oh goody!my uncle score is 25, boo hiss

Paulette23
Paulette23 Member Posts: 499


like always I fall into the greyzone....

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  • Paulette23
    Paulette23 Member Posts: 499
    edited October 2013


    onco not uncle!!!!! crazy voice thingie! anyway, suggestions or comments for others who have been classified in the same zone! Like always I'm in the grey

  • mcgis
    mcgis Member Posts: 291
    edited October 2013


    Is that your tumor marker? I'm not sure what we want it to be but I do know that it's all personal and depends on the weight, height,... of the person. You can't compare yours to someone else. Sorry I might not be of any help.

  • MsPharoah
    MsPharoah Member Posts: 1,034
    edited October 2013


    Hi Paulette! Sorry that you landed in the gray zone. Me too! Talk to your oncologist and find out what the recommendation is and what the benefits are versus the risks. Only them can you decide about doing chemo or not. Then get a second opinion because that can be very helpful. My oncotype DX was 24, 16% recurrence rate without chemo and about 12.5% with chemo. I decided to do chemo and had 6 cycles of TC. It was tough, but I did it. I am now doing radiation, growing some hair and getting my mojo back.


    None of the treatment choices are easy to make, but with the right information, you will do what is right for you.


    Love, MsP

  • Paulette23
    Paulette23 Member Posts: 499
    edited October 2013


    thanks....I don't know too much just was told it is dead center in grey zone...one point up chemo one down no

  • MsPharoah
    MsPharoah Member Posts: 1,034
    edited October 2013


    Paulette, your oncologist should give you a recommendation and tell you why. You should not spin a roulette wheel. Let the science and your gut instinct about what is right for you guide.


    MsP

  • Paulette23
    Paulette23 Member Posts: 499
    edited October 2013


    its just frustrating. ...such lack of communication and delays. When I called to set and apologized appointment the other day, they remarked that generally you are scheduled to see the oncologist approx 2wks after surgery. Its been a month and I've had two surgeries and then I had to call myself to set appt. they can't see me till oct 31....mre delays....

  • MsPharoah
    MsPharoah Member Posts: 1,034
    edited October 2013


    Paulette, I am so sorry. I experienced delays too. I was diagnosed right before Christmas holidays last year...lots of doctors and test sites were closed, my insurance initially denied my BRCA test and if you can believe it.....the lab didn't send enough carcinoma to Genomics the first time. I was 6 weeks from surgery before I got my onco score and 7 weeks before I started chemo. My nurse navigator told me to figure a year for treatment and she was right....it will be 11 months when I finish radiation. I know that isn't what you want to hear. Keep advocating for your health and ask them to put you on the cancellation list!


    MsP

  • Lenn13ka
    Lenn13ka Member Posts: 313
    edited October 2013
    Hi Paullette,

    I had a 2 no's 3 yes's for chemo at my facility. I went for a second opinion at one of the best breast cancer research hospitals and got a no so, I went with that. It was a tough choice as I had a positive node and LVI but she said a 1-2% benefit with chemo..my oncotype was 17. She was confident that radiation would take care of the LVI.

    Good luck with your decision. Take your time and get ALL the information you need to feel comfortable with it.



  • edwards750
    edwards750 Member Posts: 3,761
    edited October 2013


    mcgis - The Oncotype test is not a tumor market but a test on your particular tumor(s)that Oncologists recommend when they are ambivalent about what treatment plan you should have. It tells them whether chemo, for example, would be of benefit to you based on your score. Genomic Labs did mine; the tests was expensive but luckily BCBS paid for mine. My score came back@11 and an 8% chance of recurrence. That percentile included taking Tamoxifen following my RADS treatments which I did. Most oncologists recommend the test because they admitted women were overtreated in the past. Not sure what I would have done if my score was 25.

  • Paulette23
    Paulette23 Member Posts: 499
    edited October 2013


    I have so many comorblities....which complicates the whole process. my surgeon said 25 is dead center of the gey zone. another concern I have is why don't they check your whole body? its like they focus on one part and don't think it could be elsewhere! !this whole system is messed up. I have PTSD because of past situations. LONG STORY...but it was not over a simple situation. They almost killed me and it is a miracle I am alive....my MDs actually said that! now I need to try to trust the medical community...!? I am a former medical professional, as is my husband! So this whole situation is becoming more and more frustrating. It is made it very hard to seek any medical care, though I know I do not have a choice at this point. They just keep giving me more double talk! Thank you for everyones input! I'm praying for the best outcome and have learned to trust my heart more than anything!

  • ttly11
    ttly11 Member Posts: 30
    edited October 2013


    I also don't kn what reatments are taken into acct. I had IORT single dose high rad. unable to have long slow dose rad.....they say I need some kind of antihormone med....unsure yet what...soooooo many blanks....

  • Paulette23
    Paulette23 Member Posts: 499
    edited October 2013


    not sure of anything at this point.....thanks for your input.....I'm just left hanging w little explaining of what's going on.....had IORT ON FIRST SURG ...told ill need antihormone something...had to set my own oncologist appt...that won't b till oct 31. just a lot of nothing!

  • Lenn13ka
    Lenn13ka Member Posts: 313
    edited October 2013


    Paulette- it looks like you started radiation. My Mo says no chemo after rads anyways. I hear what you are saying about trust. Both my husband and I were another almost done in by medical screw ups and he is well connected in the field. I keep two MO's and act as a medical consumer. I appreciate All the input but, I don't totally trust any of them. Too many different approaches and answers.


    You will probably be put on Tamoxifin or an aromatase inhibitor.

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