Raymond,
My base of tongue cancer was stage IV with 3 neck nodes. After being blasted by the radiation with a little chemo, the nodes were gone, and therefore no need for the neck dissection. I would imagine the same would apply to you.

Danny G.

Thank you very much for all the quick replys it sort of sets my mind at ease to here that no surgery is quite normal I thought to myself why come this far and not have the surgery to be sure. I was going to demand it I guess another month to wait is whats going to happen. CT is a month away and I'll know for sure.
God Bless
Ray

Raymond, Glad to hear you won't have to go through any surgery. I can tell you this has got to be the toughest aspect for my husband so far. He did have the neck dissection surgery this past February, and he is having an extremely hard time with the after-effects. As bad as going through radiation was for him - this surgery has been far worse. I'm at the point where I'm wondering if this surgery was really necessary after all. The surgeon said it was (of course)...but the radiation did such a great job at the tumor, I wonder if he should have waited with this surgery. Anyways - everyone being different, I know most people didn't have such an ordeal with it - but if you can certainly avoid having this done - be THANKFUL.

My husband had surgery in February for removal of the tonsil,base of the right tongue and soft palate. He has had 19 treatments of Radiation with 14 more to go. After reading different posts it makes me wonder if he should of had the RAD first. The doctors acted so quickly after he was diagnoised because time was so important. We feel he had good advice but we did not go to another source for another opinion of treatment. He is with Doctors from UCI in California and goes to Long Beach Memorial for the radiation. I know it will be a long haul for us but I want him to be able to eat again in the future. A question I have for others is when do the swallowing therapy starts, after he heals from radiation? There is so much of a differences of treatments with the patients in this forum, I get a little confused, what is best???? That is probably a silly question as everybody is different. Thanks, I will keep reading and hopefully learning. Becky

Becky, I think your choice of treatment is fine. The benefit of surgery first is that it heals faster. After radiation, surgeries are more difficult and heal slowly. Don't feel shy about asking his doctor (or another) why he/she chose the path they chose. I think you'll find it was a very normal decision.

I think that the swallowing therapy will only be necessary if he has problems beyond the norm. If your husband is able to swallow fairly ok then he will be fine. I say fairly ok because swelling and a certain amount of pain are normal. as it gets worse then he will need more liquid or blenderized food. Personally I had a little problem with getting liquids swallowed without a drop or two getting down the "wrong pipe" causing a coughing spell. That gradually went away.

Hang in there I think you are both doing fine.

How is his weight holding?

Hi Becky:

This is Kim borrowing Dave's screen name because mine is having computer cookie issues today. The reason you are picking up discrepancies in treatment plans for people with head and neck and especially oral cancer,is because the abyss is wide and provider preference as well as treatment protocals differ.Institutions that are research-based versus those that are surgical teaching facilities also muddy the waters.

Dave and I both are nurse practitioners and are familiar with the lingo and the hierarchy inherent to medical providers. We found it very overwhelming to navigate through options, weed out provider personalities (some good folks and some pompous asses looking to make Dave a new study number). You may have read some of Brian Hill's posts where he delineates the massive spectrum of options and opinions that exist mostly for the folks with Stage 3 cancers. There is also great debate about how you deal with nodes, does size matter, and does number matter.

In short, there are few absolutes in the treatment world.

I can give you a few helpful rules of the road though. In general, it is easier to operate on non-radiated tissue than radiated tissue(it loses it's pliability) which is why some people have the surgical procedure first. Some tumors aren't easily accessible at first surgically due to size and location and need to be shrunk by radiation first before surgery can be considered.
The overall health of the person prior to the diagnosis matter as well as other medical problems (like lung or heart trouble) that may make the person a poor surgical candidate.The immunosupression caused by radiation and massive weight loss can complicate surgical recovery as well.

You will also notice that there is much debate about the addition of chemotherapy to the mix. In most cases, if a non-surgical cure is sought, radiation and chemo are used together. In advanced cancers and/or those with multiple of bilateral node involvement, chemo may be offered as an adjunct to radiation.

The crucial point to make sure is that radiation is done to both sides of the neck down to the level of the clavicle in addition to targeting the location of the tumor.

The one thing that most practitioners don't recommend is a surgical only cure (no radiation to treat possible distant metastasis) unless the staging is VERY early which is pretty uncommon because there are few symptoms.

There is also hot debate about the efficacy of bone scans, abdominal scans, and PET scans which is a story for another day.

My best piece of advice is to have treatment at a credible facility that has a division devoted to head and neck cancer. Ask lots of questions at each juncture of the treatment process and get 2 or more opinions if needed from different providers. You will notice that most surgeons vote for cutting and radiation docs vote for radiation as you would expect. If needed, take films for another opinion to a different facility from the one in which you are being treated.

For the record, my fiance Dave had a 3-4cm tonsillar mass with one node positive. He was in excellent overall health and very fit. He was offered the option of a chemo and radiation course at Dana Farber here Boston or a neck dissection followed by a graft then radiation. We sought a few opinions who said chemo was not needed. We opted for the surgical route followed by radiation probably somewhat because as nurses we were more comfortable with the concept of removing the diseased tissue.I was also neurotic and made Dave have a chest CT and abdominal scan even though many providers told us it wasn't indicated with only one node positive. Well, if it's a question of me freaking out or being assertive-don't mess with me because I needed that peace of mind even more than Dave did.

Lots of folks on the forum have had success with the option of chemo and radiation and are doing very well without the downside of surgical scars.

My final thought is that the real key is getting complete state of the art treatment in a credible place with tight, vigilant, follow-up. And, as I am very fond of saying-Be the Driver of the Bus You Are On Because You Are the Most Interested in th Destination!

Best,

Kim

Kim,
What a great post! You did a good job of making some sense out of some confusing issues.

I'm currently struggling with that "peace of mind" issue considering spread. My husband had CT of neck and chest in December (clean) as well as a full-body PET (clean). Right after that, they did the neck dissection and found the tumor in his tonsil. The pathology also discovered involvement of one additional node, besides the one that was removed and biopsied early on. So that leaves me wondering if the PET scan was worth anything, as far as determining other areas of the body that could be involved. I guess I'm really going through these worries right now because he seems so weak still, almost 5 weeks post radiation and chemo. He is also having a tough time putting on any weight, even though he is getting lots of calories via a PEG tube.

I know this is kind of a neurotic rant, but let me know if you have any thoughts.

Thanks,
Anita

I just returned from MD Anderson, after meeting again with the swallow people and nutritionist. The bottom line is that when radiation is used concurrently with chemo., as was done in my case, it increases the intensity of the side effects, hence my continuing swallowing problems and my blocked esophagus, which has now been pretty successfully unblocked.
The good news in my case is that both my base of tongue tumor and three neck nodes are gone. However even after 7 months I can only eat soft foods, and not that much volume of them. I still have my PEG tube and use it once or twice a day. Of course I swallow liquids quite well and could drink Boost Plus or Ensure Plus rather than use the tube.

For many of us recovering from the treatment is a slow process. I feel well enough and am able to be pretty active, but I certainly would like to be able to eat more easily and more normally. Who knows, perhaps it will continue to improve. Treating oral cancer involves trade-offs. I have my life and my vocal chords, but my epiglotis ain't what it used to be. What can you do but carry on?

Danny G.

Hello again everyone,
Just an Update
I found out yesterday that I will be having a
functional neck dissection.
This will be on Aug 18/03 The Surgeon says depending on how stuck the nodes in my left neck are I may wake up with a Modified, My last CT on the 7th of July again showed my lympth node is still shrinking it's down to 1.5cm now and the are not sure if their is any cancer. Surgeons advice is to "not miss the boat on this", "one cell is a ticking time bomb" That is why I agreed to the surgery. I'll let everyone know how it went
God Bless
Raymond

It sounds like you have a very good surgeon. Many of the recurrences that I have encountered are misnamed, they are just reappearances of the original cancer in micrometastic form, that had been there all along, and finally had grown to a visible size. His advice is well founded. You are getting down to the easy part and it's almost over. Good luck on these final procedures, and we all wish you a rapid return to a normal life.