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I had a bilateral mastectomy over a year ago.

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I don't know if I'm going crazy or what. I feel alone and nobody understands what I'm going through. I'm the first in both sides of my family to get breast cancer, first of all. And my mom and aunt's have passed away. In my father also. So I did do a genetic test and it dishow that there was no trace of it in my genes. So I'm so confused about it. I'm so scared for my daughter and granddaughters now. That they may have it somewhere down the road.

And I didn't go through the reconstruction. I did go and get the mastectomy bras and prostatic breast. But the are so heavy. So I really don't wear them. I'm 56 years old. And don't want to go through the reconstruction surgery. The mastectomy was enough pain and those drainage tubes.

But I'm really having so many questions on why? And go through so many emotions at one time. I've found myself so angry, because I had cancer. Then I cry and just can't get myself out of bed. But then feeling like everyone is pitying me. I can't find clothes that even look right on me. And I really anyone seeing my scar's. Because I'm so self-conscious about them. But then there times I'm really proud of myself for going through the surgery and beating Cancer. I don't feel like myself anymore. I'm not interested in having sexual encounters with my husband. Because I really feel like a side show freak. I just wanted to know if I'm going crazy or what is going on with me?

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  • moderators
    moderators Posts: 7,913
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    Hi, @elle2, and welcome to Breastcancer.org. We're so sorry for the reasons that bring you here, but we're really glad you've found us. You're sure to find our community a wonderful source of advice, information, encouragement, and support — we're all here for you!

    Please know you are NOT alone in your feelings. Breast cancer and its treatment can have such an impact on those affected — from fatigue, body image concerns, sexual health, depression, and a whole array of emotions. We're sure others will be by shortly to weigh in with their experiences and help support you.

    In the meantime, we hope you'll check out these resources which might help you feel a little better:

    We hope this helps. Again, you're NOT alone — we've all got your back!

    —The Mods

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,749
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    Elle67,

    I am sorry that this worrying you. Please remember that those who have currently known genetic mutations are the minority of those diagnosed with breast cancer. Only about 15-20% fall into that group so the vast majority of those dx’ed do not have any known genetic mutations. Take care

  • maggiehopley
    maggiehopley Member Posts: 104
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    Elle67, my story is very similar to yours. I was diagnosed at 57 and had a bilateral mastectomy without reconstruction 16 months ago. I do not wear prosthetics, and I don't think anyone really notices. I did have to give some of my favorite shirts to my daughter, as they no longer fit properly, but I have found many other styles that look and feel fine. I am also the first person on either side of my family to get breast cancer and my gene testing also was negative. I have two daughters and naturally I worry about them, but cancer of any kind can happen to anybody. We are all at risk because we are alive. I am on an aromatase inhibitor, which has ended my sex life, but my husband and I have talked about it and it's okay. I am still a little sad, but I am no longer angry. Of course I am worried that I will have a recurrence.

    I returned to work after a 15 month leave-of-absence. No one is pitying me. I had to give up a dance group that I was a part of for 10 years and that was a big loss, but I am able to put it into perspective and yes, even joke about my disease when the circumstances are right. I still think about it every day, and am still on BCO because it is such a major part of my identity right now.

    Processing this experience takes time and it is a roller coaster. If you find that you are "stuck" you might want to pursue therapy or anti-depressants. I am moving forward every day and I hope that you will keep moving forward, too. You should be proud of yourself!

  • Elle67
    Elle67 Member Posts: 2
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    Thank you both for sharing your experience with me. I thought I was going through it alone. I went on zoom today for the first time. And shared my story with the breast cancer story. I really appreciate it.ni don't have nobody to share my feelings with. My husband doesn't understand it really. He trys. But just doesn't understand what I'm really going through. I'm going to look into finding a psychiatrist and a counselor to talk to. Especially if they are counseling in cancer victims. I learned that today. And hopefully can help me with my self esteem.

    I really do appreciate y'all for sharing with me. Because I really thought that I was in this alone. And I just felt like I was going crazy. But I'm not. And that gives me hope.

  • moderators
    moderators Posts: 7,913
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    You are most definitely not alone, @Elle67!

  • girlmom1975
    girlmom1975 Member Posts: 1
    edited February 18
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    I too am the first in my family to be diagnosed with breast cancer, and at the age of 48. I had a bilateral mastectomy because I have ILC and would worry if it would get missed in my other breast. I do wear prosthetics and have only told the people closest to me. I just started tamoxifen and am starting to feel a bit fatigued but nothing too noticeable. I am trying to stay strong for my daughters age 14 and 17 who have had both parents diagnosed with a cancer under the age of 50. My husband is a 15 year colon cancer survivor- and no family history/ genetics for both of us came back without any findings. I have been able to work except for the few weeks after surgery- keeping a normal schedule has helped me though everyone must take it at their own pace.

  • moderators
    moderators Posts: 7,913
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    @girlmom1975, welcome to Breastcancer.org, and thank you for your post! It's great to hear that you've been able to maintain some sense of normalcy during work, and taking things one step at a time is important. Feel free to reach out anytime you need, or simply want to connect with others who understand. 😊 We are so happy that you have joined.

    Take care,

    The Mods