Ladies...if you found out that you had a breast cancer gene

[sdWTMer]

would you have prophylactic surgery (mastectomy) or would you try to just weather the storms as they come?

 

Here's an article that made me ask this question.

[Mom2legomaniacs]

I would seriously consider it. I don't know enough about the statistics right now to say definitively. But if it were such that having the gene meant a really significant chance statistically of going that route, I think I probably would lean towards it. It is very scary, but I wouldn't rule it out.

[Perry]

I'd have the mastectomy.

 

Bilateral prophylactic mastectomy reduces breast cancer risk in BRCA1 and BRCA2 mutation carriers: the PROSE Study Group.

 

Rebbeck TR, Friebel T, Lynch HT, Neuhausen SL, van 't Veer L, Garber JE, Evans GR, Narod SA, Isaacs C, Matloff E, Daly MB, Olopade OI, Weber BL.

Center for Clinical Epidemiology and Biostatistics, Abramson Family Cancer Research Institute, The University of Pennsylvania, Philadelphia, PA 19104-6021, USA.

PURPOSE: Data on the efficacy of bilateral prophylactic mastectomy for breast cancer risk reduction in women with BRCA1 and BRCA2 (BRCA1/2) mutations are limited, despite the clinical use of this risk-management strategy. Thus, we estimated the degree of breast cancer risk reduction after surgery in women who carry these mutations. PATIENTS AND METHODS: Four hundred eighty-three women with disease-associated germline BRCA1/2 mutations were studied for the occurrence of breast cancer. Cases were mutation carriers who underwent bilateral prophylactic mastectomy and who were followed prospectively from the time of their center ascertainment and their surgery, with analyses performed for both follow-up periods. Controls were BRCA1/2 mutation carriers with no history of bilateral prophylactic mastectomy matched to cases on gene, center, and year of birth. Both cases and controls were excluded for previous or concurrent diagnosis of breast cancer. Analyses were adjusted for duration of endogenous ovarian hormone exposure, including age at bilateral prophylactic oophorectomy if applicable. RESULTS: Breast cancer was diagnosed in two (1.9%) of 105 women who had bilateral prophylactic mastectomy and in 184 (48.7%) of 378 matched controls who did not have the procedure, with a mean follow-up of 6.4 years. Bilateral prophylactic mastectomy reduced the risk of breast cancer by approximately 95% in women with prior or concurrent bilateral prophylactic oophorectomy and by approximately 90% in women with intact ovaries. CONCLUSION: Bilateral prophylactic mastectomy reduces the risk of breast cancer in women with BRCA1/2 mutations by approximately 90%.

 

[3lilreds in NC]

I don't know.

 

I would be sorely tempted to have the surgery, I think. I've seen people die of breast cancer. I have a friend who is going through it now. If I could prevent it all with the surgery, I think I would. I would talk with dh about it, of course, but he's very respectful of decisions I make regarding my own health.

 

I have a friend who had this surgery. She said her family reunions are long tables full of women taking out their prostheses, LOL! But, breast cancer is so rampant in their family, that many of the women have chosen to go ahead and have prophylactic mastectomies.

 

It's an interesting thought. Since I do have breast cancer in my family, I should probably think about it. I'd prefer not to think about it, of course, but I probably should.

[Deeke]

My mother just went through breast cancer this past winter, she is still recovering from chemo and radiation, she had a radical mastectomy. I would think nothing of having both my breasts removed if I carried the gene.

[sdWTMer]

My mother had breast cancer and from the radiation she got osteosarcoma in her shoulderblade (on the opposite side of where she had breast cancer - go figure). She had to have her shoulderblade removed and fortunately she did not have to have her whole arm amputated.

Edited October 14, 2008 by sdWTMer

[Renai]

What is the incidence of women carrying the gene actually contracting breast cancer? I've also been friends with those who had breast cancer (one died). I'm just wondering what the percentage is.

 

Renai

[Deeke]

My mother had breast cancer and from the radiation she got osteosarcoma in her shoulderblade (on the opposite side of where she had breast cancer - go figure). She has to have her shoulderblade removed and fortunately she did not have to have her whole arm amputated.

 

So sorry to hear that, hope she is doing well now. Chemo and radiation and all the complications that come from them are horrible. Cancer sucks!

[Mesa]

I went through this dilemma this past August. One of my dr's suggested I test the other said no, I shouldnt. The problem is that 1 my insurance company would want to drop me and increase my rates, and 2 my life insurance would sky rocket as well. Not something I want to deal with. My insurance company wont cover the cost of the testing either and I was quoted 3,000.

I'm going to live like I have the gene. Both doctors think I am high risk. I now see an oncologist as well as my obgyn and my primary care physcian. I will have a mammogram yearly (I'm only 29) and 6 months after the mammograms I will go in for an ultrasound. This way I will be getting screened every 6 months.

It's a tough decision, thats for sure. I hope all this testing will be enough to catch breast cancer in the early stages. I also have a family history of ovarian cancer. It's very overwhelming....

I'm just trying to think positive and make sure I go in for all of my yearly testing. Thats really all I can do.

[Ria]

I would have the breasts removed as soon as possible. I've got a husband and a family...those are more important than pieces of flesh. That's really how I'd look at it.

 

Ria

[Pata]

I won't even go and get tested for the gene. My mother was diagnosed with breast cancer at 46 and died at 52. I don't know if she had the gene for it or not. I don't want to know if I do. I don't want to live my life knowing that I have the gene and that one day I will have cancer. I would constantly wonder if today was the day.

 

That said. I am cautious, I reduce my risk factors (the ones I can). I do self-exams and in another 4 years when my insurance will finally cover it, I will get a mammogram. For now, I miss my mom and I leave my life in God's hands.

[Sara R]

I can't remember the stats for getting breast or ovarian cancer with the BRCA 1 or 2 gene. It's really high, though.

 

Ovarian cancer is a bigger worry with BRCA 1 and 2. Its initial symptoms are vague and by the time it is usually discovered, it has spread.

 

Breast cancer, even caught early, can still be deadly. I'm on a young (under 40) breast cancer message board and there are multiple women there who are dealing with mets (cancer that has spread) even though they were originally diagnosed with stage 0, cancer in situ, where it hasn't even spread outside of the duct. In theory this kind of cancer should never cause mets--but it has with these women.

 

Plus there isn't a very good way for diagnosing breast cancer in young women early. Mammograms aren't reliable for catching cancer until about age 50. MRIs are very expensive and cause a lot of false positives. Ultrasounds are good for checking out a specific lump, but not for general screening.

 

FWIW, I don't have the gene (or a family history). If I found out I had the gene before getting diagnosed, I would have seriously considered the surgery. Breast cancer is a sneaky scary beast. I know it's October pink month, and the media buzz is that breast cancer is curable--which it is, sometimes, especially in older women. Women under age 40 have a number of strikes against us, such as difficulty of diagnosis and more aggressive cancers in younger women.

[Crissy]

My mother had breast cancer and from the radiation she got osteosarcoma in her shoulderblade (on the opposite side of where she had breast cancer - go figure). She has to have her shoulderblade removed and fortunately she did not have to have her whole arm amputated.

 

 

Oh, no! Julie, I am so sorry to hear this. You all have been through so much.

 

:grouphug:

[sdWTMer]

Oh, no! Julie, I am so sorry to hear this. You all have been through so much.

 

:grouphug:

 

I messed up Crissy...should have put HAD past tense. Oy. She had it removed many years ago and she's doing super now!

[Crissy]

I messed up Crissy...should have put HAD past tense. Oy. She had it removed many years ago and she's doing super now!

 

 

Ahhh. Whew!

I'm so glad it turned out well.

[CookieMonster]

What is the incidence of women carrying the gene actually contracting breast cancer? I'm just wondering what the percentage is.

 

This would be one of my questions as well. I'd also want to know what they base the statistics on: widespread analysis or a limited group. I'd have to look a little more at all sides of this.

 

And I prefer not to take part in any new procedure/treatment whose merits and pitfalls haven't been fleshed out well (as in tons of literature/studies/cases). I'm squeamish like that. Ask me again in ten or twenty years.

[cillakat]

vitamin d status has a major impact on

breast cancer

colon cancer

lung cancer

pancreatic cancer

prostate cancer

 

and based on that, likely all cancers. some top D researchers believe that optimizing D levels in everyone could decrease cancer deaths by 50% or more.

 

your doc can test your twentyfive hydroxy vitamin D level - 25(OH)D.

 

to insure accurate results, abstain from d containing foods and supplements for 48h prior to the blood draw.

 

vitamindcouncil.org has all of the evidence available from the scientific literature.

 

don't delay, optimizing d is one of the simplest, least expensive things you can do to insure your health over the long term. optimal levels are 50-55 ng/mL. 32 is the bare minimum but really it's still too low. aim for optimal.

 

 

all the best,

Katherine

[JudyJudyJudy]

My cousin is seriously considering being tested. If she has the gene, she plans to have her breasts removed. Her mother was diagnosed with breast cancer at the age of 33 and died at the age of 43. Her grandmother and great-grandmother also had breast cancer, as did every one of her grandmother's sisters except one (she has many). All of her grandmother's brothers have had cancer as well (one of her brothers has had cancer four times). She feels like it's not a matter of if she's going to get cancer, but when.

[JudyJudyJudy]

Originally Posted by sdWTMer

My mother had breast cancer and from the radiation she got osteosarcoma in her shoulderblade (on the opposite side of where she had breast cancer - go figure). She has to have her shoulderblade removed and fortunately she did not have to have her whole arm amputated.

I'm so sorry. :(

[Peela]

My cousin is seriously considering being tested. If she has the gene, she plans to have her breasts removed. Her mother was diagnosed with breast cancer at the age of 33 and died at the age of 43. Her grandmother and great-grandmother also had breast cancer, as did every one of her grandmother's sisters except one (she has many). All of her grandmother's brothers have had cancer as well (one of her brothers has had cancer four times). She feels like it's not a matter of if she's going to get cancer, but when.

 

You know, if I was in this situation....I guess I would seriously, seriously consider it, but I still don't know that I would go for a full masectomy necessarily.

I realise many cancers are not affected by diet, lifestyle, mental condition- but I think I would optimise everything I could. There is some reason women are getting breast cancer by the droves, and I dont think many researchers are getting paid to find out if it is diet, or stress, or whatever. No money in that. They are getting paid to find big expensive drugs to cure it.

(Actually I am quite ignorant about it...but am cynical about pharmaceutical companies and paid research because as an educated natural therapist, I see so much abuse of power and conflict of interest in that world, when potentially they could do much more good than they do- but they are money oriented).

 

Then I would pray, trust my intuition, listen for inner guidance, and follow that, too....

Basically, I would explore ALL my options, including doing nothing, and then trust my gut feeling about what to do.

I dont give up my power to modern medicine very easily.