The Dreaded Grey Area - What to Do?

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The Dreaded Grey Area - What to Do?

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  • StillTracy
    StillTracy Member Posts: 10
    edited May 2008

    I need advice! Just received my Oncotype DX score and like almost everything, I am a "grey area" when it comes to deciding chemo or no chemo.  I am 44, pre-menopausal, had 1.5cm IDC tumor on left breast with multiple small DCIS around (calcium clusters). Stage 1, grade 1 tumor, E+, P+, HER2-.  After 7 biopsies since age 40, I chose to have a double mastectomy (right side prophylactic) with immediate SGAP reconstruction.  I was hoping by being aggressive with my surgery, I would avoid chemo.  I am four weeks post-surgery.  My Oncotype came back as 21, intermediate, with my risk of recurrence at 13% over ten years.  I am getting married in two weeks to a wonderful (but much younger) man.  We wanted to have a child together (have a great one of my own whom we both love dearly), but that is looking less and less likely.  I am meeting with my oncologist next week, but I want to be armed with as much info as possible.  I was really hoping my score would be low and take me out of this "grey area", but not the case.Anyone in a similar situation, and what did you choose?  Chemo with Tamoxifen?  Just Tamoxifen? Thanks so much for any advice. 

  • nosurrender
    nosurrender Member Posts: 2,019
    edited May 2008

    If you are Er/PR+ and stage 1 and GRADE 1, that means you do not have an aggressive tumor. You cancer is very slow growing. With the bilateral surgery, your onc could recommend just endocrine therapy, which is Tamoxifen and when you are post meno, aromatase inhibitors like Femara and Arimidex.

    The only thing that may give your doctor pause is your young age and your "intermediate" onco score. They may want to be extra cautious to  make sure any and all cancer cells are destroyed by some type of chemo.

    Gray areas are the worst. We have enough to absorb and learn. Sorry you have to deal with this on top of everything else.

    hugs

  • StillTracy
    StillTracy Member Posts: 10
    edited May 2008

    Thanks for the good thoughts, nosurrender.  From what I've been reading, chemo doesn't seem to have a large impact on E+, P+,HER2- cancer, according to the latest studies, so I'm looking at an improvement in recurrence rate of maybe 4% over ten years.  It is just such a hard decision to make!

  • FLtricia
    FLtricia Member Posts: 140
    edited May 2008

    I had same pathology.1.5 IDC, ER/PR+, HER2- Stage 1 Grade 1, with a microscopic second area.  I had a left mastectomy, and the surgeon was very encouraging.  He didn't think I'd need chemo.  Oncologist also said no chemo, even put me on Aromisin while oncotype testing was being done.  Mine came back 23 with a 15% chance.  I am in my 50's.

    At that point it was left up to me (though onc. said now he would recommend chemo).  I decided to do the chemo, (CMF) and my husband and children were happy I did. 

    I finished 15 months ago and honestly to this day I sometimes second guess my decision.  I also read where the advantages of chemo are small, etc.  But I must say, on those days when the fears arise, I am always happy I did all I could to prevent it coming back.

    Write down your questions, do on-line research, pray if you are so led, then follow your instincts.  In the end, this is a decision you have to come to on your own.

    Best wishes to you as you continue this journey. 

  • StillTracy
    StillTracy Member Posts: 10
    edited May 2008

    FLtricia,

    Thanks for your response.  If I may ask, how long did you do chemo and how did it affect you?  Were you able to continue most of your normal life, or did you have to give up a lot?  I am concerned for my time with my 11-year old, my upcoming marriage, and I have always been very active in tennis, etc.  I just don't want to have to make a huge sacrifice for a hypothetical 4% reduction in recurrence, but I don't want to have to second guess myself either...

  • ICanDoThis
    ICanDoThis Member Posts: 1,473
    edited May 2008

    I have the same pathology, 1.5 IDC, ER/PR+, HER2- Stage 1 Grade 1.  I'm almost 60 and post-menopausal.

    Don't forget that wonderful thing, the second opinion.

    Neither oncologist I consulted even wanted to run an Oncotype test, because they were so sure of what the results would be.

    Both told me that they wouldn't recommend chemo, that the potential side effects simply weren't worth 4%.  I've a history of serious drug reactions, and will be having a knee replacement soon.

    I was told that lifestyle changes - i.e., losing weight and exercise, would provide as much protection as chemo. 

    That's my experience, for what it's worth.

    Just be sure that you feel comfortable with your decision. You are the only one that matters.

    Keep us posted.

    Sue

  • wishiwere
    wishiwere Member Posts: 3,793
    edited May 2008

    Most women have a fear inside after all tx that it will come back with every different pain or ache and even the normals ones we have previously make us stop and wonder.  Are you the type that will worry in excess or one that says, it's done and moves on after a decision?

    As for chemo or not.  They will most likely suggest you do either tamox (takes the place of the er recep cells on any cancer growing) or an aromatase inhibitor that keeps ER from being produced by the adrenals when your ovaries stop working (post-meno's only).  Either one you will be advised to NOT get pregnant while taking it.  It's a 5 year time frame which will make you 49 when you are done taking it.  Are you willing to risk chemo and these after tx for the sake of having another child?  I'm not trying to say to do one or another, but your tumor was rather sizable and what if?????  Just more greys to think about.

    It's a very hard decision.  I will say for many reasons, I did do chemo, life continued, albeit a bit slower but I had 4 round of A/C every 3 weeks and it was definitely NOT the old standard in ways of Side effects people used to have.  Read, ask questions and read more.  and then be comfortable with YOUR decision.

    Good Luck and {{{hugs}}} prayers too.

  • otter
    otter Member Posts: 6,099
    edited May 2008

    StillTracy, none of us can answer your question for you, as you know.  You are in one of the worst possible situations--not knowing whether chemo will do you more good than harm.  It's too bad we can't all be put into cryopreservation or something, and wait for the results of the TAILORx clinical trial, which is supposed to put all this to rest.

    My 1.8 cm IDC was ER+ PR- HER2- (well I guess you can read that in my sig line).  I had Oncotype testing done, and my recurrence score was 26.  That gave me a 17% chance of recurrence, and chemo would reduce that by about 1/3 (to around 12% chance of recurrence).

    I tried to prepare myself ahead of time so that I would know what Oncotype score would motivate me to choose chemo (if given a choice).  I figured that a score less than 18 would be safe...well, not really safe, but at least the risk of recurrence was fairly low, and the benfit of chemo was also low.  Anything above 30, of course, meant I was chemo-bound.  My "grey zone" was between 18 and 30, which (not ironically) corresponds to the "intermediate risk" zone as defined by Genomic Health for the Oncotype test.

    As my first oncologist put it, "We just don't know what to do with scores in that range."  That's why there is a big clinical trial underway to test whether women with intermediate scores (actually, the trial is testing scores between 11 and 25) benefit from chemo.  If it were 10 years from now, we'd know the results.

    In the meantime, with a score of 26; a tumor that was almost 2 cm, Grade 2, and  PR- (although ER+); and my oncologist proclaiming that I was "not old"...I am getting chemo.  My chemo regimen is Taxotere & Cytoxan (recommended by my 2nd onco after I fired the first one because of a personality conflict).  I just finished my 3rd of 4 treatments (at 3-wk intervals) this past Wednesday.  Chemo is "hard", but it is definitely do-able.  Each chemo regimen has its own profile of side effects and long-term complications, so be sure you get answers to all your questions before you make a decision whether to have chemo and what regimen to get.  IMHO, a good oncologist will make a recommendation but will then discuss your personal circumstances and medical history to be sure his/her recommedation is appropriate for you.

    otter

  • Harley44
    Harley44 Member Posts: 5,446
    edited May 2008

    Hi there...  I had an Oncotype score of 28, oh my!  I decided to get chemo.  I had 4 tx of Taxotere & Cytoxan.  I am glad that I did.  The way I look at it, I had to make sure I did everything I could to prevent recurrence.  I was dx'd a month before my 44th birthday, and my surgeon said that since I was so young, I had MORE years for it to recur, so I should hit it with the big guns, you know, give it your best shot.  As he told me, "Now, I took it out, but if it were to recur, somewhere else, surgery wouldn't be an option." 

    This is not to scare you.  But, you are also young, and I think that is also in our favor. 

    But, you have to do what YOU think is best.  For me, I knew that if I didn't get chemo, and something were to happen later, I would never forgive myself.  I only have this ONE life, and I have to do the best I can.


    Good Luck to you!  Please keep posting and let us know how it goes.

    Keeping you in my prayers,

    Harley

  • StillTracy
    StillTracy Member Posts: 10
    edited May 2008

    Thanks to everyone for their replies.  At the moment, although the consensus here seems to be chemo positive, I am leaning towards Tamoxifen only.  I really feel like I need to get back to a normal life for my son, my fiance and myself, and I hope I won't have any regrets.  I'll keep you posted on what I decide...thanks again for all of the support! 

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