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Types of radiation therapy and chemo therapy combinations
Hello - my brother was just diagnosed with HPV cancer and had removal of lymphs nodes through right neck dissection and removal of right tonsil. He is 56 and otherwise healthy and very active. There was cancer in only 1 or 30 lymph nodes but it was large and the cancer was outside the lymph node (extra nodal extension). They did not find cancer in the tonsil and he is now scheduled to go back for the TORS surgery to remove the lingual tonsil. They are unsure if they will find cancer in the other tonsil and think there is chance they will not find the primary site. He is told he will need radiation for 6-7 weeks and likely chemotherapy as well.
My questions;
I've been reading about Proton therapy radiation and it seems like it is better tolerated with less side effects. He is at Dana Farber and they seem to have an excellent Head and Neck program but I don't see on their website they offer Proton therapy. What can people tell me about proton therapy vs. traditional radiation and is worth seeking out a 2nd opinion at a center with proton therapy? I've also read about DART and wondering if others have chosen that?
Chemotherapy was discussed but there was no mention of immunotherapy. Wondering if others have been offered immunotherapy? The doctor seemed to indicate that although
he was leaning towards recommending chemo that it would be reasonable for my brother to decide not to choose chemotherapy as the research is limited. My brother has hearing loss in one ear already and I've read that one of the side effects of the chemo used for HPV is hearing loss so this is of course a concern.
Thank you ahead of time for any thoughts, suggestions or recommendations to further research and discuss with his team. My best to you all!
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I had squamous cell tonsil (HPV) removed cancer and I did ask about proton therapy. My cancer surgeon said it would be worth using if my insurance paid for it, but she honestly didn’t think it made a big difference in life quality. I had radiation and chemo, no surgery because it was in a place where I was told would require breaking my jaw. I had 6 chemo treatments and 32 radiation treatments. I too had a very painful earache, but no hearing loss. I still take meds for the earache. Mine however is being caused from a combination of nerves attached to my neck and throat. I have a throat ulcer that affects my ear every time I eat something that irritates it. Addressing the tonsil removal-why????? I never had anyone say my non-cancerous tonsil should be removed. I’d definitely recommend getting a second opinion on that.
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1 ReactionThank you for your response. Just starting to look at other options. He just had surgery last week and originally he thought it would just be surgery and maybe radiation but hopefully not. The outcome of the surgery changed that and now the plan is another surgery, radiation and maybe chemo. That was unexpected and a disappointment. His oncologist has a lot of experience as evidenced by his published research. But I know educating ourselves is important too for informed discussions and decisions. Trying to gather that!
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1 ReactionHi @maeono welcome to our Head and Neck group.
Your brother as a patient or you on his behalf can question the path his doctors/oncologist want him on. Proton therapy for one can be performed anywhere it is available. It is common to have radiotherapy done elsewhere other than where the surgery was done. Just ask the question.
Keytruda and other drugs have been quite successful in helping to attack HPV16+ marker SSC. Again, if docs are not familiar or encouraged by this tidbit, perhaps your brother is in the wrong place or with the wrong doctors. Ask about the experience in Squamous Cell cancers, not about cancer in general. For example my oncologist performed radiotherapy hundreds of times yet I was his first tonsil SSC patient and in his entire career he had only one other after me. Mine was a bit botched but I’m alive 22 years later.
Don’t let them remove his other tonsil. It is a handy filter in case the cancer should try to return. 30 lymph nodes is already way beyond necessary in my opinion. Let’s just keep cutting the limbs off the tree until all the leaf bugs are gone eh? “First do no harm.”
Please ask the questions and if the answers are unsatisfactory then keep asking. HPV SSC is quite treatable and has many advances in treatment just in the last few years. Egocentric doctors seldom have advanced for centuries. Choose wisely.
Have you explored other options?
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