I had Squamous Cell Carcinoma of the right tonsil 4 years ago. I was the patient, not the caregiver. My wife took great care of me. Can I help with anything?
Laryngeal and Hypopharyngeal Cancer Questions
Asked by Yorkleeann on Wednesday, April 17, 2013
anyone here supporting someone with tonsil cancer?
5 Answers from the Community
I was diagnosed with stage III squamous cell carcinoma, T1N1, 12/3/2012. The primary was the right tonsil. The secondary was metastasis to a lymph node, which had swollen and indicated the problem.
I got angry and I dug for every bit of information that I could find. I refused chemo and radiation. This may not be your best option.
I was referred to a Professor at U of M, who will retire this June. He suggested that we do a radical tonsillectomy, partial pharyngectomy and remove as many lymph nodes from the same "chain" as the affected node as they could get. We would let pathology tell us what I was up against. I could deal with that a LOT easier than the guys who told me that I needed two kinds of chemo and radiation or die before this coming Christmas.
On April 3rd I got the results. The cancer was a small tumor, confined to the tonsil and had not escaped the margins of the radical tonsillectomy. None of the nodes were positive, so they would like me to return in a year for a PET scan! I was VERY lucky! Greg had it a lot harder than I did. It was no walk in the park. Ice water was like swallowing lava, but you get over it.
I was willing to do anything to stay away from chemo and radiation. Get a second, or third, opinion, if you don't like the first one! Get a fourth! Try to find an expert. My doctor was a Professor of otolaryngology. Read about the relationship between HPV positive SCC and treatment. This was key according to the Professor, but three other doctors at the first hospital told me that it didn't matter. You need a patient advocate, or become your own, quick. I live alone. I got some help from friends, but did most of it on my own. Chemo and radiation would have changed that.
Good luck and hang in there. I spent four months getting ready to die. It is a lousy way to spend four months. I'm REALLY looking forward to this Christmas. I may pay a few doctors a visit. :)
My husband was just diagnosed last week, we are in the beginning stages of everything...appointments Tuesday with oral surgeon to decide if he will keep his teeth or not, and the oncologist, then labwork. Wednesday is surgery day, a "triple-endo biopsy" removing the tonsil and affected lymph nodes. Then Thursday a PETscan & the beginning of radiation & chemo treatments. He will go home with a feeding tube & port in his neck for medication. I am guessing all of this is standard. We will not know until pathology comes back the source of the cancer. He has never smoked, drank, chewed, or dipped in his life, and he and I have never dated or had relationships with anyone else, so the "HPV" idea, throws me off & baffles me, though I have read that there are 40 strains & 100 variations of it. He is a gulf War veteran, so we are thinking maybe "gulf War' syndrome...disease, or he also had worked for the Federal prisons for over 20 years, and with that being said, who knows what he could have been exposed to. So sad for him, he is my best friend, married for 23 yrs this year.