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#39946 04-02-2006 09:20 AM
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My mum has been diagnosed with SCC tumor under her tongue. She had three weeks of chemo (light platonium(?)while she had three weeks of rad once a day and three weeks of double doses of rad. She finished her treatments 3/14/06 nad has been recovering. She had a PET scan done two days before treatment started that found there was only the very large tumor under her tongue (3cmx4cm) which was the primary. Her RO was very happy and said that there was no lymph involvement, but that he was going to treat it anyway. At no time has surgery been discussed. We have an appointment with her RO tomorrow and I was wondering if I should ask about a neck disection? I have done research on this wonderful board and have found alot of info about lymph nodes that have been affected being removed, but not so much on nodes that have not been. I have also found alot of info about the question of PET effectiveness when it comes to microscopic cancer cells. I most certainly don't want to push for anything that isn't neccesary, but everyone (RO&MO) has been so vague about what to expect after treatment...and they have only talked about a CAT scan to gage the effectiveness of chemo/rad treatment. I have a long list of questions for RO and would like some advise about neck disection before I open that can of worms! Thanks

Samantha

#39947 04-02-2006 01:17 PM
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For what it's worth, at the two large CCCs where we consulted after my husband's diagnosis -- Memorial Sloan-Kettering and Johns Hopkins -- neck dissections are not done routinely after chemoradation, and in fact at Sloan, we met with top HNC Dr. and he said quite bluntly, we do not do them unless we are pretty sure there is residual cancer.

At Hopkins, where my husband was treated (and he had 2 pre-treatment cancerous lymph nodes) they do a PET/CT (not a PET alone, it is not as accurate) couple of months out from treatment. At that point, surgery may be performed if the scan indicates a possibility of residual cancer. But not that many surgeries are done as they are getting very good response just from chemoradiation.

Having said that, most people on this forum who have had NDs have found that this was by far the least rigorous part of their treatment -- in other words, it sounds worse than it is.

So I would ask your mum's doctor about the pros and cons of a ND, and (if one is not done) what monitoring tests they will do in the future -- and how often -- to detect residual or recurrent disease.

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!
#39948 04-03-2006 01:59 AM
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Hi Samantha,

We questioned the ND also. And it looks like medicine is moving away from ND becasue of the results of the chemo/rad. But is sure was nice, on Feb 2, 2005 when my med onc came into my room and said the results of the pathology were negative.

The ND was the easiiest part of the treatment. From the lititure available at the time, my wife and I thought it was needed tro get clean pathology.

Steve Daib


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.
#39949 04-06-2006 10:21 AM
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i was negative in the nodes and had chemoradiation first for the tongue. the chemoradiation was effective, but not enough. i ended up having surgery anyway, and since they were performing surgery and cutting me up, they did a neck dissection to be proof positive. everything came back negative.

my experience was that an RO tells you that radiation is fine and no cutting is necessary, while a surgeon tells you should always cut first, and radiate afterwards if necessary.

My advice: see a surgeon if for nothing else than a 2nd opinion.


Diagnosed 6/05. Stage III SCC of the oral tongue. Nodes showed negative upon biopsy. 7/25/05 started Chemo of Cisplatin & Erbitux & 30 IMRT Sessions + daily Ethyol. 12/9/05, 75% hemi-glossectomy. Recovering since.
#39950 04-07-2006 01:55 AM
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This is at the moment an issue of some controversy (a direct quote from our MO) -- it really depends on the training, experience and outlook of the doctors treating you. Our RO told us about one of the current top CCCs where in the past the HNC "team" was strongly influenced by its surgical component and that at that time most of the HNC chemorad patients also got NDs. However, when that doctor left for another position, taking a number of his colleagues with him, the same CCC now does not recommend ND if the post-treatment tests show apparent complete response.

At Hopkins this seem to be in transition, the MOs and ROs have published quit a bit on "chemoradiation as sole treament" but I get the distinct impression that some of the surgeons would willingly do a ND if the patient consented. Some patients do and some do not. All get checked out by ENT after treatment and they can make their decision; Barry declined it (he had already had cancerous tonsil removed pre-treatment, clean margins except for small remnant at base of tongue and none of the surgeons wanted to touch that.)

The ENT who did his surgery is herself opposed to ND without demonstrated need, she has not found it provides any long-term survival advantage, though a relatively small % improved local control (5-10%, the same figure given us by the Hopkins ENT and RO). The published literature varies in its conclusions as to the advantages of ND -- some studies have shown no advantage, some show the opposite.

So the issue is at best confused...the best advice is to ask several of your doctors as to their thoughts as to the pros and cons...

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!
#39951 04-07-2006 03:22 PM
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The neck disection is an easier part of treatment for Head and Neck cancer. Not that any of the treatment is easy. I've had a neck disection and if faced with the decision to have another, I would do it without to much apprehension. The benefits emotionally of knowing the cancer is gone would be enough to push me to that decision.


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.

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