Wednesday, February 27, 2013

News

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,

http://genxbreastcancer.blogspot.com/2011/01/memory-effects.html

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.

Sunday, April 10, 2011

a last gasp...

Oestradiol and oestrone levels in two groups of women (oral contraceptive users and non-users) were investigated by Sarkola et al. (1999). Blood was removed 40–150 min after alcohol intake (~2.5–7.5 UK units consumed in 30 min at 6 p.m.). Food intake was not controlled. In oral contraceptive users, an assumed alcohol-induced rise in oestradiol, but not oestrone, levels was evident. In the non-users the evidence was less convincing. In agreement with the proposal of Mendelson et al. (1988), these authors suggest that a change in the redox state of liver cells induced by alcohol metabolism is responsible for increased enzymatic conversion of oestrone to oestradiol. Furthermore, they cited the work of Tseng and Gurpide (1979), which reported that the enzyme responsible, 17β-hydroxysteroid dehydrogenase type 2 enzyme, is induced by the synthetic progestins contained within some oral contraceptives.

More Alcohol and Cancer!

"And in women, drinking may change estrogen levels, increasing the risk of breast cancer." from the LA Times

New Study in the British Medical Journal
http://www.bmj.com/content/342/bmj.d1584

If we assume causality, among men and women, 10% (95% confidence interval 7 to 13%) and 3% (1 to 5%) of the incidence of total cancer was attributable to former and current alcohol consumption in the selected European countries.

I.e., 1-5% of cancers in women attributable to alcohol.

Of that 1-5%, 2-8% are breast cancer.

A substantial part of the alcohol attributable fraction in 2008 was associated with alcohol consumption higher than the recommended upper limit: 33 037 of 178 578 alcohol related cancer cases in men and 17 470 of 397 043 alcohol related cases in women.

This is somewhat curious as "109 118 men and 254 870 women, mainly aged 37-70" were surveyed. How could there then be 397 043 alcohol-related cases in women, if 254 870 women were surveyed? What is this claim -- that they are alcohol-related -- based on? Where does the reporter get the estrogen link claim, if there are more alcohol-related cancers in fewer men?

OK, upon further reading, the study supports a finding that 3% of all cancers in women are alcohol-related. If one then looks at the total incidence of all cancer in women... then 3% of that number could be... 397043?

The highest absolute number of alcohol attributable cancer cases in men was found for upper aerodigestive tract and in women for breast cancer. The study mentions this several times, as in

What is already known on this topic
Alcohol consumption has been causally related to cancers of the oral cavity, pharynx, larynx, oesophagus, liver, colorectum, and female breast

For cancers that are causally related to alcohol consumption, the proportions were 32% in men and 5% in women, with a substantial part (40-98%) being attributable to current alcohol consumption above the recommended upper limit of two drinks a day in men and one drink a day in women.


Here is this -- WHICH I HAD NOT SEEN BEFORE:

the alcohol (ethyl alcohol) in the drinks, consumed at the rate of two or more drinks a day, that increases your levels of circulating estrogen

Studies that have investigated the effect of moderate alcohol consumption on the level of oestrogens and progesterone in both pre- and post-menopausal women are reviewed. It is concluded that several lines of evidence point to an alcohol-induced rise in natural or synthetic oestrogen levels in women. Proposed mechanisms include an increased rate of aromatization of testosterone or a decreased rate of oxidation of oestradiol to oestrone. Moderate alcohol consumption has also been linked to decreased progesterone levels in pre-menopausal women.

And they say they don't know how pr+ cancers in women function.

This is all very confusing; it says in several very public places that alcohol increases estrogen production, especially in the breast. But the scientific sites don't say that.