Numbers games

I’m no math genius but I always thought numbers should make sense and be orderly and neat.  I had my genetics counseling/testing meeting yesterday and honestly, I wish I had skipped it.  I have never felt like a doctor was rooting for the cancer until that moment. Having been given all the “stats” I came away with we are hoping for a positive BRCA  because a negative is basically meaningless and would mean convincing others in the family to be tested until we get the desired (??) results of a positive. The pros and cons of testing were laid out, it was suggested I postpone radiation (not gonna happen) until the results are in. I pointed out I would be more than halfway done by then. I was told results had to be given in person (did I mention I will be in the middle of radiation at that time?). I was told if I’m positive my risk for recurrence is 4-10.3%. My current risk for recurrence after treatment is 10%.  I’m supposed to have a mastectomy based on an increased risk of .3%.  This was when then numbers started swimming in front of my eyes Image.   I’m okay with having an oophorectomy based on increased risk of ovarian cancer but I already have, and am dealing with, breast cancer.  Lynch syndrome was brought up. Apparently I am not at risk but someone, somewhere in the family might be based on more numbers and statistics. I was starting to feel responsible for getting family members to be tested based on stats and probabilities. How would those conversations with the more distant relatives go? “I’m not sure you remember me, but I have breast cancer and I think you should be tested for Lynch Syndrome. What? I have no idea. Look it up”. At the end of all this counseling I was asked how I would proceed with my treatment if positive. I said exactly as I am now.  Then I was asked if I wanted the test while the person asking was nodding their head in the affirmative.  I found myself agreeing and before I knew it I was in the lab.  The very second my blood was drawn I started regretting it.  I really wish I had slept on it. I may have still gone along, but I wish I had thought it through, discussed it with my oncologist or just tried to let the numbers settle a bit.

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19 comments

  1. Laura Renegar · June 19, 2012

    If you are still unsure about the test ask them to hold off on the actual test. So far they have only drawn blood. The results will take weeks so you can stall the process at any point. Food for thought…my brca test came back positive the day AFTER my lumpectomy. Had it come in a few days earlier (the insurance co was going back and forth about paying for it) – I would have handled my surgeries etc differently. Looking back now I just know that my story unfolded as it was supposed to and that is that. My cancer was very aggressive and growing by the minute (you know the old saying “I could FEEL it growing in there!”)…..just tell them to slow down on the testing until you are sure that is what YOU want. Your stats for recurrence if it’s positive are not that different from if it’s negative. Jeeze. Mine were like 80% chance of recurrence in the breast and 48% in my ovaries. My decision for a bilateral and having my ovaries removed was a slam dunk….yours – not so much ! Take your time and let your mind absorb this before moving forward. No rush here. You are the one in control !

    Like

    • mainelyhopeful · June 19, 2012

      You are the one in control !

      I certainly felt that way until yesterday!

      I was just rereading the paperwork before it goes to the burn pile and it clearly states I can change my mind right up until the blood is drawn.

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  2. jelebelle · June 20, 2012

    Hmmmm o was just about to schedule my genetic testing. I don’t think it will effect my treatment as it’s advanced & I already took the boob off, but my sis wants to know and she has shitty insurance. Health care in America. Good luck with whatever you choose to do. Hope radiation is going as well as it can. xo

    Like

    • mainelyhopeful · June 20, 2012

      I thought I could get tested and know for sure one way or another if my sister and daughters had to worry. Apparently if I’m negative that doesn’t mean my sister can’t be positive since we each carry the risk based on family history, but my daughters wouldn’t have to be tested. Except there is cancer on their father’s side too, so who knows? It’s a mindfu.. Radiation starts next week and I’ve been in the garden, sporting a nice sunburn. oops

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  3. breastcancerat40 · June 21, 2012

    Hi there, I just went for genetic testing today…..it’s gonna take 6 months for me to get the results! I know what u mean….after I had my blood drawn I started having doubts….but I’d rather know than not. Enjoying reading ur blogs….take good care.

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    • mainelyhopeful · June 21, 2012

      6 months!? I hope they are not asking you to delay your treatment in the meantime.

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      • breastcancerat40 · June 25, 2012

        No my treatment goes on as planned. The only thing the testing will allow me to do is decide whether I want to have my ovaries out (if I’m carrying the gene), and if I want to have my breasts removed. Alternatively, if I’m positive, they will do MRIs on my boobs every 6 months I think.

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    • onwardandupwardblog · June 25, 2012

      6 months isn’t accurate, sounds like someone gave you bad information. There is only one lab in the U.S. that does that testing…Miriad Labs (sp?). Both UW Madison and Mayo clinics both told me it would take 2-3 weeks. I would push for better information if I were you. Good luck in your treatment. Wishing you the best. I’m 38 and just diagnosed a few weeks ago, so I’m on the same journey. 🙂

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      • mainelyhopeful · June 25, 2012

        I was told 3 weeks too. Good luck with your testing/treatment. Just starting out can be overwhelming.

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        • onwardandupwardblog · June 25, 2012

          I agree…they throw so much at you so fast…it IS overwhelming! Good luck with your test results and the rest of your treatment…sounds like you are doing well and kicking its butt from what I’ve read. Keep it up!! 🙂

          Like

      • breastcancerat40 · June 25, 2012

        Oh wow really? This is Canada though…..

        I wish you so much peace and positive energy in your journey.

        You will be ok.

        Hugs.

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        • onwardandupwardblog · June 25, 2012

          Update…I had my blood drawn on June 14th and I received my results today! I don’t have the gene mutation!!! Woot! Woot!

          Canada…hmmmm, with so few labs running those tests maybe there is a chance it is being processed here in the states. Worth the question anyways.

          Good luck to you…praying yours is negative as well. Sending you peace and positive energy as well.

          Every step is a step onward and upward, no matter how small a step you might take! 🙂

          Like

    • mainelyhopeful · June 25, 2012

      So glad yours is negative!

      Thanks for the kind words, ladies. I hope your treatments go as well as mine have.

      Like

  4. sarenaperez · June 25, 2012

    I did genetic counseling at the very beginning of my diagnosis and had very different experiences.
    Yes there were a lot of facts and figures thrown out there and we discussed the possibility of being BRCA positive/negative and the possibility of lynch syndrome. But one thing the geneticists said to me has stuck with me : that 75% of all cancers are sporadic. I was BRCA neg and neg for lynch syndrome. My mother told my sister and she also was tested but I feel no responsibility to call every member of the family and extended family and tell them to get tested. I would perhaps just share it with your immediate family – sisters, mother perhaps aunts and cousins too. Also you can enlist other family members to help support you in that task too since it can be somewhat daunting. Perhaps your mother or sister could call the family for you?

    Sarena

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    • mainelyhopeful · June 25, 2012

      I’m in touch with most of my cousins and will share whatever information I have with them. If they want to involve their parents for more information or possible testing (the doctor I spoke with was adamant that the older generation be tested..they are all in their 80s in and in various stages of health). Beyond that, I really only want to know if I could have passed this on to my daughters.

      Like

  5. Lilly · June 26, 2012

    Hi: I read all through your blog tonight and enjoyed it so much. I am sorry you are going through all of this but I love your blog. You are awesome. I just had surgery last August to remove a boob. Breast cancer is a nightmare. I was fortunate and did not have to go through chemo or radiation, blessings I am grateful for every day. I take anastrazole (sp?), an estrogen inhibitor…will be taking for next decade according to my oncologist. I was so overwhelmed by the genetics stuff and all of the statistics. I have an online store too and was so dazed for some time I ordered too much and lost things! It wasn’t chemo causing my fog…just nerves most likely. The whole ordeal is just unreal somehow. Reading your blog really helped me and I want to thank you. I really love your spirit and I appreciate your blog. I am now a follower! I send you love and the best of wishes. I am cheering for you.

    Like

    • mainelyhopeful · June 26, 2012

      Thank you for the follow and the kind words, Lilly. I hope your recovery is going well. Almost a year for you!

      Like

  6. Off My Chest · June 27, 2012

    As usual I’m left with a laugh on my face….

    Like

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