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#40575 12-22-2006 03:32 PM
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JStone Offline OP
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Har surgery on tongue on oCT 30.Md recommended radiation.Decided to get another opinion and went to MD Anderson in Orlando Fl.They did a Cat Scan which was negative but due to the narrow margins they want to reopen the surgical area and get wider margins plus do a neck dissection .Have also seen a radiolgist who is quite optomistic he can be succesful radiating the mouth and neck and destroy the cancer cells tha are present.Also had me take a PET and that came back not showing any indications of cancer.Am aware of radiation side effects.Have had oral cancer since 1992 and have had 8 surgeries...several on the right side of the tongue,stage 2 on the oral pharanx,floor of the mouth etc.Any advice or suggestions.

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The issue is that surgeons like to do surgery and radiation oncologists like to use radiation, and (sometimes) the twain doesn't meet ---

Perhaps ask both ENT and RO (at MDA) about why they theink their approach would provide a better prognosis for you. Try to get some feeling about success with previous cases similar to yours. Our MO says that ND is falling out of favor as it is not showing consistent long-term benefits (this a quote) -- apparently a lot of discussion of this at last ASCO meetings. But radiation is a very rough road and most folks say that comparatively, the ND was easy to handle.

I do know one person who had a similar situation to you, had oral tongue surgery and brachytherapy in NYC, this failed after two years and she came to Hopkins, where she had more surgery (on tongue). She told us the Hopkins ENT was very conservative to spare tongue tissue and had to leave fairly narrow margins so they then followed up with tomoTherapy IMRT. This very precise radiation delivery system allowed them to specifically target the surgical margins. I saw her last summer and she was doing well, never had a ND as the ENT did not feel it would improve her prognosis. But each doctor has his or her own set of experiences and past cases, which is why there is so much variation in details of treatment.

Gail


CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!
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My husband was diagnosed with tonsil cancer 12-2005. Tumor was small and ct scan only looked like 1 node was involved. Neck dosection was recommended by ent and visit with oncology was not until after the date of the disection. This concerned me. The plan had been neck disection, and radiation. The pathology came back and 5 nodes were possitive, and we were in a new ballgame. This now became a stage 4. Chemo was added to the treatment plan, the oncologist even gave extra rounds of chemo after radiation with concurrent chemo was completed. My husband was 42 at the time of dx, non-smoker, non-drinker. Margins were clear. Neck disection was a non-event for him, you can not even tell it was done unless you are really looking. We went to Johns Hopkns and were told that this is not standard therapy, but my husband says he does not regret having the neck disection, but if it came back he would have always wondered "what if" if he had not had the disection.


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Hi J,

I suggest getting all Doc's on same page. It is difficult to assess what to do, if you are getting several conflicting opinions from different MDs. MDA is a great facility. Your RADONC, MEDONC and ENT should all talk regarding your treatment regimin and then explain things to you. Neck disection can be a big deal, mine went smooth, but I know of the problems that can occur. I think my greatest asset besides my wife, was my docs all meet often to discuss treatment and results. They still collaborate 2 years post treatment.

Steve


SCC, base of tongue, 2 lymph nodes, stage 3/4. 35 X's IMRT radiation, chemo: Cisplatin x 2, 5FU x2, & Taxol x2. Hooray, after 3 years I'm in still in remission.
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My husband had neck dissection then radiation and chemo, he was also stage 4. He feels he had to do everything he mediclally could to be here and if that was what has helped him still be here 5 years later he has no regrets.


Sherrie wife to Dan, Tonsil cancer survivor, Stage IV diagnosed July/2001
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Per both our radiation onc and our ENT, neck dissection adds about 5-10% locoregional control, but it has more difficult to demonstrate long-term survivorship benefts. The current thinking seems to be that a certain subset of patients, which includes those with extensive disease and those whose post-treatment scans do not indicate a complete clinical response to chemoradiation (the standard treatment), can benefit. However demonstrated negative side-effects, many of which can be long-term (or even permanent) are making some oncologists question the routine use of this procedure in all patients.

In fact, it is, per our MO, "falling out of favor" and is not used, for example, at some top CCCs such as Sloan-Kettering. At Hopkins, where my husband was treated, many patients decline ND and the percentage is increasing.

It is also becoming recognized that a majority of tonsillar cancers are due to human papilloma virus, and of these, about 90% to HPV-16. The low recurrence rate and higher surivorship associated with HPV-16 positive head and neck cancer which has (based on post-treatment exams) responded successfully to chemoradiation may also make additional surgery less necessary. (Fakhry & Gillison, 2006; Gillison 2006, both J. Clin. Onc.)

Finally, the standard protocol at most CCCs is that ND follows chemoradiation, and the planning of the surgery is based on results from treatment and most-treatment scans and physical exams.

Gail


CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!

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