Joe's Story
My name is Joe D. and I was diagnosed with Head and Neck Cancer in April of 2015. I initially felt a lump in the right neck when I was shaving. When the lump did not go away, I asked my wife to look at/feel it since she is an oncology nurse practitioner. She felt the lump and said I needed to see my primary care doctor. I did not have one as my previous doctor had closed his practice. I saw a new primary care doctor who was very thorough. My wife was away at a conference and he called her with the details. He set me up for multiple tests including an ultrasound, labs. It was a whirlwind of a month with multiple doctor appointments – primary care doctor, ENT doctor, ENT surgeon, radiation oncologist and dentist. When we saw the ENT, I first saw the fellow who had some trouble doing the nasopharyngeal exam with his scope. I also had a biopsy of the enlarged lymph node in the neck. The initial biopsy was negative. The doctor came in shortly after and she told us very confidently that I had head and neck cancer. My wife and I were blown away. We did not expect this diagnosis. There were tears and we asked what do we do now and thought about what this would mean for us.
The ENT scheduled us to see an ENT surgeon. He informed us that I was part of the new demographic of middle age white males presenting with HPV positive head and neck cancer. He said there was a high cure rate and that it would be a rough six months but I should be able to handle it. I had three surgeries within a month. The first was to identify the origin of the tumor which was located in the right tonsil. That following week I had the lymph nodes on the right side of my neck removed on a Tuesday and that Friday I had the tonsil removed by TORS surgery. I spent 4 days in the ICU with a breathing tube. That was removed and I was discharged home with a feeding tube that was in my nose. It was not very comfortable! I was on a feeding tube for several weeks after the surgeries. My wife took off of work to take care of me and family friends helped her. I tried to be a good patient. Eating and swallowing was very difficult and some foods that I enjoyed I could no longer eat (Hot Wings, etc…) as they would burn or the consistency was difficult to swallow. My taste was only at about 60-70% for those months and for several months after radiation, but that has since improved to about 90%.
I had 6 weeks of radiation in July/August 2015. My subsequent two Pet Scans since have been clear.
It was a very difficult Summer of 2015. As mentioned swallowing was difficult so I had to see a Speech therapist to learn to swallow after surgery. She gave me a list of exercises to do to improve my swallowing and speech (Tongue and talking exercises, etc….). I also had lymphedema in the right neck and saw a physical therapist who specialized in lymphedema treatment. There I was given “a chip” to wear to help with the swelling in the neck as well as other manual exercises to do. I was also provided an exercise “strap” to help strengthen my right (Surgery) side-- stretches, arm and neck exercises, etc. It was while doing this physical therapy work I was informed about a Head and Neck Cancer Support Group that met monthly.
I attended my first meeting cautiously and remain involved with said Head and Neck Cancer Support group that meets at The Perelman Center/Penn Medicine on the first Wednesday of each Month (Except the summer months of July and August) – It is headed by a social worker. This chapter is going on it’s 16th year, the longest such group in the SPOHNC Network.
Guest speakers that deal with various Head and Neck Cancer issues are invited to explain in detail what side effects we may be going through and what to maybe expect and then as a group we talk about each of our individual issues. It is very helpful to hear what others have gone through (I’m considered one of the “newbies” of the group only 2 years out – some are 20-25+ years out).
I am thankful and proud to be a part of this group as it is not only very informative but you also form a bond with the other regulars. I encourage all those that can to join various support groups as it is an excellent outlet to learn, vent, share experiences, make suggestions, and meet new friends. I was fortunate to have my own personal oncology nurse practitioner in my wife. I am grateful to my wife and everyone that helped me through such a difficult time. Thanks for letting me share my experience
Joe D.