Prophylactic oophorectomy and/or bilat mastectomy?

cass34

Based on an extensive maternal family history, I am considering a prophylactic oophorectomy and/or a bilateral mastectomy. I do not have breast cancer, my Mother is BRCA negative. I am pre-menopausal, and do not want any more natural children. I am screened annually by mammogram and MRI. The ooph would put me in surgical menopause. If I choose the bilat mastectomy, I will have reconstruction from my own tissues. I am healthy and young (guessing about 10 years before completed menopause) with a wonderful, supportive family.

It is clear that there is a genetic component to the cancer in my Mother's family, but it has not been identified. The tumors are estrogen-fed. I will not take bcp's, and I do not plan on HRT, whatever course I choose.

I am looking for information based on personal experience with surgical menopause, as well as the actual surgeries. I am struggling with the time-frame as to when I need to make this decision and when to have one or both surgeries. Any reminders about what questions I need to ask my docs and surgeons would also be great. I am anxious to do what I can to prevent this disease.

LisaAlissa

I don't have info on what you're looking for, but suspect others will be along...

You might also want to check out a website called ""FORCE: Facing Our Risk of Cancer Empowered" which will tend to have others considering the same decisions you are...

HTH,

LisaAlissa

cindiedee

Cass34 - I just had PBM with SGAP recon in SC the end of May and I am 55 - they used my butt cheeks to make 2 new "breasts" - my GrtGrandma, Mom and sister all had BC - my Mom died of BC mets 2 years ago. I believe that the only reason my sister is alive is because she had a BM/implants at age 39 when she had a 3rd recurrence of BC. I am 55 and will have genetic testing Aug. 7th - I wanted my surgery done first as even if I am negative, I was still having this surgery done. There is clearly some family thing going on whether or not it is BRCA. I had a complete hysterectomy when I was 22 years old, so having an oopherectomy was something that was behind me. My PBM/SGAP was an 11 hour long surgery and 3 days in the hospital - another week in a hotel, then back home (I live in SFL) Now, I have had some bad complications (My left butt cheek dehisced - basically ruptured open at 3 weeks postop). I had to spend another week in the hospital here and have been on a wound vac for 6 weeks - but the large hole has almost closed and I should be off the wound vac within 3-4 more weeks. I will then go back to SC for breast recontouring, new nipples, and lipo. Even with the complications, I DO NOT regret having this done, I only regret having the complications. This is a very personal decision whether or not to have this surgery done - my adult daughter is horrified that I did this, son not so much but he is in the health field so he looks at this from a clinical point of view. Some people tell me how brave I am (not) and some people think I have done "self mutilation" - they are the ones who have never lived with BC. My mom had BC mets and she actually died in our house with us taking care of her - it was a pretty ugly death and BC is an ugly disease - and for me, it was when would it strike me, not if. Take your time and do lots of research before your make a decision -try www.facingourrisk.org (FORCE) - you will find sooooo much information there. Best of luck making your decisions and I hope you come to be at peace with your decision - then you will know it is the right one. Blessings, Cindie

Anonymous

cass--I cannot speak about the BPMs as I have not had them, but I can understand how you feel, as I am very high risk from the combination of LCIS and family history (and may be facing them myself someday). I am very closely monitored with mammos and MRIs alternating every months, BSEs, CBEs, and have been taking tamoxifen as a preventative for almost 4 years. I have not been genetically tested yet, oncologist feels I'm pretty low risk for BRCA. But I can speak to the immediate surgical menopause. (I had to have a total abdominal hysterectomy 2 years ago due to rupture of large ovarian cysts.) I had been having mild SEs from the tamox (hot flashes, insomnia, achiness) which all significantly increased after the loss of the ovaries, but while annoying, are still manageable. Some changes I noticed right away, most others came on gradually over 3 or 4 months time. I had already had my children and I was nearing the age of natural menopause anyway (almost 48), but it still was a difficult decision to make.(I had no choice about the one ovary, but decided to let him take both (and uterus, cervix, and tubes) as I didn't want to chance going thru it again; and he was suspicious of ovarian cancer at the time, but fortunately everything turned out benign). I was in the hospital 2 nights and 3 days and out of work for 8 weeks, but if you have the ovaries removed laproscopically, it is a much shorter and easier recovery. (I think just overnight, then about 2 weeks home). Good Luck with your decisions,

hi5-2006Aug13

cass: I tested postive for the brca gene and will be having an ooph and hyster in September. ( I was dx'ed with bc in May 2006 and had bilateral mast.) My daughter was also tested and has the gene as well. The clinician at the hereditary clinic said that if the mother does NOT have the gene she cannot pass it down to her children and if she has the gene there is a 50-50 chance of children getting it.

leaf

Quote:

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The clinician at the hereditary clinic said that if the mother does NOT have the gene she cannot pass it down to her children and if she has the gene there is a 50-50 chance of children getting it.

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If I understand things correctly, this is very true - if a mother does not have the BRCA mutation, *she* cannot in a hereditary sense pass it on to her children. The BRCA gene mutations are consistent with being an autosomal dominant gene mutation - which means a person can get the condition if they inherit one copy of the mutation in one copy of the gene.

However, if I understand it right, her children CAN inherit the BRCA gene mutation from their father *if* their father has the gene mutation. They don't have to inherit it from their mother.

Autosomal Dominant Inheritance of Breast/Ovarian Cancer Predisposition
Autosomal dominant inheritance of breast/ovarian cancer is characterized by transmission of cancer predisposition from generation to generation, through either the mother’s or the father’s side of the family, with the following characteristics:

Inheritance risk of 50%. When a parent carries an autosomal dominant genetic predisposition, each child has a 50:50 chance of inheriting the predisposition. Although the risk of inheriting the predisposition is 50%, not everyone with the predisposition will develop cancer because of incomplete penetrance and/or gender-restricted or gender-related expression.


Both males and females can inherit and transmit an autosomal dominant cancer predisposition. A male who inherits a cancer predisposition and shows no evidence of it can still pass the altered gene on to his sons and daughters.

http://www.cancer.gov/cancertopics/pdq/genetics/breast-and-ovarian/healthprofessional

MargaretB

Cass, I can only tell you my experience. I had a bilateral with immediate free tram reconstruction. I chose the bilateral even though cancer was discovered in my right breast for several reasons: 1) high family history with mom and sister both having BC within 5 years of each other; 2) I would have had to have a reduction on the left side so I chose the bilateral with tram; 3) I wanted to be able to move beyond having cancer and get on with living my life. The final decision maker was when the tumor board told me that they had seen some calcifications on my left breast but they weren't concerned about them at this time. That confirmed my decision. Beth1225 had a prophylactic bilateral for the same reasons you are considering it. Send her a PM and I'm sure she would respond.

Margaret

bisous3

I am BRCA 2+ and had prophylactic mastectomy and reconstruction (Alloderm one step, non-expander with immediate implant placement). Cosmetically, for me, since I did nipple and skin sparing it was actually an improvement!
I agree with LisaAlissa- if you come read at facingourrisk.org you will find many women who have undergone this procedure, both BCRA + and BRCA - women with strong family histories.

hi5-2006Aug13

Did anyone actually have a ooph/hyster? I am scheduled for the surgery Sept. 11 and am just wondering what to expect. My daughter will also have an ooph since she has the gene...there is a high risk screening clinic in Vancouver for those who have the gene so she will be thoroughly checked twice a year: mammo's and mri's.....
Anyways looking forward to hearing back.

MsSherry

I am leaning towards having both. Am awaiting test results but regardless of + or - my family history is so bad I was told both are options for me. I am not sure though if insurane will pay so that will be something to look at. I have some lumps now that need to be looked at also.

lvtwoqlt

My mom is 6 yr survivor and her sis died 1978 with ovarian cancer. I had a bi-lat mast June 1 and the surgeon talked about the ooph/hyster but at 46 he was more concerned about my bone density decreasing with the loss of estrogen. Suggested bi-yearly ovary/uterine ultrasounds to look for ovary problems as well as CA125 blood test annually.
Sheila

bisous3

The problem lies in the fact that there is really no good screening for ovarian cancer. Often by the time there is a rise in the CA 125 or if something shows up in a transvaginal ultrasound it is somtimes too late. This is why many genetic counselors advise removal of the ovaries for BRCA + women. If you ALSO have a prophylactic mastectomy you can take HRT and have even more HRT options if you are willing to go hysterectomy (removal of the uterus AND ovaries)

GreenHeron

Hi:

I had the ooph, and it was not a bad recovery. I was lucky not to have shoulder pain later (any air trapped in the surgery in your body raises up to your shoulder for awhile....
The recovery for the ooph was much easier than I'd thought. The only trouble was laughing really hard, sneezing, and geting from a flat on my back position to sitting up (I perfected a roll to the side method...no style points, but hey.) Truly, not bad at all. ONly three small scars, which fade nicely.

Hope this helps, PM me any questions if you have them...

Flashdif

Traci-----TripNeg

I was dx with trip neg cancer in my right breast in 2/07. Stage II. I had a bilat mast and as soon as my body recovers from chemo, last treatment 8/16, I will have a full blown hysterectomy as I am also BRCA 1 +.
Stay tough girls.
Traci

Indigoblue

This topic is one of concern and there are so many variable opinions regarding the coincidence of breast cancer and family history, even if there is no BRCA gene present. New genetic indicators are being researched, and many have been discovered in p53, etc.

I used to think maybe everyone should have this surgery done, since it seems to not matter if a gene is found, anyway. Many women with b.c. have no family history.

I keep thinking I should have had it all taken off, out, gone. Surgeon said insurance wouldn't pay, anyway, and that it would be painful and extreme for the Stage and size tumor. Recently met a mammo tech who said she had no genetic markers, but her mother died at 54 from bc. When the mammo tech found her lump 1.5 cm, she never blinked. She had the bilat and the ooph (ironically by the same surgeon as myself).

She sees more b.c. than most, so now I am truly doubting the choice I made to have partial mast. Oh well.

Indi