Anyone use 23andme for their BRCA results?

keeks
keeks Member Posts: 6

Hello!
I'm again faced with another decision to make and to be honest, I'm just tired of making decisions! Talk about overwhelming.

I begin my first chemotherapy infusion tomorrow (6 rounds of carboplatin/taxotere along with perjeta and herceptin every 3 weeks). Surgery will follow 2 weeks after my last infusion. My appointment to meet with genetic counseling isn't until mid June and my surgeon informed me that it most likely is just a consultation, that I won't even have any bloodwork done for the actual test yet. Even worse, the results from the test typically take many many weeks to come back.

The results of the test will determine if I can have a lumpectomy with radiation after my chemo or if I will have a double mastectomy and possibly remove my ovaries down the road. There needs to be coordination between my breast surgeon and a reconstruction surgeon, so the earlier I have results and can make the decision, the better.

My surgeon suggested looking into 23andme for the results instead of waiting on the geneticist through the hospital. He said the option is completely mine but after reading information online on the 23andme site, I'm starting to wonder if it will even be as thorough or reliable as whatever test the hospital will do?

Anyone have any experience using 23andme in this situation? Anyone have good/bad experience with it?

Any insight you lovely ladies would have is greatly appreciated. I'm just completely overwhelmed with reading information regarding all the decisions I've had to make in the last 3 weeks or so...

Thank you!

Comments

  • Ingerp
    Ingerp Member Posts: 2,624
    edited May 2018

    LISTEN TO THE BCO PODCAST ABOUT 23ANDME. Or read the transcript. Sorry for yelling but it was pretty new when I happened to be doing 23andMe. Bottom line is it only tests for three genetic mutations, all of which are found in Ashkenazy Jews. There are many many more and you really need a more complete test. I’m on my phone or I’d post a link but 23andMe is not nearly sufficient.

  • keeks
    keeks Member Posts: 6
    edited May 2018

    THANK YOU! that was my initial thought too. I'll look for that podcast.

    😊

  • HoldingHope
    HoldingHope Member Posts: 2
    edited May 2018

    Hi there,

    It sounds like you and I have the exact same treatment regimen (6 rounds of carboplatin/tacotere, herceptin, and Perjeta every 3 weeks. Definitely do the genetic testing through your hospital vs 23 and Me. I was told they have identified 19 different breast cancer genes, and 23 and Me screens for only 2. I have my genetic testing next week. Just finished round 2 of 6 of the chemo, so surgery will be in Sept for me.

    Genetic testing is only one factor that goes into your decision about what to do during surgery (lumpectomy vs masectomy). For me, I have dense breast tissue (along with 40% of the population), so mammos are not effective in detecting lumps for me. I am smaller chested (B/C cup), and I found the lump on my own while laying in bed just over a month ago. I had a diagnostic mammo shortly after that, and then I also had a breast MRI (due to my dense breast tissue). The breast MRI detected a 1 cm lump on my opposite breast that the mammo completely missed just a couple weeks earlier. I had it biopsied, and thankfully it turned out to be a benign fibroadenoma, but what blew my mind is that the mammo just a couple weeks prior did not detect the lump!

    During my ultrasound guided biopsy, the radiologist and I discussed how medical professionals often don't tell you what you should do in regard to surgery, but rather they give you the facts and the patient makes an informed decision. I was telling her that, as much as I appreciate that, I do wish they would share their professional opinions and then I can consider those when making my informed decision. When my radiologist called with my biopsy results, after sharing that the lump on the opposite side was benign, she said, “I need to tell you something. If you were my sister, I would tell you to get a double masectomy. You have dense breast tissue, so if you don't, you will neeed a mammo/Breast MRI every 6 months for the rest of your life, and there is a chance you would have a recurrence and would need to go through chemo treatments again."

    I believe surgery is a highly personal decision, so I am not trying to sway you either way. I'm still not 100% sure what I am going to do, although I am leaning towards a double masectomy with reconstruction after I complete radiation. I wish you all the best as you continue through treatments and are on the path to beating breast cancer!

  • Mucki1991
    Mucki1991 Member Posts: 294
    edited May 2018

    unless you have an unusually fast growing cancer there is time for you to make an informed decision. Don't let doctors rush you into a surgery. I was diagnosed in May 2017 and did not have surgery until July 2017. I was 42 and had a grade 3 multifocal cancer. These choices are huge take a breath and if you need to start chemo put it off for a couple of weeks again unless there is an unusual circumstance.

  • Oneof7
    Oneof7 Member Posts: 59
    edited May 2018

    I bought 23andme for my daughter for DNA. Her results took about 5 weeks to come back. I went to genetic counselor who drew blood at the appointment. I had only gone for a consult. The results were back in less than 4 weeks. Not sure how many markers are tested by 23zndme. My insurance covered genetic counseling because my daughter had tested positive. They covered my daughter's test because of family history. Hope this helps.

  • Oneof7
    Oneof7 Member Posts: 59
    edited May 2018

    I bought 23andme for my daughter for DNA. Her results took about 5 weeks to come back. I went to genetic counselor who drew blood at the appointment. I had only gone for a consult. The results were back in less than 4 weeks. Not sure how many markers are tested by 23zndme. My insurance covered genetic counseling because my daughter had tested positive. They covered my daughter's test because of family history. Hope this helps.

  • Oneof7
    Oneof7 Member Posts: 59
    edited May 2018

    My surgeon walked me through the option of lumpectomy Mx or Dmx. I will have MRI on Wednesday. The advice I received is that odds of recurrence are 3%per 10 years. I'm 61. I didn't know about breast press (mammo) every 6 months. These decisions are hard. I have BRIP1 gene (ovarian cancer risk) and have been advised I should have total hysterectomy. I am 100 lbs overweight which increases risk for uteran cancer. I'm going to have to give this more thought.

  • keeks
    keeks Member Posts: 6
    edited May 2018

    Wow, HoldingHope, everything you have posted about your diagnosis seems soo much like mine! I'm 33, found my lump myself, it measures about 2 cm as well.

    I have dense breast tissue as well and I think I'm leaning more towards the option of double mastectomy based on that (and what your radiologist told you.)

    I am starting to wonder why I never was sent for any MRIs. They did do a bilateral mammogram and my left breast (the one without the tumor) appeared to be just fine. Because I was diagnosed with what they described as an aggressive cancer, I am wondering why I didn't have any other scans. I start chemo tomorrow so I'll ask my oncologist.

    How did your first two rounds go for you? Looks like I'm about a month behind you! :)

  • VVV
    VVV Member Posts: 72
    edited October 2018

    Keeks, you should have plenty of time for your genetic results to come back before surgery if you're just starting chemo now. I met with the genetic counselor once and they took my bloodwork the same day after going over family history. It was pretty simple. I'm not sure if they operate differently at other places. I'm also glad I did chemo first because it gave me more time to read about mastectomy vs lumpectomy and really think about it before making a decision.

  • SPDGirl
    SPDGirl Member Posts: 132
    edited June 2018

    I had my first genetic testing 6 years ago as a precaution (I do not have either BRCA gene) and then was re-tested in April due to my breast cancer diagnosis. I specifically asked my Genetic Counselor about 23AndMe and other tests like that as my family had already purchased as a novelty to find out some interesting tidbits. I wanted her opinion in general as I was already definitely going through her for the genetic cancer testing. She said that she thinks those tests are fine with the mindset that we had with the idea of learning fun little facts, but they should not be relied on for important medical diagnosis such as BRCA genes. She said that her office specifically has had several cases now where women are convinced they can't have breast cancer because these tests have indicated they don't have the BRCA gene and they are angry to find out they truly have cancer and/ or a breast cancer gene. They had an additional emotionally challenging case where a woman was ready to have e an elective bmx due to the 23/Ancestry test saying she did have the gene and after they re-tested her, finding out she didn't.

  • Jeremy3
    Jeremy3 Member Posts: 1
    edited January 2019

    Hello!

    My aunt wanted to test her BRCA and I remember she ordered the Futura Genetics kit. We all knew 23andme tests but for some reason she wanted to test with Futura Genetics, and she was very satisfied with the result. You get a lot of information about other risks of diseases and the result are quite fast to come. So maybe that information will help you.

    Good luck!

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

    Hi keeks, I know this is old but just reading now since the bump. I wonder if you got an answer about why they hadn't given you an MRI, what they said and whether it was a good answer, and whether you ended up having one? If you are still around the boards and don't mind sharing :) Thanks!

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