prophylactic mastectomy help!!!

Don't panic at this point. I know a lot of people who have had many biopsies, all neg. What is your family history? I have had a bilat mast myself and do not regret the decision. But there were several things that led me to this action. I suggest you see a genetic counsellor and ask their advice before you act.



Take Care

Hi Heather, good advice from Pip above, you don't have to rush in making this decision.

I have also had a bilat, I just did not want to be lop-sided, and managed to get a decent surgeon who worked with me.

I had my bilat 5 years ago, and do not regret this at all. You are a lot younger than me, so will probably consider reconstruction....there again no great rush.

Don't worry you are posting on the wrong boards, none of the boards are 'wrong', just sometimes you'll get a lot better response  on a thread thats chatting about the subject you want to know about.

There are conversations for you younger girls, but if I start to look for them to direct you I am sure to lose this post....just have a long look around, and jump in among the younger girls, a lot of whom have small children,just as you do, and you'll soon get advice from girls who are going thru the same thing as you are.

Joining this community will be one of the best things you have ever done. Help and advice is freely given, and there is always someone who can help you, no matter how odd you think your question is.

Friends and relatives very soon get fed up of your worrys, they just don't seem to realise how this affects us, but here we all know how it is, we all 'get' it and are here for one another, no matter what.

Welcome, and keep on posting.

Isabella. 

Heather the good news is, even if you DO have the BRCA mutation, simply by having a hysterectomy you have significantly reduced your risk for breast cancer. The other good news is last month President Bush signed the GINA bill...its the bill that keeps insurance companies from using the results of genetic tests as a reason to not insure you.



I would still visit that certified genetics counselor though. They can really educate you about BRCA testing.

If you were positive, you could increase your surveillance or you could opt for the preventative mastectomy.



I had BRCA testing done last year. I was BRCA 2 +. I had a preventitive bilateral mastectomy - the Alloderm One Step ( skin and nipple sparing with immediate implant placement - no expanders). It was very do-able and I am finally at ease after always living in fear that I'd end up with breast cancer.



Check out FORCE

www.facingourrisk.org A great website for high risk women.

Best of luck!

Heather,



I did not have recon and am quite happy about it. But I am 51 and my breasts were not that important to me. I can understand the roller coaster you are on between biopsies and surgeries, but I would still suggest you see a genetic counsellor. There are things other than BRCA that they can test for and your history would tell them what is most likely. On the 17th I am getting results from my p53 gene test and if it is positive and I hadn't already had bilat mast, I would certainly be thinking about it.



The thing is, I believe it is all a crapshoot anyways. There are no guarantees. I think it is a matter of doing what you can comfortably live with. You don't want to look back and have regrets, one way or the other.



Take Care

Heather, I had ovarian cancer 5 1/2 years ago and had genetic testing at that time, along with my two sisters; family history of both breast and ovarian.  So we are BRCA1.  I had a complete hysterectomy at the time, followed by chemo and radiation.

I wish someone had told me I should have a double mast.  No one did and I went along being followed at a high risk breast clinic and ended up with breast cancer in the Fall. At that time they recommended a bilat mast which I did after completing chemo.

I think that knowledge is power and the place to start is genetic testing.  I too, like some of the other ladies, am older (55) and not having breasts (surprisingly to me) is not bothering me although I am planning reconstruction in two years (my doctor's timeline; not mine).

Good luck.

Barbara

I can't believe I have found you all!  What a relief.   I'm 55, BC survivor (lumpectomy, chemo, radiation, finished last Oct).  Just got my genetics result of BRACA1.  Rats.  I was hoping to put last year behind me and not have to think about cancer ever again.  (I know...fat chance once you've had it.) I've been talking with a lot of people, reading on-line.  Have 2 doctor appts. this next week, ob-gyn and surgeon.  I'll definitely have ovaries/tubes and uterus out.  Don't need those...have my wonderful kids and am through menopause.  But what to do about the breasts!!??  I'm finally happy with the way I look...for years the ex husband made me feel too small....and now this.  But I don't know if I can cope with the every-6-months mammogram/MRI routine.  I'm a worrier.  I'm leaning towards total removal with no reconstruction now.  I'm not comfortable with the idea of putting a pair of foreign objects in there when I'm trying so hard to keep foreign objects out of my body!  Any thoughts, ladies?  Bless you all for the support you're giving.  We are indeed sisters.  I'm continually amazed by the wonderful women I've met through a chance remark in a store or at work.

Dear Stronger D, if you opt for recon you can use your own tissue.  This is a much more difficult surgery than using saline or silicone implants (I'm told by my friend who is a recovery room nurse) but takes care of the foreign object dilemma.

I, like you, have been very happy with my breasts of late.  I was always thin as a younger woman and was small chested.  It was sad to lose the girls but so worth it in the grand scheme of things and hopefully I'll have recon in two years.  I have a consultation in August as my first step.

So good luck to you in whatever you decide to do.

hello heather. im new to the discussion groups, not bc.org.

as i read alot of these brave woman who underwent dble mast. 4 preventative reasons. as difficult as it is.....i believe they r right. its a very difficult decision. but if u can drastically reduce getting cancer, it outweighs not doing it. u wouldnt want 2 go thru the whole treatment and all. Im 4 preventative measures. best wishes.

hello heather. im new to the discussion groups, not bc.org.

as i read alot of these brave woman who underwent dble mast. 4 preventative reasons. as difficult as it is.....i believe they r right. its a very difficult decision. but if u can drastically reduce getting cancer, it outweighs not doing it. u wouldnt want 2 go thru the whole treatment and all. Im 4 preventative measures. best wishes.

Hi Heather,

I will keep you in my prayers on Thurs.  You are the first person I have read on any of the sites that has RA.  Did the drs. say anything to you about having rad and RA?  I ended up having the rt. mast in '06 and will again this summer for the lft breast mainly because I was told that the rad after the lumpctmy could cause problems with my RA.  I wanted no part of that.  I chose to have recon when I had the mast and again, did not use the implants because of the high rejection factor because of the RA.  I had DIEP recon using my own tummy fat, no muscle was involved.  I would think that would be a factor with someone with small children like you have.  Recon with the TRAM takes your tummy muscle.  In hindsight, when offered the option of taking the left when they did the right, I should have said "yes" because they threw away the whole opposite side of tissue when they used only the one side for the right breast mast.  Now they will be using the muscle on the inside of my thigh.

My genetic testing ended up negative, even with all the cancer in my family.  I don't understand how but that's what came out.  I was told that colon, breast, ovarian and pancreatic are all linked thru the BRAC genes.  I have breast, my mother died of bc, sister survivor of colon, father died of pancreatic, his mother & sister died of ovarian.  I was told it was 'all random'.  At least with both breasts gone, that will not be an issue any longer.

Good luck on Thursday.

Sunkist in MI

Hello Heather:

I feel your anxiety. In October 1999 I had a hysterectomy due to endometriosis and the left ovary and tube were left in to produce hormones. In January 2008 I was diagnosed with infiltrating ductal carcinoma in the left breast with lymph node carcinoma in the left axilla. I had a lumpectomy and the affected lymph nodes removed the same month. Between January and March I had several CT, Ultrasound, and MRI's done to see if any mets had taken place.  The results were negative for mets although the cancer had spread to lymph nodes in the center of my chest and up into my neck on my left side.  Because my mother died of breast cancer (both breast were removed but not at the same time, she also had uterine cancer) at age 33 in 1974, I had the BRCA tests done.  I tested positive for the BRCA1 gene in late April 2008.  I am 44 years old. I decided to have the prophylatic surgery (right breast and sole ovary removed). I did not do the recon because my doctor said it would be too much surgery for me due to my large breasts.  The surgery took place May 27 and on May 31 I received results that my ovary and tube contained cancer that was not spread by the breast cancer.  The cancer is ovarian cancer. I am glad I did the prophylactic surgery because I would never had known about the ovarian cancer if I hadn't.  I have undergone 4 rounds of chemo to address the breast cancer and was supposed to undergo 4 more rounds after the mastectomy, but now I have to undergo surgery to stage the ovarian cancer although the ovary and tube were removed, it could have spread. I will undergo chemo eventually to address both breast and ovarian cancer.

I did the prophylactic surgery because after everything I went through with my first dx of breast cancer, I would not want to repeat. Having the BRCA1 or BRCA2 gene puts you at high risk for recurrence or metastisis. The surgery was piece of mind for me and I  believe it will be for you as well Heather.

God bless!!!