Surgery next week? DH not supportive

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clariceak
clariceak Member Posts: 752
edited June 2014 in High Risk for Breast Cancer

I was dx last Tuesday.  I'm 49 and have younger sister who was only 43 at dx, also a maternal aunt with breast and ovarian, and paternal aunts with breast, ovarian and cervical.  My father died of cancer.  So the family history is strong and no one has been tested for BRCA due to costs.

I live in Alaska but am currently in Seattle doing the full range of tests.  I have 2 young daughter, 8 and 11, and I've gone into this willing to be aggressive from the start.  When I told my breast surgeon I was considering a bilat she repeated what we've all heard. She said if I didn't have the bilat they could carefully watch the other breasts and catch any cancer early.  Unfortunately she was referring to the state of the art equipment in Seattle. I am not confident in the ability of my small town hospital to screen properly.  My husband is a total geek and research nut when it comes to scuba dive equipment he's interested in.  He knows virtually nothing about bc.  When I told him I was considering a bilat he gave the standard "I'll support whatever you" with zero conviction and then proceeded to tell me about some PBS show he saw that said gene tests are not reliable.  Then proceeded to insult me by saying not to base my decision based on something I read on a board.  I have been thinking about BRCA before my sister was dx and even went to genetic counseling prior. 

 The crappy part is that I need to decided TODAY if I want surgery next week.  I have "suspicious findings" in my lymph nodes and they did a needle biopsy yesterday.  I guess I need to call my insurance company and find whether they would pay to have the "good" breast removed at th same time.  I'll talk to the genetic counselor on Thursday, but of course, any BRCA results wouldn't be available for weeks.

 Any advice? (I won't tell my husbandWink)

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2009

    clariceak - given your family history of cancer, especially maternal, it makes sense for you to consider a bilat.  Do you know what stage and grade you have, and your ER/PR and HER2 status?  If your insurance company will cover it, and you are good with the decision, then I would say go for it - especially if you are not able to easily get to more sophisticated equipment / testing facilities.

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  • Lindissima
    Lindissima Member Posts: 239
    edited September 2009

    Clariceak,

    I so feel for you being in this situation.  (as we all have, in one way or another.)

    You seem to be under a  tight time constraint for making these decisions.  Is it because you must travel to get care and have family obligations?

    I know of  women who have an initial lumpectomy, then take time to decide.  They get BRACA testing, consult with a plastic surgeon, consult with an oncologist etc.

    However, you do  seem to have thought about this carefully  and done a lot of research,so you could get the bilat over and done with next week and move on from there..

    Keep us posted. And best of luck to you.  

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  • Leah_S
    Leah_S Member Posts: 8,458
    edited September 2009

    This is such a tough decision.

    I had a single mast and am now leaning towrds having prophylactic on the other side. Family history - 2 aunts with bc, one aunt with colon ca, grandma with ovarian ca. I am BRCA- but what we have to remember is that BRCA 1 & 2 are not the only genes that give a person a higher risk of bc. The are the only genes that have been identified to date that give a person an elevated risk. My genetic material is part of a study here to find other genetic markers for bc. Your extensive family history is just as relevant, to my way of thinking, as your BRCA results.

    Best of luck in your decision, and in your surgery.

    Leah

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  • clariceak
    clariceak Member Posts: 752
    edited September 2009

    Thanks to everyone for your replies.  I met with the geneticist today and have decided to have a bilat on Wednesday.  I'm just hoping all my scans come back clear and I feel I have made the right decision for me.

    He will send in my blood for BRAC testing, but as you say Leah, I may have a mutation that isn't indentifiable by test yet.  He said my strong family history make a bilat and ovary removal a good choice.

    I'm not sure about staging yet, but they have identified some highly suspicious lymph nodes.

    My decision to have my bilat without knowing my BRAC results first is partially guided by my access to high quality care in Seattle.  It's quite expensive to travel back and forth, and if the goal of the surgery on my "good" breast is to remove as much of the breast tissue as possible I think this is the place to be.  I just want to get back to my family!

    My husband has come around and is know encouraging me to have the bilat.

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  • smithlme
    smithlme Member Posts: 1,322
    edited September 2009

    Clariceak,

    As I was reading your first post my mind was screaming bilateral mastectomy. I was diagnosed the first time at 47, had a unilateral mastectomy, even thought I asked for a bilateral. My surgeon told me I wouldn't need it! 369 days later, after 8 rounds of dose dense chemo, I was diagnosed the second time. I had another mastectomy and genetic testing which told me I am BRCA 2+. I quickly had a hysterectomy w/BSO. My sister, who is a 20 year survivor, also tested positive for the BRCA gene and had her hysterectomy w/BSO last December.

    There isn't any ovarian cancer in our family, but all of my dad's family, who we got the gene from, are dead. I refuse to be the first. It's a huge decision you've made, but a good one. There's a web site called FORCE at www.facingourrisk.org that deals with BRCA 1& 2.

    Linda

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  • clariceak
    clariceak Member Posts: 752
    edited September 2009

    Thank you Linda. How quickly did you have your hysterectomy after your 2nd dx?   

     You really confirm what I am feeling in my gut.  That despite what anyone may say, I feel my chances of cancer in the developing other breast is huge, and ovarian as well. 

    I feel now is the time for major surgery as I am younger and stronger,  and  I assume chemo will be in my future which will further weaken me. 

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  • smithlme
    smithlme Member Posts: 1,322
    edited September 2009

    I had my hyster/ooph three months after my second diagnosis. Trust your gut...I wish I did the first time...

    Linda

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