Can anyone tell me what the side effects of irradiation of the neck are like? Both short term and long term if you know.

I had a scc tumor removed from the right anterior portion of my tongue; on the side of the tongue. The pathology report is completely screwed up. Eight separate �specimens� were removed including some initially positive margins. According to intraoperative frozen section analysis, one specimen was 2.0 X 1.8 X 0.8 cm and tumor positive on one end and a second specimen was 3.5 X 2.0 X 0.3 cm, tumor positive all the way around and contiguous with the 0.8 cm deep tumor positive end of the first one. In the �final diagnosis� the pathologist makes no other comment other than (infiltrating scc, 0.9 cm in greatest dimension). My H and N doc has not recommended any treatment of the neck and no scans. So far I have been unable to get an explanation of the discrepancy from either the H and N doc or the pathologist.

According to every study I have found, an oral tongue cancer 8 mm deep and/or 3.5 cm long has at least a 50% chance of occult nodal spread. Unless I can get a satisfactory explanation as to why I shouldn�t be concerned; either by my current doc or by getting a second opinion on my slides, my next step is to shop for a center that will do the treatment I want. So I�m trying to get an idea of the pros and cons of elective neck dissection versus elective neck irradiation.

At first glance, the irradiation looks like less potential for a big time screw up and a way to get ALL the bad cells levels I � V, and in transit.

(ps: my tongue surgery was done at a highly ranked CCC, and any shopping will be at similar highly ranked CCCs)

Thanks!

Well, fatigue definitely sets in. I don't understand all the mechanisms for how the radiation causes fatigue but believe me it does.

Likely you won't notice much for the first couple of weeks. If they're radiating the mouth you will begin to notice soreness in the mouth which will become worse over the course of Tx. Most people having Rad to the mouth area will end up on pain meds for the pain and eating can become very difficult if not impossible. Many people, myself included, end up getting a PEG tube in their stomach to pump in liquid nutrition. My first and second round of treatment, that's how I ate through treatment - pumping Insure through my PEG tube once I could no longer eat by mouth.

You can also develop burns on the skin from the radiation. My first round I didn't experience this as badly as the second round. First round I just had what was like a sunburn on my neck. The second round, by the end of the 7 weeks of IMRT I had open, oozing burn wounds on a good portion of the right side of my neck. These continued for a good month after treatment ended.

What most will tell you is that the symptoms radiation causes will continue beyond when Radation ends. The average seems to be about 4-6 weeks after Tx until they start to subside - that's about how long it was for me. You get so excited that radiation is ending, and it catches a lot of people off guard that the symptoms don't immediately go away upon finishing. Many people say it's the "gift that keeps on giving".

It can really vary depending on where and how much radiation you're getting to each area of the mouth, neck, etc. You should be able to find plenty of info on this site about the kinds of symptoms you can expect beyond what I've explained.

-Steve

Sadly, neither radiation therapy nor surgery will remove cancer cells that haven't formed yet -- That was apparently my case -- Two years following end of XRT following surgery, tumor started growing inside front of tongue -- The only guarantee you can get is that they will send a bill to you for whatever they did!

I should have mentioned the first time. The first time I had radiation it was because the tumor in my tongue was considered too large and deep for surgery. I had no positive nodes per a PET scan but my neck was radiated in addition to my mouth as a precaution.

The second time around, I had a RND on the right side, removing one positive node and 39 clear ones. Although only one node was positive, the cancer had broken out of the node and was invading other tissues and my carotid artery. In the RND they removed a section of my jugular vein, and my SCM muscle on the right. Radiation followed to both side of the neck. As I understood it, it was 'cleanup' as the margins from my positive node removed were not clear from the RND.

I'm not sure how common it is for radiation to be done to the neck in addition to the RND's. I just know in my case it was because they knew there was leftover cancer in there. The doc said he scraped as much suspicious tissue off my carotid as he could without jeopardizing its integrity. It was supposed to be a 1.5 hr procedure and ended up being 4 hrs.

From what you have listed, I sure would wonder out loud why exactly, radiation is not being suggested. Even though you are being seen at a CCC did you have a tumor board with several docs considering options? (by the way we are not doctors so view all opinions as advisory from the viewpoint of fellow cancer patients)

Radiation sucks so if you don't really need it be happy about that. My concern is that some docs like the wait and watch approach. That might be great for them but it is NOT for you if it results in reappearance of the cancer. (I did not use recurrence on purpose)

I just re-read your post and caught the last sentence. Sometimes the neck dissection is done to really establish stage. Certainly, RND can be theraputic as well. You are right though radiation is wider in coverage than surgery.

Would you please post what institution you are being seen at?

The word I got was that RT will treat skip mets on the tongue which might otherwise seem like a second tumor.

How did you catch the second tumor?

Steve,

Thanks for all the info. I read several papers on neck treatment and they were unanimous that RT is the standard following ND if extracapsular spread is found.

Brian,
I will. However to be fair I'd like to do it along with the resolution to the issue I posted which will take me a few more weeks.

Thanks,

Mike

I didn't think this question was unusual. I just try to keep track of what institutions are doing what. But you can not post it at all if you wish.