Hello everyone. I have not been here for a while. My recovery is going great.
My question is for my best friend. He also had a tumor in his tonsil but his went to stage four before they found it. He had to have a "radical" neck dissection. They cut from his right ear, along the jaw bone, to his chin and then from the center if that incision down his neck to the shoulder. They said the removed a lot of scarred tissue, his jugular vein, and sixteen lymph nodes.
All of the tissue came back clean, so we are hoping his cancer is gone.
It has been three weeks since the surgery and he is still in nearly unbearable pain. Has anyone gone through this? If so, how long did it take you to recover?

Thank you in advance.

Max Young
Stage 2 tonsil cancer --- SURVIVOR!

Max,

I had a modified radical neck dissection 7 weeks ago today !! My incision was ear to jaw and 32 nodes taken..but kept the jugular and nerve that affects shoulder movement. I was still in discomfort at 3 weeks, even at 7 it isnt "normal" alot of numbness..weird sensations, cant turn the head to the left very well. and some days some discomfort , I think it probably depends on how I lay at night. I will tell you what my Drs had to keep reminding me ( as I thought i should have been healed 2 weeks later LOL) He just had MAJOR surgery ....it is going to be 4-6 weeks to feel better and up to a year to be as good as it gets ! Small price to pay for being cancer free right ? ( beleive me I have to convince myself this everyday LOL) best wishes to you and him ...Can I ask ...How bad is it havin Tonsils out ? Mine are comin out in 2 weeks ..ughhhhh...wish they coulda done it all at once ..too many infections they gotta go !!

Geez- you and your best friend both having tonsil cancer-how scarey is that!!!. Shar is right-he had a major surgery and it may well take him quite a while to recoup. If he is in major pain- his Doc needs to address that now! Does he have to have any other treatment? Hope you are holding his hand tightly. P.S. Glad that you are doing well. Amy in Oz

Trust me, tonsil surgery is nothing after what we've bee through. The first couple of days are bad, your throat will be real sore. Then it seems to get better until the scabs come of, about a week after the surgery. A couple of days after that, you will be fine.

As for Me and Jeff both having tonsil cancer... They told me it was a rare form of cancer but I have to wonder now.

Thanks for the feedback.

The current thinking is that patients with a complete clinical response after chemoradiation may not benefit from neck dissection, that is, ND should be an option but not a routine procedure after treatment. This is rather a turn-around from where thinking was even when my husband was diagnosed (in June 2005) but reflects recent studies showing only modest local control benefit and no long-term survival benefits to ND in most classes of patients.

However, it should be emphasized that this means patients having an apparent clean scans and exams after treatment, and also, being closely monitored for the next few years. Also, for some ENTs (including my husband's) whether the patient was a smoker or not is important as this affects risk of recurrence. Since recurrence usually appears in the neck lymph nodes (per our MO and ENT), a post-treatment ND might be the prudent course of action for these patients.

However, our MO, RO and ENT now say that they would no longer recommend a ND for an HPV+ head and neck cancer that has responded completely to chemoradiation, as risks outweigh benefits. But if the outcome of treatment is uncertain, or if there is apparent residual disease, then a ND would be the prudent action.

Max -- tonsil cancer is actually increasing at a rate greater than that of oral cancer per se, according to Dr. Mara Gillison who is studying the role of HPV in oral cancer. She recently wrote that tonsil cancer may well be considered a "surrogate" for HPV+ cancer. Anyone with a tonsillar cancer should get the tumor tested for HPV, since it is a biologically different beast and responds differently to treatment than does HPV- cancer. Has a better prognosis as well.

Gail

Gail,

I think we to add BOT HPV+ SCC to that mix as well. In fact, ANYONE who has never smoked or hasn't smoke for years should asked to be tested for HPV.

Gail, has anyone ever explained how it can be determined if there is a complete clinical response after chemoradiation if no neck disection is done? We all know PETS and Cat scans can be incorrect, so how is this response determined with absolute certainty??
Also, and please don't take this the wrong way, but must you include in every post you make that HPV positive tumors have a better prognosis??? There are many people on here that are NOT HPV positive and you continuously bringing this up can cause distress to our newcomers. There are TONS of survivors on here that didn't have HPV positive tumors and yet they're still here, while HPV positive tumor patients have passed. Personally, I could care less if my tumor was HPV positive or not.
As I said, please don't take this the wrong way.

HPV tumors APPEAR, in very short-term studies, in the limited numbers of people looked at so far, by only a few institutions, to have a SLIGHT survival advantage. (Personal quote in conversation with Dr Gillison, Johns Hopkins in a private conversation. Dr. G is on the OCF advisory board) I don't think much about this and do not put too much weight on it as there are so many other mechanisms for losing my life each day. I nearly got smacked by a semi that wasn't paying attention on the freeway today. I have an tear in the valve in my Aorta that has been recently identified and put me at other risks, and I bet that anyone else here if they think about it can envisions other means of their eventual demise that do not include cancer. The slight survival advantage may not even figure into most of our outcomes.

Dr. Gillison isn't the only one to identify this subset of the OC population. I have seen her upcoming article that will appear in the June issue of the Journal of Oncology, and the sub-population is well defined in it. What we know about these people is increasing rapidly, but what we know at this stage is in the early stages of publication and while I am certain that her findings are accurate, is still short term.

Thank you for the clarification Brian. I hate to see HPV positive tumors touted as the "better" type of tumor to have! I realize that the research is important but not to the point of causing distress to new posters that are not HPV positive. Before we start behaving as if an HPV positive tumor patient has a huge survival advantage, we need to let the research go on a lot longer. And, as you say, at this stage in the game I've started thinking about other things that can cause my early demise that are NOT cancer...........let's just say it's made me buckle my seat belt faithfully and I pick up the salt shaker much less then before!

minniea,

Gail is only posting the differences she and her husband have been told by their doctors at John Hopkins to explain that there may be a difference and to encourage others to get tested for HPV. That is not different than the way we all explain the differences between RT and IMRT. I'm sure Gail is not trying to make HPV- patients feel badly. Both subsets have SSC and frankly it matters not to me that I may have some statistical advantage if I end up with a reoccurrence anyway, but

The more the defined subsets are studied the better it will be for all OC patients. That can only happen if everyone is tested for HPV and then both subsets are followed. As I posted earlier commingling subsets with HPV+ & HPV - SSC helps no subset and the sooner everyone is tested for HPV by all treatment centers, the more finite the subsets will become and the more accurate the conclusions drawn from those subsets will be.

If John Hopkins' preliminary conclusions suggest a slight difference when comparing them to a commingled population, it will be interesting to compare the 2 subset differences when the population of both are more uniform. Of course that may be years away even if there is a dramatic shift in the front line Dx protocols.