Chemo or no Chemo?

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BR1175
BR1175 Member Posts: 5
edited September 2016 in IDC (Invasive Ductal Carcinoma)

Hi, I am a 41 year old, who was originally diagnosed with Stage 0 extensive DCIS, but after I had a double mastectomy, they found out there was invasive cancer, about 1.2cm. I have a oncotype score of 20 with clean margins, nothing was in my lymph nodes and HER-. I plan to take tamoxifen, but I am just not sure if I need to do Chemo. I need to unfortunately make a decision in the next couple days, due to the small window they give you after surgery. I wanted to know what have others done who have an onco score of 20. Help!

TIA!


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  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited September 2016

    BR, sorry you have to be here. What did your MO recommend and why? Do you have other health issues? Family history? BRCA status? Have you gotten a second opinion? I am guessing you did not do the mamma-print test. I was a 21 and did the chemo. My Mom and half-sister were both DX'd years ago and are fine now. No regrets here, but you have to do what is best for you. For what it's worth, I was scared to death of chemo and scared not to...not a knee-jerk reaction, but more "if I get mets and didn't do chemo, I don't think I could have peace"...if that makes sense. It may not be the best reasoning for you, but it's it how I did it and got through it. For what it's worth, It wasn't nearly as bad as I had envisioned. Best wishes in whatever you decide.

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  • etnasgrl
    etnasgrl Member Posts: 650
    edited September 2016

    I was 41 when diagnosed with an Oncotype score of 27. My MO suggested chemo due to my age, but could not tell me if the benefits to chemo would outweigh the risks.
    God, what a hard decision! Scared
    In the end, I decided NOT to do chemo. I had clean margins and no cancer in the lymph nodes. I also tested negative for genetic testing. (My mother had breast cancer at 42.) I am very scared of the side effects to chemo, some can be life long. I didn't want to put my body through all of that, if I didn't know for sure that there would be some benefit. If my MO would have told me, yes, the benefits outweigh the risks, I would have done it. But, he couldn't.
    I decided to just move forward with radiation, followed by Tamoxifen. My MO did support my decision, so that made me feel better about the whole thing.

    I know of women who have done chemo and still the cancer comes back. I also know of women who did not do chemo and the cancer came back. And vice versa. In my opinion, this is all a crap shoot and we need to make the best decision that we can, with the info that we have.
    My decision was 100% right for me and I have no regrets.

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  • BR1175
    BR1175 Member Posts: 5
    edited September 2016

    Thanks so much for your response Keepthefaith. I actually saw 3 MO's and they all recommended Chemo but all had difference approaches. the first recommended CMF, the 2nd reco was CMF or TC, and the she also said I could go to the extreme and take meds to stop estrogen production or even go as far as removing my ovaries. Then the 3rd MO reco was TC. I am a healthy woman, no family history of BC and had genetic testing to make sure I did not carry the gene. (I have a 5 year old little girl and wanted to make sure I know for he sake). I did not have a mamma-print test done, no one reco that, just the onco. I am afraid I do not have time to get another test done since I am at the point where i need to make a plan this week, or the window for chemo to be effective is closed. I feel like I know what I want to do but then there are those moments that have me second guessing it all.

    etnasgrl, so nice to finally see someone who has a similar DX to myself. This is truly the hardest decision I have ever had to make. I feel like I know what I want to do, but then there are those moments when I think my fear is what is driving the decision. I feel the same way you did and I am leaning towards no chemo. I want to be able to make this decision and have no regrets like I was able to do with a double mastectomy. Since chemo can only lower my recurrence by 1 to 3% and all the MO's could not tell me the benefits outweighed the risks, I am 99% sure I do not want to do Chemo either. I think I need to make an appointment with the MO I liked best and talk through all this one more time.

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  • etnasgrl
    etnasgrl Member Posts: 650
    edited September 2016

    It sounds like you have already made up your mind, but yes, talk with MO you like the best and see where you stand after that.
    When I told my MO my decision about not doing chemo, he said to me, "Okay, now from this moment on, only look forward, not back. Do not second guess yourself or play the what if game. The decision has been made, the end."
    Great advice!
    Do I sometimes get worried about the future, if the cancer will return? Of course! But, if it does, I'll deal with it then. That's all I can do.

    My mother had breast cancer and did chemo, it still came back. Not only that, but she dealt with some pretty serious side effects to the chemo for her whole life.
    I also have a very good friend who had breast cancer. She didn't do chemo, (with a diagnosis just like ours and an Oncotype score of 23), and it's been 15 years with no recurrence.
    I'm not saying this to sway you one way or the other. All I'm saying is that we just don't know the future. We can give it all we've got and it still comes back. We can do very little and it doesn't. Or vice versa. That's why I say this is a crap shoot. It's all so random.
    My advice would be to go with your gut. I too was worried that I was making my decision based on fear....but the longer I thought it over, the more I felt at peace with my decision and knew it was the right one for me. That's what I suggest you do. Just keep thinking it over.....ask questions, read info, talk to your doctors. You'll know. You'll know what the right decision for you is. And once you make it, follow my MO's advice! Smile

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  • Meow0369
    Meow0369 Member Posts: 156
    edited September 2016

    H i just came across your post what did you decided to do? I was told stage 0 too then after lumpectomy and BiMx had two areas of IDCIS and I'm doing chemo. My tumor was 2 mm and 4 mm. To do chemo it's greater than 4 mm. I didn't " meet the guidelines" for chemo but it was recommended. Wanting to stop chemo after 3. Don't knw if I should. And hve some side effects. It will only help me by 4%. Im also BRACA1. I'm stressed all the time and don't hve any support at home. I hve 3 kids under 13. No family local or friends.

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  • BR1175
    BR1175 Member Posts: 5
    edited September 2016

    Meow0369 I decided to not do the Chemo. I did a lot of soul searching Labor Day weekend. Read as much as I could and talked to friends and family. And every time I did, I came back to what should I do i figured the tamoxifen is my best line of defense. Along with that I plan to see an acupuncturist to help keep my immune system strong, I am talking to a nutritionist to see what foods I should avoid and incorporate into my diet. And then last but not least, I am exercising at least 3 days a week.

    Did you get an Oncotype test done? I did and that is why my MO recommended chemo, but could not tell me the SE would out weigh the benefits, so that is why I decided not to do the chemo. I am sorry you do not have support at home, that is super tough. How many more chemo treatments to you have? I was also not a BRACA carrier, but if you only have one more left, you should finish it and then it will be in the past and you can move on and focus getting healthy and stronger for your 3 kids. I am here if you want to chat, wish you the best and hope you can find a way to eliminate some of the stress and focus on the good and happier things. xo

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

    I am 41, had the Oncotype of 20, and my Onc was adamant I not do chemo... was very confident about it too. I was still unsure, so I did the Mammaprint to double check.. and low and behold I was 'LOW RISK". No chemo for me either. I had BMX / no recon, and feel 100% back to myself. I have no SEs from Tamoxifen even though I'm a ultra rapid processor. There was a huge thread about Oncotype of 20. Do a search and you'll see a ton of info, studies etc.

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  • BR1175
    BR1175 Member Posts: 5
    edited September 2016

    Lisey, that is very interesting. thanks so much for sharing. I looked and looked and could not find anything that helped with people who scored a 20. Do you mind sending over some of the links, I would love to see what is out there.

    thanks so much!

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  • Meow0369
    Meow0369 Member Posts: 156
    edited September 2016

    BR1175,thanks for the encouragement. Im glad your happy w your decision. It's a relief to move on. I will decide after I talk to onco dr. It's just that that the chemo is accumulative. I'm pretty sick/ wiped out emotionally after my 3rd. I hve one more left. And my youngest may hve an autoimmune of some sort and I'm worried I may not be able to do it all.

    I did not hve Oncotype or Mamaprint done. That I knw of. Do nt knw why they never discussed it maybe bc I'm triple negative. My Ki67 was 50-60%. Not sure what that means. They basically put it that chemo would be " cleaning house " if you will.

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