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chemo for 2% benefit??

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ailuj9
ailuj9 Member Posts: 7

Would you undergo chemotherapy for a 2% benefit?

Backstory: 40-year-old female diagnosed with invasive ductal carcinoma. Patient will begin lupron and aromatase inhibitor to put herself in early menopause to give a 9% risk reduction of metastatic recurrence (thus a 91% chance she will not have metastatic recurrence). If she undergoes chemotherapy, she increases her risk reduction by 2% (93% chance she will not have metastatic recurrence).

She would undergo taxotere and cyclophosphamide ("TC") every three weeks for four rounds (12 weeks total). The main side effects are neuropathy, hair loss and "chemo brain" which can be lessened with wearing cold booty/gloves and cold capping during chemo.

Thank you for your thoughts.

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  • sunshine99
    sunshine99 Member Posts: 2,693
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    ailuj9, is this for you or for someone else?

    My background was that when I was diagnosed the first time, I participated in the TailoRx Study and was randomized to get chemo. I was actually glad, because I wanted to throw everything possible at the cancer to prevent a recurrence. I did not have radiation since I had a mastectomy and no lymph node involvement.

    Now, 12 years later, I have Stage IV with mets to my bones. Had I NOT had the chemo, I think I would have taken some of the blame for getting cancer again. My RO (who treated me this time with palliative radiation) reminded me that the study showed that people with my Onco-type score (I think it was an 18) do not benefit from chemo.

    I guess it's all just one bit crap shoot. Some of us get cancer again, some don't. There are no guarantees. The benefits, risks and SEs need to be weighed and decided on by the person with the cancer.

  • ailuj9
    ailuj9 Member Posts: 7
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    @sunshine99

    me. But written in third person to try and stay objective.

    I am sorry about your mets. thank you for sharing your journey with me. I really appreciate it. Hugs warrior!!

  • moth
    moth Member Posts: 3,293
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    Are those numbers from your oncotype?

    I'd suggest putting your stats into Predict https://breast.predict.nhs.uk/tool

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

    I had AC+T during my 1st stage treatment and never regretted it. I didn't cold cap because for me hair is irrelevant & I didn't have brain fog. Neuropathy is way more of a concern but risk can be managed. At the end, for me it was well worth doing chemo. Now I have no choice as it's keeping me alive.

    Remember that these prediction curves are for 5/10/15 years and most 40 year olds are hoping to be alive longer than 15 yrs. The risk of recurrence for hormone positive cancer continues beyond 20 years according to latest research so

    Also it's hard to predict your adherence to hormone therapy. Many people take these meds for years just fine but they have a lot of side effecs and there are a lot of women who stop hormonal suppression early. Having done chemo gives a bit more wiggle room in the risk analysis if that happens to you, kwim?

    But only you can decide if it's worth it to you. Chemo is serious meds and can have lifelong side effects as well so you need to assess what you're willing to live with. If you don't do chemo and have a metastatic recurrence will you be regretting it or are you a don't look back/have no regrets person?


  • ailuj9
    ailuj9 Member Posts: 7
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    Moth, the states are from RSClin that take into account Oncotype AND tumor size/grade. MathLife does not take into account oncotype, which is supposedly predictive. Predict data is below. Both are good tools. Thank you for linking them to the thread.

    I have not done hormone therapy yet, but appreciate your notes about adherence. Additionally, I wasn't aware about the risk of recurrence for hormone positive cancer continuing beyond 20 years per latest research, but this makes sense.

    Thank you JavaJane for the reminder about crunching numbers.

    Appreciate all your thoughts. Truly. In the end, Cancer sucks and I hate this for all of us.

    Here is my Predict data:

    Overall survival: 87%. + Hormone therapy 90% (~3.3%. 2.0-4.2%); + chemo 92% (~1.6%. 0.9-2.2%)

    (it's not letting me delete the table and the table is not showing. oh well

    TreatmentAdditional BenefitOverall Survival %
    Surgery only-87%
    + Hormone therapy3.3% (2.0% – 4.1%)90%
    + Chemotherapy1.6% (0.9% – 2.2%)92%
  • OnTarget
    OnTarget Member Posts: 124
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    I made 5% my cutoff. Even though I had minimal SEs, they are still there. My legs still don't feel right, and I have a little neuropathy.

    I'm happy I did it for 5%, I wouldn't do it for 2%.

  • ailuj9
    ailuj9 Member Posts: 7
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    Thanks, OnTarget. I think I am going to make 55 my cut off too. Appriciate all your thoughts and sharing.

  • buttonsmachine
    buttonsmachine Member Posts: 339
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    ailuj9, perhaps I missed it, but what is your Oncotype score?

    The reason I ask is that chemo tends to work better on very rapidly dividing cells. I see that you have a grade 2 cancer. Sometimes with lower or intermediate grade cancers, the chemo actually doesn't affect those cancer cells as much, because they are not dividing as quickly as some of the more aggressive cancers (i.e. grade 3, high Oncotype cancers). But your cancer is grade 2, so you might be in a gray area in terms of benefit. That's why I asked about your Oncotype score.

    Anyway, here is the way I look at it: depending on our individual cancers, chemo may or may not offer significant benefit. But chemo will definitely cause harm. I personally would not do chemo without a clear benefit. Maybe your oncologist can help guide that decision more too, but that's my two cents.

  • muska
    muska Member Posts: 224
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    What does your medical oncologist recommend? Have you gotten a second opinion - from a medical oncologist?You are very young by cancer standards and the treatment you get now, should last you as long as possible. I am not sure any of the tools mentioned rely on more than 10-15 years of research data. You however, want to live without cancer for much longer than that. I personally would listen more to medical oncologists with a lot of experience than to various calculators.

    Speaking of chemo side effects, at your age and assuming overall good health you may have very few or no side effects. You could discuss a different chemo regimen if there's a particular concern.

    Good luck with your decision!

    Noticed you only had one node checked? What kind of surgery did you get?

  • ailuj9
    ailuj9 Member Posts: 7
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    My OncoDx score was 20

    I only had the sentinel node checked. It was negative.

    My oncologist is NOT recommending any particular treatment and leaving The choice to me to my dismay. I had a second opinion and that oncologist recommended aggressive hormone therapy > chemo based on studies--tayloRX, soft, text, and my RSclin score.

    I am a very data driven person and am going to move forward with radiation and aggressive hormone treatment. Thank you!!

  • kathabus
    kathabus Member Posts: 45
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    My MO emphasized that, too--that the ovary suppression with AI was the biggest benefit for me....sounds like for you, too. More benefit than the chemo. Essentially, the AI IS my chemo. That's how I kind of made peace with it. It was hard for me not to throw the kitchen sink at this....but ultimately I felt like I followed the science.

    Just wanted to validate your treatment plan. I had the same advice with a positive node.

  • buttonsmachine
    buttonsmachine Member Posts: 339
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    ailuj9, since you are data driven, I would delve into it more with your current MO, and also your second opinion MO. Ask them to explain their reasoning.

    For example, even though I was Stage 1A and node negative, even in the beginning I was only something like 70% ER+ and 80% PR+, with a Grade 3 cancer, and an Oncotype of 32. Everything about my cancer was nasty and indicated chemo, which I did. But my point is this: even in the beginning I had a subtype of hormone receptor positive breast cancer that was not fully reliant on hormones, and because of that, hormone medicine has not always worked for me. All of my recurrences have happened on hormone therapy. An MO would later tell me that my subtype behaves somewhat more like a triple negative cancer, actually.

    So in your case, your doctors probably have some idea about the nuances of your cancer, and how it will likely behave. Will hormone therapy be effective for you? Will chemo be effective for you? Our individual breast cancers are so different that what works for one person here may not be applicable for you. For those who are 100% ER+, with lower grade cancers, hormone therapy often does work better than chemo. For others, (like me) not so much. It really depends.

    Best wishes whatever you decide, but I hope that gives you something to think about for when you talk with your doctors.

  • kathabus
    kathabus Member Posts: 45
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    Great things to think about and discuss for sure! In my case the reasoning for my treatment plan was the SOFT trial and my oncotype score. If I would have had a high oncotype score....I for sure would have been recommended chemo

  • ailuj9
    ailuj9 Member Posts: 7
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    Thanks @Kathabus! Hugs!!

  • OnTarget
    OnTarget Member Posts: 124
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    Aliju9, here is some great data for you. For low and intermediate oncotype scores, the oncotype company uses the results from the TAILORx study to tell you your 9 year recurrence risk and the chemo benefit.

    In 2019, the TAILORx team released these results which incorporated age and clinical risk to further refine the oncotype score results:

    Clinical and Genomic Risk to Guide the Use of Adjuvant Therapy for Breast Cancer | NEJM

    For instance, my oncotype score was 16, and my oncotype results said that my distant recurrence risk was 4% and my chemo benefit was less than 1%. Great! But then I read the TAILORx results noted and I saw that I was considered high clinical risk and with a score of 16, my distant recurrence risk was actually 11.9%, and with chemo it was reduced to 5.5%. That was a huge difference for me (6.5% chemo benefit).

    If you check out the study and first determine your risk with your 2cm tumor: Grade 1 or 2=low risk, Grade 3=high risk. I had a 3cm tumor at Grade 2, which is high risk.

    Then look at Table 2 and you can see your distant recurrence risk with and without chemo and see the chemo benefit. If you are high risk, your chemo benefit is the same as mine, 6.5%. If you are low risk, your chemo benefit is -.2%.

    The neat thing about this is that these results are from the dataset of the TAILORx study, so it is literally the defining information for use with oncotype scores.

  • ailuj9
    ailuj9 Member Posts: 7
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    Thanks @ontarget!!


  • VioletKali
    VioletKali Member Posts: 97
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    ((HUGS)) As you can see I quit chemo due to poor quality of life. In hindsight, if I was in the same position, I would not do chemo for a 2% risk.

    I am choosing not to take hormonal therapy because I am cool with the 90% percent chance of not having a recurrence, and I was 100% miserable on hormonal therapy.

    Obviously a much larger tumour would likely change my mind.

  • wallycat
    wallycat Member Posts: 1,342
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    If the TaylorRX results would have been in at the time of my dx, I would no doubt have been told to do the chemo. As it was, the study was just starting.

    My breast surgeon and oncologist (whom I later fired) said 2% or less benefit, I should skip chemo. I had JUST turned 50 and the tamoxifen stopped my periods immediately. My onco score was 20.


  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
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    wallycat, with TAILORx the "no chemo" recommendation you received might not have changed.

    This chart is from the Oncotype site. You can see that with a 20 score and being age 50, you fall right at the top of the ~1.6% benefit range. Your score does put you close to the higher category (chemo would be probably be recommended with a 21 score) but with your age being at the top of the age range (chemo would not be recommended with a 21 score if you were >50), those two factors probably cancel each other out.

    image

    From the second page of the report, you can compare the results pre-TAILORx (based on NSABP B-20) versus TAILORx. With a 20 score, for someone 50 and under, the benefit of chemo appears pretty much unchanged, although the overall risk, both without chemo or with chemo, appears to be maybe 1%-2% lower.

    image




  • wallycat
    wallycat Member Posts: 1,342
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    Thanks Beesie...always.

    I was 49 at dx and just turned 50 that May (dx in April). Thought the study said 50 and younger...I'm never sure when they say older than 50 where 50-exactly sits.

    Thank you for your input. I'm starting year 15....

    I hope anyone dealing with these decisions can be at peace with their choice. I still have some anger-issues about taking tamoxifen for ILC, LOL...but that's for a different thread.