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."

MINDF*CK

I saw my oncologist today for routine follow-up and she said she would like me to consult with a radiation oncologist to discuss some findings on my final pathology report. Apparently, the final report indicates the breast tissue removed during my mastectomy showed evidence of possible lymphovascular invasion (LVI) ... my tumor had characteristics of cells trying to escape through the small blood vessels in the breast tissue.

My breast surgeon was very reassuring about this when I saw him a couple weeks ago, stating that he got clear margins and my sentinel node tested negative. Under the normal protocols, he said I shouldn't be a candidate for radiation because the two tumors I had side by side were less than 5 cm and I didn't have lymphnode involvement (although only the one sentinel node was taken). Usually, you need more than 4 positive lymphnodes to warrant radiation therapy. Nevertheless, he still urged me to discuss the LVI in the pathology report with my medical oncologist to be sure.

My onc today said that's it's true I don't fall within the normal guidelines for radiation, but they just don't know enough to say what to do for LVI ... in fact, there is no protocol ... but I'm "young," yadda, yadda, yadda. She said I could still have LVI without ever having positive lymphnodes. So obviously, if I want to do EVERYTHING to be aggressive, I guess I should entertain radiation ... even though I had a mastectomy, I did chemo, I am doing biologic therapy (Herceptin), and I am doing hormonal therapy (Tamoxifen).

But if I have LVI, how is radiation (regional therapy to the breast area) going to help microscopic cancer cells that may have already escaped through the blood vessels to distant areas outside the breast (like to the lungs, liver, bones, or the brain)?? Isn't this what chemo, Herceptin, and Tamoxifen (systemic therapy methods) are for?? Isn't radiation only intended to stop cancer cells in their tracks if there are any left behind in the breast? I just wonder what the percentage benefit would actually be if most of my breast tissue is already gone. Risk vs. benefit ... how did my life come down to this?

Maybe I'm just in denial, being naive, vain, reckless ... fill in the blanks ... but my honest feelings (today) are that I don't want to mess with my present recon. (Radiation will likely damage/tighten the remaining muscle and tissue in my breast, thereby possibly impeding a good result for implants.) One of the upsides to me about opting for the mastectomy ... if you can believe there IS an upside ... is that I was going to be able to avoid radiation -- something the oncology protocols would have MANDATED if I had only had a lumpectomy.

I just got the good news that my exchange surgery for implants is scheduled for Thanksgiving time and I was feeling soooo good about that. Now I feel like the rug is being pulled from under me again. This whole emotional rollercoaster is really too much at times. It all feels like such a crap shoot because of this beast's unpredictable nature. Breast cancer is predictably unpredictable. I just wish someone could look in their crystal ball and tell me what's the right thing to do, promising me I will never, ever have to worry about cancer again. I'm so tired of this ... really, really tired.

(Now here come the tears.) (:-(

Today's Funny

You know, this reminds me of the time my 5th grade class incubated and hatched baby chicks. At that tender age of 10, I didn't make the connection that eggs could actually become baby chickens. We eventually learned through this experiment that the gooey, white spot on the yolk is where an embryo can begin to develop if the egg has been fertilized and incubated. Uh, I stopped eating eggs COLD TURKEY! It was THREE whole years before I suddenly began craving scrambled eggs with cheese again. So now, I just try not to think about it. Denial is the greatest coping mechanism for any issue. Just my two cents. (smile)

Thanksgiving comes early!!!!

New boobs are scheduled for Monday, November 19th ... the week of Thanksgiving! I am almost jumping out of my skin with excitement!!!!!

Today, I met with Dr. Marshall, my plastic surgeon. It's the first time I've seen that chic since my surgery in May. Whoa! Yes, she is just that busy. I'm okay with that, however, because I know how well-respected she is and what a great job she has done and will continue to do for me down the road. She told me Dr. DerHagopian, my breast surgeon, had called her about getting me an earlier date for surgery. I believe now she would have accomodated me even without his input. She's such a great lady -- very compassionate, gracious, and KNOWS HER STUFF!

I brought numerous pictures with me to show her how I'd like to look with the implants. I do not want stripper boobs, but I do wish to fill out my clothes as nicely as I did before I had breast cancer. To facilitate this discussion, I showed her perhaps 15 (or so) pictures from various Playboy magazines, Victoria's Secret catalogs, and even some pics I printed from the reconstruction thread on my online support group message board. I showed her examples of what I liked and what I didn't like. I want cleavage, but not with the girlz too close together and not too far apart. I want good projection, but I don't want them sitting up toward my neck either. Given this exchange, Dr. Marshall has a fairly good idea of what I want now, even though I trust her judgment. She believes she will likely use high profile, high projection silicone implants with around 500 cc's of cohesive memory gel. The memory gel has a "gummy bear" consistency so that even in the unlikely event of rupture, the silicone will stay in place rather than leak anywhere into the body cavity. (Silicone is what most people prefer because it's much more natural feeling than saline implants. Also, silicone no longer has the bad rap that it did in the 1980's when all those baseless class action suits were filed. Ultimately, plaintiffs had a very difficult time proving any toxic effects produced by the presence of implants and those lawsuits against the manufacturers went away.)

Dr. Marshall also mentioned she will do a little liposuction on a small pocket of fatty tissue I have on the upper part of my right breast at the time of surgery. She said that will just even things out with my other side. I wouldn't have even noticed this without her pointing it out. Just goes to show what a good eye this woman has for detail! She said she will also start working on my nipples (twist and stitch method from the incision line) and do my areola tattoos at the same time. This thrills me even more because I will be looking more natural sooner than I had ever imagined!! I honestly thought the tattoos and nipples would come at least 2 or 3 months later based on other people's experience. Dr. Marshall says I won't be complete, but she will at least begin this process and finish it up on an outpatient basis in her office later. She told me she is also going to start working on the "paint" for my tattooed areolas. She likes to match the areolas to the color of the lips, but I had on bright red lipstick at this appointment so she'll have to match it another day. I had to laugh because it was almost like having a discussion about paint swatches for my home! You know ... like do I want a flat paint or glossy finish?? I told Dr. Marshall she should be sure to use primer and give me a semi-gloss since it will be easier to keep clean! Ha, ha. Seriously speaking, I don't think I want my areolas the same color as my mouth ... that's wayyyy too pink for my taste ... I'd much rather them be in the brownish family, like my old ones. And remember, I took pics the night before my surgery so I wouldn't forget how they looked! I'm going to insist on a close match to what I had before when the time comes.

In the meantime, my tissue expanders have been getting filled with saline every two weeks and Dr. Marshall estimates I will have probably 2 more fills to complete my expansion. I am very pleased with how EVEN my breasts are looking now and they look fairly natural in my bikinis and clothes as well. They are so hard though ... I can't wait for the implant exchange that will leave me with more natural, squishy boobs!

I plan to do Race for the Cure the end of October here in Miami and I may travel to New York in early October to do Avon's 30-mile breast cancer walk. (My friend, Price, had suggested I do the walk with him since he's proposed to do it in my honor. Awww!) Good thing I won't have to worry about these tough tissue expanders bouncing around. But I'll be joyfully bouncing around by Thanksgiving this year! YAY!!!!