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Rad-Chemo vs. Neck Disection

Landranger25's picture
Landranger25
Posts: 207
Joined: Nov 2009

Hi all, before my treatment, my Doc offered the radical neck disection prior to beginning rads and chemo. However, he said that whether I had the disection or not that the result after chemo-rads would be the same. I opted for no surgery on that advice. I know some of you had both. Could you please comment on what discussions you may have had with your Doc regarding this? What he advised? Thanks in advance.

Mike

ratface's picture
ratface
Posts: 1233
Joined: Aug 2009

Mike

There is an extensive discussion on this at the oral cancer forumn under currently under treatment category titles, "pros and cons of neck disection" It's a good read, check it out should answer all your questions.

http://oralcancersupport.org/forums/ubbthreads.php?ubb=cfrm

SASH's picture
SASH
Posts: 276
Joined: Apr 2006

Some say that the scar tissue that is created when rads are done make surgery more difficult. I think it also depends on the size and placement of the tumor if surgery should be done first or second. In my case if surgery was done first it would have been to remove my entire tongue and voice box based upon the size of the tumor. This would probably have put me on a feeding tube for the rest of my life.

I did the rads/chemo first to try and shrink the tumor to make it a smaller surgery. After going through 46 rad treatments and 10 chemos, I went to the surgeon who at that point said they were going to have to remove between 85-90% of my tongue. Luckily when they went in and did 6 deep tissue biopsies through the radical neck they only found scar tissue. So in my case this was the best scenario. They still took the base of my tongue and attached the rest to the floor of my mouth but that was better than doing a entire new tongue out of stomach muscle.

MarineE5
Posts: 747
Joined: Dec 2005

I found my cancer by accident. Felt a small bump under my right jaw one morning. Long story short, ended up at the Surgeon's office and I had a tumor on the Base of my Tongue. My surgeon gave me 3 options. 1- Radiation and/or Chemo and no surgery. 2- Laposcopic surgery, neck disection to remove lymphnode involved with margins, followed by radiation and/or Chemo. 3- Removal of part of my tongue, Radical neck disection, tracheotomy, Peg Tube, followed by radiation and/or Chemo.

I opted for option 2, but when the Surgeon tried to remove the tumor on my tongue laposcopicaly (sp), he was unable to. I then chose option 3. I was told that I might have a speech problem and may have to use the Peg Tube for the rest of my life. I wanted the cnacer out of me. He removed 1/3 of my tongue, and all the listed above happened. I have a few words that I have some trouble with, but not many. I am able to eat and don't have the Peg Tube any longer. He did a great job. I wanted to get the cancer out of me and then follow up with the other treatments. The Surgeon and Radiation Oncologist recommended that I get Radiation only as they felt that they got all the cancer during the Surgery.

The Surgeon and Radiation Oncologist wanted to keep the Chemo as a backup in the event that I got cancer back in my mouth or neck. The Surgeon stated that he wouldn't be able to operate in that area if the cancer came back.

As it was mentioned, we try to do what we think is best for us, the Doctors give us choices when possible. We are the ones that have to live with these decisions.

My Best to You and Everyone Here

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

I was told specifically that the nature of my proposed surgery, which included both a radical neck disection AND the replacement of half of my tongue with muscle and even nerves from elsewhere (an area on my left arm above the wrist, as it turned out), required that they perform the surgery BEFORE rads and chemo.

To go with rads and chemo only, as I understandably wanted to do, to see if it 'got everything' and then elect to go back for surgery later if the chemo and rads fell short, was a no-go, for the reason SASH recites: the tissue would be too damaged to do the sort of refined stuff they were offering. The docs weren't referring to my neck, I don't think, but specifically to the rather intricate tongue stuff.

Mike, I have had cancer twice in the last four years or so, first the head/neck cancer, and then the same cancer, (SCC), in my right lung. Without getting into some of the heavier stuff involved in the decision-making process, my impression has been that my docs WANTED surgical removal to be an option. They WANTED chemo and rads to be doing clean-up duty. And I honestly do not believe it was to line their pockets.

But, my two cases were different from yours, most obviously because of location.

It seems to me that your doctors determined because of the location and stage of your cancer that surgery was not required. That is normally a good thing. There are three basic reasons, as far as I can tell, why surgery would not be considered the best deal: (1) it is not necessary; (2) it cannot be done; or (3) it woud not help an untenable situation.

In your case, it sounds as though the docs are opting for the first, and if so, that is a good thing.

Me, I would opt for the surgery, but that is only in hindsight and I even waver on that one from time to time after the fact. It's just that it seems the most aggressive course of action.

Hopefully you are not now debating whether your course of action was the right one. We do what we think is best for us, I hope; we do what our trusted medical professionals consider best for us, I hope; and then we ride the current of our choices, hoping that it does not turn into another rip tide.

It is the best we can do.

Take care,

Joe

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

Hi Mike. I was not given that option. I had a modified neck dissection and will start rads and chemo on the 16th. I had multiple nodes with disease and an occult primary. The neck dissection got rid of the gross disease (what they could see on the PET/CT) and radiochemotherapy is to "make sure" and micro mets are dealt with (I had some extracapsular extension). They also wanted to biopsy all the nodes to see if how far the lymph chain the disease extended. Fair enough.

I could opt for doing nothing at this stage I was told today, but will go ahead with it all because of my "outstanding" good health (the rad onco told me that today), my "relative youth" (I'm not 70), and my "great" attitude. They really want to kill it so I'm getting the Full Monty.

What was your Dx and extent of disease. If it was 1 node, then rads only kinda makes sense, but you'd think they'd do an extraction of the 1 node anyway. Dunno. It's all over the place with what we have isn't it?

Best,

Mick

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Hey Mike. I also was not given any option. Quite frankly though I could see this thing growing at an alarming rate after I was diagnosed. Strange, it acted as if it knew that I knew. It even surprised the oto that it had advanced all the way around to the base of my skull. So, kinda like Mick there was no discussion of an option. Gotta tell ya though, I agree with Joe about the reasons these decisions are made. Whatever the docs think are the best steps to take. I only had talked to my OTO for 15 to 20 minutes before I put my life in his hands. All I can say is I hope I get the positive feedback that Mick got today....
not makin light of the hard decision you made Mick.... just the attitude and health things. So don't back up on your decisions Mike. It is strange how no 2 are really alike.

Wish you the best
Steve

delnative's picture
delnative
Posts: 452
Joined: Aug 2009

I started out being told that I had to have the rads, and was given the option of chemo, which I was told would better my chances by 20 percent. I opted for the chemo.
After the rads and chemo, one stubborn lymph node refused to shrink any further. That was the point where I had a modified radical neck dissection. Just had my one-year PET scan and am cancer-free.

--Jim in Delaware

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Only surgeries I had were two biopsies, and installation of the Port and PEG. I even asked my Oto about getting the two lumps/tumors on the left side of my neck removed, and he nixed the idea. Said the treatment I would go thru would take care of them, and it does seem to have taken care of it= 15-month Survivor, without the lumps returning.

kcass

Landranger25's picture
Landranger25
Posts: 207
Joined: Nov 2009

Hey Mick, 1 node on right side with 3 cm primary on BOT. Exploratory surgery and tonsilectomy first. 20 some biopsies during exploratory all negative except for BOT. Kept tonsils. Now almost 3 1/2 months out from 33 rads and 3 chemos. After rads, node was bareley detectable but is gone now. Other than some uptake in right tonsil and old lesion site on BOT in first PET, all good. (Due to inflammation Doc's think) Another PET in April to check tonsil and BOT again. ENT this Thursday again.

Mike

GRAVEY's picture
GRAVEY
Posts: 84
Joined: Jan 2010

Your case sounds very similar to mine. I had a swollen lymph node on the right side, had it removed, went back for a tonsilectamy, found the primary at BOT, didnt get my tonsils removed, instead, I did 35 Radiation treatments and 3 Cisplatin chemos. I'll be going back next month for my first scan.
Good luck and prayers be with you on your checkup Thursday :)
GRAVEY

Tanager75
Posts: 86
Joined: Aug 2009

The doctor that headed my team is the head and neck surgeon. I had stage 3 tonsil cancer with two lymph nodes involved. I assumed going in I would have surgery. The way I remember is the surgeon told me SCC is aggressive cancer that they would treat with Rads and Chemo. He stated the team (my case was presented to the team and I was told recommendations two days later) felt this the best way to proceed in my case. I went with the recommendation without question (if not in shock I think I would have had questions). He seemed to me to imply that he did not want to disturb the cancer. Again, without clarifying questions this is just my ASSUMPTION. I will be coming up on my six-month check up and my new normal is pretty darn good. Just 4 months ago I didn’t think I would gain much back at all. This is my experience and hope it gives you something to think about and some hope.

Peace,

mark

ratface's picture
ratface
Posts: 1233
Joined: Aug 2009

Mike

This is the question you have to ask yourself? There are differing answers to that question but it comes in at between 10-22% of the cases. Ask your doctors How they would answer that question? You then have to make a decision and live with it. I went through chemo and radiation and my ENT was reluctant to do a neck disection stating it was his position to wait and see. Personally Cancer is something I chose as an area in my life where I did not want to wait and see. I then aggressively sought out the best ENT I could find who would do a neck disection based on the evidence of re-currance and had it done. It turns out I probably made the wrong choice although I may never really know if some microscopic cell was removed by chance. My pathology of the removed nodes all came back clear? I now have to live with the side effects of the disection which in my case is fairly severe lymphedema now almost 45 days past surgery. Actually tomorrow will tell even more as I go in for my six month scans? When all is said and done it's your call.

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

"What would you do if you were in my shoes?"

That is PRECISELY the question I asked my doctor.

It tends to clear up a number of issues, doesn't it?

Take care,

Joe

Hondo's picture
Hondo
Posts: 5672
Joined: Apr 2009

I too did not do any surgery just Rad & Chemo, doc told me if the Rad & Chemo did not take care of it he would do the surgery after. Scare tissue is still there in the neck and so is the little lump but the cancer is no longer there.

Take care my friend

Hal61's picture
Hal61
Posts: 656
Joined: Dec 2009

Hi Mike,

The doctors I see and trust, generally say no more than they have to. I was diagnosed--SCC base of tongue, two nodes on left pronounced--and referred immediately to a surgeon/specialist who talked about surgery. I asked him about chemo and rads, and told him I would need to seek another opionion. Not that I disagreed, but no alternatives were discussed with me at that point. He said, if I wanted, he would check with colleagues himself. I said o.k. He called me later the same day and said that his checking had found a second opinion, that rads and chemo might be advised.

That was how I got to my decision to get a radiation oncologist involved, and after listening to her, I opted for the chemo and radiation treatments. I'm seven days into 35 IRMTs, and will go for my second chemo next Monday. I know I might have just reversed the order (if order there be), and am prepared to look at possible surgery later. Best to you and your family, and hope your check up went fine today--Tues.

Hal61

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Diagnosed SCC Base of Tongue, two nodes on right - got recommendations from two rad oncos, one liked chemo-rads, no induction chemo (because of harm, damage), then surgery (surgeon agreed) - the other leaned toward possible induction chemo, definitely chemo rads, then surgery only if needed (salvage). MO also leaned toward induction chemo followed by chemo-rads, then surgery if needed. Finished three rounds of TCF (taxotere, cisplatin, 5-FU), and started 35 radiation sessions with 7 once-a week carboplatin chemo rounds on January 25. All doctors gave me the "there are several roads to take that are different, but can get where you want to go" speech. I asked the MO what he would recommend if I were a family member of his. Second rad onco's team would not be offering Amiphostine (which I wanted to take to try to protect salivary glands) - this, too was a deciding factor for me. My age (44) and self-proclaimed "sturdiness", and lack of medical concerns other than cancer and newly diagnosed non-insulin-dependent diabetes were factored in to the decision-making process.

Duggie88's picture
Duggie88
Posts: 528
Joined: Feb 2010

I went to the Hospital at the University of Pennsylvania and was seen by Dr. Weinstein who diagnosed me with a tumor connected to both my tongue and the epiglotis. At first he was going to use robotic surgery that he was instrumental in developing but because of the location he advised a neck disection. On December 18, 2010 he cut me from ear to ear, removed the epiglotis, the tumor,part of the base of my tongue, and a lymph node on the left side. I was to be in the hospital five days but released in four. I will begin radiation on February 17, 2010 on an area he called marginal on the tongue and also the left side where the lymph node was removed. He told me I could have radiation and chemo to clear it up but the chances of it returning were greater.Plus the fact that the radiation dose was greater without the surgery I had to consider the greater posibility of a feeding tube for the rest of my life. It was a no brainer for me. I had to learn how to swallow again and I feel I am progressing quite well. My mouth has not fully recovered so my chewing is limited. I look forwaard to my birthday in June and being able to call this experience history.

Best of luck
Jeff

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