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Prophylactic mastectomy... do you know anything about this?

Posted by meredith_e 7B Piedmont NC (My Page) on
Thu, Jun 28, 07 at 20:30

Does anyone know anyone who has had this procedure or any groups I could contact to find someone who has? I'm still in the chemo support circuit but don't know of groups that include pre-cancer issues at all.

I just read some studies and it can cut the chances of BC for women with one of two genetic markers by 95%. OTOH, in the control group, OVER HALF the women got breast cancer.

My Mom had the marker. I don't know about my cousin or my Aunt but every woman in that family got a reproductive cancer. My cousin died of BC before she was 44, but my aunt is still kicking, and running a nudist colony no less, at the ripe age of 77, lol. Mom got HER2 positive BC at 44.

I thought it was for the extreme few, but apparently this surgery is really being done now.

Any idea if insurance covers something like this [any insurance folks here?]

And while my mind is on this, I want to add that I had a beef with gynocologists for years about not caring whether I was on estrogen, etc or not. At the magic age of almost-37, now suddenly doctors are all over me about the hormones I take for endometriosis and for how long, how many years I used the pill, etc.

How frustrating that it 'didn't matter' 5 years ago, but now what I did 5 years ago matters. I was researching it then, because of what I learned about Mom's cancer and estrogen. But be careful out there, y'all and your daughters!

Even my family history didn't make local gynos think really carefully while I was under 35 [I just refused to take estrogen at all]... but aged 34 or 36, I feel the caution should be there regarding hormones, at least for those with a scary family history.


Follow-Up Postings:

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RE: Prophylactic mastectomy... do you know anything about this?

  • Posted by roselvr Burlington Coun (My Page) on
    Fri, Jun 29, 07 at 6:58

Yes Mere, I know someone that had both removed and hasn't looked back. Last time I spoke to her; after my dad was sick, she was still doing great. Had to be about 10 years ago, maybe more since she had it done.

I'm pretty sure her insurance paid for it. I know they also sent her to counseling after the surgery, in order to get the insurance co to pay for the reconstruction; they did. She proved that not having breasts would be emotionally draining.

She loves her new boobs. I ran into her when dad 1st got sick (she works at the cancer hospital) and asked if she still loved them, she said yes. She wanted to get butterflies tattoo'd on them but so far she hasn't. I'd have to say she is in her late 50's, maybe early 60's.

From what I last heard, her daughter was being watched. I don't think the daughter was done having children.

Breast Cancer Risk Assessment Tool - you've probably taken this, but if you haven't I would start there.

Not sure if you've gotten copies of Cure Magazine, web site below. Put the term in the search box, check out some of the articles that come up. The 4th article eluding cancer - click on cached to read it. There is a lot of information in the mag. When I used to read it, there seemed to always be something on breast cancer. They talked about some fo the clinical trials that went on.

Here is a link that might be useful: Cure Magazine


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RE: Prophylactic mastectomy... do you know anything about this?

I can't address your questions but would like to issue a warning or word of advice to any woman being examined for possible cancer in one breast. Have BOTH breasts scanned. It's all too common in my circle of friends that the "healthy" breast is actually the most infected with cancer. That certainly was true in my case. You can have two kinds of bc with only one being symptomatic. If your doctor gives you any grief about it get a second opinion. I had to fire my first surgeon in order to get the kind of treatment I needed. As things turned out it was a good thing I did.

If you go ahead with this talk to your surgeon about applying compression bandages and ice packs right after the surgery, and for weeks afterward. It cuts down on the adhesions you will develop, and you WILL develop adhesions. When a surgeon removes tissue blood seeps into the wound area and becomes like glue, glueing skin to muscle and, as in my case, muscle to bone. This causes discomfort when you move and can even limit your range of motion.

Whatever you decide, I wish you the very best. Life without boobs isn't so bad and not wearing a bra is great!

Linda


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RE: Prophylactic mastectomy... do you know anything about this?

Meredith, I am missing something here because I was not aware that you are having problems.

I know a woman who had bc about 20 years ago, and she said that the lab results indicated that it was the kind of cancer that the other breast would get also. So she had the second one removed.

My beautician had both breasts removed, then had a "genetic" test since her mother died of ovarian cancer. The genetic test indicated that she would sooner or later get either ovarian or uterine cancer so she had a hysterectomy. I don't remember what exactly was removed.
Sammy


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RE: Prophylactic mastectomy... do you know anything about this?

Sammy, I'm not having problems, really, I promise.

I just had a recent scare that statistically means little but unfortunately is another risk factor for breast cancer to add to my stash :( My mom had 'fibroids' first, and so did a lady I was speaking to at the surgeons office who has BC, and it just shook me into looking into things. I grew other benign tumors since adolescence in different places, most hormonally influenced, and that's not a good sign either.

Sure enough, the benefit of this surgery sounds amazing to those with the genetic markers. It slashes the odds of getting it, and the odds are pretty grim. I've been putting off genetic testing, but now I see an upside to it.

Linda! So good to hear from you! Ugh, it's such a big surgery, really... thank you for the adhesion tips. Otherwise, I'm not really a boob girl, lol. Give me a good padded bra and I'm good to go! Oh, I'd get new ones and that's kind of a funny thought... me with fresh new ones at my age or older, bwaha. My mom had a great surgeon who is still around.

I'd plan it out because of all the recuperation but it's so good to know that this is a viable option. Such a big scary surgery but many women have done it for various reasons and that gives me courage. Best wishes to you, too!

I still go back to the surgeon to have the fibroadenoma removed, and I am going to ask about an ultrasound of the other breast for good measure.

Sue, thank you so much for those links. I'm so glad you know someone who did it, too. To never look back would be amazing, with our family history. Of course, I need to stop smoking... I've got the exercise and granola girl part covered already.

Stop smoking stop smoking stop smoking... just put that in every post for everyone and me, eh?

Yeah, the female plumbing will most definitely be yanked at some point [I have endometriosis badly anyway] but I'm waiting till closer to menopause because of hormone concerns RE osteoporosis and heart health. The studies showed that removing the ovaries is particularly helpful, possibly also preventing BC and certainly ovarian cancer.

The majority of my relatives who have/had it are doing great, actually... Mom even got 19+ years instead of 3-6 mos. Still, to prevent it is gold.


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RE: Prophylactic mastectomy... do you know anything about this?

Stop smoking today. Carry an open pack around with you to let you know that you can smoke so you won't be going to the store at all hours of the day, but stop - right now, Meredith, no more. I did it, and so can you. You have 2 weeks of withdrawl that are quite unpleasant, but you can do it. Then you have 2 months that are also unpleasant and irritating because you thought it wouldn't last this long. Then if you are like me, when you lie down for the next 6 months, you will cough. (There are meds for this.)

None of us have good cells to give to nicotine. We need all of our good cells to work for us. Stop today.

When my beautician had her mastectomy, she had cancer in both breasts. She was about 44 years old, and had to have very invasive chemo so they did the reconstructive surgery at the same time. In your case it might be easier since they are not working around cancer.

Is there a difference between having ovaries of your own or taking HRT?

Good luck.
Sammy


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RE: Prophylactic mastectomy... do you know anything about this?

Agreed. Stop smoking. I clean my grandma's tracheostomy twice a day, every day. It really does matter when you quit, it really does help to stop creating scarring in your lungs sooner than later. If she had smoked longer, I would likely have to suction out her bronchi twice a day or more, too, just to keep her from suffocating from fluid in the lungs. I have been with her twice at the ER when she was very near suffocation. It's horrible. You don't want to go there, girl.

Stop smoking, buy more roses.

Cheers,
Michelle


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RE: Prophylactic mastectomy... do you know anything about this?

Meredith: I've considered having it done if there was ever any hint of BC. I've been overly blessed to begin with and with added weight it just makes it worse. My size alone gives me a higher risk. I took myself off the pill, the thought of adding hormones into the mix long term gave me the heebie-jeebies. I'm supposed to do my first mammogram this year and I'm not looking forward to it.

I don't really have much medical history to look at. I know my biological family's medical history as of the second I was born, but that's about it.

Cute side story: I was changing clothes the other day in front of a friend's 3 year old granddaughter. Nana is quite a bit smaller up top and her mother's are non-existent, so when she saw mine her eyes got as big as saucers and said, "they are so long." I had to laugh. And then I immediately wished for fake boobs :) I hear they don't sag!

Lisa


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RE: Prophylactic mastectomy... do you know anything about this?

Sammy, well I ordered this and that and will be absolutely cig free by Jan 1st! That may sound long, but cold turkey SO doesn't work for me... so I am tapering with TOOLS and I WILL DO IT, darnit.

6 mos sounds short when I know it's never again. I've never even set a date before, I'm so darned hooked on nicotine. I tried the patches, etc before but this will be different :)

The ovary thing? Yeah, unfortunately modern medicine isn't so great at mimicking a woman's natural hormones for various reasons, and HRT is scary for those worried about hormonal cancers because you have to add 'exogenous hormones.' I don't know if my own ovaries know what they are doing, but I know that adding EH should be done as a last resort. It's a risk-benefit thing, though.

Michelle, thank you. I'll keep repeating "I clean my grandma's tracheostomy twice a day, every day" Wow.

Lisa, LOL at your story! Ironically, I push for the natural look and think too many women get fake boobs. Well, if mine end up perky I guess that's just a perk ;] This was my first mammogram, too... and the Cancer Center was freaked that I hadn't had one earlier with my history. Insurance still won't pay for it, lol. Good luck [it didn't hurt at all for me] and don't worry. I think it's great that doctors are letting women do this if it seems best.

It'd be next winter earliest... just thinking and researching at this point...


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RE: Prophylactic mastectomy... do you know anything about this?

  • Posted by roselvr Burlington Coun (My Page) on
    Sat, Jun 30, 07 at 13:52

Lisa, there's sites you can sign up at if you want to try to find your family. While you may not want real contact, for medical purposes, it may be worth it. If you need URL's you can send me an email from my member page. We found my brother a few years ago..

Mere, I'm hooked on Marlboros. I quit twice when I went in for surgery but started again as soon as I left the hospital. I swear the stress of the hospital was enough to get me smoking again. Problem is I am not emotionally ready to give them up.


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RE: Prophylactic mastectomy... do you know anything about this?

We are all so different, and I was lucky that my husband also quit. I was also lucky that I could control my environment, and avoid smokers.

Before I quit smoking, I gave up the cigarettes I enjoyed the most, and I gave thought to smoking traditions and gave them up. A smoking tradition would be to have a cigarette right after dinner. I created a walk as my new after dinner tradition.

This was all about 35 years ago, and I won't go on and on, but I have no regrets.

Sammy


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RE: Prophylactic mastectomy... do you know anything about this?

I think if I could quit at all I wouldn't dare pick one up again... if I could go a week. I know the rest will be hard, but to get them unglued from my hand first...

Sammy, that's part of why it'll be 6 mos [max] is to give up parts like you say first. Since England will be so different, I am planning on going on Stage 1 and nothing worse starting then. From there, stricter and stricter.

I get physical nic fits like nobody's business.

Sue, look up Chantix. I'm going to try it!!! I was seriously waiting for a nicotine-receptor based med. Or couldn't take Welbutrin, etc, in any case.


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RE: Prophylactic mastectomy... do you know anything about this?

  • Posted by roselvr Burlington Coun (My Page) on
    Sun, Jul 1, 07 at 12:04

I'll keep it in mind when I decide to quit. Right now is not the time for me, house is for sale, tons of plants in pots, need to start looking for a place to live, plus some stuff got thrown in my lap having to do with my dad - which is highly stressful.

If you do decide to use it, keep us posted on how it's working.


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RE: Prophylactic mastectomy... do you know anything about this?

It is so true, you have to know when you are ready, and plan your method. Sounds like you have a great plan for you Meredith. I was a heavy smoker, had two before I got out of bed in the morning, ashamed to admit it. I knew I should quit, plus had TB when I was young, so I should not have been smoking and wheezing the way I was. After several different methods, some costly, I usually ended up being a closet smoker. Then I came to a point I knew I had to do it. It did not feel well any more and it was just coming into the time that you know longer smoked in peoples homes. We all did it at one time. I did it the best way for me, which was cold turkey and after 20 years I have not looked back, and like you Meridith, I picked my date and stuck with it. I know you have chosen a different method, but when you have made up your mind, then you will not look back. I never have. I did not even get the cough that some quitters get, I stopped coughing immediately. I feel really healthy and routinely walk as my excersise.

Good Luck M.
Pauline


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RE: Prophylactic mastectomy... do you know anything about this?

Thank you, Pauline! Yep, first thing is a cigarette, on the phone in bed as I plan my day with folks. Ughh! Recently I've started to have breakfast first and am able to do that! A little thing, but I'm going to keep collecting all the little things until I just don't smoke anymore!!!


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RE: Prophylactic mastectomy... do you know anything about this?

Back to the OT, Rene Syler, who used to co-anchor the CBS Early Show, underwent a prophylactic mastectomy early this year (she announced it right after CBS announced that they were releasing her from her contract). Both of her parents had been diagnozed with breast cancer. Here are some links with her story, From Oprah, From the Cancer Blog.


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