• BRCA testing?

    Asked by Saok1969 on Sunday, January 21, 2018

    BRCA testing?

    I'm trying to decide about BRCA testing. I had ovarian cancer at 46. My mother, grandmother, and great-grandmother all had breast cancer post menopause. No history anywhere that I know of, of ovarian cancer until me. My oncologist said he doesn't think it is necessary to be tested. My gp wants me to have the testing. I have only sons, no daughters, have yearly mammograms. What do you think?

    19 Answers from the Community

    19 answers
    • Ejourneys' Avatar
      Ejourneys

      "A diagnosis of Hereditary Breast and Ovarian Cancer Syndrome (HBOC) is considered when there are multiple cases of breast cancer and/or ovarian cancer on the same side of the family. The chance that a family has HBOC increases in any of these situations: ...

      "There are breast and/or ovarian cancers in multiple generations on the same side of the family, such as having both a grandmother and an aunt on the father’s side both diagnosed with these cancers."

      Source: https://www.cancer.net/cancer-types/hereditary-breast-and-ovarian-cancer

      Tell your oncologist the American Society of Clinical Oncology supports your being tested.

      If you carry BRCA mutations, they could be passed down to your sons and affect their offspring. You would also be placed at greater risk for additional cancers, such as breast, pancreatic, and melanoma. If your sons have the mutation, they would be at greater risk for those cancers and for prostate cancer.

      I wrote my oncologist a memo (after his assistant said my insurer probably wouldn't cover me) explaining why I wanted to be tested for BRCA mutations. I had breast cancer, post-menopausal. However, I had no first-degree relatives with cancer: my mother died young from heart disease and I have neither siblings nor children. However, my paternal grandmother died of pancreatic cancer and my father's first cousin died of ovarian cancer. I explained in the memo that without siblings or children, I was dealing with a lack of data points. I am also of Ashkenazi descent, which is a higher-risk group for BRCA mutations.

      My insurer took longer than usual, but they eventually approved coverage. Fortunately, I tested negative for mutations. But if I had tested positive, I probably would have changed some treatment decisions.

      7 months ago
    • Carool's Avatar
      Carool

      I agree with Ejourneys. Wishing you the best -

      7 months ago
    • Lynne-I-Am's Avatar
      Lynne-I-Am

      I also agree with Ejourneys, please get tested for the BRCA mutation. Do it for your own information and for the medical history you will be passing on to your children and their children. I only know the medical history on my mother’s side of the family concerning any type of cancer or disease. One maternal aunt had breast cancer, and one cousin had ovarian cancer. I was tested for the BRACA mutation and like Ejourneys, I tested negative. My insurance coverd the cost for my testing also.

      7 months ago
    • Bug's Avatar
      Bug

      I agree with the other responses. And I was tested. Negative, fortunately.

      7 months ago
    • elleneber's Avatar
      elleneber

      the reality is that BRCA testing is not ALWAYS covered by insurance. It is a test that every person (male/female) Should have their BRCA status in their medical history.

      7 months ago
    • sroch's Avatar
      sroch

      I agree with all who say you should be tested. Your insurance should pay for this since you do have ovarian cancer. It is beneficial not only to your family but also to you in determining your treatment! Stay strong,teal sister!

      7 months ago
    • JustForToday's Avatar
      JustForToday

      I knew I would change my treatment plan to be more aggressive if I was positive. My insurance would not pay for genetic counseling. I decided to pay for the counseling myself. In genetic counseling I learned my insurance company would pay for the testing itself because I had breast cancer. In researching online before genetic testing I found "Color Genomics" which appears to offer testing that costs hundreds of dollars rather than thousands of dollars. My genetic counselor said they would submit my sample and would confirm my insurance company would pay for the test before they did the actual test. If, for some reason, the insurance balked, the counselor said we would use Color Genomics. He felt it was a good option. We used blood samples for my test. Color Genomics uses saliva and the counselor felt there was a very small possibility the blood testing would be more accurate. In any case, I knew I would rest easier making decisions based on what I knew rather than what might be true. If you are of the same mind and are willing to pay a couple of hundred dollars for the test I know there is at least one company out there that you can contact yourself, submit saliva sample and get an answer that might help you make decisions. I trust and have faith in my caregiving team. There are times when I know I have to advocate for myself for peace of mind.

      7 months ago
    • Carool's Avatar
      Carool

      I, too, was tested. I was able to be part of a study given by my hospital during my treatment. I was negative.

      7 months ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      I would err on the side of caution and doi the test.

      7 months ago
    • Kirvin's Avatar
      Kirvin

      I don't have a history of ovarian cancer in my family but both my oncologist and my gynecological-oncology surgeon recommended strongly that I be tested. They said it not only affects my children by my siblings and their children. I thinks it's better to error on the side of caution. I'm negative and knowing that affects my treatment in regard to parp inhibitors, which are more effective for those with the mutated gene.

      7 months ago
    • SueRae1's Avatar
      SueRae1

      I agree, get the test. I did, and I was negative. I waited for about 2 weeks to get the results. My cousin who is the head of Mammography at a breast cancer center said "the results are not important for you, you have cancer, and it can help your treatment. The results are for you sisters (I have two) your daughter and your niece. It's important for everyone in your family to have a complete history of all medical conditions

      7 months ago
    • kalindria's Avatar
      kalindria

      Get tested. You DO have risk factors. Breast, ovarian and colon cancer are related and I don't know what your oncologist is thinking! I didn't have a family history of any cancers and my health care in California wouldn't test me due to that. Now that I'm in Washington state, my oncologist said it was important to know as there would be a number of screening tests they would be running if they knew I carried the gene. My insurance approved the cost and I am thankfully negative.

      With as many close relatives as you have with breast cancer, I'd be raising heck to make sure I got tested. Not just for you, but for any children you have as well as nieces and nephews. You all need this information and so do your doctors.

      7 months ago
    • kaki54's Avatar
      kaki54

      I had the testing. It was negative. Have peace of mind that I am not predisposed to breast or colon cancer. Had ovarian and uterine cancer. Only one in my family to have ovarian cancer.

      7 months ago
    • Carool's Avatar
      Carool

      Excuse me if I'm saying the obvious: After I learned I was negative, the counselor told me that there are probably other gene mutations that predispose people to getting certain cancers, but at the time of my test (18 years ago), there weren't genetic tests for other gene mutations that might cause cancers.

      7 months ago
    • SueRae1's Avatar
      SueRae1

      In addition to BRAC testing in Oct 2910,which my insurance paid for, including all the subsets, I saw a geneticist who specializes in cancer in Aug 2012 when my cancer metasized. He had me get a BreastNext screening. It tests for known non BRAC mutations that are related to Breast Cancer. My results were negative. I still get the very occasional letter telling me that a variant, which is a gene that variation that they don't have enough information about is now known to be normal.

      7 months ago
    • Terri's Avatar
      Terri

      I did it, and I am positive for BRCA 600E. It will help me get Melanoma therapy.

      7 months ago
    • Julia52's Avatar
      Julia52

      Get tested. You can pass it on to sons too. They, if positive are at higher risk for cancer. I was tested and I am negative. The testing for me was $1,500. Still negotiating with insurance to pay.

      7 months ago
    • Carool's Avatar
      Carool

      I want to amend my second comment by saying "...there weren't genetic tests for gene mutations that might MAKE THE PERSON MORE LIKELY TO DEVELOP A PARTICULAR CANCER OR CANCERS."

      7 months ago
    • Saok1969's Avatar
      Saok1969

      So I had my six month check yesterday and I mentioned genetic testing again. My doctor seemed surprised that I hadn't had it done yet. Thanked me for mentioning it and scheduled me to have it done next Monday. I really like my doctor, but I could also kick him in the tail. Lol. I'll let you know what I find out.

      6 months ago

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