Paula - If you go to "Forum Home" and click on the "Getting Through it Project" you will see "Glossary of Terms" which gives a whole list of abbreviations for terms used. IMRT = Intensity Modulated Radiation THerapy. x35 means the person had 35 treatments. Tx = treatments. Cisplatin is a chemotherapy drug that is given for some types of cancer. Not sure if this last one is a correct or complete enough definition - maybe someone else can correct this or give a better one.

Goodmorning Paula and Happy new Years to you and your family.
I recently finished (july) 39 hyberbaric oxygen treatments in Buffalo. HBO treatments are not used in the treatment of head and neck cancers. Hbo treatments are for those of us who develope osteoradioncrosis after radiation treatment to the jaw area. Osteioradioncrosis is just a fancy name for "bone death" which occurs after prolonged radiation. Fear not it does not happen to many of us , I think about 10%. Your husband may be a candidate if he is having dental issues after his treatment (this is why they pull many teeth before radiation). I asked all of those questions about the re growth of cancer cells, I had finshed rad. and chemo in december 2005 and neck dissection in January 2006 , began HBO in May 2006. I recieved many opinions from ongologists, oral surgeons, HBO specialists etc. and about 9 of 10 said it was safe. One Dr. said to wait at least two years of being cancer free, unfortunately the ORN to my jaw was not waiting. That brings us up to the present, I am doing great , no more jaw/tooth pain, great check-ups from all my docs and on January 11 I reach the 1 year plateau. I will see you all there ,I will be reaching back to lend a hand to those on the path behind me. Hang in there, all is well. Keep pushing ahead.
Lenny

Lenny, Thank-you for your great explanation regarding HBO Tx. I'm hoping that I don't fall into that 10% you were refering to. Did you need jaw replacement surgery or did the HBO Tx. take care of your jaw.
Thanks for your participation and wishing you well.

Mark D.

Amy --

If you husband is being treated at Hopkins then post-treatment they will do a number of thorough exams (including PET/CT scan) and determine if he has what is termed a "complete clinical response" (cCR) -- that is, the treatment appears to be successful with no residual cancer found. At that point you may well get conflicting recommendations about the ND (we did) -- the ENT being in favor and the MO and ROs much less so. Many patients decline further surgery at this point, and I get the strong impression that this percentage is increasing.

If the post-treatment exams/scans indicate residual cancer then it would be a different story.

Gail

Mark ,
all went well, a few teeth pulled afterwards but that was the goal anyways, I could not have had those troublesome teeth pulled without the HBO. Had some temporary myopia as a result of HBO and that was a pain in the neck/ass having to drive 140 miles round trip for treatment every day. Ohh well all is well today and is most days. Hang in there all of my friends.
Lenny

Hi Amy,

When you say that many patients decline the neck disection and that you feel the percentage of patients doing this is becoming greater, are you talking about the patient population at the hospital that treated your husband or do you mean head and neck cancer patients in general??

I was told by Moffitt Cancer Institute a CCC before my Tx that the current thinking is that the patient is no better off with the ND and chemo rad than with the ND and chemo rad. They did not recommend dyrgery for me and I followed their advice and I hope they are/were correct.

David, I also did not have a ND.

Mark,

Your OLD SCHOOL. I mean the dinos were still roaming when you were treated. LOL

Hi Minniea --

I think your question was really for me (not Amy) as her husband is not at the decision stage yet for a ND.

My comments referred to ND in general, at least this is the impression our MO brought back from the ASCO meetings this past summer, where benefits from ND was apparently a "hot topic." She said ND is falling out of favor (that's a quote) because more serious side effects are being seen with no significant benefit -- e.g. paper from Fox Chase showing doubling of time on a feeding tube in ND patients. Certainly some top CCCs (e.g. Sloan-Kettering, ranked #1) no longer routinely do ND.

As many of you may have read, my husband did not have a neck dissection as none of his doctors save the Hopkins ENT recommended it -- and now even he agrees Barry made the right decision, for him.

However, Barry did have a pre-treatment radical tonsillectomy by another ENT, which was when his cancer was diagnosed. The tonsillar cancer was his primary though he also had nodal involvement and base of tongue. As with many (most?) non-smokers with tonsillar/BOT cancer his was strongly human papilloma virus positive.

The latter is an important point. There is a great deal of ongoing research on HPV+ cancer now and they are finding far less recurrence, better response to treatment, and better long-term survival in HPV+ SCC. Barry was entering the Hopkins HPV vaccine trial and of course well up-to-date on this information. This undoubtedly played a role in his decision to decline ND (and it was always his decison). Since he had an apparent successful respose to treatment, the doctors did not try to compel him into surgery, though I am sure if his post-treatment scans had indicated failure of treatment the consensus recommendation from his "team" would have been quite different.

A number of papers have shown little benefit overall for ND but some have indicated that a subset of patients show improved locoregional control (about 5-10% per both our ENT and RO). Our RO added, but no long-term survival advantage. Other papers have shown improved survival in patients with residual nodal disease, as indicated by post-treatment scans or exams.

One problem, and this is highlighted in Dr. Gillison's editorial in Dec. 2006 Journal of Cinical Oncology, is that many studies comparing treatment protocols do not know HPV status of the patients or do not restrict the experimental groups to one type or another. This can greatly "muddy" the results, since the two cancers are biologially different and could respond differently to treatment, possibly even including benefits of neck dissection.

So right now this appears to be a changing scenario, which makes it dificult for patient to make a decision.

Gail