I don't want the genetic blood test....

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Anonymous
Anonymous Member Posts: 1,376

I had my tele interview for genetics testing last week but delayed having the blood test.

Since I have cancer already, why do I need a test that tells me that my family and I are prone to cancer? I'm thinking of not having the test!

My sister, who also was diagnosed with breast cancer last year, had the interview and blood test. She sent me a copy of the 10 page report which I will share with my oncologist next week.

Will my blood test results be that different from hers? Why do I need the blood test if my sister had one?

Is the report for me or research?

I'm not questioning the usefulness of the blood test for others, but we already have report in our family.

The actual interview was informative; but I'm not convinced the results of my blood test will be any more revealing.

Am I wrong?

Comments

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2019

    I had my tele interview for genetics testing last week but delayed having the blood test.

    Since I have cancer already, why do I need a test that tells me that my family and I are prone to cancer? I'm thinking of not having the test!

    My sister, who also was diagnosed with breast cancer last year, had the interview and blood test. She sent me a copy of the 10 page report which I will share with my oncologist next week.

    Will my blood test results be that different from hers? Why do I need the blood test if my sister had one?

    Is the report for me or research?

    I'm not questioning the usefulness of the blood test for others, but we already have report in our family.

    The actual interview was informative; but I'm not convinced the results of my blood test will be any more revealing.

    Am I wrong?

  • SimoneRC
    SimoneRC Member Posts: 419
    edited February 2019

    I, and my family, had the testing. My results affected the type of surgery I had, mastectomy vs. lumpectomy. It affected my treatment, no radiation due to risk of radiation toxicity. It affected my decision to have my ovaries removed. It affects my ongoing colonoscopy schedule. Younger family members who test positive will need different surveillance than non mutated due to higher cancer risks for breast, ovarian, colon, prostate and pancreatic cancers. That is what they know so far about this more recently discovered genetic mutation. Also, those young ones who are of child bearing age must have their spouses checked as the mutation we carry would result in a deadly outcome for the child if both parents carry the same mutation. Yes, so for me and my family, we all felt we needed to know. Good luck with your decision.



  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited February 2019

    This is a big oversimplification, but if there is a gene mutation in your parents, both you and your sister had a 50% chance of inheriting it. Just because your sister does or does not have one does not mean that that is the case for you. Like Simone said, depending on the results, it could influence a lot more than just your risk for breast cancer.

  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited February 2019

    The main reason that genetic testing was suggested for me was the influence on the type of surgery recommended. I was on the younger side (50) when diagnosed and had a family history of cancer - breast, ovarian, pancreatic, prostate, lung. I tested negative on the OvaNext panel for something like 28 mutations.

    I think there's a benefit to knowing your results, but I understand that some people don't want to know. I guess I figure that if I already had cancer then it would be helpful to know. I had been offered testing in the past and declined then. I wasn't ready to know back then.

  • Renata
    Renata Member Posts: 172
    edited February 2019

    I have also declined the test (several times). I understand the significance of it but since I've made my mind up about my treatment I don't see the point. I was diagnosed at 38 so it is quite obvious that there's something wrong with me but I've had no children so whatever is wrong with me is going to die with me. If you are not ready for the test you don't need to take it, you may or may not in the future. It's entirely your decision. Best of luck whatever you do.

  • edwards750
    edwards750 Member Posts: 3,761
    edited February 2019

    My sister and I both have BC. Our mother had it. We didn’t have the test either.

    Diane

  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited February 2019

    Just a side bar, but part of the benefit of genetic testing is that (collectively) it might help discover genetic connections that we don't yet know about, that can benefit our kids and grandkids.

    I was genetically tested and came back with only a one mutation of "uncertain significance." It may or may not have anything to do with my cancer; likely not.

    I was DES-exposed in utero and that may be what explains my cancer. Or it could be a freak event, a random mutation. Nobody in my family on either side has had cancer at all, except one grandmother (in her 80's). Everyone has lived to 86-96 for the last 4 generations, except one alcoholic who drank himself to death and another who died of Spanish Flu. My parents eat like crap and don't move around and are both clicking along at 86 and 91.

    I wanted to know, since I have children, and I would want them to be aware if they were at risk, and to monitor anything relevant.

  • Darnit_DDD
    Darnit_DDD Member Posts: 40
    edited February 2019

    I did it for my sisters and niece, have not got the results yet. We have cancer on both sides of the family so I felt it might be important

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2019

    Thanks for all the information. I'm going to discuss again with my oncologist when I see her in a few weeks.

  • pupmom
    pupmom Member Posts: 5,068
    edited February 2019

    I did it for my daughters. But if you don't want it, don't do it! There shouldn't be any pressure one way or the other.

  • Flynn
    Flynn Member Posts: 307
    edited February 2019

    My sister and I both did testing and came up with nothing. I was so surprised. I would be curious to know if your MO thinks your results would likely be different than your sisters? I have no idea how often one sibling carries a gene mutation and one doesn't. I do sometimes wonder if my nieces should get tested even tho our test results did not have any mutations.

  • SimoneRC
    SimoneRC Member Posts: 419
    edited February 2019

    Hi Flynn,

    If one parent has a genetic mutation and one parent does not, typically, EACH of their offspring would have a 50% chance of inheriting the mutation. In autosomal dominant situations, there are two copies of each gene per parent. One parent has two normal copies, one parent has one regular and onemutated copy. Each time the two parents create a human being, there is a 50% chance that person would inherit the mutation and a 50% chance that person would not inherit the mutation. That is why each person would need to be tested to determine their own status.

    If, both parents do not have a mutation, there is no mutation for the child to inherit. Also remember that most cancers are in people with no known mutations. Fun stuff, right🤔.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2019

    As soon as I find out, I will let know if my MO thinks my results would likely be different than my sisters.

    Thanks for the additional insights.

  • Flynn
    Flynn Member Posts: 307
    edited February 2019

    Thanks for the info Simone- that’s very informative.

    Good luck at the appointment Viewfinder. The nice thing about testing is you can change your mind and get it done later if you choose to hold off for now.

  • Veeder14
    Veeder14 Member Posts: 880
    edited February 2019

    I was tested and am positive for BRAC2; shortly after receiving the results, I was diagnosed with both Melanoma and BC. A good reason for me to get tested was that insurance pays for Breast MRI's/continued testing which it would not otherwise pay for. The first Breast MRI was fine but the second year, the BC showed up and didn't on mammogram or ultrasound. Also, insurance paid for other testing such as periodic vaginal ultrasounds/sonograms to look for early detection ovarian cancer. Insurance also pays for PET/CT scans as follow up to Melanoma. Those are the reasons I got tested even though I knew family members were positive.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2019

    My sister's results showed BRCA1 mutation, so I'm going to get tested.

  • SimoneRC
    SimoneRC Member Posts: 419
    edited March 2019

    Sorry to hear that, Viewfinder. I thought of my results as a very good piece of information to have in order to help avoid some future possible issues. My treatment and surveillance are much more proactive. I think of it as a shot at a long life that I might not have otherwise had!

    Knowledge is power! Keep us posted!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2019

    Thanks, SimoneRC. I'm having my blood test next week and I understand it takes several weeks to get the results. Will let you know the results when I get them.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2019

    If someone has the BRCA1 mutation, plus is triple negative, don't they usually recommend a mastectomy instead of a re-excision lumpectomy? It will be my sister's third surgery.

  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited March 2019

    I believe so, and they often recommend ovaries be removed as well.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2019

    I spoke with my sister and she said the doctors aren't recommending mastectomy. The doctors feel the surgery including re-excision, along with chemo and radiation is enough. She goes to Virginia Mason Medical Center is Seattle, which is supposed to be one of the best cancer treatment centers in the U.S. So evidently their protocol is based on all her reports, what they have seen and everything that has been and will be done for my sister.

  • Luckynumber47
    Luckynumber47 Member Posts: 397
    edited March 2019

    It really disturbs me that your sister’s drs aren’t recommending mastectomy based solely on her genetic results. There is an extremely high percentage chance that she will develop cancer again if the breast tissue isn’t removed and I feel it is irresponsible of the drs to proceed with a third lumpectomy. Just because she feels like she is at a good medical institution doesn’t mean her drs are right. A second opinion at another facility is certainly warranted and Swedish and SCCA are all basically in the same neighborhood

    What is her genetic counselor recommending?

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2019

    "What is her genetic counselor recommending?"

    I honestly don't know. I assume the recommendation was included in the decision to proceed as mentioneed.

  • CBK
    CBK Member Posts: 611
    edited March 2019

    I did test positive for Brca2, I’m surprised it isn’t a standard test when you are DX.

    Both my brother and sister tested negative. Simplified, the counselors at my hospital and the Mayo clinic said it’s a 50/50 shot if it’s passed on. We had unknown history because both our parents passed when we were young and before the gene was discovered.

    I’m the only one that got the damn thing.

    But I went for three opinions. And they were all the same... take out the breasts and the ovaries. I felt like there was no pontification on this in the least.

    Especially is you are post-menopausal losing the ovaries should not be a big deal. Surgery is extremely simple and easy recovery. It’s the aftermath that’s tough if you aren’t already in menopause. But I guess I still would have done it anyway.


  • Lula73
    Lula73 Member Posts: 1,824
    edited March 2019

    viewfinder - it would be interesting to see the notes in your sister’s chart. In medicine if the dr comes in and lays all the options out (which they have to otherwise it’s considered malpractice) and your sister said something like, ‘I’d prefer not to have to have a mastectomy.’ (Many of us would say this.) The dr then focuses on the other options. In the chart it would say something like, ‘Patient declined mastectomy.’ The reality was she didn’t decline, she stated her preference but likely was not educated on the benefits of mastectomy vs other options due to an initial statement. (BTW, thisis the new way in medicine today - don’t argue with the patient. Follow their lead without question regardless.) In the average patient’s mind the other options presented must have the same efficacy or they wouldn’t be presented as options. In actuality with BRCA1, mastectomy is the treatment that reduces risk by 97%. Lumpectomy with clean margins, chemo, and rads treat the current cancer only and does nothing for the mutation risk reduction.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2019

    Lula73, Thank you for your keen insight! I haven't seen her chart.

    My sister talks about her cancer but really doesn't bring it up on her own (other than telling us when she has treatments and her side effects). I feel like I'm bugging her if I bring it up again!

  • Salamandra
    Salamandra Member Posts: 1,444
    edited March 2019

    When I had genetic counseling before I got tested for BRCA, I asked whether a positive result would mean a mastectomy right away. They told me that it would be an option, but regular MRI screening would be another option.

    (For me, it turned out negative, despite an intense family history).

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2019

    Well, I had my genetic blood test the other day, but the gal who interviewed me twice never told me I would also have to give saliva.

    I'm a gum chewer and when I got into the room to spit into the bottle, they told me I could not have eaten anything, or chewed gum, for a half hour before the test. Sometimes a long time in the waiting room before getting in to see the nurse or oncologist can be a blessing-in-disguise.

    This was my second trip for the test because the same gal never told the staff whether the test was covered by my insurance.

    My oncologist's staff it going to speak to her about these matters.


  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2019

    I got my genetic testing results today. Good news:

    BRCA1/2 Analyses with CancerNext-Expanded

    NEGATIVE: No Clinically Significant Variants Detected

  • SimoneRC
    SimoneRC Member Posts: 419
    edited April 2019

    Great news, viewfinder!

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