Husband not on board with my decisions.

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Kitkat49
Kitkat49 Member Posts: 3
edited April 2018 in Genetic Testing

Hi, I was diagnosed with BRAC 2 in march of this year. I am 49 and my mother had ovarian cancer at age 28.I've had a lot of information thrown at me really fast. My first throught was to go home and talk to my husband about everything i had been told. His response completely blow me away. It seamed the only thing he took out of the information was the fact that i don't have cancer. He hasn't gone to any of my drs appointments with me but thinks i should just drop it and that the dr is being way to dramatic. My husbsnd is well educated and over researches everything.But he has never once looked into the BRACA 2 mutation. My dr is strongly suggesting a oopherectomy and complet hysterectomy. I also have consultation with a breast surgeon this month for more information regarding a double mastectomy I have 2 grown daughters but i don't want to stress them out more They are both waiting on their test results to come back from their BRACA testing. I was wondering if im the only one with a partner who just doesn't get it? I don't want to go though this alone.

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  • Denise-G
    Denise-G Member Posts: 1,777
    edited April 2018

    Oh gosh, so hard for you. I do not have any answers or experiences with this, but wanted to say hello and hoping someone will chime in here soon.

  • edwards750
    edwards750 Member Posts: 3,761
    edited April 2018

    I’m sure you are not the only one. There are ladies who posted on this websitewhose spouses and BFFs deserted them when they were diagnosed. Reprehensible and despicable. So much for their wedding vows.

    Maybe he’s afraid. My husband is an engineer so I completely understand about over analyzing everything. It’s the nature of the beast but I’ll have to say when he found out I had BC he was very supportive - as he should have been of course. However, I don’t think he wanted to talk about it much because he was afraid. I’ve always been the strong one and the go to person like most wives/mothers are. I kept my game face on most of the time.

    Did you ask him to go to your appointments with you? When you meet with your BS ask him to go with you. If he doesn’t talk to your doctor about his attitude. I had a patient advocate who was very helpful.

    You shouldn’t go it alone. Tell him you are afraid of just that. You need and should get all the support you need.

    Diane

  • Lula73
    Lula73 Member Posts: 1,824
    edited April 2018

    I'm so sorry he's not being supportive. I will say that there are a lot of people that look at things that if it's not broke don't fix it. When/if it breaks we can fix it but not til then. So, no actual cancer there? Then what's the big deal? Why would you do anything about it til something happens? It sounds like that's where your DH is. He would probably be more than happy to do the research if there was cancer there. It's very similar to people who don't want to know about their genetic testing or wouldn't take any proactive steps if they got the results and tested positive for something. I guess what I'm saying is that it's not that he doesn't care about you or your feelings, he just doesn't understand them because that's not how his mind works. Of course he could just be afraid of what it might mean for you and him and he's dealing with it by avoiding it and not giving the results and the implications any credence. Sitting down and having a discussion about it from these standpointsmay help. Good luck to you!

  • bluepearl
    bluepearl Member Posts: 961
    edited April 2018

    Be your own advocate. I was. Before my mastectomy, my husband dropped me off at the hospital entrance and said "good luck". The doctors all thought I was single. When I developed post mastectomy pain syndrome, all I got was "it's your own fault for making the decision to get a mastectomy". I no longer look to him for comfort or sympathy. I have friends. Sad, but true. If he gets a cold, it is a major disaster but now I am giving as good as I got. Some relationships end long before a divorce. I am hoping he turns around as it might be from fear. (((hug))))

  • Kitkat49
    Kitkat49 Member Posts: 3
    edited April 2018

    Thank you for sharing your story with me. I'm sorry u had to go through everything alone I do hope my husband comes around too. I'm not sure i can stay in a relationship where i don't get the support i need with this decision . I hope your husband can some day see what a strong woman he has.

  • Kitkat49
    Kitkat49 Member Posts: 3
    edited April 2018

    Thanks so much for your reply. I'm hoping he will be more supportive. He has agreed to go with me to my appointment with the surgeon on April 17th.

  • arh5249
    arh5249 Member Posts: 1
    edited April 2018

    I am so sorry that you are dealing with such a struggle currently..


    I am currently waiting for my genetic test results. My mother had testing done when she was diagnosed with cancer in 2008 and was positive for the BRCA 2 gene. I am anxiously waiting for my results, and my husband treats it as if I am overacting. Really though, I think it is more of a denial than anything. Women do so much in the relationship and household, it's hard to accept that they may be or get seriously ill.

    I have requested that he be part of my doctors appointments to understand the reality and severity of it.

  • Icietla
    Icietla Member Posts: 1,265
    edited April 2018

    I am so sorry, Kitkat. (((Hugs))) You are not alone.

    In my time here at BCO, I have seen some posts about women being abandoned by their Life Partners for having breast cancer.

    I have also seen some posts about women whose surgery treatment preferences (for mastectomy) were derided by their Life Partners. Their Life Partners trivialized their affliction and pressured (bullied) them not to have mastectomy surgery.

    Your husband needs to understand that any case of invasive breast cancer has the potential to be deadly. He needs to understand and respect that you would prefer to minimize that likelihood -- hoping to head off -- prevent -- that condition, if possible. Would he mind playing Russian Roulette with a mostly loaded weapon? Would it be so different from what he is asking of you -- to wait and see and take your chances, knowing of the danger? But he could avoid that danger by not playing that game. It is not so simple for you, and you could have no assurances of your well-being or dodging the bullet, so to speak, anyway.

    Angelina Jolie wrote this item linked here. I think you should read it to your husband. Part of it is directed to the Life Partners of those making the decision you are making.

    https://www.nytimes.com/2013/05/14/opinion/my-medical-choice.html



  • Icietla
    Icietla Member Posts: 1,265
    edited April 2018

    Awareness

    Metastatic breast cancer (MBC) is defined by the spread of breast cancer to non-adjacent organs such as the lung, liver, bones and brain. It is fatal in 97–99% of cases.

    Did You Know?

    > Currently, over 230,000 Americans are diagnosed with breast cancer each year

    > 5% of those diagnosed with breast cancer are Stage IV at the time of diagnosis

    > 30% eventually progress from Stages 0, I, II and III to become Stage IV

    > Metastatic breast cancer (MBC) patients live, on average, 18–24 months after diagnosis

    > Stage 0 patients can and do metastasize

    >Patients can and do metastasize 30 years or more after treatment

    > In the US, over 40,000 people die from MBC each year

    ----------

    Source: METAvivor

    http://www.metavivor.org/_media/uploads/images/main_content/2015_12_10_downloadableBrochure.pdf

  • joy2
    joy2 Member Posts: 43
    edited April 2018

    Hello! I am a BRCA1 carrier and i opted for a bilateral mastectomy. My surgery is on April 25th. I just wanted to be done first with my breast surgery and then I am going for hysterectomy. When i found out that i have this type of gene i was reluctant to go through this, but my husband told me that it is best for me to do what doctors say so we don't have to worry and go through the stress of checking every 6 months MRI and mammograms and basically be waiting for cancer to come. Good luck to everybody and wish you all best of luck.

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