hi everyone. well we have finished this part of our journey. all went well. dave did very well with all three cycles of chemo, burned quite a bit but has now subsided. the dr says that in previous years the standard treatment would be 6 weeks after treatment a neck dissection would be scheduled but they dont take that route anymore as only 3 out of 10 people actually still had cancer present in neck, they will monitor every 3 months?????kinda worries me...anyone have any similar stories and how did they go . any info would help thanks....

I had a CAT scan and an MRI before my surgery and both showed no evidence of cancer in my neck. I had the disection and they found one lymphnode with microscopic cancer. In your position I would not want to take the chance that I would be one of the 3 out of 10 that had remaining cancer after the treatment. No one WANTS to have a neck disection but they are not difficult to get through. I would imagine it would also give great piece of mind.
Good luck with your decision.
Minnie

Those are not very good odds. I maybe could see if he said 1 in 100, but 30 in 100! That is ridiculous.

I had advanced stage cancer with radiation and chemo only and I am 2 years cancer free today. The way you wrote the post is a little confusing. I take it that you meant that 70% show no evidence of cancer after treatment. I was seen every 6 weeks for the first 6 months by three different doctors. Then it moved to every 2 months for another 6 months. The second year it was every three months and they are now moving it out to every 4 months (starting yesr 3).

Exams every 1-3 months is typical for the first year.

See http://www.nccn.org/professionals/physician_gls/PDF/head-and-neck.pdf

Tammy, I had a modified radical neck dissection after chemo and radiation treatment. I presume Dave had rad and chemo at the same time (cisplatin?) and is now being given the option of having the neck dissection or skipping it. I had the same option, but my doctors all recommended doing the dissection to be sure that all of the cancer from this round was destroyed and removed. The only way to find out if it is destroyed is to remove the lymph nodes and biopsy them. I was lucky and mine came back NO CANCER. The best news I had had in a year or more. However, the thought that made me decide for sure to have the surgery was that I didn't ever want to look back and say "If only I had had the surgery, I might not have gotten this back". I know I will never ask that question because I had it all removed and if I have a recurrance I know it is from a new source, not the same tumor I had already treated.

I hope, regardless of your decision, that Dave doesn't have a problem further out. By the way, I am one year out from rad/chemo treatment and only have to go to the doctors once every 6 months. I think part of the reason is that I had the surgery and they don't need to look at me as frequently due to a lowered risk of recurrance.

The surgery itself was not a big deal at all. In fact, it was a lot less of a problem than the radiation. Given everything, I would have the surgery again without question even if I knew the nodes were clear. I just wouldn't want to leave something in my body that I know had been full of cancer cells, even if I knew all of the cells had been killed off. I wanted that filthy thing out of my body. Good luck with your decision.

We know that statistically, at the time of diagnosis, 28% of stage one and two oral cancers have an occult met to the cervical nodes of the neck which cannot be seen by conventional scanning technologies until it actually grows. This is from peer reviewed published papers, so the doctor is statistically right. The real question is do you feel lucky? 70% of the people could essentially get away without a neck dissection or radiation to the cervical nodes. The fact is that no one can tell you if you are in that 70%. For me this was a non-issue since I had bilateral cervical node mets at the time of my diagnosis, and I was way down the pike. This is a decision that you should make based on what you know, not the doctor. You have to decide if you want to know for sure, or you want to take the 70% chance that everything is OK. Just take a look at how many recurrences we have on this board alone. In all likelihood, many "recurrences" are not actually that, but the original cancer cells that were a non visible (occult) micro metastasis that weren't treated - but a year later they have prospered to the point where they are big enough to be seen on a CT or MRI. Many patients, while having radiation to the primary tumor also get neck radiation at the same time. IMRT radiation is making this even more popular as the ability to map the primary and then apply additional radiation to the paths of known progression and cervical nodes which can receive lesser and more targeted therapeutic doses of radiation prophylacticly, without the horrendous side effects that those of us that got blasted to the max are dealt. This doesn't give you an answer but a question. Perhaps a discussion with another doctor to balance your input and opinions would be in order.

Hi,

I am pretty new here and recently diagnosed (Jan.2005). I was stage 2 w/no mets (THANK GOD), however, I was not 100% certain that there were no affected nodes until after the surgery. The PET/CT was clean, but some nodes were enlarged on my MRI. It was an EXTREMELY difficult decision, so I know what you are going through. I personally felt that just because there is no evidence of spread on the diagnostic exams, does not mean that is no cancer there! I had the surgery (dissection), and am currently recovering from it. The edema to the neck is a little tough to deal with at times, especially now that I know the nodes were clean, but for the peace of mind, for me, it was WELL worth it and would not do it over any differently. Another note... I asked my dentist, doctor, ENT who diagnosed me, ENT who did the surgery, chiropractor, and two of the radiologists where I work what they would do if they were in my shoes. ALL of them, ALL, said they would have the dissection to remove the nodes. This also greatly influenced my decision. I know how difficult it is, and I truly wish you the best. I hope that whatever you decide is the right decision for you. Best of luck to you!!!

thanks all. i am sorry if it sounded a bit confusing the way i wrote the post, however, that is exactly how I felt confused. I should say that the Dr that we have been working together with, has told us that we do not have the choice of the neck dissection, we just sit and wait...I just dont agree with that which is why I wrote my post. Wanting to see if there were others who were told the same and the choices and recoveries that occured. Thank you all for your input it is greatly appreciated.

Tammy
This is certainly a confussing time and I had a little different situation and know the confusion you go through. If you primary doctor is not recommeding the neck disection it wouldn't hurt to go to another very qualified doctor and center with your data and get another opinion.

I will soon be facing the same decision. My inclination is to go the route the ENT is advocating. Have the partial dissection and hopefully obtain a bit of peace of mind knowing that one potential avenue of recurrence has been removed.

While I write that I had 1 node hot, no one really knows that. The radiologist said no, but every one concurred that it was best to treat it as though the cancer had reached a node. Moreover, during treatment it apparently did not "behave" in a manner that my rad onc. found consistent with a cancerous node.

It is a tough decision, but I would be inclined to have it even without a hot node.