Total agreement about finding competent medical help (why we always advocate finding a CCC or CC for treatment). Personally, I went to UCSFCCC for RT and had the leading researcher for IMRT and H&N cancer treatment. UCSF has conducted many clinical trials for zerostomia and other H&N related areas of concern.

As far as H&N fibrosis is concerned, as in other areas, because of our relatively small numbers, we are going to be piggybacked on to other treatment modalities (except for a very few brave researchers). We wouldn't have access to IMRT if it wasn't for prostate cancer.

So was the breast cancer article merely postulating a correlation between radiation induced fibrosis (in general) or did they actually (and specifically) examine that aspect?

In the grand scheme of things, my fibrosis is an annoyance, to be sure, but it sure beats the alternative...

Gary

Good point about our relatively small numbers reducing H&N specific studies. I was the one "postulating" here, since the article itself explictly lists 3 "unanswered questions", the second of which was
[quote]Second, fibrosis occurs in many different
organs and tissues after radiation. Is it equally reversible in all of them?[/quote]
The footnotes indicate studies from radiation for lung cancer
I admit it's a jump but I had found other studies that did involve head and neck cancer like this one:
Oral Pirfenidone in patients with chronic fibrosis resulting from radiotherapy:. It's too small to be significant with only 5 full participants,[quote] Four of the patients had been treated for head and neck cancer and one had been treated for Hodgkin's Disease. [/quote]
They used range of motion as one evaluative measure.
charm

Other than the skin there are no organs in the radiated field in the typical H&N patient.

I can see where lungs and also the pleura would be of interest in a breast cancer fibrosis study.

I have full range of motion - when it's not cramping up.

Saw the Onc yesterday and he stated that the carotid artery is also subject to radiation induced fibrosis.

That is one of the few specific "what can I expect in the way of longer term side effects" questions that I actually asked during treatment. My RO said it is not necessarily true that I or anyone would have trouble with their carotid after treatment, of course we are talking IMRT in 2011. So yes, it is possible, but it is not a given. He also told me if I kept up with my exercises faithfully during the first year especially I would not lose movement, even if I had fibrosis. Just as soon not have any fibrosis, but while I am wishing, just as soon I had not been sick at all. Cannot pretend it did not happen, so we do our best, and be thankful for what we have.
Best,
Anne

The operative word in Gary's post is "can" as in physically possible. Not necessarily probable and certainly not foreordained. On the carotid threads, I have posted that despite having 95 GY of radiation to the same tumor spot, my cartoid tests show zero RIF issues, zero plaque issues and full normal flow and systolic velocities for both right and left carotid arteries. And that is for IMRT in 2007 and Cyberknife in 2009.
We all can agree that radiation is the gift that keeps on giving. I'm glad that it has not been so generous to me as to some others here at OCF
Charm

My advice is stay in the now and not the "what might be". You can easily drive yourself crazy with this stuff. How much of this is from regular aging and what is from radiation is anyones guess. In the 9 years I have been here there have been relatively few major fibrosis issues mentioned. I don't consider mine a major issue. I have other aging issues that far outweigh it in the grand scheme of things.

I should also mention that I haven't lost any mobility as result of my fibrosis, just occasional and sometimes debilitating neck cramps. My doctor has deemed it "chronic".