M Newly Diagnosed Archives

Your melanoma diagnosis is just a starting point. Even though the path ahead may seem unclear or even insurmountable, armed with knowledge you can take control.

Let us help you become empowered to understand your diagnosis, to confidently ask questions, and to identify providers that are the best fit for you.

More resources for Melanoma Newly Diagnosed from Patient Empowerment Network.

What You Need to Know Before Choosing a Cancer Treatment

What You Need to Know Before Choosing a Cancer Treatment from Patient Empowerment Network on Vimeo.

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What steps could help you and your doctor decide on the best treatment path for your specific cancer? This animated video explains how identification of unique features of a specific cancer through biomarker testing could impact prognosis, treatment decisions and enable patients to get the best, most personalized cancer care.


If you are viewing this from outside of the US, please be aware that availability of personalized care and therapy may differ in each country. Please consult with your local healthcare provider for more information.


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TRANSCRIPT:

Dr. Jones:

Hi! I’m Dr. Jones and I’m an oncologist and researcher. I specialize in the care and treatment of patients with cancer. 

Today we’re going to talk about the steps to accessing personalized care and the best therapy for YOUR specific cancer. And that begins with something called biomarker testing.

Before we start, I want to remind you that this video is intended to help educate cancer patients and their loved ones and shouldn’t be a replacement for advice from your doctor.

Let’s start with the basics–just like no two fingerprints are exactly alike, no two patients’ cancers are exactly the same. For instance, let’s meet Louis and another patient of mine, Ben. They both have the same type of cancer and were diagnosed around the same time–but when looked at up close, their cancers look very different.  And, therefore, should be treated differently.

We can look more closely at the cancer type using biomarker testing, which checks for specific gene mutations, proteins, chromosomal abnormalities and/or other molecular changes that are unique to an individual’s disease.

Sometimes called molecular testing or genomic testing, biomarker testing can be administered in a number of ways, such as via a blood test or biopsy. The way testing is administered will depend on YOUR specific situation.

The results could help your healthcare team understand how your cancer may behave and to help plan treatment. And, it may indicate whether targeted therapy might be right for you. When deciding whether biomarker testing is necessary, your doctor will also take into consideration the stage of your cancer at diagnosis.

Louis:

Right! My biomarker testing results showed that I had a specific gene mutation and that my cancer may respond well to targeted therapy.

Dr. Jones, Can you explain how targeted therapy is different than chemo?

Dr. Jones:

Great question! Over the past several years, research has advanced quickly in developing targeted therapies, which has led to more effective options and better outcomes for patients.

Chemotherapy is still an important tool for cancer treatment, and it works by affecting a cancer cell’s ability to divide and grow. And, since cancer cells typically grow faster than normal cells, chemotherapy is more likely to kill cancer cells.

Targeted therapy, on the other hand, works by blocking specific mutations and preventing cancer cells from growing and dividing.

These newer therapies are currently being used to treat many blood cancers as well as solid tumor cancers.  As you consider treatments, it’s important to have all of the information about your diagnosis, including biomarker testing results, so that you can discuss your treatment options and goals WITH your healthcare team.

Louis:

Exactly–Dr. Jones made me feel that I had a voice in my treatment decision. We discussed things like potential side effects, what the course of treatment looks like and how it may affect my lifestyle.

When meeting with your healthcare team, insist that all of your questions are answered. Remember, this is YOUR life and it’s important that you feel comfortable and included when making care decisions. 

Dr. Jones:

And, if you don’t feel your voice is being heard, it may be time to consider a second—or third—opinion from a doctor who specializes in the type of cancer you have. 

So how can you use this information to access personalized treatment?

First, remember, no two cancers are the same. What might be right for someone else’s cancer may not work for you.

Next! Be sure to ask if biomarker testing is appropriate for your diagnosis. Then, discuss all test results with your provider before making a treatment decision. And ask whether testing will need to be repeated over time to identify additional biomarkers.

Your treatment choice should be a shared decision with your healthcare team. Discuss what your options and treatment goals are with your doctor.

And, last, but not least, it’s important to inquire about whether a targeted therapy, or a clinical trial, might be appropriate for you. Clinical trials may provide access to promising new treatments.

Louis:

All great points, Dr. Jones! We hope you can put this information to work for you. Visit powerfulpatients.org to learn more tips for advocating for yourself.

Dr. Jones:

Thanks for joining us today. 


This program is supported by Blueprint Medicines, and through generous donations from people like you.

Communicating About Cancer: A Brief Guide to Telling People Who Care

Getting a cancer diagnosis can easily be the most terrifying, heart-wrenching experiences one has in their lifetime. Everything from different treatment options (if you’re lucky), to financing, and maintaining quality of life suddenly are in full force front and center. It can be hard to know who to turn to if you’re not directed to a support group (of which there are many), and especially how to tell loved ones and co-workers. The choice is yours, of course, in whom you wish to tell and when – there is no right or wrong answer. (However, I and many others have found that having a caregiver to help manage appointments, billing, etc. can help).

Should you choose to tell others, here are some tips that I have read and/or heard from other cancer patients/survivors as well as some I have found personally helpful:

Kids:

  • It depends on the age – using simpler terms with younger kids (8 and under) may be more helpful, while older kids and teens can understand more detail. For example, saying that you’re sick and you’re getting the best care from a team of doctors who really want to help you get better
  • According to the American Cancer Society, children need to know the basics, including:
    • The name of the cancer
    • The specific body part(s) of where it is
    • How it’ll be treated
    • How their own lives will be affected
  • Think of a list of questions ahead of time that you think they may ask and jot down answers, such as how the cancer happened (that it’s not anyone’s fault), if it’s contagious, and/or if it’ll be fatal
  • Make sure that they know you are open to talking about it at any time. You can also perform check-ins with each other to monitor feelings

Family and friends:

  • Select a group of people, including immediate family and close friends
  • Divulge information only you feel comfortable sharing. Maybe it’s the basics, as mentioned above, or more detailed information
  • Prepare for different reactions, including sadness, anger, frustration, depression, anxiety, compassion, and support
  • Also prepare for people to not feel comfortable and feel as if they’re helpless. A cancer diagnosis is a heavy weight to bear, and not everyone will feel like the have the capacity to help as much as they want to
  • As the patient, tell them how you’re looking for support (ex. what are your needs during this time, including physical, emotional, mental). Guiding members of your support system to get your needs met may help them feel more at ease and able to help

Work:

  • Telling a supervisor/manager may be one of the hardest tasks for fear of discrimination
    • However, the Americans with Disabilities Act (ADA), which covers employers with 15 ore more employees, prohibits discrimination based on:
      • Actual disability
      • A perceived history of disability
      • A misperception of current disability
      • History of disability
    • The ADA also:
      • Protects eligible cancer survivors from discrimination in the workplace
      • Requires eligible employers to make “reasonable accommodations” to allow employees to function properly on the job
      • Ensure that employers must treat all employees equally
    • The Family and Medical Leave Act (FMLA) also gives you the right to take time off due to illness without losing your job
      • However, an employee must have worked for his or her employer for at least 12 months, including at least 1,250 hours during the most recent 12 months in order to qualify. The law applies to workers at all government agencies and schools nationwide as well as those at private companies with 50 or more employees within a 75-mile radius
    • The Federal Rehabilitation Act prohibits employers from discriminating against employees because they have cancer
      • However, this act applies only to employees of the federal government, as well as private and public employers who receive public funds

Sources:

Empowered! Podcast: Meet Andrea Conners

Today, we’re extremely proud to introduce our first-ever Empowered! podcast. Empowered! will bring you conversations around topics that are important to patients and care partners.

For our first episode, we meet Andrea Conners. Andrea is Patient Empowerment Network’s Executive Director. Andrea shares a little bit about herself, about PEN, and her inspiration in getting involved.

 


Notable News February 2020

February may be a short month, but there is no shortage of new and exciting cancer research and treatment news. Could cervical cancer be eliminated for good? Are prebiotics the key to stopping melanoma? Well, take a bite of asparagus and read on to find out.

Vegetables are always an option for healthy eating, but you might want to consider adding (or increasing) two, in particular, to your diet. Asparagus and onions are sources of a prebiotic, and scientists have found that prebiotics help the immune system fight cancer in mice, reports genengnews.com. When the prebiotics, mucin and inulin, were fed to mice, they not only boosted the immune system, but they slowed the growth of implanted melanoma tumors, and delayed drug resistance. A delay in colon cancer growth was also noted. Prebiotics are food for bacteria and they cause growth of the good gut microbial communities, changing their make up, and thus causing the anti-cancer effect. The researchers say the study highlights the importance of the gut microbiome in treating cancer. Mucin is a protein found in intestinal mucus, and inulin is a plant fiber found in asparagus and onions. Learn more here.

With some perseverance and dedication, the World Health Organization (WHO) and other professionals believe cervical cancer could indeed be eliminated by 2120 reports, medicalnewstoday.com. Elimination could occur even sooner in some areas of the world. There are two separate studies that indicate the possibility. One study finds that vaccinating girls against the human papillomavirus (HPV), especially in low and middle income countries, could lead to an 89.4 percent reduction in the cancer. HPV is the top risk factor for cervical cancer. The other study shows that screening is another way cervical cancer could be eliminated. Experts say that if women have cervical cancer screenings just twice in their lifetimes, that could reduce the occurrence by 96.7 percent. The findings of the two studies are being used to establish the WHO’s cervical cancer elimination strategy, which will be presented in Switzerland in May. You can find more information here.

Screenings for cervical cancer may save lives, but could other screenings end up doing more harm than good? Early detection could be leading to over diagnosis of cancers, reports sciencealert.com. Believe it or not, not all cancer cells pose a health threat. Sometimes people have abnormal cells in their bodies for their whole lives and those cells never cause a problem. So, detection and treatment of these cells can potentially do more harm than good if people are being unnecessarily exposed to cancer treatments that can be stressful to the body, say scientists in Australia who have studied the risks of over diagnosing cancer. The researchers determined that breast and prostate cancers are the most over diagnosed and found that both cancers saw a 50 percent increase in occurrence when early screening tools, such as mammograms, were introduced. In the UK research shows that for every woman whose life is saved from breast cancer screening, three women will be diagnosed unnecessarily. The challenge is in finding balance between diagnosing and over diagnosing. More details about what the Australian researchers discovered can be found here.

When cancer is diagnosed and needs to be treated, it’s important to have options. The United States Food and Drug Administration (FDA) approved a new treatment for high-risk nonmuscle invasive bladder cancer, reports urotoday.com. Approved in early January, pembrolizumab (known as Keytruda), gives the 80,000 bladder cancer patients diagnosed each year, another possible treatment option. In trials, researchers found that 40 percent of patients had a complete response to the medication. Learn more about Keytruda’s journey to approval by the FDA here.

Another possible option may be available to women who want to have children, but are infertile after cancer treatment, reports cbsnews.com. A technique called in vitro maturation (IVM) recently resulted in the birth of a baby to a 34-year-old cancer survivor. The technique is still considered experimental, but you can learn more about it here.

Knowing your options is what patient empowerment is all about. Keep reading the Patient Empowerment Network blog to stay informed, and you’ll find more Notable News right here next month. Until then, don’t forget to eat some asparagus!

Tests for Melanoma Skin Cancer

This resource was originally published by the American Cancer Society here.

Most melanomas are brought to a doctor’s attention because of signs or symptoms a person is having.

If you have an abnormal area on your skin that might be cancer, your doctor will examine it and might do tests to find out if it is melanoma, another type of skin cancer, or some other skin condition. If melanoma is found, other tests may be done to find out if it has spread to other areas of the body.

Medical history and physical exam

Usually the first step your doctor takes is to ask about your symptoms, such as when the mark on the skin first appeared, if it has changed in size or appearance, and if it has been painful, itchy, or bleeding. You may also be asked about your possible risk factors for melanoma skin cancer, such as your history of tanning and sunburns, and if you or anyone in your family has had melanoma or other skin cancers.

During the physical exam, your doctor will note the size, shape, color, and texture of the area(s) in question, and whether it is bleeding, oozing, or crusting. The rest of your body may be checked for moles and other spots that could be related to skin cancer (or other skin conditions).

The doctor may also feel the lymph nodes (small, bean-sized collections of immune cells) under the skin in the neck, underarm, or groin near the abnormal area. When melanoma spreads, it often goes to nearby lymph nodes first, making them larger.

If you are being seen by your primary doctor and melanoma is suspected, you may be referred to a dermatologist, a doctor who specializes in skin diseases, who will look at the area more closely.

Along with a standard physical exam, many dermatologists use a technique called dermoscopy (also known as dermatoscopy, epiluminescence microscopy [ELM], or surface microscopy) to see spots on the skin more clearly. The doctor uses a dermatoscope, which is a special magnifying lens and light source held near the skin. Sometimes a thin layer of alcohol or oil is used with this instrument. The doctor may take a digital photo of the spot.

Skin biopsy

If the doctor thinks a spot might be a melanoma, the suspicious area will be removed and sent to a lab to be looked at under a microscope. This is called a skin biopsy.

There are many ways to do a skin biopsy. The doctor will choose one based on the size of the affected area, where it is on your body, and other factors. Any biopsy is likely to leave at least a small scar. Different methods can result in different types of scars, so ask your doctor about scarring before the biopsy. No matter which type of biopsy is done, it should remove as much of the suspected area as possible so that an accurate diagnosis can be made.

Skin biopsies are done using a local anesthetic (numbing medicine), which is injected into the area with a very small needle. You will likely feel a small prick and a little stinging as the medicine is injected, but you should not feel any pain during the biopsy.

Shave (tangential) biopsy

For this type of biopsy, the doctor shaves off the top layers of the skin with a small surgical blade. Bleeding from the biopsy site is stopped by applying an ointment, a chemical that stops bleeding, or a small electrical current to cauterize the wound.

A shave biopsy is useful in diagnosing many types of skin diseases and in sampling moles when the risk of melanoma is very low. This type of biopsy is not generally used if a melanoma is strongly suspected unless the biopsy blade will go deep enough to get below the suspicious area. Otherwise, if it is a melanoma, the biopsy sample may not be thick enough to measure how deeply the cancer has invaded the skin.

Punch biopsy

For a punch biopsy, the doctor uses a tool that looks like a tiny round cookie cutter to remove a deeper sample of skin. The doctor rotates the punch biopsy tool on the skin until it cuts through all the layers of the skin. The sample is removed and the edges of the biopsy site are often stitched together.

Excisional and incisional biopsies

To examine a tumor that might have grown into deeper layers of the skin, the doctor may use an excisional (or less often, an incisional) biopsy.

  • An excisional biopsy removes the entire tumor (along with a small margin of normal skin around it). This is usually the preferred method of biopsy for suspected melanomas if it can be done, although this isn’t always possible.
  • An incisional biopsy removes only a portion of the tumor.

For these types of biopsies, a surgical knife is used to cut through the full thickness of skin. A wedge or sliver of skin is removed for examination, and the edges of the cut are usually stitched together.

“Optical” biopsies

Some newer types of biopsies, such as reflectance confocal microscopy (RCM), can be done without needing to remove samples of skin. To learn more, see What’s New in Melanoma Skin Cancer Research?

Biopsies of melanoma that may have spread

Biopsies of areas other than the skin may be needed in some cases. For example, if melanoma has already been diagnosed on the skin, nearby lymph nodes may be biopsied to see if the cancer has spread to them.

Rarely, biopsies may be needed to figure out what type of cancer someone has. For example, some melanomas can spread so quickly that they reach the lymph nodes, lungs, brain, or other areas while the original skin melanoma is still very small. Sometimes these tumors are found with imaging tests (such as CT scans) or other exams even before the melanoma on the skin is discovered. In other cases, they may be found long after a skin melanoma has been removed, so it’s not clear if it’s the same cancer.

In still other cases, melanoma may be found somewhere in the body without ever finding a spot on the skin. This may be because some skin lesions go away on their own (without any treatment) after some of their cells have spread to other parts of the body. Melanoma can also start in internal organs, but this is very rare, and if melanoma has spread widely throughout the body, it may not be possible to tell exactly where it started.

When melanoma has spread to other organs, it can sometimes be confused with a cancer starting in that organ. For example, melanoma that has spread to the lung might be confused with a primary lung cancer (cancer that starts in the lung).

Special lab tests can be done on the biopsy samples that can tell whether it is a melanoma or some other kind of cancer. This is important because different types of cancer are treated differently.

Biopsies of suspicious areas inside the body often are more involved than those used to sample the skin.

Fine needle aspiration (FNA) biopsy

FNA biopsy is not used on suspicious moles. But it may be used, for example, to biopsy large lymph nodes near a melanoma to find out if the melanoma has spread to them.

For this type of biopsy, the doctor uses a syringe with a thin, hollow needle to remove very small pieces of a lymph node or tumor. The needle is smaller than the needle used for a blood test. A local anesthetic is sometimes used to numb the area first. This test rarely causes much discomfort and does not leave a scar.

If the lymph node is just under the skin, the doctor can often feel it well enough to guide the needle into it. For a suspicious lymph node deeper in the body or a tumor in an organ such as the lung or liver, an imaging test such as ultrasound or a CT scan is often used to help guide the needle into place.

FNA biopsies are not as invasive as some other types of biopsies, but they may not always collect enough of a sample to tell if a suspicious area is melanoma. In these cases, a more invasive type of biopsy may be needed.

Surgical (excisional) lymph node biopsy

This procedure can be used to remove an enlarged lymph node through a small incision (cut) in the skin. A local anesthetic (numbing medicine) is generally used if the lymph node is just under the skin, but the person may need to be sedated or even asleep (using general anesthesia) if the lymph node is deeper in the body.

This type of biopsy is often done if a lymph node’s size suggests the melanoma has spread there but an FNA biopsy of the node wasn’t done or didn’t find any melanoma cells.

Sentinel lymph node biopsy

If melanoma has been diagnosed and has any concerning features (such as being at least a certain thickness), a sentinel lymph node biopsy (SLNB) is often done to see if the cancer has spread to nearby lymph nodes, which in turn might affect treatment options. This test can be used to find the lymph nodes that are likely to be the first place the melanoma would go if it has spread. These lymph nodes are called sentinel nodes (they stand sentinel, or watch, over the tumor, so to speak).

To find the sentinel lymph node (or nodes), a doctor injects a small amount of a radioactive substance into the area of the melanoma. After giving the substance time to travel to the lymph node areas near the tumor, a special camera is used to see if it collects in one or more sentinel lymph nodes. Once the radioactive area has been marked, the patient is taken for surgery, and a blue dye is injected in the same place the radioactive substance was injected. A small incision is then made in the marked area, and the lymph nodes are then checked to find which one(s) became radioactive and turned blue. These sentinel nodes are removed and looked at under a microscope.

If there are no melanoma cells in the sentinel nodes, no more lymph node surgery is needed because it is very unlikely the melanoma would have spread beyond this point. If melanoma cells are found in the sentinel node, the remaining lymph nodes in this area are typically removed and looked at as well. This is known as a lymph node dissection (see Surgery for Melanoma Skin Cancer).

If a lymph node near a melanoma is abnormally large, a sentinel node biopsy probably won’t be needed. The enlarged node is simply biopsied.

Lab tests of biopsy samples

Samples from any biopsies will be sent to a lab, where a doctor called a pathologist will look at them under a microscope for melanoma cells. Often, skin samples are sent to a dermatopathologist, a doctor who has special training in looking at skin samples.

If the doctor can’t tell for sure if melanoma cells are in the sample just by looking at it, special lab tests will be done on the cells to try to confirm the diagnosis. These might include:

  • Immunohistochemistry (IHC)
  • Fluorescence in situ hybridization (FISH)
  • Comparative genomic hybridization (CGH)
  • Gene expression profiling (GEP)

If melanoma is found in the samples, the pathologist will look at certain important features such as the tumor thickness and mitotic rate (the portion of cells that are actively dividing). These features help determine the stage of the melanoma (see Melanoma Skin Cancer Stages), which in turn can affect treatment options and prognosis (outlook).

Testing for gene changes

For some people with melanoma, biopsy samples may be tested to see if the cells have mutations (changes) in certain genes, such as the BRAF gene. About half of melanomas have BRAF mutations. Some drugs used to treat advanced melanomas are only likely to work if the cells have BRAF mutations (see Targeted Therapy for Melanoma Skin Cancer), so this test is important in helping to determine treatment options. Tests for changes in other genes, such as C-KIT, might be done as well.

A newer lab test known as DecisionDx-Melanoma looks at certain gene expression patterns in melanoma cells to help show if early-stage melanomas are likely to spread. This might be used to help determine treatment options. To learn more, see What’s New in Melanoma Skin Cancer Research?

Imaging tests

Imaging tests use x-rays, magnetic fields, or radioactive substances to create pictures of the inside of the body. They are used mainly to look for the possible spread of melanoma to lymph nodes or other organs. These tests are not needed for most people with very early-stage melanoma, which is very unlikely to have spread.

Imaging tests can also be done to help determine how well treatment is working or to look for possible signs of cancer coming back (recurring) after treatment.

Chest x-ray

This test might be done to help determine if melanoma has spread to the lungs, although a CT scan of the chest (see below) is often done instead.

Ultrasound

Ultrasound uses sound waves to create images of the inside of your body on a computer screen. This test might be used to look at the lymph nodes near the tumor, especially if it’s not clear if they’re enlarged based on a physical exam. Ultrasound is typically fairly quick and easy to do, and it doesn’t expose you to radiation.

Ultrasound-guided needle biopsy: Ultrasound can also be used to help guide a biopsy needle into a suspicious lymph node.

Computed tomography (CT) scan

The CT scan uses x-rays to make detailed, cross-sectional images of your body. Unlike a regular x-ray, CT scans can show the detail in soft tissues (such as internal organs). This test can show if any lymph nodes are enlarged or if organs such as the lungs or liver have suspicious spots, which might be from the spread of melanoma.

CT-guided needle biopsy: CT scans can also be used to help guide a biopsy needle into a suspicious area within the body.

Magnetic resonance imaging (MRI) scan

MRI scans use radio waves and strong magnets instead of x-rays to create detailed images of parts of your body. MRI scans can be very helpful in looking at the brain and spinal cord.

Positron emission tomography (PET) scan

PET scan can help show if the cancer has spread to lymph nodes or other parts of the body. It is most useful in people with more advanced stages of melanoma.

For this test, you are injected with a slightly radioactive form of sugar, which collects mainly in cancer cells. A special camera is then used to create a picture of areas of radioactivity in the body.

PET/CT scan: Many centers have special machines that do both a PET and CT scan at the same time (PET/CT scan). This lets the doctor compare areas of higher radioactivity on the PET scan with the more detailed appearance of that area on the CT scan.

Blood tests

Blood tests aren’t used to diagnose melanoma, but some tests may be done before or during treatment, especially for more advanced melanomas.

Doctors often test blood for levels of a substance called lactate dehydrogenase (LDH) before treatment. If the melanoma has spread to distant parts of the body, a high LDH level is a sign that the cancer may be harder to treat. This can affect the stage of the cancer (see Melanoma Skin Cancer Stages).

Other tests of blood cell counts and blood chemistry levels may be done in a person who has advanced melanoma to see how well the bone marrow (where new blood cells are made), liver, and kidneys are working before and during treatment.

The American Cancer Society medical and editorial content team

Our team is made up of doctors and oncology certified nurses with deep knowledge of cancer care as well as journalists, editors, and translators with extensive experience in medical writing.

Last Medical Review: August 14, 2019 Last Revised: August 14, 2019

 

Why Getting a 2nd and 3rd Opinion Made a Difference In Her Cancer Treatment, With Sasha Denisova

This podcast was originally publish on WE Have Cancer by  on May 7, 2019 here.


Sasha Denisova – WE Have Cancer

Seeking out a 2nd and 3rd opinion in her cancer treatment resulted in a dramatic improvement in Sasha Denisova’s quality of life.

Sasha first appeared on this podcast in Episode 83 where she shared the struggle she faced getting doctors to take her colorectal cancer symptoms seriously.

During our latest conversation she discussed why she made the decision to forego treatment at the Mayo Clinic in Minnesota to seek treatment at Memorial Sloan Kettering in New York City. We also discussed:

  • How she got the courage to challenge the initial treatment recommendations made by her doctor and why it’s important for everyone to advocate for their best care.
  • The importance 0f seeking out opinions from the top rated cancer facilities in the U.S.
  • How she eased herself back into working out in the gym and why working with a guided fitness instructor was important.
  • Why exercise is vital to her well-being and how most cancer patients can find an exercise routine that works for them.

Take Control Of Your Care When You’re Seriously Sick via NPR

This podcast was originally publish on NPR by John Henning Schumann, Mara Gordon, and Chloee Weiner on September 7, 2019 here.


Finding out you have a serious medical condition can leave you reeling. These strategies from medical and lay experts will help you be in control as you navigate our complex health care system and get the best possible care.

Here’s what to remember:

1. Your primary care doctor is the captain of your health care team.

With any serious diagnosis, there will usually be more specialists to see. Having a primary care doctor you trust helps coordinate the information flow and keep track of the big picture. Your primary is on her toes for possible medication interactions. Regular preventive measures shouldn’t be overlooked, either.

2. Don’t be afraid to get a second opinion.

If you’re offered treatment such as chemotherapy or surgery that can be life-altering, it’s crucial to get more than one opinion, ideally from a doctor working for a different institution. Oncologists and surgeons expect patients to seek second opinions — many provide them as a major part of their practice. If your doctor resents you seeking more opinions, that’s a red flag.

3. Get organized, stay organized, and find someone to help you if you can’t do it yourself.

Make a list of what you hope to accomplish at the doctor’s office. If for some reason you aren’t able to take notes, bring someone along who can act as an advocate and make sure your concerns aren’t overlooked. Ask for copies of your medical chart and test results so that you are part of the conversation — you have a legal right to see your records.

4. If you need a procedure, go to someone who does it all the time.

It’s true for medical care as it is in life: The more a doctor does a procedure, the better at it she’ll be. This means fewer complications and better outcomes. It’s OK to ask your doctor how many times she’s done a procedure; a high volume means competence when things go as planned, and calmness for unforeseen complications.

5. Use the Internet, but use it wisely.

Contrary to what you may think, your doctor wants you to be well-informed and engaged with your health. There’s more medical information available online than ever before, but a lot of it is garbage. Stick with trusted sources like the National Library of MedicinePubMed.gov, or learn about and use the U.S. Preventive Services Task Force.

6. Figure out what matters to you, and fight for it

Our default setting for health care is that more testing is always good. But that’s often not the case, as tests have side effects and can cause undue anxiety because of false positives or incidental findings. Have a frank conversation with your doctor about your values and what you want (and don’t want!) and you’ll be an empowered patient with a doctor as your advocate, not your adversary.

Learning How to Simplify Cancer With Joe Bakhmoutski

This podcast was originally publish on WE Have Cancer by Lee Silverstein on June 18, 2019 here.

Joe Bakhmoutski – WE Have Cancer

Joe Bakhmoutski was diagnosed with Testicular cancer in 2016.He founded Simplify Cancer  to provide support and advice to those touched by cancer. During our conversation we discussed:

  • Why he created Simplify Cancer
  • How he came to be diagnosed with Testicular cancer
  • How people perceive various cancers and how some are deemed “embarrassing”
  • What patients can do to prepare for their first oncologist appointment and the free tool he offers on his website to assist with this.
  • The book he’s writing to help men dealing with cancer.

Links Mentioned in the Show

Simplify Cancer – http://simplifycancer.com/

Facing a Cancer Diagnosis: Advice From An Expert

Facing a Cancer Diagnosis: Advice From An Expert from Patient Empowerment Network on Vimeo.

Brittany DeGreef, a genetic counselor, provides essential advice for when you are facing a cancer diagnosis emphasizing that leaning on supportive friends and family is key. Download the Office Visit Planner and bring it to your next appointment here.

Brittany Degreef is a Genetic Counselor at Robert H. Lurie Comprehensive Cancer Center of Northwestern University. More about this expert.

See More From the The Pro-Active AML Patient Toolkit

Related Resources

 Find Your Voice Resource Guide  Key Genetic Testing After an AML Diagnosis  Optimize Your First Visit With Your AML Team

Transcript:

One piece of advice I give patients who are just diagnosed with cancer – and we do frequently see patients at least once a week who were just diagnosed either that week or the week prior – is feel what you need to feel. Not every patient is going to react or cope with their diagnosis in the same way as someone next to them, even within the same family. That also goes for caregivers and relatives.  

 So, just because you feel like helping out a relative in a specific way, it might not be the same for your brother or sister or cousin.  

 So, we always tell patients that there is no wrong or right way to cope with a diagnosis of cancer. The way that you approach it is perfectly fine and there’s no right or wrong way to do that.  

So, another piece of advice we always tell patients is don’t be scared to lean on your support network, whether that be family or friends, your healthcare provider, advocacy groups, never be afraid to ask for help.   

And for some patients who feel like they have limited resources, usually hospitals where you’re receiving your patient care has many resources available to you, whether that be emotional, financial, spiritual, logistical. Don’t be scared to ask about those resources. 

Notable News May 2019

Moving into summertime, for many, means increased sun exposure, so it’s pretty good timing that May, the gateway month to summer, is Skin Cancer Awareness Month. Prevention guidelines can be found at skincancer.org and include staying in the shade, avoiding tanning, and protecting your skin with clothing and sunscreen. More guidelines and tips can be found here. However, as noted in washingtonpost.com, prevention guidelines aren’t exactly universal. It turns out that sunscreen is not effective in preventing melanoma in darker-skinned people. While melanoma is a risk for all skin types, those with dark skin or of African descent, usually develop melanoma known as acral lentiginous melanomas which develops in parts of the body that don’t get much sun exposure, such as the palms of the hands or the soles of the feet. Of course, sunscreen use is still recommended for people with all skin types to prevent other sun-related damage, and it’s important to talk to your skincare professional about whether or not sunscreen is the best prevention option for you. Find out more here.

Summertime also tends to include barbecues and picnics, but you might want to think twice about what food you’re packing for the potluck, according to a new study reported in livescience.com. The study researchers estimated that more than 80,000 U.S. cancer cases diagnosed each year might be related to an unhealthy diet. The diets known to be related to cancer risk are low in whole grains, dairy, fruits, and vegetables, and high in processed meats, red meats, and sugary drinks. The cancers most closely-related to diet were colorectal, cancers of the mouth, pharynx and larynx, uterine cancer, and postmenopausal breast cancer. Adults ages 45 to 64 had the highest rate of diet-related cancer. More information about the study can be found here.

There is also increasing evidence that diet can help with cancer treatment, says theatlantic.com. Doctors are starting to look at how the food we eat could affect the cancer cells in our bodies and how what we eat may assist in treatment or preventing cancer cells from growing. Of course, because cancer is a very varied disease, there is no one diet that is best. Different nutrients, or the absence of them, affect different cancers in different ways. The promise is that doctors are starting to uncover the relationship between foods and cancers and how we can best utilize our diets for good health. More information can be found here.

In addition, straitstimes.com further explores the relationship with food and cancer. Researchers in Singapore found a link between a nutrient known as methionine, often in meat, fish and dairy products, and cancer. They discovered that cancer stem cells use methionine as fuel, but when they “starved” lung cancer cells of methionine for 48 hours, they saw a 94 percent reduction in the size of the tumors. The information is promising for the future of cancer treatment. More information can be found here.

No matter what is in your picnic basket or what kind of sunscreen you use, you can enjoy your summer with the knowledge that you are doing your part in being a hero in your own story — much like a young super hero named Wyatt who, during his fourth round of chemo, learned that his dreams would come true in a music video that involved fast cars, battling the bad guys, and pizza. It’s a feel-good story that feels just right for summer. You can read all about Wyatt here. It’s guaranteed to put a smile on your face as bright as the summer sun.

Barby Ingle – What Advice Do You Have For Someone Who Is Newly Diagnosed?

As the president of the International Pain Foundation, a best-selling author, and chronic pain advocate, Barby Ingle shares her advice for the newly diagnosed. For all our A Conversation With… videos please click here.

Barby Ingle – What Advice Do You Have For Someone Who Is Newly Diagnosed? from Patient Empowerment Network on Vimeo.

Advice For Newly Diagnosed Patients #patientchat Highlights

Last week, we hosted an Empowered #patientchat on advice for newly diagnosed patients. The #patientchat community came together and shared their best advice and tips.

The Top Tweets and Advice…

 

Ask Questions

 

 

 

 

Seek a Second Opinion

 

 

 

 

Stay Informed


Full Chat

Finding Your Voice #patientchat Highlights

Last week, we hosted an Empowered #patientchat on finding your voice and what stops patients from seeking a second opinion.

A second opinion is crucial to prevent misdiagnosis or unnecessary procedures or surgeries. A study done by Mayo Clinic showed that as many as 88% of patients who get a second opinion go home with a new or refined diagnosis. That shows that only 12% of patients receive confirmation that their original diagnosis was complete and correct. Still, a lot of patients never get second opinions. So, we wanted to chat about this and see what the Empowered #patientchat community had to say, and these were the main takeaways:

The Top Tweets…

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 


Full Chat

Finding the Funny When the Diagnosis Isn’t

It’s not easy hearing your name and [insert dread diagnosis here]. I know this only too well after having to find the funny in my own journey through cancer. Cancer is, however, most often a diagnosis that you fight to a defined end. What’s it like to find the funny in a chronic condition like multiple sclerosis, or HIV, or diabetes?

I have a number of friends dealing with the life-long aftermath of an MS diagnosis. One of them tipped me off to Jim Sweeney several years ago. Jim’s MS journey started with vision problems in 1985, he was officially diagnosed in 1990, and has been wrestling with the impact of that diagnosis – finding the funny most of the time – ever since. Jim’s body of work includes decades of live improv, and his one-man show “My MS & Me,” which you can hear on the BBC Radio 1 site. His MS has progressed to the point that he’s now in a wheelchair, and his public presence is mostly limited to Twitter, where his profile says he “can’t complain but sometimes do,” and YouTube.

Some other sterling examples of funny-or-die in managing chronic disease are Mark S. King’s fabulously funny My Fabulous Disease blog. Mark is HIV+, so he shares information, resources, and myth-busting about all things HIV in his posts and videos. He’s brutally honest about pretty much everything, with plenty of humor to soften the impact of what it’s really like to live with what anti-retroviral treatments have made a chronic illness, not the death sentence it too often was in the first two decades after the viral epidemic started in 1980.

Then there’s the “laugh out loud at the absurdity” Six Until Me site from Kerri Marrone Sparling, who writes about her life as a Type 1 diabetic. She covers everything from exceedingly random TSA security agent behavior when confronted with diabetes-related medical devices, to “pregnant while diabetic” to dealing with the emotional impact of living with a busted pancreas, all with a good dose of highly-readable snark.

How much courage does it take to laugh out loud, in public, at an incurable disease? Jim, and Mark, and Kerri certainly have courage – and comedy chops! – at the level required.

On the provider side, there are a number of docs who are breaking up the waiting rooms and wards.

The most visible of these comedic clinicians is Dr. Zubin Damania, a/k/a ZDoggMD  – “Slightly Funnier Than Placebo” was his tagline for years, before he shifted to “The Voice of Health 3.0.” ZDogg is a hospital medicine specialist who’s built an empire of snark over the last decade plus, some G-rated and some most definitely NSFW. His videos alone guarantee hours of laughter, and he’s one of the best users of Facebook Live around.

I’ve even found a scholarly article entitled The Use of Humor to Promote Patient Centered Care – be warned, though, that (1) it’s a “scholarly article,” meaning that it’s had all the laughs surgically removed and (2) they want $42.50 for it. You have been warned.

What’s my point here? I actually have two:

1. Laughter really is the best medicine.

Humor keeps us in touch with our humanity, and – unless it’s insult comedy, which I do not recommend in the health care arena, unless it’s insulting bad health care – it helps to comfort others in the same situation.

2. Patients and providers need to work together to help each other find the funny.

If you’re a doctor, don’t just say “you’ve got [insert dread diagnosis here], here’s the treatment plan, call if you have any questions, … NEXT!” Look your patients in the eye, and channel your inner comedian whenever it’s appropriate. If you’re a patient, connect with other people in your situation and see how they’re finding the funny. And help your doctors find their funny. If they can’t find it, you should find another doctor.

We all need to work together to break each other up. Laughter can comfort, can calm, it can even heal.

That’s real disruptive health care, no prescription required.