Soreness of the mouth and throat
  • Liver dysfunction
  • Hair loss
  • Diarrhea
  • Fatigue
  • Bleeding
  • Fertility problems
  • Nausea and vomiting
  • Neurological effects
  • Impaired sexual activity

Relapse of the disease may also occur after some years.

Conclusion

The prognosis of Leukemia depends on how far has the disease has spread but the medical advancement has brought in new regimens that can now treat Leukemia at any stage. A person suffering from Leukemia and undergoing its treatment should be dealt with love, care, and pampering

How to help prevent Leukemia

Informational campaigns and awareness programs help people learn about the risk factors of Leukemia. Family members of Leukemia patients should undergo blood screenings to see if they have been affected. A good diet can help improve health status. Limiting use of benzene-infused chemicals can also make the disease less susceptible. Ceasing tobacco smoking can also help keep Leukemia at bay.

 

References

Acute Lymphoblastic Leukemia

Leukemia: an overview for primary care

Acute Myeloid Leukemia: diagnosis and management based on current molecular genetics approach

Treatment of acute myeloid leukemia

Clonal hematopoiesis and preleukemia-genetics, biology, and clinical implications

No free rides: management of toxicities of novel immunotherapies in ALL, including financial

Adult Acute Myeloid Leukemia Treatment

Acute Lymphocytic Leukemia

Genetics and prognosis of ALL in children vs adults

Etiology of leukemia. A review

Symptoms of adult chronic and acute leukaemia before diagnosis: large primary care case-control studies using electronic records

Acute lymphoblastic leukemia: a comprehensive review and 2017 update

Acute myeloid leukaemia: optimal management and recent developments

What Patients Should Know About CT Scans and MRIs

As patients, we normally rely on our doctors to tell us which tests and medications to take for the betterment of our health. Rarely do we question them since they know a whole lot more than most of us when it comes to medical ailments and overall health. However, that doesn’t mean you can’t find out more about the various suggestions doctors make.

If you have an ailment in the body and your doctor finds it hard to determine exactly what it is, they will likely ask you to get either a CT scan or MRI done. The tests are used to provide a detailed view of your internal body to help determine the ailment. We breakdown the two for your better understanding:

CT Scans

CT scans provide imaging using x-rays at different angles. This scan is more in-depth as compared to an x-ray. X-ray tests use a beam of radiation from a set angle and display the image. Since a CT scan uses a series of radiation beams at different angles, it slices the same image up, giving a 3D view so doctors can understand the ailment better. With the help of a computer, an image is produced. CT scans can help determine ailments such as cancer, bone injuries, and chest and lung ailments.

MRI

Magnetic resonance imaging (MRI) uses a magnetic field instead of radiation and provides a more detailed image of the body which also includes soft tissues along with the internal body. It is used to help diagnose the following:

  • Brain injury
  • Cancer
  • Damaged blood vessels
  • Spinal cord injury
  • Stroke
  • Multiple sclerosis
  • Bone infections
  • Damaged joints
  • It can also be used to ensure that various organs are healthy.

Both methods are noninvasive and rely on heavy technology. But when it comes to CT scans, more and more hospitals are opting for mobile CT scanners, which make it easier for them to manage.

Getting Ready for the Test

Preparing for CT Scan and MRI is slightly different. With CT scans, your doctor may recommend you take a contest dye. The dye helps highlight the scanned region more and is generally consumed when scanning the abdomen. It is important to notify your doctor if you have any allergies because you may react to the dye. If you’ve previously had reactions to prednisone (a steroid), iodine, or seafood then the doctor should be immediately notified. Other than that, the doctor may ask you not to drink or eat several hours before the test.

For an MRI, the one thing you need to make sure is that you are not wearing anything that can be detected by magnets. This means, no jewelry, watches, hearing aids, glasses, and other items that may have a metal can be worn during the test. In some cases, a gadolinium dye may be recommended which is injected into the hand or arm. The dye highlights certain details in the imaging and rarely results in any type of reaction. The test can be lengthy for some as it takes anywhere from 30-45 minutes, so if you are claustrophobic, you may want to discuss that with your doctor since you are required to stay in a closed space for that period.

The Test

  • CT Scan: You will be asked to put on a robe and remove jewelry and other metal objects so they don’t have any impact on the image produced. The scanner itself is a doughnut-shaped machine and you lie on a flat table in the middle. The table starts to move back and forth and x-ray tubes fitted into the scanner send out beams and different angles. They pass through your body to the other end of the scanner. The test is painless but make sure you are comfortable because you will be asked to stay still as the scan is going on.
  • MRI: The MRI machine is a long narrow tube that is open at both ends. Like in a CT scan, you lie down on a flat movable table that slides into the tube. As you slide in, the table stops at the specific part of the body being examined and a magnetic field is created and radio waves are directed to the body. The machine does make tapping and thumping noises, so the technician will likely offer earplugs to block it out.

Understanding the Test Result

After getting either a CT scan or MRI done, you will need to consult your doctor. Unless you are a trained doctor, the images will make little to no sense to you. You will need to consult a radiologist that can explain the results to you. In case of an ailment, they will usually recommend you consult a specialist, depending on the ailment, that can assist you further.

As a patient, it is important for you to understand the tests and treatment doctors recommend. Most of the time, you can consult your doctor and they will be more than willing to give you the information you need. Knowing makes it easier for you to undergo the tests and treatments with a little more ease.

Breast Cancer Before 40: How Can I Preserve My Fertility?

Breast Cancer Before 40: How Can I Preserve My Fertility? from Patient Empowerment Network on Vimeo.

Dr. Stephanie Valente discusses fertility preservation in breast cancer patients under the age of 40 and the potential for pregnancy following treatment.

Dr. Stephanie Valente is the Director of the Breast Surgery Fellowship Program at Cleveland Clinic. More about this expert here.

Related Program:

Breast Cancer Before 40: What You Should Know


Transcript:

Dr. Stephanie Valente:

So, another issue that is really important for young women is discussing fertility preservation. And this really needs to happen at the time of their diagnosis. So, we know that the cytotoxic agents that we can give females just through chemotherapy can decrease the ovary and the ability for these women to have menstrual periods after chemotherapy. So, the ability for them to get pregnant naturally.

As well as some of the medications. So, somebody who has a breast cancer that is estrogen positive, the recommendation is for these women to be on hormone suppressant medicine for five to 10 years after their breast cancer diagnosis and treatment, therefore not being able to be pregnant while on these medications. So, talking with young women when they get diagnosed about their family planning and their fertility options up front before they have surgery or chemotherapy is really beneficial.

And whether or not they need to see a fertility preservation specialist. If they want to consider IVF. Or if they have a gene, looking at genetic testing for their future offspring. So, these are all conversations that really need to happen before these women begin chemotherapy if they need it.

And the good thing is that at the young women’s clinic, these fertility specialists are embedded in the clinic. So, they are able to get an appointment with them right away. And a lot of times if these women do want to undergo fertility preservation, that can happen within 10 days of seeing the specialist. So, it really doesn’t delay their care. And we do know that it is safe even with the breast cancer diagnosis.

The other thing is that we do offer a medicine which is a GRNH agonist which will kind of essentially shut down the ovaries during chemotherapy to help protect them so that when a young woman is done with chemotherapy, it helps the ovary kind of get back to normal a little bit sooner.

So, it sounds good in theory. Unfortunately, it’s not something that is covered by insurance companies right now. And so, fertility preservation is expensive. And so, the good thing is there are a lot of groups that put together packages and stuff for these young women to be able to afford it. But it is pretty pricey. So, for those that can afford it, it is a great option. And a lot of them do take advantage of it. I think there are a lot of misconceptions about it. Number one is that patients don’t really know if it’s safe.

Number two, they are scared about their overall diagnosis and a potential delay and 10 days might make some of them afraid that doing that is a good option. Another thing is when these women come in with a diagnosis of breast cancer, they see a surgeon, a medical oncologist, a radiation oncologist, a plastic surgeon.

And so a lot of times an extra appointment at that point in time is just really overwhelming for these women. So, our goal is to kind of refocus and say, “Hey, the good news is that with our modern therapies you’re going to be here for a long time. So, let’s plan for the future now so that in the future you’ve got options.”

Fertility Preservation in People with Cancer

This podcast was originally published by Cornell Weill Cancer Cast, on March 22, 2019, here.

The Empowered Lung Cancer Thriver and Expert Chat

The Empowered Lung Cancer Thriver and Expert Chat from Patient Empowerment Network on Vimeo.


Transcript:

Laura Levaas:

Hello, and welcome to this Patient Empowerment Network program, the empowered cancer survivor and expert chats. I’m your host, Laura Levaas, the lung cancer community manager for Patient Power, and a two-year survivor and thriver of lung cancer. This program is produced by Patient Power. We thank Celgene Corporation, Novartis, and Pfizer for their financial contributions to this program. They don’t have editorial control, but we do really appreciate them helping us make this program happen.

So, our guest today is Dr. Ross Camidge, the Director of Thoracic Oncology at the University of Colorado here in Denver. He’s also one of the top doctors in the U.S. for the very type of lung cancer that I have. It’s a rare mutation called ALK positive. And hopefully he can talk about that a little bit more later.

Dr. Ross Camidge:

We can talk about that until the cows come home.

Laura Levaas:

That’s good. Well, I’m excited to be interviewing somebody who is in the same town as me. So, you’re right down the road.

Dr. Ross Camidge:

Yeah, and we’re doing it virtually. Isn’t that crazy?

Laura Levaas:

It is crazy. So, we’re both in Denver, but we’re both online. So, I hope you’re having a good day. And thank you for joining us. So, can you estimate how many lung cancer patients you’ve worked with during your career?

Dr. Ross Camidge:

More than 1,000, I would have thought. So, I tend to see about 30 people a week, of whom about two or three of them are new each week. And then you can do the math. And then I’ve been here…it’ll be 15 years in October. So, someone really clever with a calculator can do that calculation, but it’s several thousand.

Laura Levaas:

That’s a lot.

Dr. Ross Camidge:

Yep.

Laura Levaas:

Is there a case that stands out to you in your career? Maybe somebody who beat the odds of their prognosis, or somebody that had a very interesting or unusual case?

Dr. Ross Camidge:

Well, you know, it’s funny. I mean, there are lots of people who I’ve looked after who’ve inspired me in different ways. But the ones that I keep thinking about the young patients who were diagnosed before we knew about all these molecular sub-types of lung cancer.

And I remember one young guy. He was 21 years old. He was really into skateboarding and art. And his parents were busy getting a divorce at the time. And it was a total disaster to have a diagnosis of lung cancer, and he’s stuck in the middle. And his disease was incredibly aggressive, and he didn’t survive very long. And somewhere in me, it’s like, well, he must have had something. He must have had ALK; he must have had ROS1.

And these things weren’t even described at the time. And part of life is about timing. So, nobody wants to have lung cancer. But it’s a much better time to have lung cancer now than it was last year, and certainly last decade.

Laura Levaas:

Right. So, there is hope for people who are diagnosed now?

Dr. Ross Camidge:

Well, I mean, I think that the best example of that is, people who now have Stage 4 lung cancer, the questions they have to ask are, “Shall I go for promotion in my job? Shall I go on this fun vacation? Am I gonna marry this person?” The same things that we all struggle with before a diagnosis of lung cancer. Because there used to come a time when you got a diagnosis of lung cancer, and the same conversation at least that the doctor was concerned was, “You’re about to drop down dead.” We phrased it differently, but you get the drift.

And now, those are completely separated by an unspecified amount of time, in the same way that we’re born and we die at some point in the future, and we don’t quite know when that’s gonna be. And so, we don’t have the two things – “Hi! Mrs. Jones! You’ve got a bouncing boy and they’re about to drop down dead.” Now, they’re separated by life. And we are gradually increasing the distance between those two events.

Laura Levaas:

I think that’s amazing. And this is a good segue, actually, for me to tell a little bit about my story. I don’t wanna get too far into the weeds. But my story, I think it was unique because I had a threemonth prognosis, basically, by the time they got a hold of me. I’d been misdiagnosed for about a year, which is pretty common, I think, with –

Dr. Ross Camidge:

Yeah.

Laura Levaas:

– lung cancer. You know, allergy symptoms, some migraine symptoms. And mine was actually caught, oddly enough, during a breast cancer screening. Because my mother is a breast cancer survivor, and she was diagnosed very young. So, my doctors have always been really proactive about that. But my original prognosis was three months. And that’s before they knew that I was ALK positive. So –

Dr. Ross Camidge:

So, who told you that you had three months?

Laura Levaas:

It was –

Dr. Ross Camidge:

That’s what drives me crazy, some well-meaning person in the emergency room.

Laura Levaas:

Yes. And I think it’s because when they discovered what I had, I had 50 brain mets and 50 spine mets, and my brain was swelling. And they were telling my family, “We’ve gotta get her into whole-brain radiation right away.”

We found out about two weeks later that I was ALK positive. So, they stopped the radiation, and I went right into taking Alectinib, which is a newer drug. And it was approved by the FDA I think about three months after I started taking it as first line for ALK.

Dr. Ross Camidge:

It’s all about timing.

Laura Levaas:

And then it stopped – yeah. Yeah. So, it’s kind of – I feel a bit like a champion. Because they said, “Well, you have three months.” And that can be a real bummer. And it’s a real shock to friends and family and my boyfriend at the time, who’s no longer. But here I am, 26 months later. And I feel great. And nobody ever thinks that I’m sick. They’re always shocked to find out that I have lung cancer. So –

Dr. Ross Camidge:

I think you’ve done great. And you’re still doing great.

Laura Levaas:

Thank you. And let me explain to our audience how I met you. One of the things that helped me have a positive outlook on being diagnosed with lung cancer is, No. 1, because I have this mutation, there was a targeted therapy available to me. And so, within six months, all of the cancer ground to a halt.

And I was basically able to resume most of my normal activities. I could drive again. I could go out to eat. I could do some normal things. But a friend of mine told me that there was a Facebook group for my specific type of cancer. And it was so valuable, and it helped me sort of like find my people. I refer to them affectionately as mutants because we’re all mutants together. But we share information. And they told me about your second opinion program, which I hope is okay to talk about on –

Dr. Ross Camidge:

Sure.

Laura Levaas:

– this program. But that’s how I found out about you. And you’re now my oncologist. And I’m in a Phase 2 clinical trial for a drug that’s new to me. And I’m very excited about that.

Dr. Ross Camidge:

You haven’t started it yet, have you?

Laura Levaas:

I have. I started it last week.

Dr. Ross Camidge:

Oh, you started last week, didn’t you?

Laura Levaas:

I did. I did. The first couple days, I felt weird. But now, I feel great. So, for those –

Dr. Ross Camidge:

Yeah, that’s fantastic.

Laura Levaas:

– that are watching, just know I do think having a positive attitude will help you through those really tough times when you’re feeling low. Reach out to your sub-group. Reach out to the people who have what you have. Because they’ve been walking that path, and they can help you.

Dr. Ross Camidge:

I mean, I think that one of the things is – I mean, it’s the same like when doctors talk to doctors. You can do the shorthand. You don’t have to explain what you’ve got and what it means. You don’t have to explain to me that you weren’t a smoker. You can just sort of jump in and say, look, this is the stuff that’s happening with me. And they understand.

Laura Levaas:

Absolutely. Absolutely. So, I am going to ask you a couple of quick questions. And then we got a lot of audience questions for you. So, I hope you’re ready.

Dr. Ross Camidge:

Yep. Bring it on.

Laura Levaas:

Lots of really good questions. So, before we transition into those, I wanted to ask whether you have noticed a mindset shift? You mentioned right at the beginning that this is the best time to be diagnosed with lung cancer because there are options. But are you noticing a mind shift in your patients?

Dr. Ross Camidge:

Yeah, I mean, I think there is. I mean, I think lung cancer has gone from being – or let me rephrase that. Certain sub-groups of lung cancer has gone from being this kind of embarrassing thing, that you were sort of hidden in a closet, and nobody knew a lung cancer survivor because they didn’t exist – to now, I can show a room full of people and you can’t pick out who’s the lung cancer patient and who’s their significant other in the picture because everybody looks the same. And that, to me, is huge success.

So, I mean, one of the things we did last year – and I may have shown you the picture that we have up in the clinic – is we actually had a survivors’ celebration.

Laura Levaas:

Awesome.

Dr. Ross Camidge:

And to get your invite, you had to be at least five years out from your diagnosis. And we invited 400 people. Now, to be honest, we messed up the timing, and we sent the invites out about two weeks late. But we still had about 100 people turn up –

Laura Levaas:

That’s great.

Dr. Ross Camidge:

– which was pretty awesome. And we took a big picture. And it’s framed and sitting up in the clinic, for the simple reason that when you’re first diagnosed, you know these people exist, but you don’t believe they’re real. And I wanted to be able to come outside and say, “See that guy there? Well, he’s 10 years out. And look, he still looks fine, and he’s leading a normal life.”

So, I don’t mean everybody’s gonna do that. But it’s gone from being this fantasy – I might win the lottery – to, well, I might graduate from high school. I mean, it becomes a much more realizable dream.

Laura Levaas:

Right. Well, what questions do you think patients should be asking when they’re first diagnosed? They go to the doctor. They’re like, “You have lung cancer.” What should a patient ask?

Dr. Ross Camidge:

Well, some of the basics are, what’s the stage of the cancer? How far has it spread around the body? So, usually, at least in the USA, people are getting a PET scan and an MRI of their brain.That’s the kind of standard bread and butter. I mean, 10 year ago, probably the most common thing I would encounter in the second opinion is somebody who wouldn’t have scanned the brain. They were waiting until someone had symptoms before they scanned it, which was like, well, you’ve lost a few neurons by then.

Now, probably the big thing is, have they done molecular testing? And I think the education has been, that’s not a uniform box. If you find something, that’s great. But if somebody says, “Well, you don’t have a mutation,” the next question is, “Well, what have you looked for?” Because if you haven’t looked for A, B, and C, you don’t know that that’s not there. So, the things that we test for have become more expansive.

And then the last one – and it’s hard not to say this without sounding like a complete jerk, but I’m going to do it anyway – is that the disease has become super complex and super specialized. And you don’t have to have all of your treatment with a thoracic specialist, but you should have a relatively early appointment with a thoracic specialist to just check that you’re on the right path.

Laura Levaas:

Good. That’s –

Dr. Ross Camidge:

Those are the three things.

Laura Levaas:

Okay. Those are really, really good things to ask. I wanted to ask also how long you’ve been involved in lung cancer clinical trials in the development of new medicines?

Dr. Ross Camidge:

Well, I’ve been here, as I said, nearly 15 years. I trained before that amongst other places in Edinburg, in Scotland, which is where I did most of my training. And that’s where I first encountered lung cancer patients. And it was actually probably the very first – so, you were taken round to different centers in your training. And I landed in lung cancer. And I really liked the patients. And I kind of felt that they were … they were very undemanding. Often, many of them had smoked, and they were kind of feeling a little embarrassed. And so, they made you want to step towards them because they were kind of stepping away from you. And I also felt that it was kind of poised for a breakthrough. So, that was kind of how I got involved.

And then since I’ve been here, when I first arrived in Colorado, it was pretty well known for lung cancer. But it had not a huge clinical program. I think when I arrived, they put nine patients a year on clinical trials. And within a few years, we were putting more than 100 on. So, I really helped to build that. And then with my colleagues here, we’ve been able to build the program.

Laura Levaas:

What’s the best advice you can give someone who is newly diagnosed with cancer?

Dr. Ross Camidge:

Well, the first thing is, for those of you who’ve seen The Hitchhiker’s Guide to the Galaxy, the first thing is, don’t panic.

Laura Levaas:

That’s good advice. That’s good advice.

Dr. Ross Camidge:

The thing is, what you do is, you get diagnosed. And there’s a period of time where the room – you just can’t hear anything, and you feel distant from it. And what you’ve gotta do is, you – absolutely, you can wallow in self-pity for a period of time. And then you have to get up and move on. And that’s when you say, okay, this is a problem like anything else in life. And I will figure out the best of all possible solutions.

Laura Levaas:

Absolutely. Conversely, Terry wanted to know, what is the biggest mistake patients make in decisionmaking about treatment?

Dr. Ross Camidge:

Well, listening to people who say you only have three months to live.

Laura Levaas:

Yeah. That’s not good.

Dr. Ross Camidge:

Yeah. I don’t know what – I think perhaps believing that everything you see about cancer on the TV – which is everyone who’s bald and throwing up – must automatically apply to you. Or that that person down the street who died from a brain tumor automatically applies to you. I mean, so, cancer isn’t cancer. There are different diseases. And until you can find out, like you said, your peer group, you don’t know what the truth will be for you. And then you’re still gonna make your own rules up anyway.

Laura Levaas:

That’s true. That’s true. And I was thinking the other day, my needs when I was first diagnosed are very different than what they are now a few years later. Because in the beginning, I didn’t have coping skills. And I just didn’t know what to do. But you do develop them over time. And I remember a woman telling me, “Oh, you’ll figure it out.” And that made me really mad. But I see the wisdom –

Dr. Ross Camidge:

Yeah.

Laura Levaas:

Yeah. I see the wisdom in that now because you do figure it out over time.

Dr. Ross Camidge:

But how did you figure it out? How did you develop those coping skills? … Am I allowed to ask you questions?

Laura Levaas:

Oh, absolutely! Yeah, I think it was helpful, oddly enough, that I wasn’t allowed to drive and that I was in such a bad state. Because it allowed me to sort of withdraw from society for a while, withdraw from my work, withdraw from relationship drama. Because I ultimately ended up breaking up with my partner because he wasn’t capable of handling what I was going through, and he wasn’t supportive. So, all of the things that were familiar to me, like my job, my apartment, I retreated from all of that. And at the time, it sucked. But now, I’m like, that allowed me to have a perspective that was removed from everything. And I just –

Dr. Ross Camidge:

How old was your son at the time when you were diagnosed?

Laura Levaas:

Four.

Dr. Ross Camidge:

So, I mean, there’s an element of where you can withdraw from society, but you’ve got a 4-year-old.

Laura Levaas:

That’s right.

Dr. Ross Camidge:

So, how do you deal with that?

Laura Levaas:

Yeah. Well, I ended up moving in with my sister. Because at that time, I couldn’t drive, and I couldn’t take care of myself. So, I did rely really heavily on her. And their daughter is the same age as my son. So, they were going to school together. I relied very heavily on them, and I’m so thankful for that because that allowed me to just rest and heal. Because in the beginning – not to get too far in the weeds – but I couldn’t watch TV. I couldn’t be on my phone. I couldn’t be on the computer. Just no attention span whatsoever because of whole brain, I think. So, retreating from everything actually was good for me. And I’m also kind of a loner. So, I liked it, being alone too, oddly enough.

Good question.

I have another question from Christine C. She says, how long do you think it will take until lung cancer will be a chronically managed disease?

Dr. Ross Camidge:

Well, I think for some people, it already is. So, I now have 10-year Stage 4 survivors who are still alive and still thriving, to use your word. So, for those people, it’s a reality. And I don’t know – as I said, people will make their own rules – I don’t know how long they will go. I mean, I honestly do not know how long I can control their disease. You just have to stay alive and in the game and hope that breakthroughs will happen.

Now, then the challenge is, okay, “Well, what about me? I don’t have ALK. I don’t have – whatever.” And you go, okay, well, so, everyone – we have to try and replicate the success of the ALK positive population with all of the other sub-types of lung cancer or the ones that don’t even have a label yet. And so, there’s plenty of work to do.

Laura Levaas:

Definitely. Leslie wants to know, what do you see in the near future for treatment of lung cancer? And she lists a couple of things like a fourth generation TKI, immunotherapy – a couple of things that I don’t even know what they are, SHP2, Protex, anything else?

Dr. Ross Camidge:

Yeah. I don’t know what Protex is, but I know what SHP2 is. So, first of all, so, the concept of the fourth generation TKI, I mean, I assume that’s because we have a third generation TKI and therefore, the next one must be called the fourth generation. So, I don’t know that the generations of TKI is going to be the immediate solution.

If I had to say what I think the future is gonna hold, there’s a couple of things. So, one is I think we can – and we’ll use ALK as an example. But really, ALK is this model system that everybody else with lung cancer might like to replicate. So, we’re really good at developing drugs that are great at suppressing one particular pathway that is driving some people’s cancer.

But the cancer still grows eventually. Usually now, with some of the drugs – like the one you’re on and the third-generation drug – is that they’re not growing because they’re turning back on the same pathway. What they’re doing is, they’re growing through some other pathway coming up. So, finding these other pathways, these so-called second drivers, is going to lead to rational combinations of drugs. That’s one way.

The other thing which is kind of the elephant in the room is, well we have these drugs. You have these fantastic responses on the scans. But if you stop the drug, the cancer starts to grow. And if you go back on the drug a week later, it’ll shrink down. So, you clearly haven’t killed all of the cells which are even sensitive to that drug. So, until we can address why we can’t get 100 percent cell kill – that’s a technical term – we’re never gonna deal with the elephant in the room, which is, why can’t we actually cure people?

And that’s a very different situation from, why does the cancer grow three years later? The question is, why, when you walk through the door and you have a great response on the scan, if you had a magic microscope, why is there still one in 1,000 cells left? And that to me is actually the horizon we need to look for.

Laura Levaas:

Okay. Okay. That’s a great answer. A few more questions. Will R. wants to know about a lung cancer vaccine.

Dr. Ross Camidge:

Well, so, you could view that in a couple ways. So, if you think about how we use vaccines, we use them when we don’t have a disease to prevent us from getting that disease. We don’t really use a vaccine when we’ve already got the disease. So, if you’ve got chicken pox, I don’t vaccinate you for chicken pox. I treat the chicken pox. And so, lots of people are trying to develop vaccines, but they’re giving them in the wrong way. They’re giving them to somebody with an established lung cancer, and then they’re surprised that it doesn’t work. But that’s not what vaccines do.

The question is, could we find a way of saying, well, these are the people who are at highest risk for lung cancer, and give them something before they have lung cancer to reduce their risk? And the answer is, maybe. But if you can imagine, that’s a really difficult study to do. It would take years and years and years.

I’ve just come back from something called the World Conference on Lung Cancer, which was in Barcelona – tough life – but the biggest breakthrough there wasn’t about treatment. It was about a study that was actually done in Scotland about screening people. So, we’re pretty familiar with, if you smoke this much, you meet a certain criteria, and you go get a CT scan. But that’s no good if you’re not a smoker. You don’t meet those criteria.

So, they still have to look at a blood test. And they can show that that particular blood test, it wasn’t definitive. It wasn’t, you’re gonna get cancer or not. But it bumped up your risk if you are positive on the blood test to then make that screening even more effective.

Laura Levaas:

That’s awesome.

Dr. Ross Camidge:

And they had some evidence – loose evidence – that it might even work in never smokers. And I think that’s what will come in the future too. And then what if you identify this high-risk group? I’m getting all excited now – all that higher-risk group? Maybe then say, okay, well, why are they at higher risk? Is that the group we give a vaccine to?

Laura Levaas:

Right. And then how would you identify a non-smoker, high-risk group? Can you?

Dr. Ross Camidge:

Yeah, well, so, it’s a work in progress. So, one of the things that they’re starting to do is find some of the mutations which are driving people’s cancer in the blood. Okay? So, the problem is that the sensitivity of the test isn’t very good. So, you can find it when somebody has lots of cancer in their body. But to get the screening, you want to find it when there’s one little ditzel in your lung. So, you have to really turn up the sensitivity.

And I think that’s where the field is kinda going. So, they would know that if they found ALK in your blood, if they made a super sensitive test, that that would be wrong. Shouldn’t be there. And therefore, they would say, you should go get a CT scan. And so, the sensible thing would be, develop a cocktail of tests for every one of the things that drive lung cancer and say, if we find it, that’s bad news. Go get a CT scan.

Laura Levaas:

I like that. A cocktail of tests. Good. Well, hopefully, that will be soon. Two more questions. This is a really great question, actually, from Gail O. Is there a resource for local oncologists to reach out to for information and collaboration about lung cancer? Because as I’m sure you know, some of these smaller centers, maybe those physicians aren’t seeing lung cancer patients. So, they – I don’t wanna say they don’t know what to do, but maybe a patient is not getting the appropriate treatment protocol.

Dr. Ross Camidge:

I mean, that’s a really good question. So, it depends on where you are in the world. So, there are guidelines that NCCN, National Comprehensive Cancer Network – which is a common guideline used in the USA – is updated every few months. And that’s a common thing that a private practitioner could look at. And yet, it’s astonishing how many people sort of still don’t follow that. That’s a guideline. And the trouble with guidelines is, they don’t describe every possible scenario. In terms of how do you –? This may come as a huge surprise to you, but doctors have egos.

Laura Levaas:

No!

Dr. Ross Camidge:

No! So, how do you convince a person who may be a very good general oncologist that they don’t know everything? And that’s really hard. So, it’s not that we don’t necessarily have the resource. But we have to have people feel comfortable, if you like, asking for help. And I think that may be the biggest challenge.

I mean, I’ll give you an example. So, here we are in Colorado. There are probably several hundred medical oncologists in the state, of whom a handful ever send us patients for clinical trials. And you go, well, they must all see lung cancer. Lung cancer’s common. So, why do only some of them send people for clinical trials? Either they’re sending them somewhere else – and that’s okay – or they’re just not asking for help. And that is a huge tragedy if that’s happening.

Laura Levaas:

Yeah. So, is there a resource for local oncologists, like –?

Dr. Ross Camidge:

Do you want me to actually answer the question?

Laura Levaas:

If it’s possible. It’s a big question.

Dr. Ross Camidge:

No. I mean, not in a – I mean, there are lots of separate resources. So, all oncologists are subject to CME, continuing medical education. There are videos they can watch. There are updates of all these conferences. But they have to want to do it. Nobody is getting down and forcing them to do it.

Laura Levaas:

Right. And I think that’s where an empowered patient comes in. An empowered patient will seek out the care that they’re looking for.

Dr. Ross Camidge:

Yeah. I mean, I do lots of second opinions. And for many of my patients, they’re around the world and around the country. And sometimes, their oncologist I form a very close relationship with because we both feel like we’re looking after the same person. And you almost feel like you’re kind of a co-parent. And that’s great because they don’t feel threatened by me, and I don’t feel threatened by them, and we can work together. “Well, this has happened. This is what the scan shows. What do you think? And I’ll do this.” And others don’t. But that’s how it can work well.

Laura Levaas:

Okay. Last question. This person’s name is Parentin B. I’ve never heard that name before. It’s very interesting. Are there recommendations about what patients can do themselves, like supplements, diet, exercise, etc., that could be helpful? And I know when I was first diagnosed, that was one of my first questions. Because my physician said, “Well, eat healthy.” And I was like, “Well, what does that mean?”

Dr. Ross Camidge:

What does that mean? Yeah.

Laura Levaas:

So, I think there’s a glut of, should we do Keto? Should we do Paleo? Should we go vegan? Vegetarian?

Dr. Ross Camidge:

I think one of the things is, what this is actually telling us is that when we’re diagnosed, we want to be part of the solution ourselves. We don’t want to be passive and have people do things to us. And I think the physicians who go, “Well, no. Nah,” I mean, they’re missing out on that need to take some aspect of control of our lives.

And so, some of it, you can channel that energy into becoming empowered and educating yourself about it. Not to the point that you’re obsessed about it, but I mean so that you’re, again – occasionally, I get patients who come in, and you go, “So, what treatment are you on?” And they go, “I don’t know.” And you go, “Well, you’re hardly taking control if you wanna change your diet, yet you can’t be bothered to learn the name of your chemotherapy. That’s not empowerment.”

I think diet is something we can all control in our lives. It can also make you – a diagnosis of cancer makes you vulnerable to anyone who wants to sell you any kind of quack theory. I think most people, at least our cancer dietitians here, would say, you bump up the fresh fruit and vegetables. You don’t have to become a juicer. But fresh fruit and vegetables generally make you feel better. They keep your bowels moving more, which sometimes, some of the treatments can interfere with that. You don’t have to feel guilty if you have a candy bar. But if you minimize the amount of highly processed food you have and the amount of sweets, that’s fine. It’s like anything else. You can have cheat dates. Don’t feel bad about it.

But all of that is kind of subjective. There’s people who are gonna tell you, you have to have cottage cheese and flax seed oil or the Gerson diet and have coffee enemas. I prefer my coffee this way, but –

Laura Levaas:

Me too.

Dr. Ross Camidge:

And there are always testimonials about these things, but there’s very little hard evidence that it actually makes a difference. The one exception is exercise. Actually, there’s quite a lot of data that being a healthy weight – so, not overweight, and just being active. It doesn’t mean you have to sign up for a triathlon, but just going for a walk every day or doing something actually makes people feel better, makes them cope with the treatment better. And there’s even some data that actually survival is improved. So, that’s definitely something that people can do.

Laura Levaas:

Well, those are all really good things. And I appreciate these questions. Many of them came from the ALK positive Facebook group that really helped me cope through some of my tough times. And there are some really smart folks in there, way smarter than me. Probably not as smart as you. But they –

Dr. Ross Camidge:

No! Way smarter than me! They’re all like nuclear physicists and things.

Laura Levaas:

I’m really amazed at the amount of specialized information that I’ve been able to find in these support groups. So, kind of winding up. Thank you, Dr. Camidge, for joining us today for – it’s a new program, actually, from the Patient Empowerment Network, but it’s produced by Patient Power. And again, we want to thank Celgene Corporation, Novartis, and Pfizer for their support, even though they don’t have editorial control. We’re kinda driving the bus. And we’re really grateful that you could join us today and answer all of these pressing questions.

Dr. Ross Camidge:

My pleasure.

Laura Levaas:

Thanks. We’ll catch you next time. And everybody, thanks for watching. Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Dr. Lisa Fitzpatrick

Dr. Lisa Fitzpatrick is an infectious diseases physician, CDC-trained medical epidemiologist and founder of Grapevine Health, an organization focused on improving health literacy and patient engagement. Her career has spanned research, clinical medicine, global health, community health education and patient advocacy.

Most recently she served as the medical director for Washington DC’s Medicaid program. Dr. Fitzpatrick is a professorial lecturer for the George Washington University Milken Institute School of Public Health and an adjunct clinical professor at the George Washington University School of Medicine. She is an Aspen Institute Health Innovator fellow and member of the Aspen Institute Global Leadership Network.

 

She has a Masters in Public Health from the University of California-Berkeley School of Public Health and Masters in Public Administration from the Harvard Kennedy School of Government.

In addition to public health and infectious diseases, Dr. Fitzpatrick’s areas of professional interest include health literacy, patient engagement and health innovation for underserved communities, specifically digital health solutions.