Monday, April 6, 2015

effectiveness of chemo at five years report

small sample, irrelevant for cancers where chemo is not typically used, but Thanks #AnnahSobelman for leading me to this line of questioning.

Very Overdue Update

I started this blog when I was diagnosed. After graduating to one mammogram a year, I found that insurance coding had changed -- that while *screening* mammograms annually are free, if they find something (which they always do --) it is "diagnostic", and so not completely covered -- i.e., "well the screening mammogram was covered, they found something scary, and did an ultrasound, which we aren't going to cover 100%". Wha? You are doing this to someone who has had breast cancer? In any event, I was put on watch and wait diagnostic mammograms every six months (again) last fall. None of which are covered completely. Scheduling the new one now -- Because of all of this, I'm menopausal, which is cool -- So, at what's supposed to be the five year mark, I'm not five years clear, and some of my friends -- have gotten masses in different parts of their bodies -- and were informed that chemo only works for two years. Going to look that up and report back!

Wednesday, February 27, 2013


On the evening news last night, somebody reported about breast cancer.  My Mom and her friend (we were hanging out, watching the news), boosted the volume.  While the reporting about Gen X, Y, Z, breast cancer was particularly egregious, I ... had to leave the room.  

No soy, birth control pills, or other hormone manipulations.  No smoking, but especially no smoking with birth control pills.  Find out your BRCA statuses.  I understand, as you do, the risks of early mammograms, on large populations.  But if you have naturally cystic breasts, 35 is aok for a baseline mammo.

I started thinking about filling in the gaps on this blog and making it a bit more public.  

My last event, 9/12, worked out well, and I was a learning lesson on proactive invasive biopsies on young women who've had previous breast cancer, at Cedars-Sinai.  

Doing some eldercare here in Florida, I realize even more than ever that Lindi Vanderwalde in LA is not only a "great cutter", but also a friend in the foxhole.  

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.

Tuesday, May 24, 2011

More on Memory Effects

As I mentioned in an earlier post, when I was looking at memory effects and other side effects of lupron, tamoxifen, raloxifene,

they cause memory effects. At the time, except on (generally not so reliable?) web forums, there was a great deal of complaining about these, especially in the case of lupron, where they were said to be irreversible and severe.

Many more medical sites, and some anecdotal evidence from older women, indicated that there were memory effects with menopause, and that this was pretty -- par for the course? Not talked about, lest it demonize older women in the workplace? Something one can work around? One's memory might not be so swell in any case? So that having menopause temporarily induced early -- might be ok? Better than a cancer recurrence?

Everyone has to make her own decision about this, but I want to tell you, of the side effects, and I suffered them all to some extent, the deterioration of eyesight, soaring risk of unrelated cancers (as high as 40%), soaring risk of blot clot and stroke, and memory loss -- acting, well perhaps goofy or downright crazy, but actually not remembering anything -- forgetting calls made, conversations had, e-mails sent -- hours long lacunae every day, more than a trip to the fridge or the store or the library wondering, oop, where's the car? why am I here? but forgetting the trip, and its result. Opening the fridge and seeing some item, and wondering -- hey, who bought the corn?

To revise Lyn Hejinian completely, to what extent is memory an aid to writing? What is the meaning of remaining in the now when 1) there is no past or future, 2) you don't remember what "now" was like earlier in the morning?

Now, some of these memory effects -- I wrote about this I think in an e-mail to a friend -- were perfectly ok. I dindn't want to be doing the laundry or unloading the dishwasher, and so my mind would just block out those repetitive chores. In the same way, this is how I lose my cars in parking lots (*especially home depot) -- because it is such an unpleasant routine, I am thinking of something else, when I park, and go into the store. Stress *obviously* has a part in this, and being seriously ill -- no matter how temporarily, is extraordinarily stressful.

Saturday, May 21, 2011

Some Rare Radiation Side Effects

I may have mentioned before that one of the rare radiation side effects I suffered from was "radiation flu" -- low grade fever (not particularly responsive to aspirin), achy, you know -- flu. It is more common in older women, so no one informs younger women -- how common it truly is! I had this for over a month.

Another one is lung damage to the lung underneath the irradiated area. Again, because this uncommon, about 5% of breast cancer patients, and because it is more common with older patients, it didn't occur to me -- or anyone! -- that this was what my persistent, dry cough and lung pain were. It doesn't heal particularly well on its own without a steroid.

Is my current thyroid condition temporary or permanent? Was it caused by radiation, or is a reaction to the "hormone stew" created by raloxifene? Watch this spot for answers. I'm hypo, meaning, after weeks of prednisone mania (I cycled off after three weeks, not TWO MONTHS!), I can barely get out of bed.