The National Coalition for Cancer Survivorship (NCCS) has been collecting questions from patients and survivors on the coronavirus crisis and is addressing these questions through a series of webinars and podcasts.
Leading experts from the American Society for Radiation Oncology (ASTRO) Ronald D. Ennis, MD and Louis Potters, MD joined NCCS CEO Shelley Fuld Nasso to discuss the effects of the COVID-19 pandemic on radiation oncology practices and answer questions from cancer patients. NCCS is pleased to co-present this conversation with ASTRO.
The conversation focused on how cancer patients can receive life-saving radiation treatment while implementing safety and quality measures during the COVID-19 pandemic. Shelley Fuld Nasso also posed important questions and concerns from cancer survivors about their care. The discussion reminded us of an important theme during this time: cancer does not wait.
Together, we hope this discussion informs cancer survivors, and their loved ones, about how to get the help they need and live well during and after cancer treatment.
I think the positive story in this is that, as we’ve gone through this—and we’ve been in a very busy, intense COVID-positive environment—at the end of the day, we really do not need to compromise the care of our patients.Louis Potters, MD
Is It Safe to Receive Radiation Treatment?
Dr. Ennis said he is proud of how the radiation oncology community came together during this time and says that their first goal was ensuring the safety of patients and staff and that “goal number two was to continue patient care.”
Dr. Ennis said that in most cases, radiation treatment does not affect a patient’s immune system or their odds of surviving COVID-19. But he stressed that patients need to have that conversation with their physicians:
Radiation by itself these days is given generally to very small volumes of tissue, and the immune system is very minimally affected or not affected at all. So anyone who has that concern, obviously, needs to speak to their particular physician about their case, but writ large radiotherapy as done for most cancers will not impact your immune system.
The one exception to that of significance is when radiation is combined together with chemotherapy, which is common. A significant minority of patients are treated that way with curative intent, and in those situations, both the chemo and the radiation can contribute to some weakening of the immune system. In that situation, obviously a conversation needs to happen about whether it’s still appropriate and best to proceed or best to hold off for a period of time to allow the COVID pandemic to get under better control, but it is important not to assume that cancer treatment will be dangerous for you. There are studies coming out suggesting that for many situations, cancer treatment does not impact how someone does should they have COVID, nor make them more predisposed to get it. But there are certainly some situations where it is an issue and in the end, it’s a conversation between the patient and his health care team.
Dr. Potters talked about how radiology practices have been able bounce back quicker than other areas of cancer care:
When you look at the three legs of cancer care—surgery, radiation, and chemotherapy—I think in a lot of ways radiation has turned out to be the most resilient. We’re not reliant on the operating rooms—which in a sort of binary manner just closed overnight and limited the surgical oncological approach for a lot of patients—and radiation is a local treatment without the immunosuppression that is typical with chemotherapy. So our patients are tolerating care really without atypical side effects or risk that they otherwise wouldn’t have.
That’s not to say that we aren’t monitoring and assessing our patients carefully. One of the things that we recognized was that we certainly don’t want our patients during treatment to need to go to the hospital, whether it’s an emergency room for evaluation or the need to be hospitalized because of treatment-related morbidity or complications. And so we put into place a very aggressive weekly management program for patients at high-risk—the head and neck [patients], some of the pelvic floor patients, some of the lung patients, and that’s really worked very well in terms of maintaining fluid status, duration, nutrition, and managing of side effects. …
I think the positive story in this is that, as we’ve gone through this—and we’ve been in a very busy, intense COVID-positive environment—at the end of the day, we really do not need to compromise the care of our patients.
Watch the video above to hear more about how radiation oncology is responding to the COVID-19 pandemic.
About the Guest Speakers
Ronald D. Ennis, MD is a radiation oncologist at the Cancer Institute of New Jersey. He has expertise in prostate cancer, genitourinary malignancies and gynecologic malignancies. He has extensive experience with high dose-rate and low dose-rate brachytherapy, stereotactic body radiosurgery (a.k.a. “Cyberknife”), intensity modulated radiotherapy, three-dimensional conformal radiotherapy, image-guided radiotherapy, hormone therapy, surveillance and survivorship. Dr. Ennis strongly believes in a compassionate patient-centered approach, finding the optimal care for each patient taking into account his/her individual needs, preferences and medical conditions.
Louis Potters, MD is chairman of the Department of Radiation Medicine at Northwell Health and professor at the Zucker School of Medicine at Hofstra/Northwell. He is also immediate past Chair of the Northwell Health Physician Partners Board of Governors and executive Committee. Dr. Potters is a practicing radiation oncologist and an internationally recognized expert in the management and treatment of prostate cancer. Board-certified in internal medicine and radiation oncology, Dr. Potters oversees one of the largest radiation oncology departments with a faculty and staff devoted to excellent patient care, research and the education of tomorrow’s oncologists.
https://canceradvocacy.org/wp-content/uploads/2020/05/ASTRO-COVID-19-Webinar-ad.jpg6001200actualizehttps://canceradvocacy.org/wp-content/uploads/2020/06/NCCA-Logo.pngactualize2020-05-11 11:51:012020-07-28 05:45:00Radiation Oncology Care During COVID-19: How Are Cancer Patients Getting Life-Saving Radiation Treatment?
NCCS hosted a conversation this week about managing anxiety, stress, and grief with psychologist Dr. Imani Price and a panel of cancer survivors and advocates. Dr. Price shared tips on how to cope with stress during this unique time and included strategies such as connecting with friends and family virtually, taking time to get outside each day, getting sufficient sleep, and eating well.
Randall Broad, Erin Cummings, Loretta Herring, and Sharon Rivera-Sanchez, all cancer survivors and patient advocates, shared their struggles and advice for coping with the isolation and fear that many cancer survivors are facing during the COVID-19 pandemic.
In her opening comments, Dr. Price said:
The uncertainty of the times is leading to many of us feeling depressed, some of us are feeling anxious, and there’s even secondary PTSD that’s occurring as a result of everything that’s going on. This uncertainty is making many of us feel very vulnerable, and our lives are out of our hands and out of our control. Control of our lives helps us to feel a sense of well-being, and ultimately a sense of safety. Many individuals have shared with me that they are feeling similar to the way they did when they were first diagnosed with cancer. That uncertainty, not quite knowing what this is going to do long-term and how COVID-19 can impact them and their family.
Despite all of the challenges, I’m encouraging everyone to maintain and reclaim control over their lives, despite the hunker-in-place and all the other things that are now in place so that we can stay healthy and safe.
https://canceradvocacy.org/wp-content/uploads/2020/04/Managing-Stress-Webinar-feat.jpg6001200actualizehttps://canceradvocacy.org/wp-content/uploads/2020/06/NCCA-Logo.pngactualize2020-04-17 12:39:542020-07-06 10:20:36COVID-19 and Cancer Panel Discussion: Managing Stress, Anxiety, and Grief During Uncertain Times
NCCS has been collecting questions from patients and survivors on the coronavirus crisis and decided to address these questions through a series of webinars and podcasts. Last week, NCCS hosted a conversation with cancer control expert and epidemiologist Otis Brawley, MD.
Watch the full video conversation and read excerpted portions below.
NCCS CEO Shelley Fuld Nasso moderated the discussion. “We knew exactly who we wanted to be our first guest speaker in this series. Dr. Otis Brawley is a Bloomberg Distinguished Professor at Johns Hopkins University, an oncologist and an epidemiologist. He’s also a truth teller, a myth buster, a straight shooter, and an all-around nice guy. When we called him last week to ask for advice on how we can best serve cancer patients during the scary and unpredictable season, his response was simple. ‘Just be honest with them,’ he said.”
Dr. Brawley started his opening comments talking about the nature of the coronavirus that causes COVID-19, saying, “Many of us have had coronaviruses and we just thought we had a cold. Indeed, some people who do well with the COVID-19 virus do well with it because they have had previous exposure to coronaviruses and it causes a partial vaccination, so to speak.”
Dr. Brawley also described who is at higher risk for the disease:
The immunocompromised—certainly people who have lung disease like COPD and asthma, people with diabetes, people with bad cardiac disease like congestive heart failure. We have some evidence that people who have hematologic diseases–leukemias, and lymphoma are at higher risk than people who have solid tumor diseases.
However, there is some data from China that people with GI and lung cancers and people with metastatic disease are at both higher risk getting the disease, and higher risk of not doing well from the disease, compared to the normal population.
Dr. Brawley addressed the mask issue:
The N95 masks that many people use in hospitals many healthcare providers use, EMS use, for example, those masks actually can protect the individual from breathing in the virus. The normal paper or cloth masks that we use in the operating room, or the people will use out in the public actually prevents the wearer from sending more particulates out into the air that other people can breathe in.
So the way to think about this recommendation recently for wearing the mask is, the assumption is the person wearing the mask may be spreading the infection and the mask prevents the spreading of the infection. It doesn’t protect the person who is wearing the cloth mask. One of my colleagues actually said, “Not wearing the mask in public is not suicide, it may be homicide.”
Brawley explained that there is a good reason for the new recommendations for wearing masks. “Many experts are now of the belief that perhaps half of all people who get infected with COVID-19 have no symptoms whatsoever,” he said, “and they may be totally asymptomatic, walking around shedding the virus.”
Dr. Brawley said that since this is a new disease and the screening around the country hasn’t been robust, “I can only say 20 percent of people who get symptomatic end up going to the hospital and less than half of them end up in near-respiratory arrest, or respiratory arrest requiring a ventilator.”
Dr. Brawley also described how cancer care delivery has been affected:
Many of us, many hospitals, are not doing adjuvant chemotherapy for breast, colon, and lung cancer right now, because we have done a weighing of [two things]: What’s the odds that this chemotherapy is going to prevent the person from relapsing in the future, versus the odds that it’s going to increase their chances of getting coronavirus and having a bad outcome today? Keep in mind, if we lower their white count and they get coronavirus, that is a ticket to not doing well with the disease. So many hospitals and clinics are only giving chemotherapy to people who truly need chemotherapy right now.
Brawley had a message for those touched by cancer:
This is a really difficult time. My recommendation to anyone who has cancer or anyone who lives with someone who has cancer is to stay indoors, stay away from other people, do all the things that we’ve been talking about: hand-washing, avoid people by six feet if you have to go out.
Indeed, we all need to try to be supportive of each other and try to prevent the spread of this disease until we can come up with some type of a vaccine which would be useful in preventing people from getting sick from it.
Following opening comments, NCCS CEO Shelley Fuld Nasso conducted a Q and A with Dr. Brawley. Selected questions and answers, lightly edited for clarity, are below.
Otis Brawley, MD and NCCS CEO Shelley Fuld Nasso.
Are cancer survivors are at greater risk [for COVID-19] even after treatment? Or suffering worse effects if they get it? And how does the type of cancer, treatment modality, and the length of time from treatment matter in assessing risk?
This disease is so new, no one has definitive answers to those questions. Those studies have yet to be done. Indeed, we need to study those over time, and we need to study cancer patients and non-cancer patients who get COVID and do well, but do they have sequelae? For example, in the 1917-1919 Spanish flu, people who got that were at a higher risk of Parkinson’s disease as they got older.
But the answer to your question is we don’t know. The Chinese have told us that people who have hematologic disease that is active don’t do well when they get infected. I am personally very concerned about people who got adjuvant chemotherapy for breast cancer or colon cancer a year or two ago and have finished that. We know that their immune systems are still damaged, if not totally recovered, from that adjuvant chemotherapy. So I worry about them, but I have no data on them, I don’t think anybody has data.
For cancer survivors who have completed treatment how should they think about regularly scheduled scans, testing, and follow-up appointments? I know there’s been a lot of movement toward telehealth, but you can’t do a follow-up scan by telehealth. How should they think about that?
People who have non-aggressive tumors—these are the folks who have [something] other than the fast-growing lymphomas, other than the very fast-growing breast cancers—most of those people, who should always talk to their doctor about this, their doctor is going to, I think, explain to them that they can delay the every-three-month or every-four-month CT scan looking for relapse right now. The risk of them being exposed while they’re out and about going to the doctor, and the doctor’s office and so forth, is such that those every-three-month and every-four-month CT scans for surveillance, in most diseases can be put off right now. You can miss one, we’ll catch up in July or August when things are a little bit better.
The folks who have the things that grow fast, like the Burkitt’s Lymphomas that just went into complete remission in the last couple of months, who are getting CT scans every three months—they need to talk to their doctors. For them, I think it is worth the risk and they ought to be getting those CT scans still. But it’s going to depend on the disease. Most people can skip going to the doctor, and we have converted at [Johns] Hopkins—most of our outpatient follow-up is being done by videoconferencing right now, and that’s working out well.
We’ve heard about treatments being delayed or cancelled, and you talked about the decisions in some cases to forgo the adjuvant chemotherapy, and that patients are skipping appointments that are not absolutely necessary. How are patients supposed to think about what is absolutely necessary? And what is your advice to someone who learns that their adjuvant chemotherapy is now not recommended, which gives them a higher risk of recurrence?
I’m hoping that you have a good relationship with your doc and you can talk to him or her. There are some people whose adjuvant chemotherapy is going to reduce your risk of relapse by 10%, and maybe your risk of getting COVID-19 is high, and the risk of not doing well is high, and so a 10% reduction is not worth it. There are other people where adjuvant therapies is going to reduce their risk of relapse by 40 or 50 percent. And there are some doctors who are really trying to talk to the patient over Zoom or WebEx and trying to figure out what the patient’s values are. There are certain patients who should get the adjuvant chemotherapy right now, and we are giving them the adjuvant chemotherapy, but there’s a bunch of patients who can forego it.
Can you talk a little bit about patients who are in treatment for metastatic cancers and how is this affecting their treatment?
Many of the metastatic patients are still getting their chemotherapy and still getting treatment because the feeling is that if we were to let the disease grow during this period of time, it would be inappropriate. When it looked like the shutdown in the economy would only be 2 or 3 weeks, some of us were delaying that next cycle of chemotherapy. Now, quite honestly we need to have our economy shut down into June 1 at least, probably further. Now that it looks like we’re going to be going a much longer period of time, most oncologists are electing to give chemotherapy to people who have metastatic disease, unless there’s an occasional person—you see this sometimes with breast cancer especially—who has metastatic disease but their disease is quiescent. Yes it is metastatic, but it’s not growing. That person might benefit from observation right now as opposed to continuing some type of chemotherapy.
Should those in treatment or recent treatment be wearing N95 masks, especially if they’re going to their treatments? Would it help protect them?
The problem with an N95 mask—when I was fitted with an N95 mask, they put the mask on you, figure out what size you need to wear for your face, and then they spray this sweet-smelling stuff and they ask you, “can you smell or taste the sweetness?” And if the answer is yes, the mask is not fitting correctly. You’re not allowed to wear beards with an N95 mask, for example. And so my concern is—I like the idea of cancer patients wearing N95 masks—this is Otis speaking, this is not CDC policy—I like the idea of cancer patients wearing N95 masks, but on the other hand, I’m worried they’re not going to have them fitted correctly. And number two, I’m worried when we start saying “wear masks,” that that’s going to cause people to—I hate masks and I’m always fiddling with them and moving my hands up around my face actually puts me at greater risk than wearing a mask. So I like the idea of an N95 mask if the person’s wearing it correctly, and if it doesn’t cause that individual will start fiddling with their face.
There’s been a lot of talk about in-home infusions for some cancer patients, and anecdotally we’ve heard some mixed views from patients. Some were in favor of it because it would help them manage their risk, and others had concerns about safety. We also heard mixed views from providers from a safety perspective. What are your thoughts?
Certain drugs I think can be administered at home, by usually a visiting nurse or someone who is skilled at doing that sort of thing. Certain drugs I think ought not be administered at home. For example the taxanes, Taxol and Taxotere, we have a good 3 to 5 percent of people who get those drugs have an allergic reaction to them. I want them to be in a medical environment that was able to give them more than just a shot of epinephrine for wheezing and shortness of breath. So there’s certain drugs where I think home infusion is fine, and there’s certain drugs where I would rather not see home infusion. I think that person ought to come to the hospital, or to the doctor’s office if they truly need that drug. Also, by the way, one other thing to keep in mind many of these chemo therapies are themselves carcinogens. I’m going to be concerned about exposure of people in the house to the leftover drug and that sort of thing. We have to be very mindful of that too.
Even as we’re talking about risk, we’re getting a lot of questions from from patients about their specific care and how it may be altered or interrupted due to the coronavirus and about their specific risk. Can you give some advice to cancer survivors about how to communicate with their doctors during this time?
Yeah, I actually think—I am heavily into being open and honest. “Doc, this is what’s on my mind.” The first thing that’s going to be on a lot of people’s mind, “is my cancer growing while I’m not getting treated? Am I going to be worse off because I’m not getting treated?” I’m really into open, honest communications. If you can’t have a good, open conversation with your oncologist, perhaps he or she should not be your oncologist. Unfortunately, this is a fine time to change doctors!
We’re hearing from some metastatic patients who are hearing about rationing ventilators, and that if they need care they shouldn’t admit that they’re that they have metastatic cancer. Are these types of decisions happening anywhere yet in the United States or are they just a grim possibility that we’re preparing for?
I am not aware that rationing of ventilators is happening in the United States at this time. I am aware of some emergent transportation of ventilators from one hospital to another, happening in New York—New York City, so there was not a shortage of ventilators. I really do encourage people to be very honest with their healthcare providers about their past medical issues. Some elements of their past medical history are going to be incredibly important. Certain drugs I would not use, for example, in people who have been treated for metastatic cancer. Even people who’ve been treated to complete remission from metastatic cancer, so please be open and honest about that. I hope nobody ever has to go onto a ventilator, but I am not aware in the United States at this time of anyone being deprived of a ventilator because of—they wanted to go on to the ventilator and they had a past medical history of something, or they wanted to go on a ventilator and they were of a certain age.
In planning for the potential of these shortages of ventilators, some institutions have may have had guidelines that include terminal cancer in the group of people who would be offered supportive care. But as we all know, many people live with stage 4 cancer for many years and and can be very stable with that, but yet it would still consider that to be a terminal cancer. You told us a different definition of terminal cancer, so can you talk a little bit about that and then should we be advocating for more specific guidelines rather than this broad brush of terminal cancer?
Terminal cancer, in the mind of an emergency room doc, I believe, is someone who has cancer and is going to die of that disease over the next six to eight weeks or sooner. It’s distinctly different from stage 4 disease. I say that because one of my dear friends is a patient that I took care of in 2002 and 2003, and we diagnosed her with metastatic breast cancer to brain back then, and I still talk to her. She’s living with metastatic disease now for 18, 19 years. There is a difference between stage IV and terminal. Now there are some people who have stage 4 disease who are terminal. There are some people who have congestive heart failure who are terminal as well. By the way, we have really good data to show that people who are very sick who go on to the ventilator—going on to the ventilator, by the way, is not a pleasant experience at all. Many people who have come off of it have described it as being waterboarded. I’ve actually had patients who said “I never want that experience again—don’t put me on the ventilator again.” Keep in mind, the people who they are saying “don’t put me on the ventilator” are the people who are very likely never going to come off of a ventilator alive.
I want to turn now to talk a little bit more about disparities. You did talk about some of the disparities and outcomes and there’s been a lot of reporting in recent days about higher death rates for African Americans diagnosed with COVID-19. Dr. Fauci acknowledged these disparities in the daily White House briefing earlier this week, and also there’s been reporting that the death rate has been higher for Latinos in New York. What do we know about the reasons behind this? Is this just a function of the disparities we already see in cancer care that are now coming to light in a much more public way with this? What can be done in the short term? I know some of these are factors systemic to the healthcare system, but are there any things in the short-term that could be done to make a difference to stop this crisis in African American communities?
I think Dr. Fauci was incredibly appropriate in talking about those disparities. I think the only thing we can do right now is try to make sure that every human being, no matter what their race or ethnicity or credit score is, has adequate care—for all things. One of the problems I have is the president said we’re going to pay for everybody’s COVID care. Well, what about their diabetes and congestive heart failure underneath that that’s actually going to increase their risk of 1) getting COVID and 2) not doing well with COVID as well? I’m really into giving adequate care to everybody. By the way, the incidence rate in poor people is probably lower than the incidence rate in middle class people, because poor people don’t have a doctor who can—I ran into this just yesterday, somebody called me and asked [if I] would I write them an order for them to get tested for COVID-19. You have to have a doctor’s permission to get tests—poor people don’t have relationships with doctors. They may have a relationship with a clinic that’s giving them their diabetes medicine but that’s not same as having a relationship with a doctor. Right now I think the most important thing to do is to try to give everybody the care that they need.
I’m going to look into my crystal ball and predict that—we’re talking about disparities in Blacks and Hispanics and in the big cities right now—two months from now, I think we’re still gonna have this problem out there, but we’re going to be talking about the disparities in poor whites in the southern United States. Because we’ve had a couple of states, Georgia being one of them, where the governors made some absolutely stupid decisions in delaying closing things down and we’re going to see spread into the white, poor rural population in Georgia, in Arkansas, and in a couple of other states.
I’d like to turn to clinical trials. We know that clinical trials have halted enrollment, some clinical trials have. Some research labs have been closed, some cancer researchers are being pulled into COVID-19 research. Tell us a little bit about the current state of cancer research and then what is it going to take to recover after COVID-19 is no longer an emergency?
Almost all the cooperative groups have shut down accrual to most of their trials. People who are going on the trials for very aggressive cancers like the aggressive lymphomas and leukemias are still being enrolled, but the adjutant therapy trials and so forth have been shut down. At the major universities, the laboratories have all been shut down. At Hopkins we’re allowed to go keep our cell cultures alive, keep our lab animals alive, but we’re not doing any cancer experiments at least for the time being. So we’re all on ice, that’s gonna set us back for at least three to four months after the reopening. If we’re shut down for three months, this is a six-month shutdown, this is going to set us back six months.
This is a huge problem for all of cancer, there’s just no way of getting around it. I have no better answers. We do need to be in a position where we can start it up as quickly as possible afterwards. I have yet to see nurses and clinical trial specialists being laid off or anything by any of the major hospitals. But I’m worried about the hit that the major hospitals are going to take over time, and that could even causing more harm to what’s going on. This is—this is bad. It’s just bad.
Is there anything that we as patient advocates can be doing to advocate for that when the time comes that we can reopen? Sometimes we feel a little bit helpless here–we know it’s bad but what can we do to help?
Try to make sure that your congressmen and Senators have in their mind that they need to support the hospitals, they need to support the research infrastructures—it’s not just cancer, it’s HIV, it’s cardiac, it’s a number of other diseases as well. You make sure that the congressmen and Senators have that in mind. I’ve heard a lot more about bailing out the restaurants than I’ve heard about bailing out medical infrastructure—I support both by the way, I support bailing out both.
I have one last question for you, and this is the one I keep coming back to in our staff meetings, and in my own life with my kids: Do you see any silver linings here? And when we come through this emergency, any silver linings that will help the cancer care, cancer research, the cancer experience for cancer patients?
The medical community has come together and been united in a way that I haven’t seen. We didn’t have this one—I was a young doc when we had HIV come forth in the 1980s. We were not united the way we are today for HIV. I think a whole bunch of doctors went back and read what they put in their essays that they wrote when they were applying to medical school, and a whole bunch of us actually realized why we really should have gone into medicine. I think we’ve got a much greater respect for nurses and the laboratory personnel, even the folks who clean the floors in the hospital. I was very moved the other day, I heard that the chair of ENT at the Cleveland Clinic found that he couldn’t be helpful in patient care, and so he went and got a mop and bucket and was mopping the floor with the folks from housekeeping. I think the human aspect has come out of a lot of us, so that’s perhaps the one big positive.
NCCS thanks Dr. Brawley for sharing his time and expertise with us and providing us with clear and concise information. Watch the full interview at the top of this post.
Otis Brawley is a globally-recognized expert in cancer prevention and control. He has worked to reduce overscreening of medical conditions, which has revolutionized patient treatment by increasing quality of life and reducing health disparities.
Brawley’s research focuses on developing cancer screening strategies and ensuring their effectiveness. He has championed efforts to decrease smoking and implement other lifestyle risk reduction programs, as well as to provide critical support to cancer patients and concentrate cancer control efforts in areas where they could be most effective. Brawley currently leads a broad interdisciplinary research effort on cancer health disparities at the Bloomberg School of Public Health and the Johns Hopkins Kimmel Cancer Center, striving to close racial, economic, and social disparities in the prevention, detection, and treatment of cancer in the United States and worldwide. He also directs community outreach programs for underserved populations throughout Maryland.
Brawley joined Johns Hopkins University as a Bloomberg Distinguished Professor in 2019 from the American Cancer Society and Emory University.
https://canceradvocacy.org/wp-content/uploads/2020/04/Brawley-webinar-COVID-19-blog-img2.jpg6001200actualizehttps://canceradvocacy.org/wp-content/uploads/2020/06/NCCA-Logo.pngactualize2020-04-15 12:33:072020-07-06 10:20:36COVID-19 and Cancer: A Conversation with Cancer Control Expert Otis Brawley, MD
NCCS has heard from many survivors who feel uniquely vulnerable due to their history of cancer treatments. And we have heard from people currently in treatment, who are worried about delays in care and navigating a stressed health care system.
We’re partnering and consulting with several cancer organizations and experts to address the questions and concerns survivors have shared. Please bookmark this page, as it will be updated frequently.
Frequently Asked Clinical Questions
Richard Schilsky, MD, FACP, FSCT, FASCO, and NCCS CEO Shelley Fuld Nasso
NCCS and the American Society of Clinical Oncology (ASCO) are working together to provide information about how coronavirus 2019 (COVID-19) could potentially affect the health and cancer care of people diagnosed with cancer.
Click the link below to find answers to cancer survivors’ frequently asked clinical questions about COVID-19 from ASCO Chief Medical Officer and Executive Vice President Dr. Richard Schilsky.
We will continue sharing survivors’ clinical questions with ASCO, so if you have questions that are NOT answered here, please let us know.
NCCS Podcast Hosts Health Care Experts Who Address Coronavirus’ Impact on Cancer Survivors
Listen to NCCS’ podcast, Cancer Convos, for more insights on COVID-19 and its impact on cancer patients and survivors. Subscribe to Cancer Convos on Apple Podcasts or your favorite podcast app.
How Survivors Can Cope With the Anxiety of COVID-19
Many survivors are experiencing stress, anxiety, and PTSD from the new expectations and restrictions resulting from the COVID-19 pandemic. These uncertain times can lead to feelings of helplessness and a lack of control over one’s life. This may trigger thoughts of stressful events of the past with worries about one’s health or that of loved ones.
Although experiencing some levels of anxiety and fear can be expected, we do have some control over our lives, despite the global restrictions from the pandemic.
While learning to live indoors:
Develop a routine or schedule for your time, which includes the time you will wake up, time for movement/exercise, regular check-ins with friends, and regular family activities. Having a schedule can help center your emotions and give you a sense of control over your life.
Take a breath. Deep breathing helps reduce stress in the body, reduces muscle tension, and calms the mind. It also increases the flow of oxygen to the brain, which helps with clarity, memory, and wellbeing. You can use DVDs or apps for exercising, find free breathing or meditation apps (Insight Timer or Calm) for techniques, or walk around your home or yard and climb stairs for movement.
Stay in touch with the people you love with virtual communication and telephone calls. Use your time to start a daily conference or virtual call through a free conference or virtual call company with friends for a book club; Bible Study; prayer; or start a recipe exchange club where members alternate bringing new recipes to the group, cook it at the same time, and share the outcomes.
Start a new hobby or learn a new skill. Embrace your creativity to help with mental acuity, expression, and entertainment. Let your creative self shine with these few suggestions and anything else your thoughts will lead you to do.
Food Assistance Program for Cancer Patients
Team Rubicon, in collaboration with Patient Advocate Foundation (PAF) and funded by the Bristol Myers Squibb Foundation, will provide assistance to immunocompromised patients living with cancer, whose ability to access or afford food and other nutritional needs are at risk due to the COVID-19 pandemic.
Eligible patients, their caregivers or care team members can request complimentary delivery of food and other critical supplies directly to their place of residence.
Patients with an identified financial need will be able to apply for a one-time grant of $500 to help pay for food and nutritional needs including groceries, food delivery or pick up and medically-tailored meals.
The Cancer Support Community (CSC) Cancer Support Helpline is staffed by counselors and resource specialists who have extensive years of experience helping people affected by cancer. Counselors and resource specialists can be reached by phone at 1-888-793-9355 or live chatfrom Monday through Friday, 9:00 a.m. – 9:00 p.m. ET, and Saturday and Sunday from 9:00 a.m. – 5:00 p.m. ET.
Resources About Loss of Health Coverage
This blog on COVID-19 by Karen Pollitz at Kaiser Family Foundation outlines what you can do about losing health coverage during this crisis.
For information about transitioning from job based coverage to other forms of coverage (including Medicaid and COBRA), see these resources:
We will soon be addressing how NCCS is advocating for telework, provisions in the Coronavirus Relief Bill that can help survivors, as well as how to get the exercise and nutrition survivors need while practicing social distancing.
Bookmark this page for more information!
Questions About Coronavirus?
NCCS is seeking answers from public health experts on the coronavirus and its impact on cancer patients and survivors. Please contact us at www.canceradvocacy.org/contact with any questions or concerns you have and what data would be helpful to you as we gather this information.
NCCS Coronavirus Coverage
Error: View 454df2721p may not exist
https://canceradvocacy.org/wp-content/uploads/2020/03/Coronavirus-feat.jpg6001200actualizehttps://canceradvocacy.org/wp-content/uploads/2020/06/NCCA-Logo.pngactualize2020-03-20 12:24:482020-07-06 09:54:22Coronavirus and Cancer Resources for Survivors
We aim to make the Health Care Roundup a concise, one-stop summary of what you need to know as we continue working together to make cancer care better for everyone.Your feedback is always welcome to make our content more useful to you. Please send comments to feedback@canceradvocacy.org.
Supreme Court Will Not Consider ACA Lawsuit Until After 2020 Election
The Supreme Court announced on January 21 that it would not consider the ACA lawsuit on an expedited basis before the 2020 election. NCCS is disappointed in this decision but remains hopeful the Supreme Court will hear the case later this year. NCCS recently joined with other patient groups in an amicus brief to the Court asking them to fast-track consideration of whether the individual mandate’s removal rendered the law unconstitutional. Read more about the decision »
Administration Prepares to Allow Medicaid Block Grants
The Trump administration is reportedly planning to allow states to convert Medicaid funding to block grants. Medicaid is currently funded by the federal government matching what a state spends on health care for low income Americans. A block grant would cap the amount of money provided to a state and provide the state flexibility in how to spend it. The cap may force states to cut costs and could jeopardize health care benefits. States that seek waivers likely would not have to adhere to health benefit standards, potentially leaving individuals without comprehensive health care.
The Center on Budget and Policy Priorities says that block-granting Medicaid would “strip away the federal commitment to help vulnerable individuals and families who are eligible for these programs when they need them.” Fixed funding, such as a block grant, would not provide access to increased needs, including economic downturns, natural disasters, and higher costs. The financial inability to provide for spikes like these could leave Medicaid beneficiaries more vulnerable.
Support NCCS while shopping on Amazon. A portion of your Amazon purchases will be donated to NCCS when you choose NCCS as your AmazonSmile charity. Get started »
"Cancer’s Emotional Isolation," by patient advocate Barbara Tako, highlights the isolation cancer survivors can feel, even from their own family members who do not understand the experience of living with cancer. Tako admits the struggle in turning each day’s emotions into a positive — another challenge only others on similar paths would understand. And yet, she reminds us to be gentle with ourselves when moments of isolation happen.
A first-hand account by a patient reveals the dangers of the nursing shortage, which places undue strain on overburdened nurses:
My friend Dana arrived at Bloomington Hospital’s emergency department with a problem that many people confront after below-the-belt surgery or radiation: a bowel blockage. Dana ended up spending the entire night in the emergency department. When she asked why, she was told that administrators at the short-staffed hospital had closed an entire floor.
The shortage is expected to increase:
Especially in the context of an aging population, the retirements of a generation of baby boomers — one million of the 3.8 million registered nurses in the United States will leave the work force between now and 2030 — have created and will continue to create staffing crunches.
National Institutes of Health (NIH) Director's Blog
Dr. Francis Collins, Director of the National Institutes of Health, writes that nearly half of racial disparities in late-stage breast cancer diagnoses are due to differences in health insurance coverage.
Four health news reporters discuss the Supreme Court’s decision to decline hearing the ACA lawsuit right now. Tune in to hear what that may mean for the future of the law. Listen Here »
https://canceradvocacy.org/wp-content/uploads/2017/01/NCCS-Starburst-250px.png250250actualizehttps://canceradvocacy.org/wp-content/uploads/2020/06/NCCA-Logo.pngactualize2020-01-24 16:44:552020-07-06 09:54:22Health Care Roundup: SCOTUS Prolongs ACA Lawsuit Review; Coping with Isolation; Medicaid Block Grants; The Nursing Shortage; More
We aim to make the Health Care Roundup a concise, one-stop summary of what you need to know as we continue working together to make cancer care better for everyone.Your feedback is always welcome to make our content more useful to you. Please send comments to feedback@canceradvocacy.org.
House Members Solicit Public Input on "Cures 2.0" Bill
Representatives Fred Upton (R-MI) and Diana DeGette (D-CO) released a request for public input on a potential new bill they are calling “Cures 2.0” which would build on the 21st Century Cures Act. The duo says this legislation would focus on improving patients' access to digital health products and new medical therapies. The bill would speed up insurance coverage by Medicare, Medicaid, and private payers for new FDA-approved drugs and devices, and would increase the use of real-world evidence in FDA’s regulatory approval process. The proposed legislation also aims to improve family caregivers’ health literacy. They requested input on the bill by December 16, 2019.
Oncologist Stephen Hahn Confirmed as FDA Chief
Yesterday, the Senate voted 72-18 to confirm Stephen Hahn, MD, as the new Commissioner of the U.S. Food and Drug Administration (FDA). E-cigarettes were a focus of his confirmation hearings last month. Hahn’s background is in radiation oncology, with specializations in treating lung cancer and sarcoma. He most recently served as MD Anderson Cancer Center’s chief medical officer.
Congress Reaches Deal on "Surprise Billing" Bill
On Sunday evening, leaders of several key health care committees announced they had come to an agreement on “Surprise Billing” legislation. As Vox reports, the legislation may be included in the end-of-year government spending bill that must pass before December 20. Now that the committees have hashed out a deal, it falls on House and Senate leaders to figure out the path forward. However, just yesterday, the House Ways and Means Committee on Wednesday put out its own, “rival” proposal to protect patients from surprise medical bills. This proposal could throw a wrench into a speedy passage of the deal struck last weekend. The measure from Ways and Means would take a different approach in that it would first let insurers and doctors try to work out payment on their own, and if they cannot come to agreement, an arbitration process would begin. Full text was not yet available. As The Hill reports, the Energy and Commerce proposal, in contrast, relies in large part on essentially setting a payment rate based on the average price for that service in the geographic area.
House Passes Drug Pricing Bill, H.R. 3
Yesterday, the House of Representatives passed H.R. 3, the Democrats’ drug pricing legislation. The bill was passed largely along party lines. The legislation would allow the government to directly negotiate drug prices for Medicare recipients as well as others purchasing drugs. However, the debate is far from over, with the Senate still considering a separate drug pricing package and President Trump vowing to veto H.R. 3 if it makes it to his desk.
The 5th Circuit Court of Appeals is expected to rule on the ACA lawsuit any day now. If the court confirms the decision to invalidate the ACA, the entire law — including pre-existing conditions protections — would be struck down. Kaiser Family Foundation recently released an analysis showing that rolling back the ACA would affect nearly everyone. Check out their chart to see how it could impact you.
Support NCCS while shopping on Amazon. A portion of your Amazon purchases will be donated to NCCS when you choose NCCS as your AmazonSmile charity. Get started »
A large study found that MRIs detected tumors missed by mammograms, cutting interval cancers by half or more. Just under half of women over the age of 40 have dense breasts, which means they have more connective and fibrous tissue.
Cancer survivor Dana Stewart shares how she rebuilt her life after a breast cancer diagnosis nine years ago.
“The decent news is that you can pick yourself up off the ground and change the view. It’s tough and scary and frustrating and so on and so on. It is, however, possible. I took the approach of letting my cancer diagnosis change my viewpoint. Granted, this happened after lots of crying, screaming and angry tears.”
Roughly one-third of patients diagnosed with lung cancer have moderate to severe symptoms of depression, a new study suggests. The lead author of the study says, “Some oncologists may have a mindset that ‘of course, you’re depressed, you have lung cancer.’ This may show an under-appreciation of the breadth of depressive symptoms and other difficulties which accompany it.”
There have been quite a few surprises with the "surprise billing" legislation. First, it seemed like it couldn’t be done with hospitals and doctors lobbying hard against the legislation. Then, lawmakers struck a bipartisan deal over the weekend, and now a new “rival” proposal to adds to the surprises.
https://canceradvocacy.org/wp-content/uploads/2017/01/NCCS-Starburst-250px.png250250actualizehttps://canceradvocacy.org/wp-content/uploads/2020/06/NCCA-Logo.pngactualize2019-12-13 11:30:122020-07-06 09:54:23Health Care Roundup: Drug Pricing, “Surprise Billing” Bills Advance; “Rebuilding” After Diagnosis; Study on Depression in Lung Cancer Patients; More
We aim to make the Health Care Roundup a concise, one-stop summary of what you need to know as we continue working together to make cancer care better for everyone.Your feedback is always welcome to make our content more useful to you. Please send comments to feedback@canceradvocacy.org.
This week, President Trump hinted at his intention to introduce a new health care plan. Health care remains a very popular political issue among most voters. With widespread reports saying that many Republicans in Congress would rather not make health care or Affordable Care Act (ACA) replacement a top issue in the upcoming elections, it will be interesting to see whether the president follows through in the months ahead.
Direct-to-Consumer (DTC) TV Advertising Rule
In December, we shared information about a new rule from the Department of Health and Human Services requiring drug companies to post drug prices in television commercials. Experts have said that it’s unclear whether price transparency will have an effect on prices. Last week, several companies, including Amgen Inc., Merck & Co. Inc. and Eli Lilly and Co., and the Association of National Advertisers, file suit to block the rule. Amgen highlighted concerns regarding freedom of speech, and that the rule “may mislead patients and fails to take into consideration ‘differences among insurance, treatments, and patients themselves.’” (Stat News)
Medicaid Work Requirements
Two studies shed light on the new Medicaid work requirements. Researchers from the Harvard Chan School of Public Health reported on the initial results of Arkansas’ work requirements, the first implemented in the country. They found a significant loss in coverage, an increase in the uninsured rate, with no corresponding increase in employment rates.
“The idea of work requirements is to get people into new jobs and private insurance. But in our study that didn’t happen. We didn’t find any employment changes and instead we see Medicaid coverage rates dropping and more people without health insurance–usually because the process itself was confusing or beneficiaries didn’t even know about the new requirements,” said Benjamin Sommers, lead author of the study.
Additionally, the Commonwealth Fund reported that between 600,000 and 800,000 people could lose Medicaid coverage in nine states if proposed work requirements are fully implemented.
“Even if some people who lose coverage are able to reenroll later, coverage gaps will grow, potentially affecting health. This churning also drives up costs through higher administrative expenses and the greater costs of deferred care. The loss of Medicaid coverage also will shrink funding for health care, creating losses for safety-net hospitals and community health centers,“ wrote Leighton Ku and Erin Brantley.
While former House Speaker Tip O’Neill is credited for saying “all politics is local,” a similar phrase could be made for health care. The quality and affordability of health care is increasingly being determined by where someone lives.
This analysis from the Commonwealth Fund used “recently available data to assess every state and Washington, DC on more than 40 measures of health care access, quality, efficiency, health outcomes and disparities,” and developed trends to see how your state improved or declined. See the interactive chart »
Support NCCS while shopping on Amazon. A portion of your Amazon purchases will be donated to NCCS when you choose NCCS as your AmazonSmile charity. Get started »
NCCS is a long-time proponent of coordinated care, since far too many patients and survivors today bear almost all responsibility to coordinate and advocate for the care they need. This article provides an excellent overview of the needs and challenges to make care coordination more universal.
A new report from the Centers for Disease Control and Prevention (CDC) sheds more light on the impact of cancer on working adults.
“More than a quarter of adults aged 18 to 64 years reported they had trouble paying bills because of cancer, and over one-third reported psychological distress, according to a report from the CDC.”
The report points out that since the number of Americans with a history of cancer are is expected to rise, these type of numbers will likely increase as well in the years to come.
This CBS Sunday Morning News story looks at the troubling number of firefighters being diagnosed with cancer. “Since 2002, almost two out of every three firefighters who died in the line of duty died of cancer, according to the International Association of Fire Fighters.”
One theory for the cause is the types of toxins firefighters encounter due to changes in modern building materials. The article also points out the struggles many firefighters face to have their cancer care covered by workers compensation benefits.
A local news story in Ohio highlights another one of NCCS’ long-time priorities—cancer survivorship care plans. This is a great introduction to care plans which, when implemented correctly, can be an important resource for patients and their families to help with the transition from treatment to survivorship.
That’s the latest estimate in a new report from the American Cancer Society. Co-author of the report, K. Robin Yabroff, PhD, senior scientific director of health services research at ACS, said:
"People with a history of cancer have unique medical, psychosocial and economic needs that require proactive assessment and management by health care providers."
Dr. Yabroff shared more of her research on the costs and access to care in her presentation at NCCS’ Spring 2019 Cancer Policy Roundtable.
https://canceradvocacy.org/wp-content/uploads/2017/01/NCCS-Starburst-250px.png250250actualizehttps://canceradvocacy.org/wp-content/uploads/2020/06/NCCA-Logo.pngactualize2019-06-21 16:49:192020-07-06 10:11:53Health Care Roundup: Medicaid Work Requirement Studies; Care Coordination/Planning; Financial & Emotional Distress; Cancer in Firefighters; More
Before writing this guest blog for NCCS, I read some other blog posts to get a feel for what would be interesting to this audience. The December 20, 2018, post entitled “Remembering Jennifer Friar Groves” really moved me. I’m naturally drawn to stories of perseverance, of people who give way more of themselves than they rightfully should, especially during times of severe adversity. We can learn so much from these individuals about how to be a better person and help others. Reading Shelley’s tribute inspired me to try harder and make a bigger difference.
So with that, I’d like to share with you a new way to pay it forward and directly help the newly diagnosed.
Think back to that moment when you were told you have cancer. The doctor informs you of your treatment options and discusses whether surgery, radiation, chemotherapy, a clinical trial, or some combination thereof is the best path forward. Time is of the essence and you need to make a decision soon. Aside from the people in the room with you (your doctor, nurse and spouse/partner/caregiver/friend), where can you turn for objective advice?
“I believe that there are many survivors like myself who provide informal advocacy on an ad-hoc basis all the time, and who would love to be part of a more organized effort to help fellow patients and their families. The only thing missing is the technology platform to aggregate those survivors and their cancer experience. Patient True Talk fills that void.”
When I was first diagnosed with melanoma in 1999, there were few, if any, options. Whether they were helpful was another story. Some recommended I find a support group specifically for melanoma. What chance was there that I could find a support group nearby with an imminent meeting where there was someone in attendance who could relate to my specific situation? I didn’t think it likely and never sought one out.
Today, there are various online communities that offer support. Like a live support group, but you still need to hope that there is someone with relevant experience monitoring and reviewing your online community in the time frame you need. You may then need to wade through a multitude of responses to your post and hope there is helpful advice. I do believe these resources are extremely valuable. If you’re like me, however, you may want to cut to the chase and find someone who experienced exactly what you are facing, and then reach out for a private conversation to share information and have questions answered.
My name is Dan Engel and I founded Patient True Talk to solve this pressing issue. I am a stage four metastatic melanoma survivor who collectively has endured ten operations, gamma knife surgery on a brain metastasis, radiation treatment, six clinical trials and seven years of a maintenance clinical trial. I’d like to think that my medical record, and the fact that I’ve read and signed well over ten informed consent forms (one for each trial and each amendment), gives me some credibility as an expert on the cancer patient experience, with a particular focus on clinical trials.
When I was diagnosed and faced my first clinical trial, I desperately wanted to speak to someone who went before me. Among other things, I wanted to know about side effects, life during treatment, state of mind, pain, etc. Basically, everything I read about in the informed consent form. I wanted to know what to really expect from a patient’s perspective, not that of a nurse or doctor. I understood that my experience by definition would be different, but relished that opportunity to speak with a fellow patient. During the countless time I’ve spent in infusion rooms, I made sure to speak with anyone else who might need a friendly ear.
Launched last year, Patient True Talk is the only patient-to-patient registry where patients and/or their caregivers can create profiles with as much information as they feel comfortable sharing, and find matching profiles based on algorithms created by some of the country’s top clinical oncologists. Patients/caregivers can also search along their diagnosis/treatment parameters, refining their search based on the results provided. They can then send secure messages directly to those who they believe represent the closest match. Once a connection is made, the two parties can speak off-line and hopefully form a friendship. My profile is the first “patient advocate” included on the site.
I believe that there are many survivors like myself who provide informal advocacy on an ad-hoc basis all the time, and who would love to be part of a more organized effort to help fellow patients and their families. The only thing missing is the technology platform to aggregate those survivors and their cancer experience. Patient True Talk fills that void. To be effective, however, the site needs thousands of survivors who battled every type of cancer to register as “patient advocates” to be available for the newly diagnosed and/or their caregivers.
I’m so pleased that NCCS agreed to collaborate with Patient True Talk to expand its advocacy reach to impact individual patients. My call to action is this: if you are or know a survivor, please register or encourage others to register on PatientTrueTalk.com.
P.S. During my two years fighting Stage 4 melanoma, I formed and launched the Miracle League of San Diego, a non-profit organization that provides children with special needs the opportunity to play baseball in an organized league. If you’d like to learn more about my trials and tribulations (pun intended), check out my book at www.thrivingthrucancer.com.
# # #
About the Author
Dan Engel was diagnosed with stage 4 melanoma in November 1998. He founded Patient True Talk in 2016 to solve one of the pressing issues patients and their caregivers face in the cancer world — a means to connect to other patients, especially when considering and deliberating over treatment options.
Note: The views & opinions expressed in any guest post featured on our site are those of the guest author and do not necessarily reflect the opinions & views of the National Coalition for Cancer Survivorship. Read our blog and comment policies here.
https://canceradvocacy.org/wp-content/uploads/2018/10/NCCS-Blog-CPM-Logo.jpg6001200actualizehttps://canceradvocacy.org/wp-content/uploads/2020/06/NCCA-Logo.pngactualize2019-02-21 15:04:352019-02-21 15:04:35Introducing PatientTrueTalk.com – A Way for Advocates to Directly Help the Newly Diagnosed
In order to bring you the latest cancer-related health care policy and news, we at NCCS combined our ACA Updates and What Caught Our Eye (WCOE) content into a weekly email and blog post. We aim to make this a concise, one-stop summary of what you need to know as we continue working together to make cancer care better for everyone.
Your feedback is always welcome to make our content more useful to you. Please send comments to feedback@canceradvocacy.org.
A lawsuit filed by 20 attorneys general from conservative leaning states saw its day in court this week. Earlier this summer, these attorneys general brought forth a lawsuit claiming that the Affordable Care Act (ACA) is unconstitutional because the individual mandate was repealed by Congress last year. With the Trump administration taking the very unusual step of declining to protect a federal law passed by Congress, several democratic attorneys general stepped in to argue that repealing the individual mandate does not invalidate the entire law.
Oral arguments were heard Wednesday by Judge Reed O’Connor, who sounded openly opposed to the ACA. The Judge’s questioning gave the impression that he is skeptical of the ACA’s standing without the individual mandate. He gave no indication of when he will make a decision, but either way, there will almost certainly be an appeal and the case could go all the way to the Supreme Court.
Meanwhile, confirmation hearings for Supreme Court nominee, Judge Brett Kavanaugh, are underway. Judge Kavanaugh has not provided any insights into his views on the ACA during the hearings, but if he is confirmed he could be a deciding factor on the future of the ACA.
The House Energy and Commerce’s Health Subcommittee today advanced a series of health care bills. The Washington Examiner notes:
One of the pieces of legislation is a draft bill that bans private insurers and drug middlemen called pharmacy benefit managers from inserting "gag clauses" into contracts with pharmacists. The clause prohibits the pharmacist from telling a consumer it is cheaper to pay for a drug out of pocket rather than through insurance.
It looks as though bipartisan support for such legislation is growing in Congress and could continue to move ahead. The Senate this week unanimously passed a similar 'gag clause' bill targeting Medicare Part D insurers. That bill now awaits action in the House.
This is the inspiring story of Shekinah Elmore. Two weeks after finishing treatment for her third stint with cancer, she began medical school. Based on her experiences as both a patient and a doctor, she’s trying to help change the doctor-patient relationship:
Elmore wanted her peers to recognize that not every person who looks well is well. Her classmates began to draw imaginary lines between themselves, the “healthy,” and their future patients, the “sick.” Elmore herself was proof that those categories aren’t so clear cut. Later, she’d realize how much their use hurts patients.
A study called “Closer: A Videoconference Intervention for Distance Caregivers,” research funded by the National Institute of Nursing Research, aims to discern the extent to which using technologies can help distance caregivers connect with their loved ones in meaningful ways. This includes virtually attending visits to be a part of the treatment decision making process.
“Distance caregivers, compared to local caregivers, have higher stress, feel less support, have higher anxiety and more burden,” Dr. Douglas said. “It’s a group that hasn’t been well recognized. We haven’t really done a really good job up until this point in terms of trying to provide services that in some way make being a distance caregiver less stressful and more meaningful.”
By Nainika Nanda, MD Otolaryngology Resident
University of Wisconsin-Madison
Survivorship. What does this mean? Oncology highlights patients currently battling cancer. However, survivorship encompasses a longer timeline. Cancer requires lifelong care, which is best achieved through proper doctor-patient communication. This relationship is a keystone of medicine. Unfortunately, that focus can be lost in the sea of information medical students must master.
A common analogy for medical education is “drinking from a fire hose.” In having to learn this quantity of information at this pace, curricula are classically centered on textbook knowledge in the earlier years. My first year of medical school required ten hours of physician shadowing. During my second year, the hours of patient contact increased, as we conducted patient interviews every 1 to 2 weeks. They were often during peak exam time and focused on complex patients with medical issues beyond our previous scope of exposure. So, our effort was inevitably directed towards learning the science of medicine—diagnosis and treatment—rather than the art of medicine, puzzle-solving, and empathetic interactions.
Understanding the science and getting the treatment right is crucial, but that’s only part of the equation. We as physicians must also remember the humanity of every patient and loved one. We need to be better equipped to serve as supportive, empathetic, and honest advisors to patients.
In fact, topics vital to oncology—such as end-of-life and palliative care discussions—are frequently cited as subjects that entering residents do not feel adequately prepared to handle. My school focused on these topics with a couple of lectures in a single one-semester course during our four years. With the demands of the training and loss of focus on individual patients, students often lost sense of why they chose to pursue medicine.
I had the honor of participating in the CUPID (Cancer in the Under-Privileged, Indigent, and Disadvantaged) program in the summer after my first year of medical school. This fellowship through Sidney Kimmel Comprehensive Cancer Center and Johns Hopkins Medicine created opportunities to work on research in diagnostic tools for pancreatic cancer, shadow clinicians in the operating rooms and clinics, and be introduced to NCCS.
Having had minimal direct patient interaction in my education hitherto, these experiences were invaluable. I saw firsthand how important the clinician is to the cancer patient and their family. In the following years of medical school, I was able to seek out further exposure to clinicians handling such complex situations, because I had learned of the value of these experiences to my education.
Yet, one of the most influential experiences was at a metastatic breast cancer retreat hosted by Johns Hopkins Hospital for patients and spouses, which I attended during my fourth year of medical school. This weekend-long event created an atmosphere outside of the clinical setting for patients to hear each other’s stories without physician interaction inadvertently directing focus to therapy options. Patients welcomed me, sharing deep, personal stories of how their illnesses were impacting their lives and relationships with their families. They were eager to provide feedback to a budding physician based on interactions they had with physicians during their care, some heart-warming and some devastating.
Clinicians are devoted to their patients’ well-being. Yet so often, the challenges of providing high-quality care often rely on using the limited time available per patient appointment, often 15 to 20 minutes, to discuss complex topics. These concepts—complex therapeutic regimens, the concept of a lifetime illness, and advanced directives and end-of-life care—are not addressed in the early part of our training and take years to learn.
Medical training should incorporate these topics early and routinely, possibly through standardized patient encounters, case scenarios, and shadowing more experienced physicians dealing with these situations. In an educational system with so much to learn in so little time, adding more formal instruction will not be easy, but it is critical.
Understanding the science and getting the treatment right is crucial, but that’s only part of the equation. We as physicians must also remember the humanity of every patient and loved one. We need to be better equipped to serve as supportive, empathetic, and honest advisors to patients. Even when the discussions are challenging, decisions must be made by optimizing the doctor-patient relationship.
# # #
About Nainika Nanda
Dr. Nanda recently graduated from West Virginia University School of Medicine. Experiences throughout her medical school training inspired her to pursue a specialty with vast opportunities in research and patient care related to both benign and malignant tumor biology. Currently, she is a resident physician at University of Wisconsin-Madison in the specialty of Otolaryngology-Head and Neck Surgery, commonly known as ENT.
Note: The views and opinions expressed in any guest post featured on our site are those of the guest author(s) and do not necessarily reflect the opinions and views of the National Coalition for Cancer Survivorship. Read our blog and comment policies here.
https://canceradvocacy.org/wp-content/uploads/2018/07/NCCS-Blog-Guest-Post.jpg6001200actualizehttps://canceradvocacy.org/wp-content/uploads/2020/06/NCCA-Logo.pngactualize2018-07-16 16:25:302018-07-16 16:25:30A Medical School Perspective: Beyond the Science, We Must Learn to Communicate with Patients
“Perhaps one of the most impactful collaborations in Dr. Brereton’s extraordinary career remains his early work and long friendship with Ellen Stovall. Through him, and in turn through the thousands of lives he has touched, Ellen’s work continues, and her mission lives on.”
—Karen M. Saunders
President, Northeast Regional Cancer Institute
NCCS CEO Shelley Fuld Nasso moderated the discussion. “We knew exactly who we wanted to be our first guest speaker in this series. Dr. Otis Brawley is a Bloomberg Distinguished Professor at Johns Hopkins University, an oncologist and an epidemiologist. He’s also a truth teller, a myth buster, a straight shooter, and an all-around nice guy. When we called him last week to ask for advice on how we can best serve cancer patients during the scary and unpredictable season, his response was simple. ‘Just be honest with them,’ he said.”
NCCS Podcast Hosts Health Care Experts Who Address Coronavirus’ Impact on Cancer Survivors
By Nainika Nanda, MD