PEN Blog Archives

Financial Fitness Workouts

From PEN-Powered Activity Guide VIII: Supporting Your Support System

It seems every day we’re being bombarded with ways to stay fit. there is always a new fitness program or a new types of fitness equipment that’s supposed to give us the best bodies we can have. But with those who are dealing with a chronic illness, fitness takes on a different meaning. Not only do we need to feel our best physically, we also must be prepared in every aspect of our lives with your sight always set on your best possible treatment and your continuum of care.

I thought this would be a great time to review four of the most impactful areas you can review, reallocate, and make the changes that are most appropriate for your specific circumstance.

A good way to look at it is, in the fall we make sure we perform maintenance checkups or in our furnaces. We prepare our gardens and lawns for the upcoming spring, we check the exterior for homes for energy efficiency and we do checkups on our cars to prepare them for the winter season.

Unfortunately, few of us take the time to review the foundations of our financial lives that in fact dictate our ability to remain on treatment plans and meet all of our financial obligation. It is my hope, that everyone takes the opportunity to review at least these four areas that I’m covering in this article before the end of the year.


First, the big one for a lot of us, Medicare. As you know the Medicare season is almost upon us. And there are changes as there are every year. If you are already a Medicare enrollee, this open enrollment period gives you the opportunity to make changes if needed. And if you have been enrolled for 12 months or less and you have a Medicare Advantage plan you even have the opportunity to replace it with a Supplemental plan perhaps with guarantee issue If you qualify. Here may be a wait period but you may not be able to get in at a later date and the coverage may be better for you.

Also, if you have an HMO plan you may be able to switch to a PPO for more plan flexibility. Review your Prescription formulary if there have been changes to your treatment. The worst thing you can do is to not review your Medicare options as there are changes every year and more plans may be available to you and the cost may be better as well. Don’t assume that the cheaper the premium the better off you are. Review your total cost. That includes the premium, co-pays, deductibles, coinsurance, and the cost of your meds as well.

Life Insurance

Secondly, review your life insurance plan. Many people aren’t aware of the benefits that insurance offers. Such as, accelerated benefit riders in the event you need access to some cash or the options of taking a loan from your policy.

Additionally, if you are still employed, on your next enrollment period with your employer see if you can add or increase your life insurance amounts. Even if you plan to retire or terminate your employment next year or at a later date the cost to take life insurance with your employer may be the only place you qualify without medical underwriting and it’s much cheaper. Also, see if your employer offer a supplemental life insurance that you can enroll in that may be portable at your termination from employment.

Review your credit to make sure there isn’t anything on it that’s incorrect. If you anticipate making a big purchase this will really affect your interest rate.

Monthly Statements

Third, as a financial advisor, I found a lot of clients would not look at their monthly statements to see how their retirement accounts such as 401k’s and investment accounts were doing. You are doing yourself a huge favor if you keep up with these no matter if the market is up or down. Speak to your financial advisor to make sure you’re taking advantage of growth, income producing, and tax efficient opportunities.

Financial Assistance

And finally, don’t assume you won’t qualify for financial assistance. The cost of treatment is expensive and probably always be. Talk to your doctor or social worker to help you uncover sources that can help you pay for co-pay, deductibles, coinsurance and other needs.

Do this before you find yourself in a financial crisis. Be proactive with understanding your illness and the anticipated change in treatments that may be available for you.

Instead of waiting for spring cleaning, take the time to do a financial review now. Go into the new year in the best possible position you can. And then, like getting a check-up on your car, do the same for your financial future every year. After all, you are worth more than a car!!

October 2021 Digital Health Roundup

The popularity of telemedicine is being embraced by insurance companies, and for now, the best place to identify skin cancer is still at the dermatologist’s office. Patients are concerned about privacy threats when it comes to technology in healthcare, and it turns out they have good reason to be. Fortunately, there are things being done to address the issue.

Privacy of Medical Records

A new survey shows that patients are concerned about privacy of medical records and the use of facial recognition technology in healthcare, reports A large portion of the survey respondents perceive facial recognition technology as a privacy threat, but the use of the technology in healthcare has increased over the past few years as a way to prevent medical errors and provide extra security. With nearly 60 percent of respondents saying they are concerned about the security of these technologies, researchers are tasked with gaining public trust by increasing protections of healthcare information. Find more information here.

It seems that patients have reason to be concerned. Ransomware attacks are having negative effects on patient care, reports A new report shows that ransomware attacks on healthcare organizations can lead to longer stays, delays in care leading to poor outcomes, and increases in patient transfers. The ransomware attacks are also linked to increased mortality rates. The report emphasizes the importance of increasing cybersecurity in healthcare to protect patients. Learn more about the report findings here.


Recognizing the cybersecurity vulnerabilities in healthcare, the U.S. Food and Drug Administration (FDA) recently released a best practices document as a resource for the healthcare industry, reports The document focuses on developing a cybersecurity communication strategy and offers aspects to consider in the event of a security breach. The FDA also plans to address medical device vulnerabilities so that patients who are dependent on medical devices will know what kinds of questions to ask their healthcare providers regarding the security of their devices. Get more information here and see the FDA best practices document here.

The U.S. Government is also investing in the future of information technology in public health, reports The Office of the National Coordinator for Health Information Technology (ONC) has an initiative that will help to develop the health information technology workforce and will help to increasing the number of workers in the field from underrepresented communities. With funding from the American Rescue Plan, ten universities that serve diverse communities have cooperative agreements to build up the healthcare technology workforce over the next four years. Learn more about the initiative and the ten institutions that are participating here.

Skin Cancer App Fails

A setback for healthcare technology occurred recently when a flaw in a direct-to-consumer app used to detect skin cancer was identified at a European annual meeting of dermatology, reports Researchers found that the app, which is available in Europe, incorrectly classified more than 60 percent of benign lesions as cancerous, and almost 18 percent of Merkel cell carcinomas and almost 23 percent of melanomas as benign. The problem appears to be that the app depends on available images to determine the status of a lesion, but there are not enough images of rare skin cancers available for better accuracy. Find more information here.


If you love virtual visits to the doctor, you are in luck! Insurers are now offering new types of health coverage specifically for telemedicine, reports Some insurance companies have plans that require online visits for nonemergency care. The plans tend to have lower premiums and patients select a doctor for their virtual visits who can refer patients to in-person doctors within the network if needed. However, there is some concern that virtual care as the primary means of care may not be ideal. The concern is that things might get missed, like early signs of disease that a doctor would not be able to pick up on through a virtual visit. Learn more about the new type of insurance plans here.

Involving Patients in their Care: The Clinical Trial and Drug Development Processes

Patient involvement in every facet of healthcare is incredibly important in creating better patient outcomes. I believe this is especially true in the rare and chronic disease communities, including cancer. One facet that is particularly key for patient engagement is the development of drugs produced through the clinical trial process.

Clinical trials can cost millions to fund with the goal of producing a product(s) that may or may not help it’s targeted disease population. Thousands of patients rely on these trials to find a cure and/or enhance their quality of life by providing symptoms of relief. Yet many don’t know about them, and if they do, it’s a struggle to find them, much less enroll in one.

As a person who takes on many roles, including a rare disease patient and a cancer patient, as well as someone who has translated clinical trial protocols for a lay audience and now recruits for those trials, I have seen firsthand the barriers that patients face when it comes to potentially life-saving treatments. Below is what I have encountered and what we as healthcare professionals can do about it:

Visibility Into Clinical Trials

While most patients know of and about clinical trials, they are often not aware that they may be an option for treatment. Healthcare is a business, and because of this, doctors feel like they’re “losing” their patients (aka revenue) when they refer their patients. However, most healthcare organizations, facilities, etc. boast that they’re focused on patient-centered care. Patient-centered care means focusing on the needs of each patient and providing the best treatment possible even if it comes from another source.

The Language of Clinical Trials

Clinical trials are often discussed using medical jargon that is too confusing for patients to understand, especially the eligibility criteria. Patients should not be expected to learn a new language to understand the treatment process. Rather, they need resources that will help them understand if they qualify, what will happen in the trial, and how long they’ll be in the trial for.

Outcomes of Clinical Trials

A patient who had participated in a clinical trial once told me that the investigators focused mainly on whether the drug that she was receiving was treating her condition and never considered her quality of life. Quality of life should automatically be included as a measurable outcome in each clinical trial even if it’s not the main purpose.

Involvement in Clinical Trials and Drug Development

Patient centricity, as written above, has become a buzzword in the healthcare industry. The drug company, AstraZeneca, defines it best: “Putting the patient first in an open and sustained engagement of the patient to respectfully and compassionately achieve the best outcome for that patient and their family.” Are we really doing this if patients aren’t involved in the drug and clinical trial development processes?

How can patients invest themselves, and the government and pharma invest in patients, to potentially get a better ROI?:

  • Look at Patient-Centered Outcomes Research Institute’s website, whose work focuses on outcomes most important to patients and research that focuses on gold-standard randomized controlled trials, as well as observational studies.
  • Sign up for AstraZeneca’s Patient Partnership Program
  • Research articles on drug development for your disease and contact the authors
  • Engage in the FDA’s Patient Representative Program
  • Join the FDA’s Center for Devices and Radiological Health (CDHR)’s Patient Engagement Advisory Committee
  • Join the FDA’s Patient Engagement Collaborative
  • Participate and/or request a Patient Listening Session
  • Present at an Open Public Hearing Portion of an FDA Advisory Committee Meeting
  • Get involved in:
    • The FDA’s Center for Drug Evaluation and Research (CDER)’s Patient-Focused Drug Development program by subscribing to their email updates
    • A patient advocacy group and/or think tank
    • An organization related to your diagnosis that may have doctors on their Board that you can reach out to and share your story and the importance of involving patients

Find more information in this PDF created by Global Genes

Healthcare and Genetic Testing

Leading up to the NORD’s Rare Diseases and Orphan Products Breakthrough Summit on October 18 – 19, we interviewed NORD’s Director of Policy, Heidi Ross.

Please tell us about yourself and your work at NORD

My name is Heidi Ross, and I am the Director of Policy at the National Organization for Rare Disorders (NORD). My job at NORD involves working at the state and federal level to ensure laws are in place so patients have access to affordable, quality health care coverage, including necessary health care providers, diagnostics, and treatments. I love getting to work with policy makers and advocates to ensure our health care system is meeting the needs of rare disease patients.

What is genetic testing and how does it impact people with a rare disease?

According to the National Institutes of Health (NIH), there are an estimated 7,000 rare diseases and 2/3 of rare diseases are thought to be directly caused by changes in genes or chromosomes. Additionally, it takes on average 5-7 years for rare disease patients to get an accurate diagnosis. There are a lot of different types of genetic tests. Some tests only look for variations in one gene, but other genetic tests are more complex and can look at the entire genome for changes. For some rare disease patients genetic testing can be a useful tool for obtaining an accurate diagnosis and can assist health care providers in determining an appropriate treatment plan.

How can someone with a rare disease access genetic testing?

Patients should consult with their health care provider to determine if genetic testing would be helpful in the diagnosis of their condition.

How is genetic testing impacting health care costs for people with a rare disease?

The costs associated with genetic testing vary significantly, as does the out-of-pocket expenses for patients, depending on the type of genetic testing being conducted and the type of health care program or insurance a patient utilizes. However, the costs associated with a long diagnostic odyssey can also be significant for patients and the broader health care system, as patients suffer though unnecessary or unhelpful tests, treatments, or hospitalizations. The uncertainty can also take a significant toll on the mental health of patients and their loved ones.

Can you tell us more about the Healthcare System Savings with Genetic Testing breakout session?

This break out session is focused on Project Baby Bear, which was a $2 million pilot project to provide rapid whole genome testing to ill newborns eligible for care under California’s Medicaid program, Medi-Cal. We have an amazing panel, including the state legislator, Assemblyman Brian Maienschein, who championed the creation of Project Baby Bear, Dr. David Dimmock from Rady Children’s Hospital, which was one of five hospitals who participated in the pilot, and Ms. Christy Moore from Blue Shield of California, which has expanded coverage of rapid whole genome sequencing for their plan participants.

According to the final report on Project Baby Bear:

“The pilot project to expand access to rapid whole genome sequencing provided diagnoses for 76 babies, led to a change in the management of 55 babies that resulted in fewer hospital days, fewer procedures or new therapies, and diagnosed 35 rare conditions that occur in less than one in one million births. In addition, the project reduced healthcare costs and downstream spending, primarily by empowering doctors to eliminate unnecessary procedures and discharge babies sooner, resulting in an estimated $2.5 million in health care savings.

For patients specifically, access to the results of rapid whole genome sequencing through Project Baby Bear led to 513 fewer days in the hospital, 11 fewer major surgeries and 16 fewer invasive diagnostic tests.”

As a result of Project Baby Bear, the insurer Blue Shield of California is now providing coverage for rapid and ultra-rapid sequencing of babies and children who have life-threatening and unexplained medical conditions. Furthermore, this year, California’s budget included significant funding for a whole genome sequencing benefit for Medi-Cal eligible children. Attend the session on Monday, October 18 to learn more about this incredible pilot program.

What are looking for to the most during the Rare Diseases and Orphan Products Breakthrough Summit?

The variety of panels and the expertise of the various speakers makes for a compelling Summit, even in a virtual setting. It is always exciting to learn more about the research and development of new diagnostics and treatments for rare diseases, because I know the hope that they give to many rare disease patients. The Summit is also a great chance to learn about rare disease challenges and opportunities and what they mean for public policy, both now and in the future. Registration is still open! We hope to see you next week.

Breast Cancer Telemedicine Tips: How to Make the Most of Your Visit

We all have acknowledged that the silver lining of the COVID-19 pandemic has been the use of telehealth services. You should have a choice on who you feel comfortable with on your healthcare team and now telemedicine grants that choice to many populations.

Newly diagnosed breast cancer patients living in a rural area or farther from major academic health centers are now able to obtain second opinions from experts without travel and with minimal exposure to COVID-19. The quality of a televisit does not differ from an in-person visit. Although you’ll be without a physical exam, your provider can still prescribe medications and send you for various tests/blood work.


Know When to Use Telehealth

If you are unsure that your chief complaint requires a telehealth visit versus an in-person visit, ask. You can avoid an unnecessary trip or multiple appointments.

Find Out What Telehealth System Will Be Used

Will your appointment be via phone call, or will there be video? Is there an application you should download, or is it accessible via your web browser? Is this televisit covered by your insurance? Don’t be afraid to overprepare. In the end, it saves time and benefits everyone involved in the appointment.

Connect With a Plan

Telemedicine may seem less formal causing us to not be as prepared as we would for an in-person visit. Write your questions and concerns down. Just because you’re connecting virtually does not make your appointment time any less important.

Bring a Loved One

At first thought, you may see no reason why someone should accompany you to your telehealth visit; however, you still need that support. It’s okay to have someone in the room or even on camera with you. Your provider will not mind and will encourage it. Many times, emotions are high in the exam room, and we hear what our providers are saying, but we’re not really listening. Having support at your telehealth appointment ensures that you won’t be overwhelmed with trying to remember every detail. The best part is that with telehealth your loved one can join from almost anywhere in the world!

Stay Informed

Telehealth extends beyond appointments. It also includes patient portals. If you have a quick question for any member of your healthcare team, more than likely there is a system that you can use to quickly contact someone. Your patient portal can also give you easy access to results of blood tests, urinalysis, and more.

Telehealth services are likely here to stay. As you enter survivorship of your breast cancer care, annual visits can be maintained via telehealth. While in survivorship, you’ll most likely no longer be seeing multiple doctors on a regular basis for your care. With telehealth, you are able to maintain your health with one provider during survivorship without taking time off of work, finding childcare and/or sacrificing travel plans. As telehealth services continue to develop and to improve, the future of breast cancer care will steadily become more accessible.

Check out the following programs in our Breast Cancer TelemEDucation Resource Center:

#patientchat Highlights – Patient Advocacy in Drug Development: What Role Does it Play?

Last week we hosted a “Patient Advocacy in Drug Development: What Role Does it Play?” #patientchat. The #patientchat community came together on Twitter for a lively discussion. Take a look at the top tweets and full transcript from the chat.

Top Tweets

What does patient-centered care mean to you?

What barriers have you observed to patient-centered care?

How can patient experiences, needs, perspectives, and priorities be incorporated into the drug development process?

How can drug developers collaborate with patient advocacy groups?

Full Transcript

Finding Your Support As a Newly Diagnosed Patient

From PEN-Powered Activity Guide VIII: Supporting Your Support System

Finding Your Support As a Newly Diagnosed Patient from Patient Empowerment Network on Vimeo.

View PEN-Powered Activity Guide VIII


Lisa Hatfield

It’s hard to know how much to share, when to share, who to share with, when you have kids, when you have colleagues, when your friends and neighbors see that you’re maybe not doing so well, or know that you’re in the hospital, they want to know, but it really has to be a decision that is best for you and taking care of yourself during that time and your family at that time. So, one of the things that kind of that flows into another question is when friends and family hear that, people jump in

and they want to try to help you get messages, phone calls, text. How can I help? What can I do? How are you feeling? For me anyway, I loved that kind of support, but it does get overwhelming, and I know for anyone who has gone maybe to have stem cells collected or staging, when you’re gone for several weeks at a time, it’s really difficult to keep up on those messages and everyone’s intentions are so good. And they really do want to help. So, we had actually set up a Caring Bridge page where I could communicate on my own time or my husband could communicate the information, so really, like you said, doing things on your own time and just disclosing as much information as you want to.

There was a patient who had asked me how to deal with a family member who as they were talking about their myeloma, as he was explaining it to her family, that person got very choked up, and so she said, I felt like I was trying to take care of them as I was dealing with my own diagnosis, so I didn’t really know exactly what to say other than just be sure to take care of yourself at that time, whatever I pray for you is going to be the best… Whatever is best for you is going to be the right thing for you, but the next question I had is when people do start asking, how can I help… Can I drive your appointment? Can I bring meals to you… Maybe you want them to help out, which is a pretty easy one, but what if you don’t want them to help out? Again, these are questions your doctors might not be able to answer, but they happen a lot with myeloma or cancer patients, how do you handle that when people are asking, either you don’t have the time to respond, or maybe you don’t want the help, have either of you have any of you had that experience with your friends and family network.

Sheri Baker:

Yeah, I had a lot of people jump in and offer meals or whatnot, in the beginning, I accepted. Especially in the beginning when I was starting to…Well, when I was in the hospital too, I was doing my treatment, I was learning how to do dialysis, so the first two to three months were kind of hectic, and I had a friend who offered. She’s like, every Wednesday, I’m going to bring you a meal.

And I accepted that up until about like Thanksgiving. And I called her and I said, I’m back on my feet. But I reserve the right next year when I have to have my stem cell transplant and be in the hospital again to ask you to help out again. And she says, definitely. And same thing with other friends, I was on a renal diet, so they want to know what can we make for you, so you just tell them, but there does come a point in time where you say, I’m doing good now, but down the road, can I call you and ask you to help out again with meals, and then after my stem cell transplant, before I came home from the hospital, a group of friends were like, We want to come to clean your house, and I said, Great.

So, they did come and clean my house, and that was, I have to say that’s uncomfortable because now they’re like all over your house, and you don’t know what kind of state your house is going to be in ’cause you’ve been in the hospital for almost three weeks, so you’re a little embarrassed about the dust bunnies and how bad the bathroom might look, but it was welcome help, even though you might be a little embarrassed about how dirty your house really is, but I think that it was.

For me, it was easier to say, I don’t need to help right now, but next year or in a couple of months, if I need some help, can I call you that and ask for help, so that’s maybe one way to… If you don’t want the help right now to still not totally shut them down, but say, I’d like to have some help in the future.

View PEN-Powered Activity Guide VIII

Ten Things You Should Never Say To A Person With Cancer…And One Thing You Should

I get it. People so often just don’t know what to say to someone with cancer.

It’s a shock when someone you care about has received a life-changing diagnosis. Our natural instinct at times of trouble is to rush in with well-meaning phrases and encouraging thoughts.

It may feel to the person saying these things that they are being supportive, but it’s all too easy to say the wrong thing.

So what should you avoid saying to a cancer patient? The following list includes some of the most common things that we in the cancer community have heard from well-wishers. At the end of the list I share the one thing I would have most liked to have heard instead.

1. You’ll beat this

Probably the top-most thing that people say when they want to be supportive is that you’re strong and will beat cancer. While we all hope for the best outcome, we cannot actually be sure of the outcome of the disease for anyone. As breast cancer blogger Nancy Stordahl writes in What Does Beating Cancer Mean Anyway? [1] ”Struggling to live up to some gold standard of what beating cancer means, adds to the already exhausting burden. We need to stop patronizing and judging cancer patients based on misguided battle talk analogies. Cancer isn’t an opponent in some war game you can stomp out by mindset or determination.”

2. You’re so brave

An extension of “you’ll beat this.” This can come across as quite patronizing – especially when it’s followed by a statement like “I couldn’t do it.” The truth is we don’t feel particularly brave, we just don’t have a choice. We do what we have to do to get through treatment the best we can. By promoting belief in bravery and stoicism in the face of cancer, society creates unfair expectations of cancer patients and deprives us of an outlet for our darker fears.

3. My aunt had the same cancer and she was cured

While I’m happy your aunt recovered from cancer, no two cancers are alike. Cancer is a complicated disease and chances are her cancer is not the same as mine. An alternative version of this statement concerns an aunt who died from the “same cancer”. Please don’t go there with us.

4. What’s your prognosis? What are your odds of surviving?

Never, ever ask anyone this question. It is highly personal, intrusive, and insensitive. Enough said.

5. Have you tried [insert latest miracle supplement or diet]. I hear it can cure cancer.

There’s no shortage of advice urging cancer patients to eat a particular food, juice religiously, or try a miracle supplement, however, there’s no scientific evidence that these work and many are downright harmful.

6. The stress of [your divorce, bereavement, job loss] probably caused your cancer.

This is a variation of the “you’re to blame” for getting cancer brigade. “Did you smoke?” asked of lung cancer patients. “Did you breastfeed?” directed at breast cancer patients. All said with the implication that you should/shouldn’t have done a certain thing and really it’s your own fault for getting cancer. In fact, using a statistical model that measures the proportion of cancer risk, across many tissue types, scientists from the Johns Hopkins Kimmel Cancer Center published a study in 2015 which concluded that two-thirds of the variation in adult cancer risk across tissues can be explained primarily by “bad luck.” In other words, a major contributing factor to cancer is in fact beyond anyone’s control.

7. But you don’t look sick

This sounds almost accusatory. As if to be a card-carrying cancer patient you must look the part of a cancer “sufferer”. As cancer patients, we have good days and bad days. On the good days, we look just fine. Other days not so much. How we look is not a reflection of what we are going through.

8. It’s only hair, it will grow back

On the flip side of #7, there are those comments you receive when you do show signs of being a cancer patient. When you lose your hair after starting chemotherapy, you may find your distress dismissed with “it’s only hair, it will grow back” or “lucky you have a nice shaped-head – you can carry off the bald look”.

9. Look on the bright side, at least you will lose weight without having to diet

The crassness of this statement seems hard to believe – but yes, it has been said to cancer patients. Another variation on the looking on the bright side theme – breast cancer patients quite often have to deal with people saying to them “at least you’ll get a free boob job.”

10. You must stay positive

I’ve saved the best for last. Ok, I admit that I caved in when I was first diagnosed with breast cancer to the pressure to be positive because it reassured the people around me. While I accept that for some people, maintaining a positive attitude is a valid coping mechanism, for myself, and for many others, being asked to always show our sunny side is a denial of the times we are in pain, anxious, and afraid.

So what should you say to someone with cancer?

Sometimes there are no right words to say. Sometimes the best you can do is listen, without judgment, without offering any well-meaning advice.

Author Rachel Naomi Remen says it better than I ever could.

“Perhaps the most important thing we ever give each other is our attention…. A loving silence often has far more power to heal and to connect than the most well-intentioned words.”

Having listened first, you could then say something like the following:

“I can’t begin to understand what you are going through/ I am so sorry you have to go through this. I am here for you. What one thing can I do for you right now?”

Knowing we’ve been heard and understood opens up a space for us to feel freer to ask for what we truly need at this moment.

[1] Nancy’s Point What Does Beating Cancer Mean Anyway?

September 2021 Notable News

A big yellow duck is raising awareness by having an adventure, researchers are becoming more aware of how cholesterol might affect cancer, and quitting smoking is always a good idea. A better breast cancer treatment and vaccines could be on the way for cancer patients, and fruit flies may be the key to longer lifespans.

Fruit Flies and Cancer

Researchers are learning a new anti-cancer strategy from studying fruit flies, reports The research shows that, rather than trying to destroy tumors, treatments that attack destructive cancer chemicals could lead to improved health and survival rates. Researchers discovered that the tumors in fruit flies release a chemical, called interleukin-6 (IL-6), that weakens the barrier between the brain and the bloodstream and allows the bloodstream and brain environments to mix. The same chemical was found in mice and researchers were able to extend the lifespan of both the mice and the fruit flies by blocking the IL-6 impact on the blood-brain barrier. If researchers are able to find a drug that blocks the effect of IL-6 on the blood-brain barrier, it could potentially prolong the lives of cancer patients. Learn more about the fruit fly research here.

COVID-19 Booster Shot for Blood Cancer Patients

Some blood cancer patients could benefit from a Covid-19 booster shot, reports A study showed that more than half of the patients with B-cell blood cancers, who did not make antibodies after the first two Covid-19 vaccine shots, had a better result in making antibodies after the third booster shot. Blood cancer patients with questions about covid-19 vaccinations should consult their doctors. Get more information here.

Cancer Vaccines

Researchers have found some promising results studying the use of cancer vaccines, reports Experimental studies have helped to identify cancer proteins that, when vaccinated against, can potentially increase the body’s own immune response by waking up T cells to target the proteins. Over the past decade, scientists have been exploring cancer vaccines as a way for the body’s immune system to fight cancer. Learn more here

Breast Cancer Treatment

There is good news in breast cancer treatment, reports New data shows that the drug ENHERTU worked better than the current treatment for HER-2 positive breast cancer, which is currently incurable. ENHERTU was more successful at reducing tumor size and keeping the patient alive longer. The results suggest that ENHERTU could become a first-line treatment for breast cancer and researchers are investigating to see if they have similar results using ENHERTU to treat other cancers such as stomach and lung cancers. Read more here

Lung Cancer and Smoking

It’s never too late to quit smoking, says A new study shows that quitting smoking after being diagnosed with early-stage lung cancer could help people live longer and could also delay a return of the cancer. In the study, the people who quit smoking lived a median of 22 months longer than those who did not quit. Learn more about the findings here

There is also new information from about lung cancer among people with no history of smoking. A study has found that most of the tumors are caused by the mutations of natural processes in the body. The study also identified three subtypes of cancers among never smokers. The findings could help researchers develop better treatments for these types of lung cancer. Learn more here.

High Cholesterol and Cancer

Scientists are beginning to understand why there may be a link between high cholesterol and cancer, reports Researchers have found that high cholesterol levels may help make cancer cells resistant to death. Using cell lines and mice models, researchers found that exposure to a derivative of cholesterol, known as 27HC, led to the growth of tumors and prevented the process of natural cell death in cancer cells. Understanding the link between cholesterol and cancer could lead to creating better cancer treatments. Find more information here.

Mr. Vanderquack

There are many ways to spread cancer awareness, but perhaps none more fun than a 20-inch duck in a Jeep traveling the country. The duck, Mr. Vanderquack, has a GPS tracker and is traveling to all 50 states in an effort to raise money for St. Jude Children’s Cancer Research, says Thousands of Jeep owners have volunteered to drive Mr. Vanderquack around the country where he will visit over 650 cities. Mr. Vanderquack’s journey began in early September and is expected to take three months. You can follow the journey and sign up for email updates at or on Instagram @mrvanderquack. Mr. Vanderquack’s adventure has already raised more than $20,000. Get more information here

#patientchat Highlights – Empowerment and Your Healthcare Team

Last week we hosted a “Empowerment and Your Healthcare Team” #patientchat with Teresa Hagan Thomas, PhD, RN (@TLHagan). The #patientchat community came together on Twitter for a lively discussion. Take a look at the top tweets and full transcript from the chat.

Top Tweets

How easy is it for you to speak openly with your healthcare team?

How does your healthcare team empower you to make decisions about your care?

How can you help to empower your healthcare team?

Full Transcript

How Can You Access Personalized Lung Cancer Treatment?

How do diagnostic tests affect your lung cancer treatment plan. Dr. Tejas Patil discusses appropriate testing for lung cancer, latest targeted therapies and how emerging research is affecting patient outcomes.

See More from INSIST! Lung Cancer

About the Guest:
Dr. Tejas Patil is an academic thoracic oncologist at the University of Colorado Cancer Center focused on targeted therapies and novel biomarkers in lung cancer. Learn more about Dr. Patil, here.



Welcome to Insist! Lung Cancer, a program focused on empowering patients to insist on better care. Today, we’ll discuss the latest advances in lung cancer, including the role of genetic testing and how this may affect treatment options.

I’m Katherine Banwell, your host for today’s program. Joining me is Dr. Tejas Patil. Dr. Patil, would you introduce yourself please?

Dr. Patil:                     

Sure. Thank you for inviting me to speak on this platform. My name is Dr. Tejas Patil. I am an Assistant Professor at the University of Colorado, where I take care of patients diagnosed with thoracic cancers, which include non-small cell lung cancer, small cell lung cancer, and also include mesothelioma and thymic cancers. My main research focus is on molecular alterations in lung cancer and development of targeted therapies.


Thank you. Before we start, a reminder that this program is not a substitute for seeking medical advice. Please refer to your own healthcare team.

Dr Patil, before we get into an in-depth discussion on lung cancer, would you tell us about the types of lung cancer?

Dr. Patil:                     

Absolutely. Lung cancer has a bit of a confusing nomenclature. Historically, Lung cancer was divided into small cell lung cancer and non-small cell lung cancer, and this distinction was based on how the lung cancer appeared under a microscope, but it also has practical implications. Small cell lung cancer tends to have a very different biology than non-small cell lung cancer. It originates from neuroendocrine cells and is treated very differently than non-small cell lung cancer.

Non-small cell lung cancer is also a bit of a misleading term because it really is a catch-all term. It represents a wide group of histologies that are not small cell lung cancer. So, basically, anything that isn’t small cell lung cancer will be non-small cell lung cancer, but that group is very heterogenous and includes subtypes like adenocarcinoma, squamous cell carcinoma, adenosquamous, large cell and even sarcoma type variance.

Distinguishing between the two is important because the prognosis and treatment options are actually very different between small cell and non-small cell lung cancer.


Well, let’s talk about testing and diagnosis. Following a diagnosis, are there specific tests that patients should ask their doctor for?

Dr.  Patil:                    

Right. After a diagnosis of lung cancer has been made, the most important next step is to establish a cancer stage, and so this is typically done through the TNM staging criteria. The T typically reflects the size of the tumor. The N reflects whether there’s lymph nodes involved with cancer and the M refers to whether there’s a metastasis, and metastasis refers to whether the cancer has spread outside of the lung.

Based on a combination of scores using the TNM criteria, lung cancers are staged from one to four. Now, to establish these different scores, oncologists will typically request varieties of scans. These include CT scans, PET CT scans, MRI and in some cases, very sophisticated ultrasound techniques called endobronchial ultrasound, so that’s the staging component. I think, in addition to the staging component, once a patient has a diagnosis of lung cancer, the tissue itself can be subject to a variety of different molecular tests which we will cover in this talk.


Well, let’s get into the tests. How are each of these tests administered?

Dr. Patil:                     

Well, first let’s discuss imaging.

Staging is a very important component of lung cancer, and at minimum, a patient should have a CT scan of the chest and abdomen with extension down to the adrenal glands. The reason for this is that this type of imaging, at least the extent of the imaging, will cover most of the metastatic sites that lung cancer tends to go towards. Additionally, a PET CT scan can be obtained.

Now, a PET scan is a very unique form of imaging. Patients will receive a radio labeled form of glucose and the principle of a PET scan is that since cancers metabolize glucose, which is sugar at a higher rate than normal tissue, the scan in principle helps clinicians identify spots where cancer could be. One important point about imaging and this is something patients should be aware of, is that lung cancers are unique cancers in that there’s a very high risk of spread to the brain.

And so, as part of baseline staging, almost every patient with lung cancer should be getting an MRI of the brain to rule out brain metastases.

Then a final point I’ll make is that patients with Stage 2 or 3 lung cancer really should have their cases reviewed in a multi-disciplinary context where there’s input from surgeons, pulmonologists, medical oncologists, and radiation specialists because the treatment for Stage 2 and 3 lung cancer can be quite complicated. I think, and we’ll talk about the – so, that was the staging part. Now, we can talk a little bit more about the diagnostic testing and molecular testing specifically.                    

There’s been tremendous advances in lung cancer. One of the biggest advances has been the appreciation that there are very specific mutations that actually “drive” cancers that cause them to grow, divide and metastasize.

We call this mutation an oncogene. Over the past two decades, there have been many oncogenes in lung cancer that have been identified. Interestingly several of these oncogenes, such as the ALK mutation, or the EGFR mutation, tend to occur in patients who were never smokers.

So, while smoking is the major environmental risk factor for lung cancer, our understanding of these, through molecular testing has identified a group of patients who were never smokers yet still developed lung cancer. The reason this is important to know is that there’s a variety of targeted therapies available for patients who do have mutations such as ALK or EGFR, and these are typically associated with very favorable outcomes in lung cancer.


What are common lung cancer mutations, first of all?

Dr. Patil:                     

There are many mutations that are found in lung cancer. I should mention that the scope of what mutations we find very much depends on the type of molecular test that’s performed. This is a topic that’s beyond the scope of this discussion, but know that when you say you are getting genetic testing, a lot of that depends on the genes that are in the test, meaning if a molecular test is only looking for 10 genes, or 10 mutations, it’s only going to pick up 10 mutations versus more comprehensive molecular testing, which look at hundreds or even thousands of genes, will identify more mutations.

That being said, there are approximately 10 mutations currently for which there are targeted therapies, either that are commercially licensed through the FDA, or are being evaluated in the context of the clinical trial.

And in patients who are heavy smokers, the most common mutation that we see that’s an oncogene is a KRAS mutation, and there’s currently drugs in clinical trials that are looking to target a very specific KRAS mutation. 

Dr. Patil:                     

In never smokers, the mutation spectrum is actually quite a bit more varied, and here, we see mutations such as ALK, EGFR, ROS1, RET, MET, HER2 and BRAF.

I want to make a quick point that there’s another biomarker that we use in lung cancer that’s not technically a mutation, per se, but it’s very important for clinicians to obtain, and that’s called a PD-L1 score. This is a score that helps clinicians decide how effective immunotherapy can be in a certain patient.


Are some mutations more common than others?

Dr. Patil:                     

Yes. I mean, there are mutations that are very common. I think to answer that question a little bit more in this cleanly, I would say that there are some mutations that are very common in lung cancer such as TP53, but these are mutations where we can’t actually, we don’t have a targeted approach to manage them. So, when I refer to common mutations, I’m talking about mutations where I either have a drug that is available and able to target the mutation, and this drug is being either investigated in a clinical trial, or is commercially licensed.

In lung cancer, the most common oncogene would be KRAS, and there, there’s a couple of exciting clinical trials where there are some promising drugs in development for treating this specific mutation which has been very challenging to treat in lung cancer.


How is genetic testing for lung cancer different from hereditary genetic testing?

Dr. Patil:                     

That’s a great question. We have learned that there are several cancers, such as breast and colorectal cancer, where there’s clear evidence that there are hereditary genes that increase an individual’s risk for developing cancer. I personally prefer the term molecular testing over genetic testing as this emphasizes that we’re looking for specific mutations that are really acquired during a patient’s lifetime and typically not inherited.


How do genetic mutations in lung cancer affect treatment options for patients?

Dr. Patil:                     

Well, the finding of a molecular alteration, or an oncogene, is really important for a patient with lung cancer because it offers a unique class of therapy that the patient would not have had otherwise. Finding a mutation is important because it allows patients to have treatment options outside of traditional chemotherapy or immunotherapy.


Dr. Patil, how do targeted therapies work?

Dr. Patil:                     

Targeted therapies are interesting. They work by specifically targeting and blocking specific mutations in lung cancer, and so it’s kind of like a lock and key model. By blocking the binding site of a mutation, the treatment actually prevents that cancer cell from properly functioning, and this in turn causes the cancer cell to be unable to divide, unable to grow, and ultimately results in cancer cell death. Targeted therapies typically come in either a form of a pill.

That’s the most common way that patients take targeted therapies.

As an aside, I will note that there’s a very unique class of targeted therapies called antibody-drug conjugates. These are really fascinating molecules. They are treatments that are consistent, but very complex, bioengineered structures, so what you have is an antibody that targets some protein on the surface of a cancer cell, a mutation.

This antibody is linked to a chemotherapy payload, and so it allows for very potent chemotherapy to be delivered effectively and selectively to cancer cells, sort of like a Trojan Horse effect where the antibody finds the cancer cell, goes inside the cancer cell, and once the whole structure is inside the cell, that’s when the chemotherapy is released.

Therefore, it’s a way of giving chemotherapy in a more targeted way, and there are several of these in clinical trials right now.


Well, you mentioned patients taking pills. What other treatment regimens are there for the targeted therapies?

Dr. Patil:                     

For targeted therapies, the most common is a pill. The schedule depends on the mutation, so it can sometimes be once a day or twice a day. And then, there are IV treatments that we see, and that is the antibody drug conjugate that I’m referring to where patients will have to go to a infusion center to get those. But to my knowledge, most of those are still in the context of a clinical trial, and so I think it’ll be a while before we start seeing them commercially licensed.


How do the newer therapies differ from the more traditional chemotherapy?

Dr. Patil:                     

Chemotherapy is still an important tool in an oncologist’s arsenal.

It works by killing, or rather it works by affecting a cancer cell’s ability to divide and grow. The logic here is that since cancer cells typically grow faster than normal cells, chemotherapy is more likely to kill cancer cells. It should be noted that while that is true, there are certain cells in the human body that grow very quickly as well, such as hair follicles, the lining of the mouth, and cells within the bone marrow. And so, as a result, it’s very common that the side effects of chemotherapy typically affect these cells, so you typically see hair loss. You see mucositis, or inflammation of the mouth, diarrhea, and low blood counts, and this a general side effect of chemotherapy.


Are there common side effects for some of the newer therapies as well?

Dr.  Patil:                    

That’s a great question and the way I’m going to answer that is it depends on the mutation that the targeted therapy’s affecting. So, a mutation that I’m going to use as an example is a mutation called EGFR. Now, this is a mutation that we see in lung cancer that causes cancer cells to grow, divide, and metastasize.

But EGFR is interesting because it also is found in normal cells, and specifically it’s found in the cells of the skin and the gut lining. This is an example where you’re giving a very targeted therapy that’s trying to attack just the cancer cell, but because normal skin cells and gut cells have this EGFR receptor, the side effects there tend to be rash and diarrhea. Now, that’s unique to EGFR. There are other drugs such as the ALK mutation or the ROS1 mutation that do not have this side effect because that specific receptor is not found in the human body.


Oh, I see. Well, how is the effectiveness of treatment monitored?

Dr. Patil:                     

Typically, I have the philosophy that patients generally know their body and can tell when symptoms are getting better or worse. So, as a guiding principle, I rely on patient input very heavily. That being said, I corroborate that experience with some testing. In my practice, I frequently use what we call serum tumor markers, so these are very nonspecific-like tests that sort of let us know if there’s cancer type proteins in the blood that we can detect while they are on targeted therapy.

And then additionally I would recommend that patients get scans frequently, at the minimum every three months if they are on targeted therapy and doing otherwise well. That includes a CT scan of the chest and abdomen, and in certain cases, an MRI of the brain, if there were brain metastases before.


Is it necessary to retest at any time?

Dr. Patil:                     

This is a good question and it’s an evolving question. In general, I strongly advocate that patients who are on targeted therapies obtain additional molecular testing after they’ve progressed, and the reason is the following. Cancer cells evolve resistance mechanisms to overcome targeted therapies and understanding these resistance mechanisms can be quite helpful in designing next lines of treatments.

A very good example of this is in EGFR lung cancer. The very first type of targeted therapy for EGFR positive lung cancer was a drug called Erlotinib. What we had seen was that when patients were on this drug, Erlotinib, they would respond, and they would do really well for a period of time.

But after a period of time, patients would progress on this therapy, and a very common mutation that we would find, once they progressed was a mutation called T790M. By biopsying this patient and finding this mutation, it was very helpful because it allowed the medical community and researchers to investigate a new drug called Osimertinib, which can overcome that resistance mutation.

And we’re learning a lot about resistance pathways and resistance mutations in lung cancer, so I think it’s very important that patients who are on targeted therapies specifically get retested and re-biopsied.


Let’s move on then. Dr. Patil, what are you excited about in lung cancer research right now?

Dr. Patil:                     

I thought ASCO 2020 this year was a very exciting cancer conference, and I’m very excited about where lung cancer research is going. I think there are two areas to be very hopeful about.

First, is that there have been several oncogenes or mutations that we had known about for a very long time, but there was just no targeted therapy available. I think in the next several years, you’re going to start to see more and more targeted therapies available for patients who have otherwise rare mutations.

And examples of this would include KRAS G12C, RET, Met and HER2, so this is very exciting because these were mutations that we had known about for a long time, but just until more recently really haven’t had any successful therapy for.

The other area that’s very exciting is that we’re starting to see the use of targeted therapy and immunotherapy in patients who have earlier stage cancer. So, there was a lot of talk this ASCO about using targeted therapies in patients who have, for example, Stage 3 lung cancer, and is there a benefit in doing that? I think that’s going to be a very interesting development of patients who have Stage 1 to 3, which we typically treat with curative intent, how do we make sure that they improve their outcomes and really stay cured?


Right. What would you say to patients who are nervous about participating in a clinical trial?

Dr. Patil:                     

That’s a great question. I really appreciate you asking that. In general, I would highly recommend patients consider clinical trials. I think there’s a couple of things to point out. It’s very important to remember that clinical trials are evaluating novel therapies as compared to current standard best practice. So, placebos are rarely used in cancer research unless there’s no known effective therapy. It’s important to remember, it’s not ethical to have someone take placebo if there’s known treatment that work, so when a patient enrolls in a clinical trial, sometimes they don’t know which treatment they’re getting, but at least they will know that whatever treatment they’re getting is the best current standard of care.

I want to also point out that clinical trials really answer, in my mind, two important questions. The first question is, is the new treatment safe? And does the new treatment work better than current standard of care? These are really important questions for advancing the field, especially in cancer research. Clinical trials are a small part of the research. I mean, when a drug that’s getting introduced into a clinical trial, it’s sometimes helpful to think about all the investment that has gone in before them. The drug has to be discovered, created.

It has to be purified, tested in animal studies, before it ever reaches human studies. And so, there’s only the most promising agents are actually ever introduced at clinical trials, and there’s a lot of data to show that the biggest barrier for completing clinical trials, and therefore understanding which treatments are effective, is really participant enrollment.

I think there was a recent study that showed that about, I think less than five percent of patients, less than 1 in 20, with cancer will ever take part in a clinical trial, Therefore, if a patient has that opportunity, I would strongly encourage them to consider it.  


Do you think a second opinion is necessary? Would you encourage patients to consult with another specialist?

Dr. Patil:                     

In general, I’m a big advocate that patients should get all the information they need to make informed treatment decisions, and if that involves getting second opinions, I welcome that.

 I think that a knowledgeable patient is an empowered patient, and certainly a knowledgeable patient is one that I think will be able to guide themselves through a very complex medical journey. So, in general my philosophy is I’m always encouraging of second opinions if the patient feels that they need more information to make a best decision.    


What advice do you have for patients who may be hesitant to speak up and advocate for themselves when it comes to their care and treatment?

Dr. Patil:                     

Great question. In general, I’m a big believer that an empowered patient is a patient that can make really good medical decisions as they navigate their own medical journey. Ultimately, it’s important for patients to be knowledgeable and seek multiple opinions. Really get the best advice, so that they make the best decisions. Oncology is a very complicated field. The treatment options can be very nuanced.

Therefore, it’s important to know that when a decision is presented to a patient, that it is a decision that is made with the knowledge of what is the best standard of care. But if the patient doesn’t feel like they have the most informed data to guide their own medical decision making, then it’s really important for them to advocate for themselves.

To that point, especially for some of these rarer mutations, there are many social media patient advocacy groups that are very, very, very well organized, very effective, and have a list of really useful questions. Some examples of that are the ALK Positives and the EGFR Resisters.


Okay. I would be remiss if we didn’t discuss COVID-19 to some extent. What should lung cancer patients be considering at this time?

Dr. Patil:                     

This is also a very important and timely question. lung cancer patients are certainly at very high risk of complications from COVID-19. And it’s understandable, especially given the kinds of treatments that patients with lung cancer receive, that there’s a lot of them will wind up having compromised immunity which makes them at increased risk for adverse outcomes from COVID-19. That being said, I think it’s really important that this be balanced with the actual risk of untreated or inadequately treated lung cancer, which is also a major medical concern. What I tell patients is that, at least at our institution, we do everything we can to create an environment that is as safe as possible from a COVID mitigation standpoint.

But at the end of the day, untreated lung cancer can have a very aggressive course, and so making sure that patients understand that as we try to move things to a more telemedicine type approach, that there are some things where you really just have to come and see your doctor. Not everything can be done virtually.


Right, and my next question was is telemedicine the best approach right now?

Dr. Patil:                     

Well, that’s also, I’m going to answer that in a somewhat frustrating way, which is that there’s – yes and no. I think telemedicine is helpful for patients who have very stable disease and are on anti-cancer treatment, so specifically a patient on targeted therapy, for example.

A pill once a day. Their last scans show that they’re doing really well. They feel well. They’re exercising every day. That patient, probably we can do a visit virtually and just make sure and check in that there’s nothing new or concerning that’s come up.

The other patient that probably I can see a role for telemedicine is someone who had, let’s say, a Stage 1 lung cancer that was treated with surgery, and we’re just monitoring them on surveillance. That patient probably doesn’t have to come into the clinic to see us. But in general, the thing about lung cancer is that most patients are getting some kind of chemotherapy or immunotherapy and will be coming into an infusion center, and so what I would tell patients is if there’s any new or concerning symptoms, to a very low threshold for seeking an in-person evaluation.


As a researcher in this field, Dr. Patil, what do you want to leave the audience with? Are you hopeful?

Dr. Patil:                     

I’m very hopeful. I think, it’s kind of amazing when I look at the history of lung cancer and where the field was in the 2000s, now that we’re in 2020, and what remarkable advances have been made in 20 years. It’s worth reminding patients that in 2000, there was, platinum chemotherapy was the first line for metastatic lung cancer, and then there was a second line chemotherapy and that was basically it. Now we’re in an era where we have extensive molecular testing of lung cancer. We’re identifying new mutations that can be targeted with very sophisticated pill-based therapies. We have immunotherapy. We’re learning about how these combine with each other to produce the most optimal outcomes, so I think in 20 years a lot has been achieved, and I’m really excited to see where we go from here.


Dr. Patil, thank you so much for joining us today.

Dr. Patil:                     

Thank you. Thank you for inviting me. This was wonderful.


And thank you to all of our partners.

To learn more about lung cancer, and to access tools to help you become a more proactive patient, visit I’m Katherine Banwell.  

September 2021 Digital Health Roundup

More and more technologies, from gaming technology to artificial intelligence, are being used in the quest to beat cancer. Electronic appointments are helping with taking medicine, and steps are being taken to protect patient data.

The Federal Trade Commission (FTC) is working to combat breaches of personal data by making health apps more accountable when it comes to telling patients their data has been exposed, reports In a recently released statement, the FTC announced that health apps will need to notify users, the FTC, and possibly the media when data is compromised, and if they fail to make the notifications, they could be fined more than $40,000 a day. Learn more here.

Electronic directly observed therapy (eDOT) is a technology that is becoming more popular for providing medical services to patients, especially when it comes to taking medicine correctly, says The eDOT appointments can be scheduled live, or they can be recorded. Providers can ensure that medications are taken properly and on time, and they can observe any side effects that may occur. Providers can also provide coaching or training during the appointments. The eDOT appointments require less time and resources than in-person visits. Find out more here.

Researchers are using 3D printing to create models of glioblastoma tumors, reports The models are made by taking part of the tumor from the patient’s brain and using it to print a 3D model of the tumor and then to fill it with the patient’s blood, creating a viable tumor. Researchers are then able to test how well various treatments will treat the tumor before they try them on the patient. Glioblastoma is the most common brain cancer in adults and is an aggressive cancer with poor prognosis. Learn more here.

Researchers have been inspired by gaming technology to create a virtual tool to study cancer, reports The tool, a virtual cancer tracker named Theia, for the Greek goddess of sight and clairvoyance, allows researchers from around the world to interact and study the cancer using 3D models and virtual reality. Get more information here.

A new type of artificial intelligence (AI) is being developed to detect lung cancer, says It is a blood testing technology that can potentially detect over 90 percent of lung cancers. The test is called DELFI, which stands for DNA evaluation of fragments for early interception, and it can detect the fragmentation of DNA from cancer cells that circulate in the bloodstream. Researchers are hopeful that if lung cancer screening is as simple as a blood test, more people may get screened, and the cancer could be detected at earlier, more treatable stages. Learn more here.

Tips for Navigating Your Rights as a Cancer Patient

According to the CDC, 650,000 cancer patients receive chemotherapy at outpatient clinics each year. Some have to go through different types of treatment along the way. Others need in-home care or prescription medications. Some might need more than the standard when it comes to rounds of chemo.

Whatever the case, when you’re a cancer patient, you’re more than a number. There is no “cookie-cutter” way of doing things, which is why it’s important to know your rights and stand up for them throughout the treatment process.

It’s understandable to feel nervous and even overwhelmed by a cancer diagnosis. But, if you choose to take charge of your rights and be an empowered patient, you’ll be more comfortable and encouraged throughout treatment. Let’s take a look at a few of those rights and how you can navigate through them to stay safe and informed.

The Right to Informed Consent

Information is your best friend as a cancer patient. That’s why it’s so important to work with a team of medical professionals you trust. With that, you have the right to informed consent about any suggested treatment option. The basics of informed consent include:

  • Explaining information so you can make a decision
  • Your ability to make a decision
  • Your understanding of the information
  • Your voluntary decisions about treatment

Nearly every scenario throughout your treatment process should require informed consent. Everything from surgeries to advanced medical testing should be thoroughly discussed before your healthcare provider does anything.

Not only will informed consent make you more comfortable with procedures, but it can also help to promote your safety. You have the right to feel safe as a patient. If there is a procedure you’re not comfortable with, it’s your choice to say no. Alternatively, you can ask for more information from your doctor. Don’t be afraid to participate in major decisions about your care. This is your life, after all.

Because of the constant improvements in healthcare and technology, you might end up being okay with a procedure that you were hesitant about. Give your provider the chance to explain those advancements to you by questioning things when you’re uncomfortable.

The Right to Privacy

Cancer can often feel like a very public thing. Families and friends regularly get involved. Some people even make groups on social media to show support throughout treatment. Those are great ways to feel surrounded by love and to gather strength from others.

But, not everything about your treatment should be public.

Thanks to the HIPAA act of 1996, you have the right to obtain your medical records. You also have the right to the privacy of those records. It’s up to you who can view them and who can obtain them (and for what purposes). Improper access can cause serious consequences. As a patient, it’s important to know who can legally view your records and who can’t.

Keep in mind that most medical records include everything from doctors’ notes to medical test results. Knowing who can see them and what they can be used for can offer you peace of mind and let you know they aren’t just being passed around to everyone for no reason.

The Right to Clear Information

Perhaps the most important and impactful right you have as a cancer patient is the right to clear and concise information. The other two rights listed here can easily fall under the umbrella of this one. Without being educated on every last detail of your treatment, you could go into it with fear, confusion, or without 100% certainty that it’s what you want.

Informed consent covers some of that. Your doctors should explain to you what you can expect from each step of treatment. But, clear information goes beyond the treatment itself.

You also have a right to know the details of every service and what it will cost. If you’re someone without insurance or if your plan won’t cover it, you might consider opting for something else. Unfortunately, medical care in this country isn’t currently an inherent right. That means there are some gaps in financial support that can impact your treatment. Some government assistance programs can help you fill in those gaps. For example, Medicare Part A covers:

  • Inpatient care
  • Skilled nursing care
  • Hospice care
  • Home services

Medicare Part B can also cover many of the prescription drugs often associated with clear treatment. If you happen to need multiple MRIs during your treatment, Medicare can also help as long as you’re in a hospital that accepts it. These are things to speak with your doctor about ahead of time. While your financial situation shouldn’t have to determine your treatment, it might come down to that for some people.

Cancer is a difficult thing to deal with, but it becomes even harder when you don’t fight for your rights. Keep these rights in mind as you navigate through treatment. Knowing what you deserve can help you to feel more empowered in a time where things might seem uncertain and overwhelming.

Empowering One Another: Helping Your Healthcare Team Help You 

Life is all about making choices, and I think the same could be said about cancer in some capacity. If we take the time to think about it, we have choices in: 

  • What doctor we see for diagnosis and whether we seek a second opinion 
  • How we’re treated by our doctors and healthcare team 
  • What type of treatment we receive, if we’re lucky 
  • How we feel about our diagnosis and perceive our prognosis 
  • What we do with the information we receive and the knowledge we gain 

So you see, it’s all about empowering ourselves and our healthcare team. But how do we go about empowering our healthcare team in the choices we make? Here are ways to try: 

  • Tell them about your needs, including spiritually, emotionally, physically, and mentally. How can your healthcare team meet these when: 
  • Explaining your diagnosis and prognosis: 
  • Do they sugarcoat or “give it to you straight” based on what you told them about how you want to receive the information? 
  • Do they give all the details or only the “need to know” info? 
  • Do they communicate with you in a way that you understand? 
  • Do they give you resources to further educate yourself with?

Choosing your treatment options: 

Do they give you choices based only on what they know, or do they take into consideration research that you’ve done on various options, clinical trials, etc? 

Do they help with options based on what your insurance covers? 

During the treatment process: 

  • Are they readily available (or at least within 48 hours) to answer questions? 
  • Do they explain the process as it continues (ie. next steps)? 
  • Do they check on you to see how you’re doing? 

After treatment ends: 

  • Do they explain next steps? 
  • How often to get blood work, scans, routine appointments? 
  • Do they provide a survivorship care plan? 

All of this work that we do as patients goes hand in hand with how we want to be treated by our healthcare team. As we empower ourselves, we empower them too, and there’s nothing better than a great team that’s on the same page. 

#patientchat Highlights – How Can You Utilize Telehealth Services?

Last week we hosted a “How Can You Utilize Telehealth Services?” #patientchat with Diverse Health Hub (@DHealthHub). The #patientchat community came together on Twitter for a lively discussion. Take a look at the top tweets and full transcript from the chat.

Top Tweets

What are known misconceptions of telehealth services?

What barriers present themselves with telehealth services?

If anything, what can we do to address and help raise awareness about them?

Full Transcript