Oopherectomy after Mastectomy for Grade 3 Er-/Pr- breast cancer?

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Mimi68
Mimi68 Member Posts: 112

Hello All, 

I had a partial hysterectomy ten years ago for uterine prolapse and now at 46 am wondering about the protective benefits of Oopherectomy after breast cancer. My genetics were negative and I do not have a family history but the genetics counselor eluded that there are many "undiscovered" mutations that are yet to be defined and will also explain many womens "non-genetic" er-/pr- BC and TNBC. Thanks!!!

Mimi

Comments

  • Annette47
    Annette47 Member Posts: 957
    edited April 2014

    My understanding is that after a BMX for DCIS, your risk of recurrence is very low to begin with, and with ER- PR-, an oopherectomy most likely would have little to no additional benefit as your cancer was not fed by estrogen.   Assuming you had pure DCIS, then protection against metastatic recurrence is not relevant in your case.

    It might have some protective effect against a new primary (which could be ER+), but with little remaining breast tissue, your risk of that should be very low as well (I've heard in the 1-2% range).     It's something to discuss with your medical team, but personally for me, I would rather chance the very minimal risk of a new cancer following a BMX than the known side effects of an ooph.

  • Mimi68
    Mimi68 Member Posts: 112
    edited April 2014

    Thank you Annette,

    I agree with all of your points and from what I have read, it all makes sense. the only question is that the genetics counselor made me aware that especially with er-/pr- BC, genetics likely plays some role, even if you are BRCA1/2 negative. She said they are likely to discover many more mutations down the road. Since this type of cancer is poorly understood, then that makes one believe that even though er-/pr- is not fed by estrogen from the ovaries, it may be linked in the way that BRCA is, but not known how in women who are BRCA1/2-. I will discuss with my Oncologist in June. I overall feel very relieved to have had pure DCIS and post MX risk 2%. My only concern as a Nurse is that in five years protocols will be different in treating even DCIS based on longer term outcomes being followed. We still know very little about it. So, in some ways I think we really have to be our own best advocate. BC is definitely not one size fits all. Thanks again!!

    Mimi

  • lintrollerderby
    lintrollerderby Member Posts: 483
    edited April 2014

    A couple of thoughts from a different perspective; I had Triple Negative IDC and I am positive for a BRCA1 mutation. 

    Since you had pure DCIS, and DCIS is not routinely tested by IHC or FISH for HER2 amplification, you wouldn't really have all of the "pieces" to the puzzle so to speak. Without the HER2 status, there is no way to know if your DCIS was Triple Negative or HER2+.

    For those who are positive for a BRCA1 mutation, oophorectomy is strongly recommended, not so much for breast cancer risk, as over 70% of those with that particular BRCA status tend to get Triple Negative, but because our chances of ovarian cancer are extraordinarily high.

    There are certainly undiscovered genetic mutations. With a small focus of pure DCIS that is not hormone receptor positive, a bilateral mastectomy, no family history of ovarian cancer, and negative BRCA results, I think that an oophorectomy would come with more risks than benefits.

    Best wishes.

  • deb1973
    deb1973 Member Posts: 96
    edited April 2014

    Hi Mimi,

    I too had ER/PR- pure DCIS, and likeypur observation that it is important to be your own best advocate.

    My GP had mentioned oopherectomy when we were brainstorming treatment/follow-up, but we didn't go ahead with it. I'm curious to see what you decide.

    On another note, I'm curious what other tactical decisions you have made about prevention and monitoring post-mastectomy. Before my surgery, I hit all the boxes for high recurrence risk (large size, young age, high tumor grade, ER-) so my opinion is that one can't be too careful.

  • Mimi68
    Mimi68 Member Posts: 112
    edited May 2014

    Hi Deb,

    Well, after discussion with my GP, we decided a screening U/s every few years is affordable, non invasive and offers no side effects. I personally at 46 do not want to be thrown into Menopause unnecessarily. I feel good about it and my ovaries are clear! 

    Thanks lintrollerderby, great points. 

  • Mommyathome
    Mommyathome Member Posts: 1,111
    edited May 2014

    Hi ladies. I had a BMx on January 29 and am scheduled for my exchange June 2 and a hysterectomy and ovaries removed on July 1. I was diagnosed w DCIS in December, I have a strong family history of both breast and ovarian cancer. The past 2-3 years I've been dealing w heavy bleeding, large clots and irregular periods. My vs wanted me to have ovaries removed at 45 years old but w an iud and cryoablation that didn't work I have decided to have the hysyetectomy now. I am meeting w a mo June 4 discuss what I need to do after being thrown into surgical menopause. My cancer was ER and ZpR positive. Any one with any thoughts, advice, similar situation??

  • coffeelatte
    coffeelatte Member Posts: 209
    edited May 2014

    Mimi, I too was diagnosed with DCIS that was high grade ER-/PR-  in July 2013. I wanted to share that I did not get approval to have the BRCA testing from my insurance company because I had a complete hysterectomy with ovaries removed in December, 2003. So that was 10 years prior to my cancer diagnosis. I tried for several years to use replacement estrogen but I had an allergic reaction to every single one. I went to several doctors trying to find an estrogen replacement that might work because I was only 46 at the time and the hot flashes and insomnia were hard on me. I was sent to an immunologist at a research hospital to see if he could help, but once he saw the hives I would get, he said to forget the estrogen, which I did.  He did also wonder why my body was so allergic and if it might be for a reason yet unknown. He felt these type of reactions happen for a reason.  I have often wondered about that since my diagnosis.

    Also, the breast surgeon I used will not approve estrogen replacement for ER-/PR- women in his practice. He told me he felt there is not enough known about breast cancer to assume that ER- /PR- cancer was always negative. His said he felt that the cells can morph over time and what once was ER+ could morph to ER-. This was just a conversation I had with my particular BS last year. This is all he has done for 30 years, so he has seen a lot of it. I just found his insight interesting. I sure wish we knew more.

  • HappySpring13
    HappySpring13 Member Posts: 103
    edited July 2014

    This is such an interesting thread.  Everyone posted valid points.  I had pure DCIS ER/PR negative. Did BMX in Dec and now have implants.  My Brca testing was done. For Brca1 it stated No Mutation Detected....but under that wording there was a variant with a number and it stated Favor Polymorphism.   For the Brca2 it came back No Mutation Detected.

    Here's where it gets really strange.  My oncologist said I should see a Gyno Onc right away to have an oopherectomy preformed. I got so scared I got the appointment immediately.  This Gyno Onc tells me that I am Brca positive and even though it stated a Favor Polymorphism which means it isn't considered bad.  He said that you can't be half pregnant...this is the example he gives me. And that he himself is doing research and would want my ovaries and blood to help make a test that can test for ovarian cancers in the future. I thought that was pretty great.  I could be of help.  However, I started getting the sick feeling of more surgeries and by having an oopherectomy at 44 what it would do to my body.  After some more research on line, I finally called the geneticist from Myriad that does the Brca testing and she said I an NOT Brca positive and for him to want to remove my ovaries just based on my report is wrong.  Unless there were other underlying issues. But just going by my Brca report, I shouldn't. The geneticist was going to send someone to see this doctor to find out why he wasn't going by the guidelines for these reports.  And the scary thing is that this doctor had his nurse call me 3 times already to schedule surgery.  I never even agreed to it at the time of our first meeting. Way to jump the gun.  My brother said if I go missing, he knows where to look.  Invasion of the body snatchers.  LOL.  

    And this doctor is Chief of Gyno Onc at the hospital (don't want to name names) and the Oncologist that referred me is part of the same hospital group. Just really scary and anyone else out there being told to get surgery, research and go for 2nd opinion.  

    I am on birth control and see my Gyno every 6 months.  And once a year she does a Sono for the ovaries. We are being proactive and I think being er/pr negative, this is the best route for me.  She even said I am Brca negative.  

    I'm just so confused.  But after reading this thread it helped me to understand that I wouldn't benefit from having them removed unless I had a family history of it.  Which that I can understand.

    Just wanted to add my story to this as this all happened in the last 2 weeks.  

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