April 15 2020
Article by Jeffery Shoop and NRG Oncology Patient Advocate in the Head and Neck Cancer Committee
A•ware•ness (noun)
- Knowing something
- Noticing or realizing something
- Knowledgeable
Let me add another word to this description…
Listen. Listen to what your body is telling you. Become more aware of your body’s “language”. I’m not trying to be hokey or spiritual in bringing this topic up, I have just come to realize that this is a real thing. Think about it. If you are completely honest with yourself, you will realize that your body tells you when something needs to be looked at.
Head and Neck cancer is a bit sneaky, as many times it goes unnoticed or is assumed to be something else. In my case, I thought it was an allergy issue because I had a minor breathing issue in my right nostril. I handled the breathing issue by using a nasal spray and wash, but it was not getting better over many months. The colds I had also seemed to be worse than years before. After messing around with this annoying issue, I made an appointment with an ear, nose, and throat (ENT) doctor. My body made certain the doctor knew something’s up too. Two days before the appointment, a lymph node on the right side of my neck swelled up to half the size of a golf ball. After having a PET scan and a biopsy, my diagnosis was Stage 4, HPV-P16 positive head and neck cancer.
My diagnosis happened in October 2011. We had never heard of Human Papilloma Virus (HPV) or even about head and neck cancer prior to that day. The doctor told us this cancer type was rampant with men in my age group (56). He said I was most likely exposed to this HPV strain when I became sexually active in my teens. He also said it’s been dormant for all this time and something changed in my immune system that allowed this virus to begin growing. This cancer was slow-growing and I had no pain, just this slow change in inhaling that turned out to be a tumor, which caused my breathing issue.
The standard treatment for this type of cancer is 35 days of intensity-modulated radiotherapy (IMRT) and three rounds of chemotherapy. However, for me, receiving surgery before treatment was not an option. As I went through the treatment, I also “heard” my body telling me to eat every two hours. Feeling bad during treatment is pretty normal, but I started feeling like I had the flu. It turned out that if
I ate every two hours, this “flu” feeling went away, therefore, we made sure I ate and drank water on that two-hour schedule. Another realization is that I felt better if I relaxed and mentally accepted the treatment. Allowing my body to accept treatment and not fight the treatment made a noticeable difference. Another advantage in mentally accepting treatment is that you are able to relax and maintain a more positive attitude, which makes the whole process much easier. Your positive attitude will be very much appreciated by your caregiver(s) too.
Well my treatment journey didn’t end there. The follow up scan at the two-year mark found two tumors in the right lung. We were absolutely shocked at this point! What’s next?
My oncologist said I had enough radiation and he recommended selecting a clinical trial. Again, we knew NOTHING about clinical trials. We started reading and searching for more information about clinical trials, we discussed our findings with our oncologist and selected an immunotherapy trial at Johns Hopkins Hospital in Baltimore, Maryland. Throughout this whole discovery process, I had no pain or breathing issues at all, but these tumors were growing. Again, as I began this clinical trial, I made the decision to accept the treatment and process. This was a two-year trial with infusions every 21 days and CT scans every 8 weeks. We started seeing very positive results after 6 months. And at the 10-month scan, no tumors were detected.
Listening to what my body was telling me helped manage side effects and pain better. I am still learning how to listen to what my body is telling me. Recently, my body told me in a not-so-nice way to get my stomach looked at. It took a few 3 AM visits to the ER for me to understand I should see a gastrointestinal specialist to solve my intestinal pain issue. Good listening skills are learned like understanding another language; it’s acquired through practice and experience. I seem to be a slow learner!
Another awareness is to become your own best ADVOCATE. Taking the approach of asking good questions and reading more about your cancer to better understand the treatment process is another way to stay positive. Your quality of life is important and you do have a say in selecting what’s best for you. My wife and I have recognized these three statements are true for us:
- Never stop asking questions
- Never stop looking for alternatives
- Never accept unreasonable answers
Also, be sure to have your caregiver go with you to all treatments and doctor visits. Write down your questions AND the answers as there are too many things to absorb and correctly remember at a later time. Also, let the nurses know how you are feeling. This includes both mental and physical feelings. The nurses are very good at their discipline and know how to address these problem areas. There are so many variables involved with treatment side effects for them to know the issues you are having, so it’s a good idea to “help them, help you.”
You are most likely aware of many things in your life. You are aware that if an odd noise is heard while driving the car, you know it needs to be looked at. Or if the smoke alarm goes off, you know to check out what is making the alarm go off. It could simply be that the battery needs to be changed or that the smoke from the frying pan is the cause. But the smoke could be from something more serious. You just don’t ignore the alarm. The same should happen when you begin listening to your body’s “language”. Get up and go see what’s making that noise or smoke.