Want to play oncologist for me? Chemo - yes or no

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KatherineNaomi
KatherineNaomi Member Posts: 104
edited June 2014 in Managing Side Effects of Breast Cancer and Its Treatment

I don't see my oncologist for the first time until next week but I'm hoping you'd be willing to share your opinions/advice while I anxiously await the appointment. As you can see below I had a BMX for a 1.3cm IDC with micromets to one node, (.45mm) grade 1, no lymphatic invasion, ER+ (38%), PR+ (61%), HER2 -. I assumed I'd probably be doing chemo but I just got my Oncotype DX score of 13 today at the BS office. That gives me an 8% recurrence rate over 10 years with Tamoxifen which seems pretty low. From my understanding those with a low recurrence score don't benefit as much from chemo. I certainly will do chemo if it's warranted but I don't want to do it just for the sake of doing it, you know? Does my micromet make it more necessary? I know the ladies here are pretty well researched on all things BC and I'm just curious what your take is on my situation. Thanks!!

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  • daisey4ever
    daisey4ever Member Posts: 1
    edited August 2010

    Hi Kate,

    Sorry you have to join this sorry club.  I was diagnosed in May 2008 with IDC Stage 2b 4/10 nodes ER+PR-HER2-. My tumor was a little over 1 cm. I had two surgeries (Lumpectomey in June /July 2008 to acheive clear margins then on  to 6 chemo treatments of Taxotere/Cytoxene and after completing that 33 radiation treatments to the left breast. I currently take Tamoxifene daily and will for up to 10 years depending. I do not know if your micromet would mean chemo but the standard of care I believe does include chemo to ensure all cancer cells that were missed are killed. I hope this answers some of your questions as our diagnosis is similar.  Do not let it get you down.  There is light at the end of the tunnel and it only makes you stronger as a person.  Give us a holler with any questions you have as we are all knowledged in the world of BC.  Best Wishes to you. Daisey

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  • Isla
    Isla Member Posts: 82
    edited August 2010
    Hi Kate I hope that I manage to put what I am trying to say to you into the right words-  making such monumental choices isn't easy.  With all the availability of statistics, life span predictions etc I found that, at times I was focussing too much on 9% this, 15% that.  My son opened my eyes when he said, "but it isn't really that Mum, it's really a binary choice - you live or you die " It is immaterial if the odds on you dying from a specific type or grade of cancer is only a small %age, if you happen to be the wrong side of the goalposts.  I'm not denigrating the statistics - currently they are about the best tool for management choices but I do think that sometimes Drs get too hung up on them.For me the bottom line was being able to say that , at this point in time I did everything possible to maximise my survival.  In Dr Susan Love's Breast book she writes of patients who will undergo chemotherapy for a 1% increase in their survival rate - the decision in incredibly personal. Here in NZ they place less emphasis on the various scores.  I don't want to speak out of turn but have a feeling that the US emphasis is somewhat tied into your health insurance system whereby over and above a certain magic number your insurance companies will pay.  Here, where treatment is free I think assessment is perhaps more 'case by case'I note your diagnosis, your young age and your 1 positive node.Putting myself in your shoes, personally I'd be doing chemo.  I am currently undergoing chemotherapy ( AC which is often referred to as one of the nastier regimes)  For me it is very do-able and I'm just past the halfway markOne further test you may wish to consider is the CYP2D6 test to see what type of tamoxifen metaboliser you are.  That might be a factor in your decision.I wish you the very best with your deliberations and with whatever treatment you decide <<hugs>> Isla 
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  • BarbaraA
    BarbaraA Member Posts: 7,378
    edited August 2010

    KN-I had a micromet in one node and an OncoType score of 17 BUT I am 58 years old. I made the decision for no chemo because of that. If I were your age I would be struggling much as you are now to decide what to do.

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  • revkat
    revkat Member Posts: 763
    edited August 2010

    I'm with Barbara on this. If you were 50+ I would say no to chemo. But you are so young. And the fact is that most bc research is on postmenopausal women, so there are still a lot of unknown about the benefit of different treatments for younger women. On the one hand, there are those micro-mets. On the other, they are only micro-mets and your oncotype score is so low.

    If I were an oncologist, my best guess would be that faithfully taking your tamoxifen would have far greater value for you than chemo. If I did suggest chemo I would go with CMF, which although older is thought to work better on the low grade cancers or with some other form of milder chemo. 

    Hmm, this being an oncologist is harder than it looks! 

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  • KatherineNaomi
    KatherineNaomi Member Posts: 104
    edited August 2010

    Thanks for the responses! :) I'm glad I'm not the only one that doesn't see a clear cut answer. On the one hand a 34 year old with a tumor above one centimeter and a positive node screams chemo to me. On the other hand the low Oncotype score seems like chemo may not be very effective on my individual cancer so it wouldn't be a worthwhile option. Hopefully my oncologist is much less ambivalent, lol.

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  • badger
    badger Member Posts: 34,614
    edited March 2011

    Edited to redact a post with personal information.

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  • sarabhealed
    sarabhealed Member Posts: 179
    edited August 2010

    I think the most important thing is for you to end up comfortable with your decision and the struggle for information is a part of that process. Best of luck and I'm sorry a young mother--or any of us--has to go through this and I am confident you and your doctor will reach the decision that is best for you. Personally, I also had a micromet and an onc score of 14--tumor size 5 cm--and I'm 54 years young. I am totally comfortable with passing on the chemo as was my oncologist. I'm sure I could have handled the process...I just know that for many women the ongoing side effects and health concerns that it creates needs to be factored in the risk/benefit equation and I decided to pass. I do find research on the importance of exercise, weight control and diet to be compelling and decided to focus my energies on that instead.

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

    With a larger tumor and no nodes I did not do chemo, with the blessings of my onco....actually the encouragement.  With some node involvement though I don't know.  I wish you best.  I know the waiting and all the decisions are the worst part of this whole journey.  Once we all know what we are dealing with then we can process the information and start to manage our health and get back to "normal" again.

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  • KatherineNaomi
    KatherineNaomi Member Posts: 104
    edited August 2010

    Hi, just thought I'd add an update. I met with the oncologist yesterday and she's recommending 4 treatments of Taxotere and Cytoxan. Despite my low Oncotype score she feels that my age and positive node trump that and I agree. If I were to have a recurrence I'd hate to look back with regrets. At least now I'll know that I threw everything at this that I can. I start next Friday, the 27th. Already shopping for hats and scarves. :) Thanks again for your insight.

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  • nancyh
    nancyh Member Posts: 2,644
    edited September 2010

    I'm slow to chime in here, but I would absolutely go for chemo given your age.  Back in my day (ha, feels strange saying that), anyone under 35 with IDC got chemo, even if nodes were not involved.  Good luck, hope chemo goes smoothly and soon your breast cancer will be a distant memory.

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  • KatherineNaomi
    KatherineNaomi Member Posts: 104
    edited September 2010

    Thanks for your thoughts. My oncologist and I did decide that chemo (TCx4) was the way to go. I'm half way through my treatment and doing well. :)

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