Advice for Head and Neck Cancer Patients during COVID-19
One thing that makes me a little bit unique is that not only am I a head and neck cancer survivor, I’m also a scientist, and my career was focused on developing new treatments. One thing I’d like to share from my perspective is that medical science is making remarkable progress in developing novel treatments for a number of cancers, including head and neck cancers. Advances in diagnostics, immunology, radiology, and surgical robotics have all been put into practice over the past 15 years or so. These have made this a much more survivable cancer than it would have been even 20 or 30 years ago, and that’s great news.
Being a cancer patient is a marathon, not a sprint. Your doctors will NOT forget about you because of the COVID-19 pandemic. Everything is going to take longer than you think it should, but it’s always been that way. Appointments won’t get scheduled with the urgency that you think they deserve. We’ve all been there, gotten frustrated, sometimes cried, and I want to tell you it’s going to be OK. Your treatment is likely to go in fits and starts, and the recovery plan may follow that same pattern. Patience for patients is a good path to follow. It’s OK to get upset; just understand that it will not speed up your transition from cancer patient to cancer survivor.
Having said that, it’s also important to understand that you need to be the best advocate for your own health. If you don’t understand something, ask to have it explained again. If you still don’t understand it, ask them to explain it in a different way. It’s often a good idea to bring a family member or friend to your appointments to take notes and to support you if you start to feel overwhelmed. One thing I found helpful was keeping all of my cancer paperwork, files, scans, and bills in its own container so that I could always find them. There can be a lot of stuff to keep track of as a cancer patient, with appointments, medicines, scans, and exercises, so having an organized way to track these is quite useful.
There’s a lot of information that’s available to cancer patients online. I urge you to search for, and only look at, reliable information from reputable organizations. There are plenty of good websites, including the American Cancer Society, the National Cancer Institute, and the Mayo Clinic, along with the many national cancer center hospitals, such as Memorial Sloan Kettering, MD Anderson, Dana Farber, etc.
Patient advocacy groups are also really helpful in guiding you along on your journey. Unfortunately, there’s also a lot of misinformation online, which is mostly designed to separate desperate cancer patients from their money. There are no miracle cures for cancer, though we all wish there were. Forget about the nutritional supplements, stem cells, and other touted potions. They don’t work. Put your trust in what your treatment team tells you.
After I recovered from being treated for tonsil cancer, I decided to put together my own website for other patients. It organizes info I collected from many of the sites mentioned above, along with other useful advice and resources for new cancer patients to tap into. It’s pretty comprehensive, and you can find it at HPVCancerResources.org. It’s completely free, and I think you’ll find it helpful even if your cancer is not one that is HPV positive. Focus your attention on the pages under the Patient Information tab, where there’s info on basic types of treatments, support and advocacy groups, clinical trials, and much, much more.
Finally, I wanted to pass along a book recommendation I got following my own cancer diagnosis. I found it helpful for learning to deal with the fear and uncertainty that all cancer patients experience; this has only been compounded by the COVID-19 pandemic. The book is Viktor E. Frankl’s Man’s Search for Meaning. It’s a post-WWII memoir written by a Jewish psychiatrist who spent time in four Nazi concentration camps. His parents, brother, and pregnant wife were all killed. Every day he dealt with the greatest indignities imaginable, with a very reasonable chance that it could easily be his last. What does this have to do with cancer? He ultimately figured out that it was just not possible to get the thing that was making his life terrible go away. The same is true for cancer patients. This led to an understanding that when people face these challenges, the only thing we can really change is how we respond to them. You can’t cure cancer, but you can figure out a way to make the best of the situation. This, too, is not an easy undertaking, but I found it very helpful in learning to move forward after my diagnosis.
Stewart Lyman, Ph.D.
Cancer Researcher and Biotechnology Consultant
Survivor of HPV-attributed Tonsil Cancer