BRCA 2 Positive What have you done for Hormone Therapy?

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WenBme
WenBme Member Posts: 2
edited March 2017 in Genetic Testing

I'm new to all this, but I'm certainly doing my research. I talked to a Genetic Counselor who is now no longer with the company so I have to meet with another Genetic Counselor this afternoon for more answers. I'm thinking about canceling the appointment since my health insurance doesn't cover the cost and I can find most my answers out on my own.

Breast Cancer runs deep on my Moms side of the family. I lost my Mom (59), 2 of her sisters ages 35 (back in 1979) and 58. My Mom passed away from lung cancer. Her doctor said it had nothing to do with her breast cancer, but I wonder now if it was related. My moms Aunt also had breast cancer. She's in her 90's now and is doing great. My grandfather (Moms Dad) also had breast cancer....and get this, passed away from lung cancer. (???) My fathers Mom also had breast and lung cancer.

I feel confident alternating my Mammograms and MRI's every 6 months so I'm opting the protective breast surgery. I'm still hesitant on removing the ovaries??? On a good note I was born with only one ovary so if I decided to have the surgery I would only have to remove the one.

My question is............being positive for BRCA 2. What do we do for our hormones? I'm 47 and just reached menopause. I was experiencing bad hot flashes all day long and having night sweats. I've been on Brisdelle for 6 days and oh, what a relief it is! :) I'm just afraid of gaining weight like I have heard a lot of woman say they have experienced. I've already gained 10 pounds from my low hormones. It's just frustrating because now that I'm BRCA 2 positive there's so much to think about and so many tests, appointments or genetic counseling I have to do before I can be treated....which I know is the BEST thing for me, it just gets overwhelming. My doctor has me on testosterone shots, but my doctor wanted me to ask the genetic counselor if I shouldn't take testosterone? Or if only the female hormones puts me at a greater risk of getting breast cancer??

What have you done for your hormone therapy?

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  • anneoftheforest
    anneoftheforest Member Posts: 52
    edited April 2016

    Hello,

    I'm BRCA2 and 39. I wanted to encourage you to check out the FORCE website www.facingourrisk.org. It is a site devoted to people with genetic mutations, especially BRCA mutations. There is a great forum where you can ask questions. Also they have very informative articles and depending on where you live they have meetings and you can talk to people on the phone as well. It's a great resource!

    I was diagnosed with DCIS a couple of years ago and had a bilateral mastectomy and then later that year had my ovaries removed so I am going through menopause now. Because of my diagnosis I'm not allowed to be on hormonal therapy of any kind. If I had known of my BRCA mutation before my diagnosis I could have taken hormones once I had my breasts removed.

    Usually BRCA2 cancers are hormone receptor positive so you are right that many doctors would have you stay away from estrogen and progesterone if you keep your breasts. If you do the BSO and have your ovaries removed you would be reducing the amount of estrogen in your body and you could take HRT to alleviate symptoms since you don't have cancer. But many doctors wouldn't allow that unless you had a your breasts removed as well.

    You might want to consider finding a doctor that is more BRCA savy. Do you see a gynecological oncologist or a BRCA savy OBGYN to screen for ovarian cancer? I don't know if you are in the U.S. but that is standard here. They should be able to help with some of these issues. Testosterone has not been approved by the FDA for women so I don't know that many studies have been done to show what the risks are, especially the risks for BRCA+ people.

    Some women who are BRCA+ and keep their breasts consider taking Tamoxifen or Arimidex to help reduce their risk of breast cancer. There are lots of factors to consider and it can make your head spin! Please do check out the FORCE website!

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  • WenBme
    WenBme Member Posts: 2
    edited April 2016

    Thank you so much for your reply and for all the very helpful information. I live in United States. I'm sorry you went through the battle of having breast cancer. You're so young! You are a fighter and a survivor. Way to go! 😊

    I met with the genetic counselor on Wednesday. Savy? heck no! It was a young man! Much younger than me! He couldn't answer my questions so he sent a female counselor in to help me. I'm not satisfied with their answers. They told me since I don't have cancer, I could receive HRT! I think I'll stick with this website and the force website you recommended instead of going back to them.

    My original genetic counselor did recommend that I take my ovaries out. I don't know if I'm in denial or what I'm going through. Right now I'm avoiding all surgeries. I guess I'll know more when I hear more about what others went through and the more I learn. I haven't seen a gynecological, oncologist, BRCA Savy OBGYN. 😞 Not yet anyway.

    Thanks again for the information and for sharing your story. I will definitely do my research.

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  • anneoftheforest
    anneoftheforest Member Posts: 52
    edited April 2016

    Yeah it is a lot to process. It takes a lot of time to work through the scenarios. I wanted to mention that the FORCE website started a new program that sounds really good. It is called a Peer Navigation Program where someone who is BRCA+ and trained calls you and helps walk through the process with you. I wish I had that option a couple of years ago. They can help with finding genetic counselors and just offer overall support.

    http://www.facingourrisk.org/get-support/PNP/index.php

    Best wishes

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  • August2015
    August2015 Member Posts: 15
    edited March 2017

    Hi Anne of the forest,

    Just wanted to ask what was your doctors' justification for no hormone therapy after dcis if you had both breasts removed? Dcis is not supposed to be invasive. Do they think it's best not to take a risk? Are they concerned about residual breast tissue after BMX?

    I am BRCA2+ also, 6174delT. I was diagnosed with Dcis er/pr+, Her2- at 39. I had BMX last year and am now few weeks pregnant. I was very concerned about estrogen myself but the doctors told me that once the tissue is removed with good margins it's all supposed to be gone.

    I will be having ovaries removed in the future.

    Just wanted to know your thoughts. Feel free to pm me. Thanks!
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