Question on Reoccurance

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Lisey
Lisey Member Posts: 1,053
edited July 2016 in Not Diagnosed With a Recurrence or Metastases but Concerned

I posted this in the Stage 1 board, but it dropped off and no one answered it. I'm hoping someone here can help enlighten me.

I have stage 1A. If I get a reoccurance, does that automatically mean I'd be stage 4 since I got a BMX? If I have no more breast tissue where does it usually return? The oncotype says I have a 13% chance of reoccurance in 10 years...I guess I'm wondering about Oncotype's rate of return. If I have a 13% chance of return... and it returns, is there a way it could be found and I'd only be another stage 1 or 2 or 3 again?

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  • MsPharoah
    MsPharoah Member Posts: 1,034
    edited July 2016

    Hi Lisey, I'm going to jump in here and try to answer your questions. The Oncotype DX rate of recurrence is for distant recurrence, ie bones, liver, lungs, etc. With a BMX, there is always a chance, however small, of a local recurrence because there is generally some breast tissue that cannot be removed. So, to answer your question, after your initial active treatment is complete, a recurrence could be local or distant and you would not automatically be stage 4. A new local tumor would be staged using the same criteria used for your initial tumor. You should socialize your chance of a local recurrence with your surgeon and radiologist. That rate would guide your surgery and radiation decision, whereas the chance of distant recurrence would generally guide the chemo decision.

    Hope this helps, MsP

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  • Lisey
    Lisey Member Posts: 1,053
    edited July 2016

    Thanks Pharoah, so I have if the Oncotype says 13% chance of Distant Reoccurance = Mets/Stage 4... Does that mean I have an even large chance of a local reoccurance? Trying to understand and weigh my options. I've had melanoma and doc feels chemo will do more harm than good. Oncotype says chemo will lower the risk only 3%... to 10% chance to stage 4, which is still is a hard pill to swallow for me. sigh.

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  • Lisey
    Lisey Member Posts: 1,053
    edited July 2016

    Last question on this scoring. I grabbed my sheets and there are 2 different reoccurance models. One is from the NSABP-14 and the other is from the NSABP-20. On one I'm at 13%, on the NSABP-20 I'm only at 10%... Does anyone understand the difference between these two models?

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  • MsPharoah
    MsPharoah Member Posts: 1,034
    edited July 2016

    No, your oncotype does not predict local recurrence at all and you should not assume that your chance of local recurrence is greater than the chance of distant recurrence. Your surgeon, in consultation with the radiologist should be able to calculate your risk of local recurrence. I know that this is a difficult time for you and there are so many treatment decisions you have to make. Rather than focusing on the risk percentage of local or distant recurrence, try, try, try to focus on the chance that you won't recur. As an ER+ BC patient, complying to the anti-hormonals, weight management, healthy eating and exercise are all things that you can do to reduce your risks. There is also ample evidence that low dose aspirin and reduction in alcohol consumption is beneficial. All of these things contribute to overall good health, with little risks associated to them too. The odds are in your favor, hon.

    MsP

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  • MsPharoah
    MsPharoah Member Posts: 1,034
    edited July 2016

    My understanding is that B14 is a trial comparing tamoxifen versus no therapy and B20 is comparing tam+chemo with tam only.

    MsP

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  • Lisey
    Lisey Member Posts: 1,053
    edited July 2016

    Thanks MsPharoah, It's really hard for me because while I'd like to 'throw the book' at this and do everything, I am in the gray zone, may have Luminal B, and because I had a Melanoma DX 6 years ago, the doctor thinks chemo shouldn't be done... so I"m just sitting here trying to make sense of all the numbers and treat it as facts/figures rather than an emotional gut decision. It think the family melanoma gene is a huge factor in not doing chemo. And I'm thinking, ok, so if I get a DM or local reoccurance in 8 years, what are the odds there will be better treatments than there are currently? I'm having to bet on the future of science I suppose.

    I appreciate you answering my question on this.

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited July 2016

    Lisey,

    I wouldn't assume that treatments will be much better in eight years. Most of the treatments for early stage breast cancer are pretty old, except for Perjeta (a targeted therapy for HER2+ cancer). At best, I think we will know more about who will/will not benefit from particular treatments. Also, maybe the scientific community will come up with more targeted therapies (hopefully for those with metastatic BC and triple negative). Eight years isn't very long for the scientific process to work.

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  • MsPharoah
    MsPharoah Member Posts: 1,034
    edited July 2016

    Lisey, this is the hardest part of the process. You are doing your homework and getting good advice, so once you make your decision, don't look back. I went through this years ago and despite conflicting opinions, I am very comfortable with my decisions and that is all that matters. And yes, surely there will be advances in the detection and treatment of breast cancer in the future, maybe even a cure!

    MsP


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  • TwoHobbies
    TwoHobbies Member Posts: 2,118
    edited July 2016

    I am a local recurrence after mastectomy. There are supposedly only 5 to 10 percent of us. So the answer is you can still have a local or regional recurrence. If it recurs in the nodes it is regional as opposed to distant. At the time I recurred, I wondered if the oncotype only predicted distant mets , but one thing I read said low oncotype should also mean low locall recurrence.

    If it is not recommended that you do chemo because of the melanoma you may get the same additional protection by going with an AI. I was told an extra 2 percent. . However if you are premenopausal you'll have to do ovarian suppression to take the AI

    Good luck with your decision

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  • Lisey
    Lisey Member Posts: 1,053
    edited July 2016

    Hi Two Hobbies, yup.. I fully plan on doing a complete Hysterectomy and OOPH if I come back as Luminal B. Anything to lower the reoccurance score so I can be here for my kids.

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