To Lolly and Mickey

In a post below, Mickey and Lolly, you both mentioned the lymph system. Can you explain
this and what you mean by the lymph location? Are we talking armpits, collarbones, up in the neck? Lolly, you mention supraclavicular lymph nodes and someone in this talk mentioned the neck. Can you both share the location of these lymph nodes of the neck? Are they by the collarbone or higher up on the sides? Do they biopsy a lymph node to see if it's cancerous or do some other test?

Thanks.

Hi guest,

Sorry to butt in, but I do know about supraclavicular nodes, which are located on the opposite sides of necks just before passing the neighboring collarbones (not outside on shoulders).

They can eradiate nodes, and can do a fine needle aspiration (FNA, just a specific kind of biopsy); also some cancerous ones can be removed. Some people believe that the node removal could spread cancer, it's quite controversial...

As for Lolly & Mickey's nodes, I'll let them answer for themselves. :-) I don't know of their node locations, anyway.

Thanks, Jojo; I'm glad you explained it and don't even think that you butted in. That's what this board is all about.

When I had my original cancer diagnosis, the surgeon removed 20 lymph nodes with the breast . 12 were cancerous. In November, I felt a pea sized lump between my collarbone and my neck. A CAT scan revealed it to be cancerous as well as two more next to the lungs and two spots on the lungs. Chemo cleared all of this up. A recent CAT scan revealed two more lymph nodes with cancer in them and I begin chemo on Thursday.
Mickey

With positive nodes, didn't you also have radiation targeted at all the node areas? I am having radiation right now after chemo and surgery (single mastectomy). The radiation is targeted at my superclav, internal mammary nodes, the axillary (armpit area) nodes, the chestwall and the scar area. My radiation oncologist used IMRT & CT techniques to plan my radiation so it doesn't hit my heart, lungs, etc.

If you're interested, I have a lot of data on radiation -- I compiled an 80 page report (spiral bound, included oncology journal articles highlighted with the info that I wanted them to know about) that I distributed to about a dozen people (within my HMO and to others) to convince them to allow me to go outside my HMO to get the expert treatment I felt I needed. They called the day I dropped it off and I was successful in getting the provider I wanted. I'd be happy to share my info and research with anyone who is interested.

Val

To val, where are you having imrt done? I had a mast and am just finishing up my chemo. I started talking to my onc about radiation and he said that imrt would not be used in my case. I had 2 pos nodes and was planning on having radiation to chest wall and axilliary. can imrt be used in those areas?
Laurie

I live in Neenah Wisconsin and my radiation oncologist is in Appleton WI, about 10 miles away. She co-authored a couple of the articles I cited in the attached excerpt from my radiation request to my HMO -- while she was at Michigan with Lori Pierce, who is the guru of this approach to radiation planning for BC-- I hope someone finds this info helpful. The articles I cited can be found via lit search; let me know if you have trouble finding them. In my proposal, I highlighted parts of them so the HMO would read what I wanted them to read.

The consult I went to for the second opinion was very complementary of Edie and her work -- the email he sent back was absolutely glowing. he agreed with everything I proposed--and even used my book to explain IMRT to my husband while we were there.

I am sure I sound like a science nerd, but I belive in thorough research when it comes to my treatment. I have very smart docs, but I also have a strong need to understand everything and to make recommendations (like the one I mention regarding the use Herceptin after my radiaiton--he is still thinking about that, since there is no case support for it--my argument simply makes sense :-)

I have done a ton of research and I'd be thrilled if others can benefit from it. That's why I wasn't on this board for awhile--I was pretty burnt out!!

Val

Hey Val: I was under the impression that Herceptin created a highly positive synergestic effect with radiation and should be given at the same time you had your radiation treatments. I was heart broken when I had to discontinue herceptin use right before my radiation treatments (heart problems)but I hope that I got at least some of the benifit because Herceptin stays in your system a while ( I'm not sure how long...does anyone out there know?) after you stop taking it. Take Care, Linda in Calif.

I haven't yet read anything about Herceptin working with radiation. From what I know about the biology of Herceptin, I am not sure how radiation would play into it. But please keep me posted.

I am asking for Herceptin afterwards because there isn't anything else for me. People who are ER/PR positive can take any number of meds, such as Tamoxifen. I am ER/PR negative.

I believe that Herceptin stays in your system for a couple weeks -- after that your body breaks it down and absorbs it. I recall asking my oncologist how long it stayed in my system because I felt that if I kept teaching my spin classes and got my heart rate up several times per week, that the herceptin would get circulated more times through my system before it was absorbed by my body :-) I did keep up the biking classes through chemo (and I am through radiation as well), but who knows if it helped or hindered!

Val

If you type in "synergy, herceptin, radiation "into Yahoo's search, the first thing that comes up is an article about how all of the different chemo drugs work with herceptin. At the bottom of the chart is the comment that herceptin is "profoundly" synergestic with radiation. Let me know if you need help finding this information. Take Care, Linda in Calif.

Linda--thanks!!!!
I just printed this out and I plan to email it to my oncologist. I want to find out why this is so, and ask him if I should start Herceptin NOW...before my radiation is over.

Val

Val: Glad to be of help! I would definately try to do the herceptin at the same time. Good Luck! Linda in Calif.