Chemo or no chemo? Nobody seems to know.

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ender
ender Member Posts: 167
in Breast Cancer #1
Hi,

I just got my oncotypedx back. Just as my mammaprint test, it came back as "low risk". This perplexes all my doctors. Most people with my stage (I) and test results don't get chemo. But what none of the doctors can get by is my young age of 28. The just "feel uncomfortable" not giving me chemo. Don't get me wrong, my doctors are all great. They are honest about all that is known and unknown in the medical science. They tell me that I am the most confusing patient they had in a long time.

I have been preparing myself for chemo. I just cut off my 15 inches of blonde locks. I cleared my schedule. And now... maybe they are not sure they want to give it to me anymore? Of course I am wonderfully grateful that all my test results are so good. I just want to know what is or is not coming my way.

Anyone who has been in this position?

Eva

Comments

  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
    #2
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    Well, I think I was similar.
    Well, I think I was similar. Back in 1987, I was just 33 and was told that my pathology report would show that my tumor would be ER negative and very aggressive. I had a heart scan as they prepared to give me a chemo course with adriamycin.

    Lo and behold, my cancer, Stage 3A, was ER +. Because the tumor was large, there was never a question about doing chemo, but, at the last minute, I was changed to "chemo lite" (CMF=cytoxan, methotrexate and 5FU). I also had a mastectomy, radiation and tamoxifen.

    24 years later I am still alive and fighting--although I did have a setback in 2009 when I was diagnosed with bone metastasis (22 yrs after initial diagnosis). I am on arimidex and zometa doing well again.

    There are never easy answers about this disease. Trust your gut and, if you are not happy, get a second opinion.
  • BioAdoptMom
    BioAdoptMom Member Posts: 358
    #3
    Options
    I don't know if it will help
    I don't know if it will help you or not, but my oncotype came back at 19 (I am also a stage 1), just two points into the intermediate range. My onco made the decision that since my tumor was grade 3 and I am 52(even that is considered according to him, relatively young for BC) I would be getting chemo if I was high or intermediate. DH and I supported that especially since we still have an 11 y/o at home. What was your exact score? What about your tumor grade? I have heard that grade 1 doesn't often respond well to chemo so could that be the case?

    Nancy
  • Ritzy
    Ritzy Member Posts: 4,381 Member
    #4
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    Hi Eva. Do your doctors all
    Hi Eva. Do your doctors all say that you don't need chemo? Or, are they giving you the choice? I wasn't clear if they were recommending it to you or not.

    If you don't feel right about what they say, could you get a 2nd opinion?


    This is your life, your treatment, so, you do what you feel is right and best for you.


    Sue :)
  • Gabe N Abby Mom
    Gabe N Abby Mom Member Posts: 2,413
    #5
    Options
    Hi Eva,
    Unfortunately none
    Hi Eva,

    Unfortunately none of us really know what is coming our way. Our dear VickiSam compares this diagnosis to a roller coaster. You can be going straight, climbing the hill, getting better and suddenly there is a sharp turn or a plummet back down.

    I wish it weren't that way, and that it was simple. I wish the docs could say "oh you have blahblah disease. Take this pill for 10 days, and it will be gone." Sadly, it's not like that. Even within breast cancer there are so many different variables...

    But it seems that you are doing what I think are the right things...gathering information, asking questions, making decisions, and then climbing aboard for the ride.

    Big hugs,

    Linda
  • ender
    ender Member Posts: 167
    #6
    Options
    Ritzy said:

    Hi Eva. Do your doctors all
    Hi Eva. Do your doctors all say that you don't need chemo? Or, are they giving you the choice? I wasn't clear if they were recommending it to you or not.

    If you don't feel right about what they say, could you get a 2nd opinion?


    This is your life, your treatment, so, you do what you feel is right and best for you.


    Sue :)

    Thanks for your replies!
    I
    Thanks for your replies!

    I have only spoken with my surgeon yet, not my medical oncologist. Waiting for her to call me. My surgeon said that trials show "little to no benefit" with chemo for those who are low risk. My own research confirms this. Some trials even indicate that low risk patients do WORSE on chemo. But she did say that she still thought the medical oncologist would recommend me chemo, basically based on my young age alone.

    My oncotypedx score was 16, so in the high range of the low risk range. Im stage I, grade 2. My tumor was 1.3 cm. Im ER and PR positive. My HER is not expressed. I don't have the BRCA1 or 2 gene malfunction. I had sentinal node biopsy, they took three nodes. They were all classified as negative nodes, but one of them had "isolated tumor cells". There was lymphatic/vascular invasion. My Ki-67 (cells about to divide) was 20%.

    I already got a second opinion, from Scandinavia (where I am from). However, there they don't even use the mammaprint or oncotypedx tests yet. I was told I would have been given chemo there, again because of my young age. I am really happy with my doctors here, and I don't feel other oncologist would tell me anything different. My case has been briefed at a "tumor board" and all medical oncologists present wanted to give me chemo. Some of the oncologist wanted to give me a harsher chemo than my oncologist. My oncologist has me set for 4 rounds or Cytoxan and Taxotere.

    A main argument put forward by my medical oncologist is that both the mammaprint and onctoypedx tests are based on older women. So in theory my "young" tumor could have a fundamentally different biology than those in older women. If that is true, I guess the tests don't really say anything about my cancer. However, there are no indications in the science that "younger" tumors are any different than "older" ones.

    I don't know. Its a touch call. Im not afraid (perhaps I should be) of the short term effects of chemo. Its long term effects I worry about. Am I hurting myself long term for no benefit?

    Perhaps I should just trust my doctors. But as Sue is saying, its my life, so why should I not be involved? Last week I made the call that I don't want to take the hormone drug "Lupron" during my chemo. This could save my fertility. However, I have read so many bad things about this drug and at this point I don't want to mess with my hormones (that caused my cancer to begin with). I harvested 22 eggs last week (which resulted in 13 strong embryos now frozen), and that will have to do as "insurance" against fertility loss. Since I made that decision I have read even more horrible things about this drug and I am so happy that I am not taking it.

    Thanks for generously sharing your stories.

    Eva
  • ender
    ender Member Posts: 167
    #7
    Options
    Gabe N Abby Mom said:

    Hi Eva,
    Unfortunately none
    Hi Eva,

    Unfortunately none of us really know what is coming our way. Our dear VickiSam compares this diagnosis to a roller coaster. You can be going straight, climbing the hill, getting better and suddenly there is a sharp turn or a plummet back down.

    I wish it weren't that way, and that it was simple. I wish the docs could say "oh you have blahblah disease. Take this pill for 10 days, and it will be gone." Sadly, it's not like that. Even within breast cancer there are so many different variables...

    But it seems that you are doing what I think are the right things...gathering information, asking questions, making decisions, and then climbing aboard for the ride.

    Big hugs,

    Linda

    Thanks Linda!
    Cynthia, I am
    Thanks Linda!

    Cynthia, I am so happy to hear that you have done well for so long! 33 is also a very young age for diagnosis. Did you have any genetic issues? Do you have any hunch on what caused your cancer?

    Nancy, how are you feeling now? You should be 6 days out from your first chemo, right?

    Eva
  • Megan M
    Megan M Member Posts: 3,000
    #8
    Options
    ender said:

    Thanks for your replies!
    I
    Thanks for your replies!

    I have only spoken with my surgeon yet, not my medical oncologist. Waiting for her to call me. My surgeon said that trials show "little to no benefit" with chemo for those who are low risk. My own research confirms this. Some trials even indicate that low risk patients do WORSE on chemo. But she did say that she still thought the medical oncologist would recommend me chemo, basically based on my young age alone.

    My oncotypedx score was 16, so in the high range of the low risk range. Im stage I, grade 2. My tumor was 1.3 cm. Im ER and PR positive. My HER is not expressed. I don't have the BRCA1 or 2 gene malfunction. I had sentinal node biopsy, they took three nodes. They were all classified as negative nodes, but one of them had "isolated tumor cells". There was lymphatic/vascular invasion. My Ki-67 (cells about to divide) was 20%.

    I already got a second opinion, from Scandinavia (where I am from). However, there they don't even use the mammaprint or oncotypedx tests yet. I was told I would have been given chemo there, again because of my young age. I am really happy with my doctors here, and I don't feel other oncologist would tell me anything different. My case has been briefed at a "tumor board" and all medical oncologists present wanted to give me chemo. Some of the oncologist wanted to give me a harsher chemo than my oncologist. My oncologist has me set for 4 rounds or Cytoxan and Taxotere.

    A main argument put forward by my medical oncologist is that both the mammaprint and onctoypedx tests are based on older women. So in theory my "young" tumor could have a fundamentally different biology than those in older women. If that is true, I guess the tests don't really say anything about my cancer. However, there are no indications in the science that "younger" tumors are any different than "older" ones.

    I don't know. Its a touch call. Im not afraid (perhaps I should be) of the short term effects of chemo. Its long term effects I worry about. Am I hurting myself long term for no benefit?

    Perhaps I should just trust my doctors. But as Sue is saying, its my life, so why should I not be involved? Last week I made the call that I don't want to take the hormone drug "Lupron" during my chemo. This could save my fertility. However, I have read so many bad things about this drug and at this point I don't want to mess with my hormones (that caused my cancer to begin with). I harvested 22 eggs last week (which resulted in 13 strong embryos now frozen), and that will have to do as "insurance" against fertility loss. Since I made that decision I have read even more horrible things about this drug and I am so happy that I am not taking it.

    Thanks for generously sharing your stories.

    Eva

    I want to wish you good
    I want to wish you good luck, whether you do chemo or not. I suppose if your oncologist recommends it, then it is something you should consider.

    I was fortunate and didn't have chemo, just a lumpectomy with rads.


    Keep us updated.


    Hugs, Megan
  • poplolly
    poplolly Member Posts: 346
    #9
    Options
    Ender,
    My diagnosis is
    Ender,

    My diagnosis is metaplastic triple negative cancer, and it is a rare one so there are no prescribed treatments. My oncologist felt my best defense was the chemo. It sounds like there haven't been a lot of studies on what you have either. I wish you much success in whatever you decide to do. My oncologist wanted me in a clinical trial, but I declined that so we do have a choice. At this point, I don't see any long term effectives of chemo. I finished in early February. Then, we're all different and predictions aren't always right. No that I've contracticed myself to death, and reached no real decision, I'll hush!

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