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Thread: Prophylactic Mastectomy

  1. #1
    Yekhefah
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    Prophylactic Mastectomy

    I was talking with my mom (a nurse) yesterday...

    I've had two doctors in the past say I am a good candidate for prophylactic mastectomy, and my mom's doctor friend just told her the same thing. We had a long talk about it and I'm considering it one day in the future. I'd probably be covered under insurance or Medicaid. It's just an awfully huge deal to consider.

    Basically, my risk of breast cancer is so high that these doctors think it would be safer to just remove my breasts now before they pose a problem. Since I don't already have cancer, they wouldn't have to heal first and they could do implants at the same time. So basically they'd put me to sleep, take out my breasts, and replace them with fakes.

    I don't know whether this is something I should really be considering. I mean, yeah, cancer and all... but cutting off my breasts! I love my breasts. And it's stupid, but the main question is would I still have nipple sensitivity and everything? I didn't want to ask my mom that!

    I'm not going to do it right away but I've been kicking the idea around for a couple of years and it just came up again, and my mom really thinks I should do it. I'm just terrified of being put to sleep and there's something about the idea of having my breasts removed that horrifies me, even if they do implants at the same time. And then there's the upkeep on the implants and all THOSE associated health risks...

    What do y'all think? Comments? Does anyone know anyone who has done this?

  2. #2
    Veteran Member Krissy Kennedy's Avatar
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    Default Re: Prophylactic Mastectomy

    There was an episode of Dr. 90210 where a young girl opted to do this because of the high incidence of breast cancer in her family. It wasn't on that long ago...I'll see if I can find a link to it.
    Si hoc non legere potes tu asinus es



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    Featured Member Hello_Kitty27's Avatar
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    Default Re: Prophylactic Mastectomy

    I have no experience with this, but it would be better to take care of it before you end up with breast cancer. I mean, I know a lot of people who have started off with one type of cancer and goes into another part of the body and into another part and so on. If you're really high risk, I'd do it sooner than later.






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  4. #4
    aussiepunkshocker
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    Default Re: Prophylactic Mastectomy

    Do A LOT of thinking and research about this. I know you're not totally into alternatives, and you probably know what I think about Drs, but I definatly think it would be worth your while to look into some alternatve breast cancer information resorces and information before considering having your boobies chopped. Not to mention implant complications for mascectomy patients. (Much higher risk of post surgery complications - I think the rate is about 75%, will try to look that up.)
    I dont for a minute buy what they said to you. I dont expect anyone else to be with me here, but Im saying it anyway (-:
    Last edited by aussiepunkshocker; 12-28-2006 at 07:13 PM. Reason: To add...

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    God/dess Nautilus's Avatar
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    Default Re: Prophylactic Mastectomy

    a doctor once told me it can 'significantly reduce' your odds of getting breast cancer, but it doesn't remove the risk altogether. you still have lymph nodes in the arm pit...

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    Default Re: Prophylactic Mastectomy

    My friend had both ovaries removed for the same reason @ age 27. Her family are ashkenazi jews, and every her mom, sister, and 2 aunts were all diagnosed (of which 3 died of the disease). The peace of mind she got from the procedure was, in her opinion, worth their weight and platinum and than more.

    I think if you have a very strong genetic predisposition, it's worth looking into. If you're looking for anecdotal experience, join some breast cancer forums and talk to women there. They have first hand experience, and would be able to give you more useful advice.

    I know that a nurse at the local PP has had prophylactic masectomy done. Next time I drop by, I'll be sure to talk to her.

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    Default Re: Prophylactic Mastectomy

    By the way, i'm guessing you've had genetic tests done to see if you carry certain markers that predispose you to breast cancer. If you haven't, I highly suggest getting them done before you think further on the issue. I know a co-worker once considered it, and she didn't have hers done because she does not have any genetic markers (while her mother and sister, both breast cancer survivors, did).

  8. #8
    Yekhefah
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    Default Re: Prophylactic Mastectomy

    APS, thanks for those links! A good different perspective.

    Thanks for the excellent points, y'all. Kittenkat, I'd forgotten they could do that genetic testing; how would I go about getting that done? I guess it costs a fortune. Maybe I better wait until I get insurance before I get that done - wouldn't want it to come up positive and then find myself uninsurable!

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    Default Re: Prophylactic Mastectomy

    ^^I've heard of people getting genetic marker testing done in Mexico for that reason.

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    Default Re: Prophylactic Mastectomy

    Good book:

    Breast Cancer? Breast Health! by Susan Weed



  11. #11
    Veteran Member boxingdoc's Avatar
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    Default Re: Prophylactic Mastectomy

    May I recommend a second, third, or even a fourth opinion as you are doing your research? More information is always better when making such a dramatic, life affecting decision. Make sure you go outside the hospital network used by the first doctor. There are lots of different medical philosophies, and particular hospital systems with particular philosophies tend to attract like-minded physicians. If you haven't done so, also request genetic counselling. There are people specifically trained in this ( a clinical geneticist or a genetic counselor), and you may have to go to a big university hospital to get it. If you are in LA, UCLA would be an excellent place to start. Good luck in your decision.

  12. #12
    Yekhefah
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    Default Re: Prophylactic Mastectomy

    Thanks, y'all!

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    Default Re: Prophylactic Mastectomy

    I would poke into breast cancer survivor gatherings/meetings online and in RL to get referrals of doctors. Those that have gone through with the disease can often give you a better referral of docs than people that have not.

    http://www.nci.nih.gov/cancertopics/...an-Cancer-Risk
    ^^ another info re: Breast cancer genetic testing, including a hotline number you can call.

    some local breast cancer support groups:
    Sisters Breast Cancer Survivors Network
    116 W 84th pl
    Los Angeles, CA 90003
    (323) 759-0200

    Los Angeles Breast Cancer Alliance
    http://www.labca.org/

    One of the most important things about taking care of your health is to take control of it. DO NOT expect the doctor to always know everything. Most do not. Do not be afraid to ask questions and pry- your health and your life is on the line. doctors that won't answer your question and disregard your concerns need not be treating you. Over half of my prescriptions and treatments I ever received were something I asked for/suggested to the doc. I've had the misfortune of almost dying twice due to doctors making bad decisions as a young woman and that has really helped me in that I've started to do my own research and my health has improved as a result. I would not have the opportunity to receive many beneficial treatments or medications if I didn't push for them from the beginning. You do not have to be a doctor to research. Doctors are human, and they make a suggestion based on their personal experience and knowledge base just like the rest of us. That means doctors are human and don't always make the best decisions for you, because they're not YOU. So many doctors are busy with the actual practice that a good portion do not keep up on the latest research. One of the benefits of joining a group is that a lot of women are very keen on the latest research and can give you a lot of information that you can research yourself and bring up with your doc.

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    Default Re: Prophylactic Mastectomy

    I've been considering this since a teenager because breast cancer incidence is high in both men and women on both sides of my family (men!). It used to be considered the way to go, but more recent stuff I've read makes it sound ineffective-to-damaging...I'll have a look-see for the articles when I've got a moment. Remind me if I forget!

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    Default Re: Prophylactic Mastectomy

    I'd forgotten they could do that genetic testing; how would I go about getting that done? I guess it costs a fortune.
    Myriad of Salt Lake City...fuckers. Haven't looked into it for awhile, maybe something's changed, but as of a few years ago they held the patent on BRCA 1 and 2 , and thus only they could test for their presence. How fucked up is that? Since when can genes be patented??

    I think it's $1300-1500 ish for genetic screening.

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    God/dess sxybrat07's Avatar
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    Default Re: Prophylactic Mastectomy

    Quote Originally Posted by scarlett_vancouver View Post
    Myriad of Salt Lake City...fuckers. Haven't looked into it for awhile, maybe something's changed, but as of a few years ago they held the patent on BRCA 1 and 2 , and thus only they could test for their presence. How fucked up is that? Since when can genes be patented??

    I think it's $1300-1500 ish for genetic screening.
    Wow that is fucked up. If anyone comes down here though you can stay with me!

    Ok back on topic...I haven't heard much about it Yek, but I agree with the others, get alot of different opinions. And, if you can get the genetic screening, it's probably well worth it.
    I believe you Dottie and you have my support

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    Default Re: Prophylactic Mastectomy

    Personally, I would NOT consider prophylactic masectomy WITHOUT genetic testing. That's just my .00000000000000002 cents.

    Prophylactic mastectomy can be offered to high-risk women, including Stage I and Stage II BRCA1 and BRCA2 gene mutation carriers and women with lobular carcinoma in situ. This bilateral mastectomy removes the nipple and 90 percent of the breast tissue but not the axillary lymph nodes. Reconstruction can then be performed.
    http://www.aafp.org/afp/20021215/2271.html

    Now, my understanding is that the lymph nodes are not removed for prophylactic masectomy because cancer is defined by the cancer of origin. For example, if you have breast cancer that spreads to the lymph nodes, you do not have breast cancer and lymphoma- you have breast cancer that has spread. Therefore, the lymph nodes are not removed as they are only at risk for becoming cancerous as a route of metastis for the breast cancer, not on its own (unless you also have lymphoma risks).

  18. #18
    Yekhefah
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    Default Re: Prophylactic Mastectomy

    Really helpful info, guys. Thanks so much.

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