General Discussion
Related: Editorials & Other Articles, Issue Forums, Alliance Forums, Region Forums"Killer Boobs"
In light of Angelina Jolie's disclosure, I would wish to point to a lady I know who wrote a blog, and then a book, with the title above about her own experience with breast cancer.
http://www.amyshealth.com/killer-boobs-now-available-1569
If we strongly support women who choose this particular option for the sake of their health -- who must summon the physical and emotional strength to fight their disease and who must at the same time disregard our society's opinion, evaluation, or judgment of their choice -- then we perhaps change society just a little.
Which is way overdue as it regards women's choices as it is.
lillypaddle
(9,580 posts)to remove healthy breast tissue (healthy at the moment).
cali
(114,904 posts)East Coast Pirate
(775 posts)How likely is a woman with the RBC gene and a parent who died of breast cancer to develop breast cancer herself?
shawn703
(2,702 posts)Someone said that Angelina had an 87% chance of getting cancer.
East Coast Pirate
(775 posts)cui bono
(19,926 posts)East Coast Pirate
(775 posts)That's scary. And sad that she had to make that call.
tavalon
(27,985 posts)East Coast Pirate
(775 posts)Scary stuff.
ananda
(28,860 posts)... to the exact same procedures as Jolie.
But they don't and won't.
Only those with money will.
tavalon
(27,985 posts)Damn.
pinboy3niner
(53,339 posts)Cairycat
(1,706 posts)despite the fact that my mother, sister and I all had breast cancer. They said I needed three first degree relatives to pay for testing. I'd have paid for it myself, except that it cost $3000 plus, and then I was just starting the surgery, chemo, radiation journey.
Prophylactic mastectomy is fine if a woman has been thoroughly informed. It was not my choice, but I respect those who do. Had I chosen to go that route, I don't know if my insurance would have fought paying for it or not.
Javaman
(62,530 posts)My mom, sister and aunt all had breast cancer.
I saw what all three had to endure.
I think this is a very smart move on her part.
as a guy, I may also have the BRC gene, I'm seriously considering whether to get tested for it, because it shows up on men as colon cancer.
My dad and my other aunt had that.
If I could pro-actively have my colon removed with no ill after effects upon my health, I would.
Then there is my uncle, he had prostate cancer.
Needless to say, early detection is the running mantra in my mind. Yearly physicals and a colonoscopy every three years.
tavalon
(27,985 posts)but that would necessitate a colostomy bag and quite a few lifestyle changes and more bad news, men with the gene do get breast cancer, not at the rate of women, but when it happens, that bastard gene is always there.
Javaman
(62,530 posts)I had a buddy, about 20 years ago, get breast cancer. He, thankfully, survived.
HappyMe
(20,277 posts)To me, it's far better to do this than live with the constant fear. The mastectomy and reconstructive surgery is done at the same time.
tavalon
(27,985 posts)But it would be a no brainer for me. Bye Bye breasts.
NewJeffCT
(56,828 posts)and, yes, this is something that we should all strongly support.
pokerfan
(27,677 posts)My sister is breast cancer survivor. My friend's sister, not so much.
Bibliovore
(185 posts)...she decided to have her second breast removed, though no cancer had been detected. Its biopsy however, showed that it, too, had cancer. She was in her 40s at the time, and lived to be 91.
BainsBane
(53,032 posts)as a preventative measure. A double mastectomy would be a very aggressive treatment if someone actually contracted breast cancer.
I don't understand having breasts removed in anticipation of a possible disease. Couldn't regular screenings catch a cancer before it became life threatening? I certainly am not passing judgment on anyone else's choices, but it wouldn't make sense for me.
Ms. Toad
(34,070 posts)is extremely aggressive. It strikes young (typically before age 50), and some forms of cancer related to these mutations are aggressive (and hard to catch early enough to treat effectively).
BainsBane
(53,032 posts)So it isn't like a small mass that gradually grows larger over time?
tavalon
(27,985 posts)And did you see the odds? 87% is not one in eight, that's almost nine out of ten women developing breast cancer.
Ms. Toad
(34,070 posts)Some are small lumps which grow over time. Those are likely to be acquired when you are older. My mother (and grandmother) had that kind. Both were post-menopausal, both were slow growing, so could easily be treated. My grandmother, however, still died with metastatic breast cancer (it was not specifically what killed her, but it had spread throughout her body into her bones, which can be quite painful).
But even that is complicated. Given her history, my mother was quite careful about monitoring - both BSE (breast self-exam) and regular mammograms. She had had a mammogram within a month before finding the lump (more accurately my father found the lump - her own regular BSE did not). Once it was found, and they knew exactly where it was, the lump still did not show up on a mammogram - even when they used a needle during the mammogram to pinpoint its location. The doctors were certain it wasn't cancer, but did a lumpectomy anyway.
And, to make it more complex, she had fibrocystic breast disease - a condition which means there are tons of lumps in her breast all the time, and they change over time, so you also have to be adept at identifying new lumps from the ones which are there all the time - or which are new and different from the new fibrous ones.
My mother also had a second kind of breast cancer, discovered completely by accident. They did a minor surgical procedure to treat a different breast disorder and in the tissue they removed they found a 1 mm clump of invasive cancer cells in one of the milk ducts. She would not have felt that lump for years. (Likely slow growing, though, since it was also post menopausal - but that is how they start).
She has now had a double mastectomy - she could have gotten by, in each case, with a lumpectomy (and they were 10+ years apart) - but given her history which includes nearly a dozen lumpectomies, she was ready to be done with breast surgery.
My spouse also had an accidental discovery of cancer - one of the other kinds which people sometimes get preventative double mastectomies for. She had a lumpectomy - which turned out to be a cyst. But in the tissue they discovered LCIS (lobular carcinoma in situ). In situ means that particular cancerous clump would not grow - but when you have LCIS your risk for invasive breast cancer is 30-40% (as opposed to around 13% on average). She chose to be part of the Tamoxifen studies, which were cut short early when they had such dramatically positive results they determined it was unethical to continue "treating" one group with placebos. She still has both breasts, and no cancer.
And that gets us back to the question about this specific kind of cancer -
There are more than one kind associated with these gene mutations. Most of them often strikes young, before the age at which mammograms are routinely performed. Angelina Jolie is 37 - most mammograms start with a baseline at 40, but are not performed regularly until 50 (not sure on that - given my risk the routine ones started early). Mammograms aren't perfect - as my mother's experience shows - but they catch a lot of cancers early IF you have reached the age at which screening starts. And young people believe they are invincible - although I have regularly done BSE (partly because of my inherited risk), I would venture to say that only a small percentage of young women actually do.
And, any cancer which strikes early is typically more aggressive (grows faster) than other cancers. So - if you are not being screened, or if the screening fails like it did for my mother, are not doing regular BSE (or are and haven't figured out which of many lumps are old friends and which are new and cancerous) you may not find the small lump in time to treat it.
But - as to prevention - mastectomies are not perfect. This cancer can develop in any breast tissue. Mastectomies are not perfect - they always leave tissue behind. If you have a double mastectomy the motivation to be diligent about screening can fall off (after all, you've already taken care of the problem), so it may still sneak up on you.
It is not an easy decision - and not one I am likely to face since I am already past menopause - which means I will likely have the luxury of time. I don't know what I would do in Angelina Jolie's place - but given what I do know about breast cancer, it is not an unreasonable choice. (I do have one fewer ribs than I should, because one rib was removed to prevent larger deadly problems later that can sneak up silently - but on the opposing side with similar risks I still have the rib.)
Hope that helps - we often think of breast cancer as one thing, but it is really an entire collection of diseases. Some are slow growing, but others can grow fast enough that it would take a considerable amount of luck to catch them early enough to save your life.
sufrommich
(22,871 posts)lumpectomy, my doctor explained LCIS to me very clearly, you have a much better chance of surviving it because it's a cancer fed by hormones, get rid of the hormones and it can't survive. I think that's why Jolie is getting her ovaries removed,as I did too. I haven't had a bad mammogram in a couple of years,but every mammogram makes me anxious.
Ms. Toad
(34,070 posts)but ovarian cancer is pretty hard to detect, and at least one of the BRCA mutations also dramatically increases the risk of ovarian cancer. A friend's daughter has one of the BRCA mutations, and had her children earlier and closer together than she had planned so that she could remove her ovaries before she developed ovarian cancer (she had a grandparent, and perhaps an aunt die from either breast or ovarian cancer). I actually don't know whether she had a double mastectomy, now that I think about it.
BainsBane
(53,032 posts)I should really know more about this considering I have breasts myself. Breast cancer does not run in my family. My father had a mild skin cancer and my grandfather lung cancer from smoking. I have problems with self screening because my breasts are so large. It's disconcerting that mammograms didn't catch those cancers. Perhaps that's why doctors do not recommend them as frequently as they used to. Still, I need to get another one soon. Thanks very much for the excellent information.
tavalon
(27,985 posts)If so, why are my boobs still getting mashed?
Ms. Toad
(34,070 posts)The work-up is expensive and lots of insurance doesn't cover it. That changes 1/1/2014 with the Affordable Care Act - I have not verified that, but it was part of a report I heard yesterday.
But having the test isn't a complete remedy - if you are positive, you can lose the boobs if you want. If you are negative, you're stuck with them and the annual boob mash. As long as you want to have a better chance of catching the non BRCA cancers early.
Hekate
(90,683 posts)This cancer runs in families -- it is an inherited gene mutation affecting 10% or under of the population. Family history would be the best indicator for having the test, which iirc runs about $3,000.
Not every breast cancer is from this reason -- all of us run a 1 in 8 risk (12.5%). Women with the gene mutation run close to a 90% risk of developing breast cancer, and a 50% risk of ovarian cancer. Ovarian cancer is much harder to detect in time, and much deadlier as a result.
Warpy
(111,257 posts)She's made her career on her looks, yet chose a disfiguring operation to save her life and instead of trying to use prostheses and keep quiet and keep her career, she's chosen to speak out about this rough choice facing women with certain genetic variants. More will be courageous enough to take care of their own health because of her.
I always thought it was a shame she got stuck making kiddie superhero movies. I've seen a few small films with her in a dramatic role and she was very good. She's actually quite a capable actress.
tavalon
(27,985 posts)And she recognizes she can't do that dead. As well, if she never acts again, she has enough money to take care of herself and the kids. I'm not trying to diminish this at all, I just see the angle she's coming at it from. That she chose to make it public really fits into her character as a helper. I think she believes being open and honest about this could save countless lives. I think she's right.
GoCubsGo
(32,083 posts)Ooops.