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BonusMom
12-28-2010, 09:45 AM
Has anyone here undergone testing for the breast/ovarian cancer gene aka BRCA 1/2? If so, what were your results and what did you decide to do as far as treatment?

I went to a new gyn after 28 years with the same one. After reading my history, she asked if I had ever considered BRCA testing. I told her that I'd never been asked. You see, my mother, comes from a family of eight girls, four of whom have had breast cancer, imcluding my mother (dx at 54-stage one). The youngest sister was just 36 when she was dx and then she had a reoccurrence 4 years later with a mastectomy (or should I say butcher? They did a horrible "reconstruction" job, but this was nearly 30 years ago). Anywho, I digress....

The doctor says we'd have to get ins co approval because it's a few thousand dollars, blah, blah, blah. By the end of the visit I agree for her to get the auth., thinking it'll take a few weeks due to the holidays.

Four days later the doctor's office calls with approval and next thing I know, I'm in getting my blood drawn. Now it's hit me. What would I do if the test were positive? After seeing my dad suffer from cancer I sure as heck don't want to go through that. I can tell you that I'd have a hysterectomy to rid myself of the migraines that I've had this past year that seem to be perimenopause related. But the BIG question.....preventive mastectomy with FOOBS with no sensation? Tamoxifen and annual MRIs? I'm losing two brush-fulls of hair per day as it is on Imuran and my thick blonde locks are now a thing of the past. And, quite frankly, I hate the thought of taking more meds in hopes of heading it off at the pass. I wouldn't want to undergo chemo/radiation (and hope it didn't spread) if I actually got cancer, after seeing what it did to my dad.

I'm not usually a worrier or "what if" kinda gal, but I really didn't have a chance to process this prior to going in for the test and now I'm wondering what I would do if the results are positive, as that's what you're advised to do PRIOR to having the test done.

With the Holidays, I won't be getting the results until my birthday, which I'd like to think is a positive sign.

Please share your thoughts and experiences. If you feel more comfortable, please PM me.

tgal
12-28-2010, 10:03 AM
Wow that is a tough position to be in! There is no question for me that if I had breast cancer I would have them chopped off. I had a hysterectomy 14 years ago and I felt much better for a very long time after that. What would I do if it was only a possibility? I don't know. I mean, I live with new things attacking my body every day and I get mad at the doctors for not being more pro-active. I feel like all they do is react to whatever part of my body is being attacked. Would I be able to be pro-active on something I didn't know for sure would even happen?

Wow, I feel for you! I am going to have to think on this one. That is a wonderful, thought provoking question although for you it is so much more then that.

I am going to cross my fingers that it will turn out well and you won't have to face this decision.

Saysusie
12-28-2010, 06:32 PM
I agree, that is a very tough question and so much to have to consider. This is not just a casual "What If?"..this is a life changing "What If?".
I know that there are so many advances in the treatment of cancer, and I know many people (including myself) who have survived many different forms of cancer (including breast cancer). But, to have to undergo so much in order to prevent something that may never happen; that is a very scary prospect and a decision that cannot be made in a matter of days. There is so much possible suffering on both ends..the disease and/or it's treatments.
At this point, I really cannot say what I would do. However, I do know that there is no way that I could make the decision by myself and I would have to consider what I want out of the remaining years of my life. There is sooooooo much to be considered. Take your time, talk it over with your loved-ones, consider every possibility and please know that we are here for you, whatever you decide. I wish you the very best!

Peace and Blessings
Namaste
Saysusie

magistramarla
01-04-2011, 11:32 PM
BonusMom,
You are in my thoughts, sweetie. As if you haven't had enough to deal with lately - just one more thing.
As the others said, this is a very, very tough and personal decision. I'm pretty attached to "the girls" and so is DH, so this would really be a tough call for me.
Just remember that you are a very beautiful lady, and that will never change, no matter what happens.
Hugs and love,
Marla

BonusMom
01-05-2011, 09:56 AM
Thanks ladies for your supportive words.

The twins and I have been breast friends (excuse the pun) since I was 12. I would never have a mastectomy without reconstructive surgery. My breasts don't define who I am, but let's face it, they make me feel like a woman.

Last Friday I was feeling very oh, I don't know exactly how to say it, perhaps "zen" about the situation.

I don't believe I will test positive for the BRCA gene.

I am going to email the aunts and cousins that I have email addresses for and advise them of the test results, whatever the outcome, as I think they should know. Understand that our family is definitely not close and not "open" about anything. When my mom asked her sisters, on my behalf, if they kept their ovaries following hysterectomies, only one responded.

I was asking because my doctor wanted to know about family history of ovarian cancer. Back in the day, they did hysterectomies on my aunts for any female issues. Well, if they don't have ovaries, then we wouldn't have an accurate risk factor for ovarian cancer now would we? Grrrrrrr

Definitely a don't ask, don't tell, policy.

My MIL had breast cancer at 60 and had a mastectomy and no reconstruction. She laughs about her prosthesis being lopsided, slipping down or other events. That's not me. Call me vain, but if faced with a mastectomy at any given time, I'm getting a new and improved set of perky twins. Afterall, my years of breastfeeding are behind me so I know these are aftermarket accessories and have no functional purpose, aside from cosmetic.

Anyway, I should have the results (optimistically-sp) tomorrow or the next day and this thread will be moot!

Saysusie
01-05-2011, 11:47 AM
I agree with you 100% on the reconstructive surgery following a mascetomy..even at my age, I would still do it and give myself some cute LITTLE perky friends (most of my life, I've been voluptuous and hated every moment of it..finally had that baggage cut down to a manageable size - LMAO!). So, I would keep them small and perky :-)

We will be waiting to hear your results and praying, like you, that they are negative! You are in my thoughts!

Peace and Blessings
Namaste
Saysusie