Genetic testing for BRCA

apple25
apple25 Member Posts: 14
edited March 2014 in Breast Cancer #1
I've been cancer free for 14 years. Apparently my surgeon must be bored, because he's been harping on having me tested for the BRCA gene. Never mind there's no history whatsoever of anyone in my family having breat cancer. Not once have any of my blood test shown evidence of the gene. My surgeon is so certain I have the gene, he had the nerve to mention to me two weeks ago that I should seriously consider having a second mastectomy as well as removal of my ovaries. I immediately called my oncologist who told me my surgeon should have his testicles removed so he can prevent any future cancer !! She did say to come in today and she would draw my blood and send it to the one lab in the country that does genetic testing.

Has anyone had the test for the BRCA gene ?
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Comments

  • Ritzy
    Ritzy Member Posts: 4,381 Member
    #2
    I didn't have the BRCA test
    I didn't have the BRCA test apple. I felt no need for it. I guess sometimes I feel that the doctors have no idea of the cost and the anguish that we go thru for each and every test.

    As far as your surgeon, is his business slow or something? Weird how he would contact you and tell you that you need all of that surgery. Talking to your oncologist was the best thing you could do! They have our best interest at heart and will guide you.

    Good luck to you!


    Sue :)
  • apple25
    apple25 Member Posts: 14
    #3
    Ritzy said:

    I didn't have the BRCA test
    I didn't have the BRCA test apple. I felt no need for it. I guess sometimes I feel that the doctors have no idea of the cost and the anguish that we go thru for each and every test.

    As far as your surgeon, is his business slow or something? Weird how he would contact you and tell you that you need all of that surgery. Talking to your oncologist was the best thing you could do! They have our best interest at heart and will guide you.

    Good luck to you!


    Sue :)

    BRCA test
    Sue,
    My oncologist said to have the test just for the heck of it. She's not expecting it to come back postive. My surgeon is part of a group of 5 surgeons. He has more than enough patients to keep him busy. I have no clue why he's so gung-ho about doing more surgery on me. If he doesn't stop talking about more surgery, I'm changing doctors. I'm keeping all my body parts intact !

    Thanks for advice !

    Emma
  • Larisa
    Larisa Member Posts: 7
    #4
    I had the genetic test done and....
    so glad I did!!! I am 36 years old and diagnosed last year no family history except for a great Aunt on my father's side. I was planning on having a lumpectomy until I had the test done and found ought I was positive for the BRCA2 gene. So I had both boobies taken off in March and I have my expanders in now. I fill such a relief to know that if I had not had the double mastectomy, I had a 85% chance of the cancer coming back.
  • Christine Louise
    Christine Louise Member Posts: 426 Member
    #5
    BRCA test may not answer the questions
    So many women with strong family histories of breast cancer test negative on the BRCA test. Apparently, there are other genetic mutations responsible for inherited bc but there aren't tests to detect them yet. So, the BRCA test won't necessarily define whether you "need" a mastectomy or ovary removal to prevent further cancer.

    For insurance reasons, I didn't get the test. My mother, also a bc survivor, tested negative. I'm getting my ovaries removed because my cancer was estrogen-positive. My breast surgeon, oncologist and gynecologist agreed this is a good step.

    Your surgeon may just be suggesting everything he can think of to keep you cancer-free.
  • 24242
    24242 Member Posts: 1,398 Member
    #6
    Me too
    Been 14 years and went through genetic counceling and very expensive to do if not done through cancer clinic. They also said that even though have allot of cancer both sides of family only one bc or maybe two on my father's side. She said one more or another bout with me I would be eligable to get it done for nothing to stay in touch with them. I cannot afford the 4 thousand she said it would cost me to do. Hard getting the information after all these years would have been easier 14 years ago when parents remembered more.
    Tara
  • greyhoundluvr
    greyhoundluvr Member Posts: 402
    #7
    Apple -
    I'm wondering if there is some recent publication out there that has gotten to the surgeons because my neighbor is going through the same thing. She had a single mastectomy some time ago and is way past finishing her treatment. Her surgeon also recommended the BRCA test. In her case it did come back positive and now she is in a quandry because the surgeon says she needs the remaining breast and her ovaries removed and her oncologist seems neutral. I am hoping she will get a second opinion with another oncologist who will give her more info and help her make this tough decision. Did your surgeon explain to you why he feels so strongly about this??
  • GregStahl
    GregStahl Member Posts: 188
    #8
    Wife had
    the test done and neg for both. Long family history. Cost $3340 and her insurance did pay for it. If your insurance does not pay for it the lab will work with you on payments.
    I am glad she did the test!!!
  • Hubby
    Hubby Member Posts: 325
    #9
    My wife had it too
    Donna was BRCA negative. The main thing she got out of it was the relief of knowing she couldn't pass it along to our daughter. If you add BRCA neg and node neg to her triple negative, we are up to quintuple negative.
  • Jennifer1961
    Jennifer1961 Member Posts: 137
    #10
    I had the test for two
    I had the test for two reasons. My (relatively) early age of diagnosis (48) and family history of breast cancer especially a cousin who was diagnosed at 30. Test was negative. Usually the test is given is there is a strong history of breast cancer, ESPECIALLY male breast cancer, early age breast cancer and history of ovarian cancer. It's an expensive test, so if you do it make sure insurance covers it.
  • MOrtiz0810
    MOrtiz0810 Member Posts: 41
    #11
    BRCA2
    My Breast Surgeon advised me that I should take the genetic test because I was under 40 when diagnosed with BC. In my case, I did not have any family history of BC or Ovarian Cancer in the family, but my father was diagnosed with Prostate cancer a few years back. Apparently, I was told that there are links between prostate cancer and BC and Ovarian cancers, so because my father had Prostate cancer the Oncologist believes that the mutation in on my father's side of the family. I did test positive (BRCA2).

    So I did have a bilateral mastectomy, and I'm considering having ovaries removed as a preventive measure. I plan on seeking a second opinion before I make any decisions on that.

    There are a couple of websites that can shed some light on genetic testing and counseling. I have listed them below. Hope this helps you out :)

    www.facingourrisk.org and www.nsgc.org
  • apple25
    apple25 Member Posts: 14
    #12
    Jennifer1961 said:

    I had the test for two
    I had the test for two reasons. My (relatively) early age of diagnosis (48) and family history of breast cancer especially a cousin who was diagnosed at 30. Test was negative. Usually the test is given is there is a strong history of breast cancer, ESPECIALLY male breast cancer, early age breast cancer and history of ovarian cancer. It's an expensive test, so if you do it make sure insurance covers it.

    BRCA test
    I went to the oncologist yesterday to have the test done. My insurance company is covering about 99% of the cost. My surgeon wanted me to have the test because I was diagnosed with bc at age 38. No one on either side of my family has ever had bc or ovarian cancer. The geneticist in my doctor's office said she'd get th results in 6 weeks. Afterwards, I went to my plastic surgeon for my yearly checkup to make sure my implant is ok. He agreed with my surgeon that if the test comes back positive for BRCA then I should have the mastectomy on my remaining breast. He did say he would refer me to another surgeon for a second opinion. He also said he would consult with my oncologist and surgeon to compare notes before I make any decisions about surgery.
  • apple25
    apple25 Member Posts: 14
    #13
    greyhoundluvr said:

    Apple -
    I'm wondering if there is some recent publication out there that has gotten to the surgeons because my neighbor is going through the same thing. She had a single mastectomy some time ago and is way past finishing her treatment. Her surgeon also recommended the BRCA test. In her case it did come back positive and now she is in a quandry because the surgeon says she needs the remaining breast and her ovaries removed and her oncologist seems neutral. I am hoping she will get a second opinion with another oncologist who will give her more info and help her make this tough decision. Did your surgeon explain to you why he feels so strongly about this??

    BRCA
    My surgeon said the exact same thing. Remove my other breast as well as my ovaries. My oncologist disagreed, but had me come in yesterday to consult with the geneticist in her office. They did the blood test and have sent it off to Myriad Lab in Utah. The results will be back in 6 weeks. I went to see my plastic surgeon for my yearly check-up. He agreed with my surgeon, but since I expressed doubt about the rush to do surgery, he said he would refer me to another surgeon for a second opinion once the results are in. Right now, I have no choice right but to wait for the results and proceeed from there. My plastic surgeon said once I get the results he would meet with my oncologist and surgeon to discuss the pros and cons of what to do if I am BRCA positive.

    Thank you so much for your feedback, I really appreciate it.
  • mimivac
    mimivac Member Posts: 2,143 Member
    #14
    Age and BRCA
    Yes, if you're under 40 and/or have a strong family history, the test is often recommended. I think it's a good precaution, especially for ovarian cancer purposes. Ovarian cancer is hard to detect and can be much more deadly than breast cancer. If you're BRCA positive and finished having children, many doctors would recommend removal of the ovaries. Sometimes even women with little family history of bc will be BRCA positive and some with strong family histories will be negative. There are genes they haven't yet identified. So, yes, I think it's a good idea to be tested if there is suspicion that one might be positive. I was 34 at diagnosis so had it done. I was negative, but a positive result would probably have changed my decision for lumpectomy. I don't think your surgeon is bored. He might be overzealous, but he's watching out for you, which is more than I can say for many (most) breast surgeons 14 years after the fact. Hope you get good results on your test.

    Mimi
  • mimivac
    mimivac Member Posts: 2,143 Member
    #15
    Hubby said:

    My wife had it too
    Donna was BRCA negative. The main thing she got out of it was the relief of knowing she couldn't pass it along to our daughter. If you add BRCA neg and node neg to her triple negative, we are up to quintuple negative.

    Quintuple negative!
    Hubby, add me to the club. I'm all around negative, too. :)

    Mimi
  • apple25
    apple25 Member Posts: 14
    #16
    Christine Louise said:

    BRCA test may not answer the questions
    So many women with strong family histories of breast cancer test negative on the BRCA test. Apparently, there are other genetic mutations responsible for inherited bc but there aren't tests to detect them yet. So, the BRCA test won't necessarily define whether you "need" a mastectomy or ovary removal to prevent further cancer.

    For insurance reasons, I didn't get the test. My mother, also a bc survivor, tested negative. I'm getting my ovaries removed because my cancer was estrogen-positive. My breast surgeon, oncologist and gynecologist agreed this is a good step.

    Your surgeon may just be suggesting everything he can think of to keep you cancer-free.

    BRCA test for or against
    There's no history of bc or ovarian cancer in my family. My insurance is covering 99% of the test, so money wasn't the issue. My oncologist is not convinced that more surgery is necessary, but both my surgeon and plastic surgeon agreed I should have it. My plastic surgeon is referring me to another cancer surgeon for a second opinion.
  • apple25
    apple25 Member Posts: 14
    #17
    mimivac said:

    Age and BRCA
    Yes, if you're under 40 and/or have a strong family history, the test is often recommended. I think it's a good precaution, especially for ovarian cancer purposes. Ovarian cancer is hard to detect and can be much more deadly than breast cancer. If you're BRCA positive and finished having children, many doctors would recommend removal of the ovaries. Sometimes even women with little family history of bc will be BRCA positive and some with strong family histories will be negative. There are genes they haven't yet identified. So, yes, I think it's a good idea to be tested if there is suspicion that one might be positive. I was 34 at diagnosis so had it done. I was negative, but a positive result would probably have changed my decision for lumpectomy. I don't think your surgeon is bored. He might be overzealous, but he's watching out for you, which is more than I can say for many (most) breast surgeons 14 years after the fact. Hope you get good results on your test.

    Mimi

    decisions, decisions
    I was 38 when I was diagnosed with no history in family.That's what threw me for a loop when my surgeon mentioned doing the BRCA test last month. He seemed a tad too anxious to remove body parts again even though I'm as healthy as an ox. Then I spoke to my plastic surgeon last night who agreed with him, but not until I get a second opinion from another surgeon. My oncologist thinks additional surgery is not necessary, but she'll wait and see what the test results show. I'm trying not to dwell on having more surgery, God knows it took two months to recover 14 years ago. I did tell my plastic surgeon if I do choose to have another mastectomy, I want it replaced with a bigger set of implants. If I have to sacrifice my entire chest, I want 38DD breasts in return ! LOL.

    BTW, did your doctor mention anything about additional chemo if the test come back BRCA positive ?

    Emma
  • MNLynn
    MNLynn Member Posts: 224
    #18
    BRCA test
    My oncologist wants me to have the BRCA test done - since I had a sister diagnosed at age 34 and I have an uncle who has been through breast cancer. But, I am leaning toward NOT having the test for two reasons - #1 I don't think my insurance will cover it and #2 - I am trying to figure out if there would be any implications for my kids - I know that. legally, group health insurance can't be affected by a positive BRCA gene - but life, disability & long-term care insurance can be - and I am wondering if a positive test for me could filter down to those insurances being determined for my children. My oncologist mentioned doing a mastectomy on my remaining breast (had a mastectomy on my right breast in Feb 2010), and removing my ovaries if I have the test done and test positive. I am considering asking about having my ovaries removed even without the BRCA test, since it sounds like there is little available for effective screening for ovarian cancer.
  • apple25
    apple25 Member Posts: 14
    #19
    Larisa said:

    I had the genetic test done and....
    so glad I did!!! I am 36 years old and diagnosed last year no family history except for a great Aunt on my father's side. I was planning on having a lumpectomy until I had the test done and found ought I was positive for the BRCA2 gene. So I had both boobies taken off in March and I have my expanders in now. I fill such a relief to know that if I had not had the double mastectomy, I had a 85% chance of the cancer coming back.

    Mastectomy and ovaries
    when you had your mastectomy, did you also have your ovaries removed ? My plastic surgeon said that would not be done by my cancer surgeon, but by my genocologist. Not sure why they don't do both at the same time.
  • Sally5
    Sally5 Member Posts: 87
    #20
    MNLynn said:

    BRCA test
    My oncologist wants me to have the BRCA test done - since I had a sister diagnosed at age 34 and I have an uncle who has been through breast cancer. But, I am leaning toward NOT having the test for two reasons - #1 I don't think my insurance will cover it and #2 - I am trying to figure out if there would be any implications for my kids - I know that. legally, group health insurance can't be affected by a positive BRCA gene - but life, disability & long-term care insurance can be - and I am wondering if a positive test for me could filter down to those insurances being determined for my children. My oncologist mentioned doing a mastectomy on my remaining breast (had a mastectomy on my right breast in Feb 2010), and removing my ovaries if I have the test done and test positive. I am considering asking about having my ovaries removed even without the BRCA test, since it sounds like there is little available for effective screening for ovarian cancer.

    Hope this helps
    Apple25 and everyone,

    I did have the test. I have a lot of family history; not just breast cancer. Apparently there is a colon/ breast/ovarian triangle. I heard that you could be negative and still get breast cancer and you could be positive and not get it. I was negative for both.

    First, you are required to see a genetic counselor. (I think this is the key for your insurance to cover it).. You can get a rush on it if your surgical decision depends on it. It is really very interesting. If it wasn't about MY LIFE.... It is interesting. They will follow a lot of your family history almost like a family tree. My mom was adopted so I do not have any information on her side... Still very interesting.

    This test only tests for breast cancer.... not other cancers... (I heard) If you are positive they do recommend hysterecomy...

    Hope this helps.
  • apple25
    apple25 Member Posts: 14
    #21
    Sally5 said:

    Hope this helps
    Apple25 and everyone,

    I did have the test. I have a lot of family history; not just breast cancer. Apparently there is a colon/ breast/ovarian triangle. I heard that you could be negative and still get breast cancer and you could be positive and not get it. I was negative for both.

    First, you are required to see a genetic counselor. (I think this is the key for your insurance to cover it).. You can get a rush on it if your surgical decision depends on it. It is really very interesting. If it wasn't about MY LIFE.... It is interesting. They will follow a lot of your family history almost like a family tree. My mom was adopted so I do not have any information on her side... Still very interesting.

    This test only tests for breast cancer.... not other cancers... (I heard) If you are positive they do recommend hysterecomy...

    Hope this helps.

    BRCA answers
    I spoke to the geneticist at my oncologist's office yesterday when they did the blood test. She'll get the results of the BRCA test and then she'll discuss the results with my oncologist and my surgeon. She checked with Aetna and they do cover most of the cost of test. I may have to pay a portion of the cost, but it won't be more than $200 if that much.
    Both my plastic surgeon and cancer surgeon recommended a hysterectomy. My plastic surgeon said the removal of my ovaries wouldn't be done at the same time as the mastectomy. I was under the impression everything would be done at once to get it over with.
    No one in my family has ever been diagnosed with bc, colon or ovarian cancer. I got to be the first one on both sides.

    Thanks for your advise. I won't get the results back for another 6 weeks. I'm keeping my fingers crossed.

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