Fill Out Your Profile to share more about you. Learn more...

Any regrets surgery brca positive

Options

if you removed your ovaries and uterus because of genetic testing do you have any regrets or are you happy? What was your experience. My daughter is having a very difficult time making this decision. She has decided on extra screening for breast cancer but all doctors are urging her to remove ovaries now. Thank you for your help.

Tagged:

Comments

  • katg
    katg Member Posts: 213
    Options

    Puzzled1.

    i was 60 when diagnosed. For me, my period ended at 41years old. I never had kids and never could. I got the genetic test before i started my chemo. The chemo i got was changed. I was given the news that I had the Brca 2 mutation. Geez I thought. But i listed to my Medical Oncologist and knew the treatments they chose were what people with results like mine have done. I got to speak with a surgical doctor who works on internal parts like the fallopian tubes and ovaries. Brca 2 loves those parts. For me, I said take them out. There was something noted on an ovary that turned out to be nothing at the surgery, so for me the Breast cancer was it.

    My younger sister found out she carries the Brca2 and chose to get her ovaries and fallopian tubes out. Late March of 2022. I had my surgery early Feb of 2022. My sister and I are both grateful we will not have ovarian cancer.

    Today, my older sister chose to roll the dice and not get tested. She is just know starting the test as she has something on her ovary. She has not called us today, but she has had abdominal pain for a long time. Today they are removing tons of fluid in her abdomen. I am praying for her. Praying she gts the genetic test, as that will provide more help in how to treat her. Does she have cancer? Not sure yet.

    I was never told to take out my uterus. I would ask for more reasons and get a 2nd of opinion. Once they are gone, they are gone. If her body shows a need to remove them? Ask questions.

  • puzzled1
    puzzled1 Member Posts: 8
    Options

    thank you so much for your reply! She is still making the decision. She is 41 and was told she should have ovaries and tubes out before as soon as possible but definitely before age 45.

  • chloecat2
    chloecat2 Member Posts: 2
    Options

    I found out I was BRCA2+ about 3 months ago. I have a long family history of breast, ovarian and uterine cancers on both sides. My diagnostic ultrasound showed growths on my ovaries, plus scar tissue had stuck ovaries, tubes and uterus together in one big mass. My gynecologic oncologist recommended due to my age (over 50), ultrasound results, mutation, and family history, the best option was removing it all. I agreed with her 100%. I had surgery to remove it all about a week and a half ago. I'm glad I did because pathology showed my uterus also had adenomyosis and leiomyomata that the ultrasound didn't pick up on. I feel so much relief mentally knowing that at least that element of risk has been reduced. I don't regret it for a second even though I'm now actually going through menopause for a second time because my ovaries hadn't completely shut down yet. I will be having a prophylactic double mastectomy next, once I find a surgical team I like.

  • puzzled1
    puzzled1 Member Posts: 8
    Options

    chloecat2, I’m so sorry you are going through this too. My daughter is probably going through with the mastectomy with diep reconstruction. Still hasn’t decided about the ovaries. She is 41. I will share your experience with her. Thank you so much!

  • katg
    katg Member Posts: 213
    Options

    It is not easy making this choice. I was 20 years past menopause at 60 years old when i found my lump.

    I love having this history as June 23rd my sister found out and so far she has had one set of chemo drugs. Like me Taxol and carboplatin. 3 rounds every 3 weeks. Complete hysterectomy then 3 more rounds. Has she done the genetic test? Find out if she is the 4th of 5 siblings who carries the BRCA 2 mutation. Nope. She has not. She has my family letter, but nope. Targeted treatment. She asked our younger sister why I am getting a colonoscopy if my chemo is done. Invasive she says.

    BRCA2 is not a joke.

    Puzzled 1- It likely would have been harder if I was 40 and still had my cycle. It has only been 7 months since all my surgeries are done. I am not sorry. Grateful for my doctors.

  • herb
    herb Member Posts: 65
    edited April 5
    Options

    No regrets. The total hysterectomy was my 1st surgery as my gyn said they are finding higher rates of all female organ cancers in brca. My story is crazy cause in the past year I went from find out brca, getting hysterectomy to screening for melanoma , to pancreatic screening finding stomach cancer in April 2023. To getting clear of that so I could get my masectomy because my 6 month scans were getting progressively worse to the point my mri before my masectomy was abnormal. Calcification polyps and other pre cancerous conditions. Just had my masectomy Feb 27th. I am lucky to be alive and I have learned that with brca, why risk cancer. So many brca end up with stage 4 with mets and its game over then, no redoing and then it's big regrets that the surgical options to reduce risk were not taken. Ovarian is silent. At least with breast you can do the 6 month mri /mammogram screening. It has been proven that breast screening great reduces cancer being found at stage 4 in brca. In reality all screening greatly reduces risk of death by cancer, because most cancer early stage are treatable

  • katg
    katg Member Posts: 213
    Options

    BRCA2 and the effects of chemo got me to a new door with my blood. After a variety of treatments and 13 rounds of chemo, I ended up with pancytopenia. Blood issues. Early October 2023 a hematologist visit and an MDS diagnosis. It can come from chemo. I also had a gene mutation in my TP53 gene. April 9 of 2024 I had a bone marrow transplant.

    A genetics test can share so much. A bone marrow biopsy tells another truth.