Too late for chemo??

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dapple
dapple Member Posts: 1
edited August 2015 in Chemotherapy - Before, During, and After

I'm beside myself. Surgery April 22. I had an appointment with the oncologist a month after surgery and she didn't have my Oncotype results back. When they came back the doc called me that my number was 19 and that I could start tamoxifen. Then I did research and found out I was borderline. The doc everyone recommended to me for a second opinion was a superstar apparently and I wouldn't be able to see him til late august. So I found some other oncologist and she took the time to explain to me what borderline meant. By then it was about 2 weeks before my followup with doc no. 1 (which others recommended as a second opinion before they found out she was my first) so I kept the appointment. I thought on Monday that we had agreed that I would go ahead with 4 rounds of chemo, but she calls me tonight and says that she doesn't recommend it. She is scared of doing harm. There is a risk of getting leukemia with chemo. The way I look at it, the increase from 1 to 2 percent for leukemia risk is offset by the decrease from 12 to 7 percent getting chemo. Does anyone feel differently?

But THEN she pulls the zinger that the chemo won't be effective because we're 3 months out from surgery!!! What the hell, all spring and summer I've been waiting on appointments from these gods, sorry, doctors, just to have them tell me that because I've been waiting I've screwed myself???I'm sorry, I've never done this before, but when everyone is yelling hurry up and wait in my ear I don't know what to do. All my numbers are good, but I did have lobular hypoplasias in the other breast (I had a double mastectomy, didn't want to mess around) and at 52 I'm not menopausal yet. Estrogen city. No one (medical personnel) wants to hear me talk about the past, the past is in the past, but if what they hear me say about the past helps one woman not go through the crap I did it will be worth it.

Does anyone know anything about the leukemia risk with chemo? How hard is it to detect the leukemia if it happens? Will they be more vigilant about it if they know I had chemo? Does the insurance company look at me as a money sink and wish I would kick off already?

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  • debiann
    debiann Member Posts: 1,200
    edited August 2015

    Dapple, sorry your treatment isn't going the way you expected. It is terrible that there was such a time lapse between appointments that it limits the treatments options.

    I can understand hitting cancer with everything you got, but it seems that you truly are "borderline" and that the risks of chemo may outweigh the benefits. I didn't have Oncotype test, but from what I read, many with a score of 19 decline chemo. Your tumor was small. You are ER+ so you can do hormone therapy. These are positives! What grade was your tumor? Its my understanding that faster growing grade 3 tumors respond better to chemo and grade 1. How positive was your ER? Perhaps a hysterectomy and AI would be a better choice to reduce the estrogen? Something to ask your MO about.

    I had a more aggressive cancer HER2+ and grade 3), so I felt compelled to do chemo and it truly sucked big time! I don't know what I would do if I were in your position, both options have merits. Good luck to you.

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  • wrenn
    wrenn Member Posts: 2,707
    edited August 2015

    I would skip chemo just because of it not being worth the risk of side effects. I didn't get chemo until 3.5 months after surgery and my cancer was aggressive. I only ended up with one treatment because of complications but I consider myself lucky to not have done the full course because of the neuropathy and increase in arthritis and fibromyalgia symptoms tenfold.

    If chemo is not recommended count your blessings and move on.

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  • Meow13
    Meow13 Member Posts: 4,859
    edited August 2015

    you are both er/PR positive do the tamoxifen forget the chemo

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  • Rockym
    Rockym Member Posts: 1,261
    edited August 2015

    dapple, there is nothing in your dx that would indicate chemo. You are not under 40, your cancer wasn't aggressive and you do not have any positive nodes. I'm not sure if the standard of care is to do an Oncotype on all tumors now, but just a few years ago, most doctors wouldn't even do that test for your stats. Consider yourself lucky!

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  • Beckers
    Beckers Member Posts: 1,883
    edited August 2015

    I am a 19 and two oncs didn't recommend chemo so I didn't. I feel good about that decision. Good luck to you

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  • AnniebNJ
    AnniebNJ Member Posts: 33
    edited August 2015

    My dx was similar to yours. My oncotype was 19 and 3 oncologists said no chemo, just rads and hormone therapy. The 3% reduction in recurrence rate did not outweigh the risks of chemo. Good luck!

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