Talked down off the ledge

Okay, so to update ... I am doing okay and feeling much, much better about my lymphovascular invasion (LVI) scare that could potentially warrant radiation therapy. I think what was most upsetting to me last week was just how news I'm not expecting sends me into so much of a tailspin. I HATE the feeling ... it's a complete mindf*ck ... as if contending with the physical aspects of treatment haven't been enough. It's an exhausting mental exercise.

Anyways, my support group members at YSC are phenomenal. I seriously don't know where I would be in this experience without them. I posted what happened last Thursday after seeing my oncologist. Besides all the big (((((HUGS))))) and words of compassion and support, I found some relief in the encouraging words of the following women:

Laura -- Camille, Repeat after me: "calm blue ocean... calm blue ocean... calm blue ocean..."OK. LVI. Very common. Yes, it's better not to have it, but I'd guess that most tumors over 2cm have LVI - at least that's what I've seen on these boards. I can think of maybe one or two women who didn't have it, but pretty much everyone else did - including me.I'd be shocked if your onc thinks you should have radiation because of LVI. The entire reason to do chemo and tamoxifen is for this very thing - tumors shed into the blood and lymph channels. The thing to keep remembering is that try as they might, those cells were UNABLE to set up shop and grow in your lymph nodes. Probably it's because either they weren't programmed to spread, or your immune system recognized a rogue breast cell and killed them. Nodal status, not LVI, is still the most important prognostic indicator. I had LVI and two good sized tumors and no one ever suggested I do radiation. My onc actually said that he wouldn't know what to radiate. The chemo and endocrine therapy will do their job. You have nothing to radiate.

Pam -- I echo what Laura said...radiation is not necessary. I had a positive node and didn't get radiation...I had 3 opinions on it. Don't think being "aggressive" means doing any everything that's available. All of these treatments have potential long-term consequences, so you must weigh the good and the bad. My uncle died as a result of radiation poisoning, so it wasn't something I was going to do "just in case". I think you're fine without it and you should look forward to your reconstruction in a few months!

Tracy -- Ditto Laura and Pam....LVI does not radiation make....unless he plans on putting your whole body in a microwave..lol. Chemo did its job. Radiation is for local stuff. Sorry you had such a blow. I wouldn't mess with the recon. Love, Tracy

Kerri -- Camille, Here are (((hugs))) for you. I just got through rads, and while I'm not sure what the best road to take may be for you, here is a reassurance that rads are so much easier than chemo. Not easy per say. Just easier than Chemo. My feeling was to go the aggressive route, since I am young (probably not as young as some of you, but still...), and I was willing to do whatever it took to give me the best chance in survival. It's different for everyone, but I did want you to know that while rads are a pain, your skin gets difficult, and it's tiring, in the end if it's the recommendation, it's worth every day of "pain in the ass" that rads may take. Also a quick note. I had silicone implants before BC, and rads have not damaged them (thus far of course).

Julie -- Camille, gosh girl, this sucks! I imagine you feel very disappointed . . . and a little scared. Keep in mind, you had no positive lymph nodes. That is GREAT!!!! Well, you know I am no doc but my inclination would be like yours -- what would regional therapy (rads) do to help vascular invasion? It would seem that systemic therapy (chemo, bio and hormone therapy) would be the treatment for that. My sense is NO rads. The radiology onc. is the final arbiter. If he/she says yes to rads, get a second opinion. Just in case you do need a second opinion, there is a great radiology oncologist at Mt. Sinai that I saw -- Dr. Judith Samuels. She is very bright and thorough, yet also sensitive to a woman's desire to preserve her reconstruction. Every case is presented at a weekly oncology meeting of all the docs at the comprehensive cancer center so you have the added benefit that everyone discusses your case and provides input. She will let you know if any docs have different opinions than hers.

Marcelas -- Camille, I know what you mean about being sent into a tailspin with new information. It seems that's the way this process goes. I am sorry for you. I had mulitfocal IDC (ranging from 3mm to 9mm - at least 4 tumors), DCIS and lymphovascular invasion and 1 positive lymph node and I was told by 2 different oncologists that radiation was not necessary for me. That said, every case is different. You need to get another opinion and go from there. Good luck with your decision.

So I decided I will arrange an appointment with the radiation oncologist my med onc recommended, and if necessary (i.e., I don't hear what I want to hear ... hee, hee), I will set up another consultation with the one Julie recommended at Mt. Sinai. I am hopeful based on what so many of these ladies have said that my situation will not warrant radiation. And if it does, like everything else, I'll deal with it. It does make a lot of sense to me that they wouldn't have any idea about where to radiate ... unless, like Tracy said, they put me in a microwave. Ha, ha.

"Calm blue ocean ... calm blue ocean ... calm blue ocean."