In the words of Gandalf the Grey, we are indeed living in times that have shaken us collectively to the core. While social distancing has certainly impacted all of us worldwide, the effects on cancer patients are particularly unsettling. Life in the era of coronavirus adds another layer of uncertainty and fear to an already stressful existence, logistically, physically, and emotionally. While I certainly don’t have the answers to what life will look like over the next few weeks and months, or what the long-term impact of this pandemic will be, I thought that I would relay some of the common conversations that I’ve been having with my own patients over the past couple of weeks.
Topic One: Hospitals and clinics are shutting down and I’m worried that I won’t be able to get the cancer treatment that I need.
Many of you have gotten these calls, stating that “all non-essential visits and procedures are being postponed due to coronavirus.” This is a frightening statement for a cancer patient – to be told that the care plan carefully developed and recommended for you by your doctor just a few weeks or months ago is now “not essential” is a kick in the gut. The same worries that you live with day to day are now being shelved – fears of cancer growth, recurrence or spread. Or maybe your doctor has had to change your treatment plan based on coronavirus impacts – you can’t participate in a clinical trial because we don’t have research staff to safely support the study, or a more aggressive, riskier chemotherapy regimen is avoided for something less toxic but maybe less effective.
Why are we having to do this? There are a few reasons which have been discussed with variable clarity by the media. First and foremost, if you have been to a medical center you know it’s like Grand Central Station. And many people who come to the hospital or clinic are not doing well or they wouldn’t be there in the first place. Just like it is not safe to gather hundreds of people together for a concert or a sporting event, we are trying to prevent the spread of coronavirus from people coming from all over the state and surrounding states and congregating into one central location. Delaying visits, scans, and procedures that can wait a few weeks will dramatically cut down on the number of patients in the hospital or clinic at a time, and lessen the spread of coronavirus.
There are also very real fears about increasing numbers of patients with coronavirus that could need care in our hospital. Watching the stories coming out of Italy is frightening. We only have so many beds, so much protective equipment, so many ventilators and ICU equipment, and so many doctors. While I agree this is a surreal concept, the idea of minimizing patients in the hospital to help conserve these resources is the only thing we can do right now to prepare for these worst case scenarios.
Additionally, to avoid the inadvertent spread of coronavirus, we also had to make sure all non-essential staff in our hospital and clinics are working from home. We closed our research laboratories, medical students are not rotating in our hospitals and clinics, and our clinical research coordinators and data managers are working from home. Many of our nurses or clinical support staff also have families, and with schools being closed cannot come in to work. Any of our doctors, nurse practitioners or physician assistants, or nurses who develop respiratory symptoms are not allowed to come in to work, because we don’t have sufficient tests yet to know for sure who may have coronavirus, and who just has a cold or allergies. So, our bandwidth for visits and procedures is also limited.
That is not to say that for patients who must be seen, who need treatment, or need procedures cannot get them. Here’s where it comes down to truly personalizing your care. You and your doctor know your case the best. When we consent you for chemotherapy, surgery, radiation, or radiology procedures we always talk about the risk – benefit ratio. Coronavirus now is a factor in that discussion. If you have a complication from your cancer treatment and wind up in the hospital unexpectedly, that impacts not only your own safety, but our ability to care for other patients. My sarcoma patients often need these treatments – and the risk of having life-threatening complications from cancer outweighs the risk of coronavirus. My newly diagnosed patients with rapidly growing disease are getting the chemotherapy they need in my hospital. But for example, I have several patients with gastrointestinal stromal tumor (GIST) who are doing well on imatinib, but are ready to have surgery to remove the tumor. I’m recommending that they wait until a safer and more predictable time to do so.
As you know, most of my patients who have completed treatments are on a schedule of routine scans to monitor for recurrence, like CT and MRI. These timelines are guidelines, but are not set in stone. As long as you are not having symptoms concerning for a problem, these scans can safely be postponed until a safer time. The goal is to keep you safe and out of the hospital/clinic, and open up those appointments for the patients that absolutely need to have those imaging studies.
Finally, just because we are not seeing you face to face doesn’t mean that we are not available to care for you. Our clinic and many other oncology clinics across the nation are moving forward with remote visits by telephone, medical-grade FaceTime, electronic messaging systems. Call your doctors and talk about your worries or concerns.
Topic Two: As a cancer patient, am I in the “high risk” group for catching or becoming critically ill from coronavirus? What can I do to protect myself?
This gets tricky. The reason is that we really barely understand this virus, and what we are seeing in the case reports and media is biased because we’re not testing and catching all of the patients out there with mild disease. There’s a paper recently published from China that suggested that cancer patients had worse outcomes from coronavirus, but overall the numbers are small in this study. We don’t have much data at least that I’ve seen about infections occurring in patients on active chemotherapy or targeted therapies.
In general, we ALL should be behaving like we are high risk for contracting the virus. That means social distancing, avoiding crowds, washing hands thoroughly and often, avoiding contact with sick people, working from home remotely if possible, etc. Check out the CDC guidelines for the most reliable information.
If you are on chemotherapy right now that drops your immune cells (white blood cells), or a leukemia/lymphoma patient, or a bone marrow transplant patient, you are definitely high risk, just like you are for any run-of-the-mill bacterial or fungal infection, colds, flu, etc. You’ve already been well-trained for how to avoid infection during chemotherapy, and many of those skills hold true for coronavirus as well. Infections that normally wouldn’t be a big deal like a urine infection or a wound on your hand can be a huge risk for patients on chemotherapy because your immune system does not respond normally.
If you are on targeted chemotherapy pills or immune therapies, we don’t understand the impacts of these treatments yet on your risk of contracting or developing complications from coronavirus. The “quantity” of people’s white blood cells normally don’t change much on these types of therapies compared to traditional chemotherapy, but the effect on the “quality” of the immune response is not well understood. Particularly with immune therapies, the normal shut-off mechanisms for the immune system to STOP activating are blocked so that the immune system will hopefully attack the cancer cells – and so I worry about what that means if someone gets a viral infection. Much of the damage from coronavirus seems to be the robust inflammation that happens when the immune cells attack the virus – could this be even worse with those “safeguards” blocked? I have been counseling people that we should assume they may be at higher risk, and should take all the precautions very seriously to try to avoid infection.
In light of this, should we be delaying or skipping chemotherapy for cancer out of concern that your immune system will be unable to fight the coronavirus? Again it comes down to a risk – benefit ratio. For example, I have patients who have had surgery to remove their sarcoma, and we are talking about using chemotherapy after surgery to prevent the cancer from coming back. For a patient with a leiomyosarcoma, the added benefit from chemotherapy may drop the risk of recurrence from 30% to about 15-20%. For a patient with Ewing’s sarcoma, chemotherapy may drop the risk of recurrence from 70% to 30%. Those are two very different situations! So in a nutshell – your doctor needs to review with you your own case and the risks and benefits – and you decide together what is the bigger risk.
If you have a history of cancer (other than a transplant patient) but are not on active treatment, your risk probably mirrors that of the rest of the population – older age and other medical conditions like heart or lung disease, diabetes, obesity are probably driving the worse outcomes more than your cancer diagnosis. So doing everything you can to stay healthy in those respects is your best protection.
Topic Three: Emotional and spiritual impacts of social distancing for cancer patients.
While the medical factors clearly are significant, as we’ve discussed in the first couple topics, the stress of coronavirus on emotional and spiritual well-being is one of the most challenging factors to overcome. Over the last few weeks, I’ve watched most of the core components of how I practice medicine get flushed down the drain. I had to counsel a patient with a new cancer diagnosis that there were no safe treatment options and he should pursue hospice, wearing a facemask and a gown. Physical examinations are only recommended for the most critical findings. Sitting down and holding someone’s hand is not recommended by coronavirus guidelines. Forget hugging my patients in clinic… this one’s particularly hard for me. We’ve had to restrict visitors in the hospital – even patients at end of life, they only can have two people within a 24 hour period, and that’s if they DON’T have coronavirus. Over the past couple of weeks I’ve realized how much of what I do involves the human connection, face to face, and being physically present. It’s not dictating the cancer treatment. And it feels awful to not be able to provide that to my patients.
Cancer patients who are self-isolating at home are being recommended not to see family members, particularly young kids who are thought to be carriers of the virus. Social engagements like church, weddings, funerals, are being discouraged. Spouses may be out of work, leading to crushing financial stress or even loss of medical insurance for cancer patients.
For these things I don’t have solutions or much in the way of advice. We’re all struggling with the sudden loss of our social interactions with each other. But I think the best thing we can do is to try to be there for each other, whether it’s by phone, or email, or FaceTime, and to listen. Embrace the things that help take your mind off of these crazy times – read a book, organize those photos that have been sitting for eons, download some new music, exercise or practice yoga or stretching if you can. Write in a journal about your thoughts or experiences. Turn off the phone and TV for at least some portion of every day (I’m particularly bad at this). The media, despite intentions, can easily distort facts, some sources more than others, and it’s easy to get swept up in the chaos and anxiety.
This will not last forever – and we will get through it. In a few more words from Gandalf, “Despair is only for those who see the end beyond all doubt. We do not.”
Stay safe and healthy, my friends.