Thanks for that further encouragement Karen.

Ok, here's my first question. Cathy, you emntioned you might not have been a candidate for IMRT because your cacner was poorly differentiated. I thought I had some idea of how IMRT worked and differed from general field radiation but I don't have any clue how that relates to the differentiation of the cancer. And although I have some clue about how differentiation relates to how aggressive the cancer is, I guess I'm not really all that clear about what it means in general.

I've been doing a lot of other reading here about people's experience of radiation therapy. It sounds hellish but I'm convinced I can get through it if the opinion is that it will help my chances of survival.

Nelie,

There's a fairly useful dictionary on the National Cancer Institute site (www.cancer.gov) that covers many of the standard terms related to cancer diagnosis and treatment. I've copied its language about differentiation here:

"In cancer, refers to how mature (developed) the cancer cells are in a tumor. Differentiated tumor cells resemble normal cells and tend to grow and spread at a slower rate than undifferentiated or poorly differentiated tumor cells, which lack the structure and function of normal cells and grow uncontrollably."

IMRT is designed to target the most powerful radiation on specific locations and is particularly suitable for tumors that are well-differentiated. By targeting in this way, it can spare the surrounding areas better than field radiation and in many cases lessen the long-term dry mouth effects. My understanding is that, because of the more unpredictable nature (and potential aggressiveness) of tumors that are poorly differentiated, IMRT can be less effective with them, as there is a greater likelihood that it will miss some cancerous cells.

Cathy

Cethy, Thank you for that. So are there four levels of differentiation then (undifferentiated, poorly differentiated, moderately differentiated and well differentiated)? My breast biopsy, for example, indicated well differentiated cells but my tongue biopsy indicates moderate differentiation).

Are all the cells in a tumor going to have the same level?

Nelie,
"Moderately well differentiated" means that the cancer is pretty much contained in one area. That should make you should be a candidate for IMRT. Another clue on your chart is whether the cancer is "focally invasive", that is also an indicator that the cancer is contained. Like Kirk I had a right tonsil cancer and they radiated both sides as a precaution. I have made a pretty decent recovery from the treatment and other than not being able to sing as high as I used too, still sing lead vocals in a band. I even forget a water bottle from time to time but I always had one around before the cancer. It did take a little while to make a full recovery - over a year. But we are all different and you may not have as bad a side effects as I did.

Thanks Gary. The pathology report for my tongue biopsy diesn't say "moderately well differentiated", it just says "moderately differentiated". Is that the same thing? It also doesn't say "focally invasive". Actually, it says "invasive (see comment)" and then there is no comment (I guess I'm going to have to ask about that when I get this info. sent to whereever I'm getting a second opinion).

I just wanted to update everyone who was so helpful here. I filled out the form to request a second opinion from Dana Farber and heard from them yesterday that they would at least be able to get me in for a consultation with a radiation oncologist there, hopefully a dentist, and possibly their entire head and neck team about whether I need radiation and issues regarding radiation of two different sites (breast and oral) at once.

The new patient coordinator from Farber was very helpful in explaining what I needed to get sent and I was able to get most of it sent yesterday after I spoke to him, although I did have to drive to the two surgeons offices to sign forms releasing the information. The only thing I think i have left to get are the images, which he said I could carry with me when I come.

It's amazing the charge that gave me--finding out I would get the second opinion from there and getting everything sent off. I guess it's that thing abut having so much be incontrollable right now but here is an important thing I *can* control.

I still have my moments of being terrified of the radiation, if I have to have it. And then I have moments, thanks to this site, and all of you who answered my initla post here, of thinking that it will be hell but a hell I know I can get through.

Radiation sucks and it will be burdensome and tedious but it is not worthy of being terrified over. It is the thing that will save your life.

I would ask them to explain the reading a little bit better - or wait until you go to Dana Farber.

Congrats on getting into Dana Farber.

"I would ask them to explain the reading a little bit better "

Yes, I have a call in to my ENT because I have a bunch of questions for him. One of them is about that pathology report; mainly, does he understand specifically what it means or dies he think it's related to whether or not I should have radiation? When he first examined me and gave me a tentative stage II the only thing I remember him saying about the pathology report is "most squamous cell carcinomas are moderately differentiated" as though it wasn't very informative. He had the same comment for the "invasive" part.

"Focal": means limited to a specific area.

"differentiation": In cancer, refers to how mature (developed) the cancer cells are in a tumor. Differentiated tumor cells resemble normal cells and tend to grow and spread at a slower rate than undifferentiated or poorly differentiated tumor cells, which lack the structure and function of normal cells and grow uncontrollably.

Here is a resource for cancer terms: http://www.cancer.gov/dictionary/

Tongue cancers can be pretty aggressive, I would be suspicious if they didn't recommend radiation -even in a stage II.

I found it essential to have a good note taker throughout all of this.

I had a conversation on the phone with my ENT after my last post here yesterday and it's clear I need to talk to the rad. oncologist here who said he didn't think I needed radiation. It turns out he did get opinions from the oral cancer team at Roswell Park in Buffalo (one of the NCI cancer centers). I think I mentioned that our hospital's cancer treatment center is affiliated with them.

Anyway, it turns out the opinions on my case at Roswell Park were 50% in favor of radiation and 50% against, which kind of confirms the sense I've gotten reading here about people with Stage II Tongue cancer that some have had radiation and some haven't. If I'm wrong on that take, or if more of those folks who didn't get it later had reoccurences, I'd be interested in hearing from people here about that.

My ENT said I should ask about pros and cons when I get to Farber no matter what the rad.oncologist recommends. I should ask about whether they have collected data showing less likelihood of reoccurence in Stage II. I should also ask, regardless of what is recommended, if that is based on a protocol they have that they use with everyone and if there is research supporting that protocol.

I don't intend to make my decision based on my fear of the treatment. Thanks to reading here,I can see people survive the treatment and eventually can even sing again. But I am concerned that radiation is this big gun you get to use once and if I use it now and then have a recooccurence in some inoperable place, I'm really SOL, right?

I understand a recoourence is bad news and so the argument can be made that one should do absolutely everything to get it the first time. But I guess I have enough of the empiricist in me (a Ph.D. in experimental psychology) that I want to know that radiation by itself improves the odds of not having a reoccurence. Because otherwise, it seems like it would be better to keep it as a possible treatment for IF a reoccurence should happen.

Am I asking about this in the right place here? Perhaps I should take this discussion to the area for discussing treatment?

Nelie