chemo or just tamoxefen

willingtowonder
willingtowonder Member Posts: 1
edited June 2014 in Stage I Breast Cancer

I have stage 2 grade 3  IDC double mastehctomy tumor was 1cm er pr positive very high 99 and 97 her 2 negative but 1 positive node.  I had the oncotype dx test and it came back with a score of 3 for distant recourance and chemo effectiveness. Oncologist suggested chemo and said he didnt pay attention to onco scores if one was node positive.  However I saw a study recently published called Swog 88 where they too 367 women with 1 to 3 positive nodes and gave 147 tamoxifen only and the remainder chemotheraphy and tamoxifen combined and at the 10 yr survival mark those that took chem and tamoxifen had an 87percent survival rate and those that took only tamoxifen alone had a 92 percent survival rate,  Makes me question the effectiveness of chemo and if I should do it at all,,,,,,,,,,Any adivice out there?

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  • somersher
    somersher Member Posts: 13
    edited February 2010

    My surgeon (who is also a personal friend of many years) is on the cutting edge of these issues; I had two of three nodes with micromets but with an oncotype of only 5.  He says it is clear to him from the published research that chemo would do me NO good, so I am at peace not doing it.  If I have trouble finding an oncologist to concur, I'll keep looking.  (I'm 54, 1.8 cm ILC, just finished re-excision since margins weren't clear first time - waiting for path results from that.  ER/PR + and HER2 -)

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  • dlb823
    dlb823 Member Posts: 9,430
    edited February 2010

    willingtowonder ~  One thing you might consider doing is getting a second opinion, and maybe even a third.  Another piece of the puzzle might be to ask for the Tamoxifen metabolizer test.  It would be a shame to count on Tamoxifen as your primary weapon if by some chance you aren't a good metabolizer, and there is a test for that now.

    An oncotype score of 3 is exceedingly low.  I don't know what factors about your tumor played into that low score, but prior to Oncotype-DX recently becoming available to women with some positive nodes, with 1 positive node and Grade 3 bc, chemo most likely would have been recommended for you. 

    I did chemo with 1 positive node after getting 3 very different opinions from 3 different oncologists.  And while it was "do-able," it certainly wasn't a walk in the park for me, and recovering from it -- getting strong again -- took several months longer than I'd anticipated.  So I think it's a decision that bears input from additional doctors, to help you decide what's really best for you.   Deanna

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  • HelenaJ
    HelenaJ Member Posts: 1,133
    edited February 2010

    Willingtowonder - I had isolated tumor cells in two of my nodes, officially node negative and I was able to do the oncotype test and it came back with a 6 - I didn't do chemo.  I too am almost 100% ER & PR positive.  As Deanna mentioned Oncotype has now accepted testing for 1 or 2 nodes positive.  3 is exceedingly low as, even with my score of 6, chemo would have provided no further benefit than tamoxifen on it own.  Maybe your grade 3 is what your Onc may be concerned about.  I also did the CYP2D6 test to see if I could metabolise tamoxifen and I am an Extensive Metaboliser - which settles my fears, especially since I have no side fx??!!!!  To be honest I just had to read as much as I could, ask lots of questions (like you are doing), then sit myself down and decide upon a way forward which I could live with.  I trust Oncotype DX and although I am a born worrier I feel I have made the right decision. Quality of life going forward means not just trying to beat this damn disease but having courage in your convinction in whatever path you choose.

    This is a horrible time, I remember it so vividly and I wish you all the best in your decision making.

    big hugs

    Helena

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2010

    I agree with HelenaJ.  I had Isolated Tumor Cells in one SN.  Oncotype of 11.  IDC 2.2 cm. Studies state Oncotype is used for node positive also. I would have only had a 1-3% benefit from chemo.

    Just a reminder to everyone who is taking the Oncotype.  Please be part of the TailorX study.  Ask your doctor, it is free and we may help thousands of women later.

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  • horsedoc
    horsedoc Member Posts: 512
    edited February 2010

    I'm currently stressed out about this topic.  I am awaiting the results of my Oncotype score; it should be back by the end of this week.   I don't know if I am comfortable NOT doing chemo even if my score is low, given my age (37) and that the tumor was >3 cm.  I know it's very predictable for 10 years but what about beyond that?  (I understand that the research is only 10 - 12 years out so that's why they can only do a 10 year prediction.)

    I love my oncologist so will meet with her again as soon as my PET scan (tomorrow) and Oncotype results are back.  

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  • etk02038
    etk02038 Member Posts: 150
    edited February 2010

    I also am waiting for my oncotype results. I had isolated tumor cells in 1 node also. Good info about Tamoxifen...I didn't know to ask about this.

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  • TNgolfer
    TNgolfer Member Posts: 253
    edited March 2010

    I am also awaiting results of Oncotype Dx assay.  I have done extensive research and will definitely not do chemo if Oncotype is 18 or lower, and it won't necessarily be a given if I am in the "grey area".  With tumors that are ER+, chemo is pretty ineffective.  There is a lot of research out there. I would encourage all to find as much info as they can.  Estrogen is a hormone and hormone therapy makes more sense than chemotherapy for er+ tumors. 

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  • icey
    icey Member Posts: 141
    edited March 2010

    Dear TNgolfer, I will second what u said. All research points to homone therpy being more effective than chemo. But if u are brave enought u can have both. But I am scared of chemo side effects. My onco score is 22 intermediate so I am will to take my chances with radition and hormones. Good Luck Icey

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  • bcincolorado
    bcincolorado Member Posts: 5,758
    edited March 2010

    My score was 9.  My onco said that the benefit of adding chemo would reduce my rate of recurranced by 2% and you had to take off at least 1% from that becuase of the risks of chemo.  He works at a major cancer center in town and has a good reputation.  He said he would NOT give me chemo even if I begged him for it since it wouldn't be to my benefit.

    I say you need to know your score, get it explained to you (my BS gave me a copy even) and make decisions from there that is best for you. 

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited March 2010

    according to oncotype the prognosis for one node and no node is very similar...they call it statistically insignificant. IE having one node is not great, but it's not very different in mortality vs. oncotype.

    This is pretty new stuff, some onc's belive in playing it safe.

    Please get a second opinon. Montefiore hospital in the bronx has an expert on oncotype, Dr. Sparano I think, who will do phone consults I believe. It's worth a try.

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  • mollytroutman
    mollytroutman Member Posts: 3
    edited March 2010

    Hi!  I am new to this discussion; I found out about this on December 24, 2009.  I had surgery on January 21 and had the Onco Test and my score was 26.  I need to  make my decision very soon (like today or latest tomorrow) on whether I want to do Chemo.  I am very torn; I just don't know if I will benefit from it given the risks I feel I would be taking.  My tumor was 1.5  ER+  and HER-.  My concern is that everything that I am reading is that most women in my category are opting to have the Chemo as well as the radiation and hormone therapy.  Anyone with further thoughts.

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  • dlb823
    dlb823 Member Posts: 9,430
    edited March 2010

    Wecome, Molly ~ So sorry you're joining this club that none of us ever wanted to be in, but you've found a great place for information and support.

    There's a thread here that might help you with your decision.  It's called New Oncotype Roll Call.  I'll try to give you a link to it:  http://community.breastcancer.org/forum/69/topic/730468?page=11#post_1598080

    If that link doesn't work, go to the Forum Index above and scroll down to the Chemotherapy section.  You'll find it there.  There was also an older one that got very long,  If I can find it, I'll bump it for you as well.

    The only other bit of advice I can give you is be sure you know which chemo is being recommended for you.  Not all oncologists recommend the same ones, and this is something you should read up on and ask questions about if you decide you are going to do it.      Deanna

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  • mollytroutman
    mollytroutman Member Posts: 3
    edited March 2010

    Deanna:

    Thanks for the link and information; it was very helpful.  I was so hoping that my Onco test would not be in the range it was.  It seems I am always hanging in the middle of the scale.  Again thanks for your post and link.

    Molly 

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  • mollytroutman
    mollytroutman Member Posts: 3
    edited March 2010

    Hi!  I an new to all of this but my Onco Test was 26 and I am in the "unclear" zone of benefits vs. risks.  I really don't want to have the chemo. as I don't know how much it would benefit me.  It is a very difficult decision to make.  I am leaning toward radiation and tamox. 

    Thanks for sharing all this information; it is helpful to read what others are thinking and feeling.

    Molly

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  • dlb823
    dlb823 Member Posts: 9,430
    edited March 2010

    Molly, here's another on-line calculator that might add to your thinking on what to do...

    http://www.lifemath.net/cancer/

    Also, just a heads up that when you first join BCO, you're limited to 5 posts per 24-hour period.  This is done to prevent spamming, but at the same time, can be very frustrating when you're trying to figure out something as important as you are.  If you need to, you can continue a conversation with anyone here with the Private Message feature (PM).  Click on their screen name and it will take you to a page with that feature.      

    No one ever wants to do chemo, but one school of thought on breast cancer that many of us share is that it's important to hit it with everything we can initially, to hopefully prevent a recurrence, especially a metastatic recurrence.

    Have you thought about maybe getting a second opinion?  I know with my treatment decisions, it was always helpful to talk to a second and sometimes a third oncologist (or surgeon or radiation oncologist, depending on the step).  Sometimes you just need that one kernel of information that will help to crystalize your thinking on what's right for you.   Personally, although my dx may not have been the same as yours, I was extremely anti-medicine.  But I finally decided that I never wanted to wake up with a recurrence and always wonder if doing chemo would have prevented it.  But it took me weeks to get to that decision.   Deanna   

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