Saturday, September 15, 2012

LCIS is usually multicentric and is frequently bilateral. In a large prospective series from the National Surgical Adjuvant Breast and Bowel Project with a 5-year follow-up of 182 women with LCIS managed with excisional biopsy alone, only eight women developed ipsilateral breast tumors (four of the tumors were invasive).[

and yet Big Pharma recommends tamoxifen...

Follow Ups

Thanks to my soon-to-be ex-husband, I am lucky to have great insurance.  While the follow-up protocol is breast exams, "careful monitoring of symptoms" (whatever that may be), and mammograms at six month intervals, my amazing breast surgeon was able to develop a plan that was an annual MRI, and an annual mammogram -- thus checking everything every six months, but having the more accurate images.

Well, the MRI picked up a mass in my "other" breast.  I immediately thought of Leonard Bernstein's MASS.  My surgeon did an ultrasound (my previous biopsy had been ultrasound guided by her), and she found a mass, but in a slightly different location.  Her breast exam, and my GYN's (hey, why not get all of these appointments taken care of while I'm hanging around?) revealed nothing.  Gala Labor Day weekend, then I had a mammogram and second ultrasound.  Nothing.  However, I have "cystic" breasts --- breast cancer doesn't run in my family, but this type of tissue does.  Radiologist advised scheduling everything *after* the full moon, say, during new moons, so that my hormones wouldn't be fiddling with the tests.  My breast surgeon scheduled a second MRI in a different facility, one in the hospital where I had had my previous MRIs, which has the equipment in place to perform MRI-guided biopsies. By this time, I was hoping a biopsy wouldn't be necessary, to the extent that during my admission process, when the techs etc. kept saying, you are here for a biopsy, I kept saying, no I'm here for a possible biopsy after the MRI.

I was there for a biopsy.  Reminder to all that my right arm is off limits for IVs and what not, due to the lymph node removal there two years ago.  Seven core samples.  Sharpie on my left breast, "Yes."  A friend looked up online and saw that WD40 removes sharpie from skin.  Or Acetone.  Or goof off.   I was saying, maybe I should get a tattoo that says "Yes" on my chest.  She said that was one of the worst ideas I've ever had, go get some WD40.  I know where three different sorts of WD40, Acetone, nail polish remover, goof off, and graffiti removers used to be in my old house.  48 hours of waiting, spent primarily cancelling flights and sleeping.

Well, they did find something.  Lobular carcinoma in situ and atypical lobular hyperplasia (LCIS/ ALH).  This is actually even less than Stage 0, because it is not ductal.  I think.  Must do more research, which I will report here.  My other cancer was a palpable lump (found by my soon-to-be ex-husband).  He had found a lump before and it was just a cyst, but I had a baseline mammogram back then, around 9/11, and everything seemed ok for a person with cystic breasts.  Nine years later when I did turn up with stage 2 (although my surgeon assures me it was really only a stage 2 when measured in a particular way) with two of three sentinel nodes involved (so seven lymph nodes were removed -- first set, second set), the cyst (I think the radiation burned it out?) is gone, but remains a sort of harbinger of doom.

I think it is completely obvious to say, after all this, that for people who have had breast cancer before, mammograms and breast exams are NOT sufficient to detect trouble early.  Despite all of the published opinion to the contrary.

I have also decided that "watch and wait" is not a good idea for stage 0 in people who have had previous breast cancers.  Now, I know from previous research that a cancer in the other breast is generally considered a completely different cancer -- it just doesn't walk across.  But, I seem to have this body which is extremely excited about making experimental cells.

So, I meet with my surgeon (more rental car extensions, etc.) next week, and we make a plan to excise as much as possible.  Since I can't tolerate tamoxifen or raloxifene, I'm hoping not to undergo prophylactic chemotherapy.