stage 1, grade 2, opting for no chemo?

mamaxs2
mamaxs2 Member Posts: 12
in Breast Cancer #1

Okay.  So I was diganosed with Stage 1, grade 2, BRCA+.  I had a double mastectomy with reconstruction 5 weeks ago.  Healing well.  I was given option of chemo or no chemo.  I had one doctor support a no chemo decision, based on a possible benefit of only 3%.  The medical oncologist is recommending it.  Who would do it based on only 3% benefit, though?  Am I irrational for leaning towards declining it?  I will be on 5 years of tamoxifen and be diligent with all checkups. 

Comments

  • camul
    camul Member Posts: 2,537
    #2
    Hard decision that only you can make.
    There are no guarantees either way. I had one onco say I was overtreated by my main dr for having chemo. She said my risk factor was too low, it would never come back, that my omco overtreated me. My onco said chemo was the best way bcuz it was HRT induced in his opinion I needed it. I did it. That waz 2002. 8 years later, it was back mets to bones, skin, at one point in liver. Have been fivhting it again for 4 years. I dont know that I would have the 8 years w/o having the chemo? I would definately get a second opinion.
    Hugs.
  • VickiSam
    VickiSam Member Posts: 9,079 Member
    #3
    camul said:

    Hard decision that only you can make.
    There are no guarantees either way. I had one onco say I was overtreated by my main dr for having chemo. She said my risk factor was too low, it would never come back, that my omco overtreated me. My onco said chemo was the best way bcuz it was HRT induced in his opinion I needed it. I did it. That waz 2002. 8 years later, it was back mets to bones, skin, at one point in liver. Have been fivhting it again for 4 years. I dont know that I would have the 8 years w/o having the chemo? I would definately get a second opinion.
    Hugs.

    I am right there with Camul ....

    Please try and get a 2nd opinion --  if there is a 'Breast Cancer' Specialist in your medical community - try and get in with him/her.

    Remember this is YOUR life,  YOUR body, and YOUR future.

    Good luck -   taking the time to be proactive in your breast cancer journey - will give you piece of mind in the long run.

    Strength, Courage and HOPE for a Cure.

    Vicki Sam

  • Pixie Dust
    Pixie Dust Member Posts: 424 Member
    #4
    ONCOTYPE DX

    Mamaxs2, Are you a candiate for having an ONCOTYPE DX testing done. Ask you ONC if you are. This test will determine whether you need chemo or not. This is a great test and you can make the decision which should be made.    Pixie

  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #5
    tough call...I am a list

    tough call...I am a list making...pros and cons and then decide...not sure if that will work in this situation!

     

     

  • mamaxs2
    mamaxs2 Member Posts: 12
    #6
    Pixie Dust said:

    ONCOTYPE DX

    Mamaxs2, Are you a candiate for having an ONCOTYPE DX testing done. Ask you ONC if you are. This test will determine whether you need chemo or not. This is a great test and you can make the decision which should be made.    Pixie

    Yes, number was borderline

    Hi, Pixie.

     

    Yes, I did have the Onco DX test.  My number came back 2 pts above deriving no benefit.  So is 2 points worth the chemo?  I tend to think not.  It is just so hard. 

  • mamaxs2
    mamaxs2 Member Posts: 12
    #7
    disneyfan2008 said:

    tough call...I am a list

    tough call...I am a list making...pros and cons and then decide...not sure if that will work in this situation!

     

     

    I did that, too.  And my cons

    I did that, too.  And my cons are longer than the pros.  My gut tells me NO. 

  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    #8
    mamaxs2 said:

    I did that, too.  And my cons

    I did that, too.  And my cons are longer than the pros.  My gut tells me NO. 

    Same Stage and Grade

    But I had chemo, because my oncotype score was high (31 - not really really high, but in the high rate of recurrence score).  At the time (2010) while waiting for the results, I had many friends tell me to do chemono matter what (you know, the non-medical advice).   I was convinced my score would be in the intermediate range and I'd have to make a decision.  It was high - so a no brainer for me or my oncologist.  BUT now that time has passed and I'm disease free and feeling great, and left with permanent side effects from chemo (like lack of hair) I often wonder if I could have skipped it. 

    You might ask about the Taylor RX trial.  It's for women in the intermediate score range on Oncotype score.  Basically, it's random and you either take chemo or not based on the luck of the draw.  The decision is made for you.  You would be helping the future of breast cancer treatments and you will also receive excellent followup.  I know someone who did this.  She ended up in the chemo arm of the trial.  Her score was 11.  Takes the decision making out of your hands, but it takes the decision making out of your hands.  

    And none of this means your cancer will or will no come back. 

    Chemo is nasty stuff, but doable.  I never want to do it again.  Yet I would if I felt it would help the outcome of my disease.  3% is 3% of what?  If your score means (for example) you have a 5% chance of recurrence and having chemo will improve that by 3%, it means you have  a 3.5% chance of recurrence.  Be compiant, get another opinion if you're uncomfortable, make a decision and don't look back.  I know it's hard to do.  I'm glad I didn't have to make a decision.

    Oh, here's a thought. . . will insurance pay for chemo if one's Oncotype score is low?  They're getting a little wierd about things these days.

    Suzanne

  • joannstar
    joannstar Member Posts: 403 Member
    #9
    I was Stage 1 Grade 3

    and told that I had to do radiation after lumpectomy. While trying to digest that, after the surgeries (2nd to get clear margins), I found out that I was triple negative and that I would need to do chemo also. I was not a happy camper, however, I did do 6 rounds of chemo and then 33 rads. Now, 4 years after surgery, I can say that I'm glad I did everything possible to prevent a recurrance. Nothing was fun or easy, but I do not have any regrets (although I sometimes wonder if I should have had a double mastectomy).

    3% is 3%...if the statistics are still correct (which I doubt) then we are each 1 of 12.5% that get BC. From that group, I was 1 of 15% that have TNBC. I didn't feel like I wanted to gamble on not having chemo to improve my odds.

    The question that I would ask is, if you choose not to do chemo, will you "beat yourself up" if you have a recurrance and can you live with that thought?

    I wish you an easy time, whatever you choose.

    Hugs,

    JoAnn

     

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