Tamoxifen alone or Chemotherapy also? Hardest decision to make.

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Teri1975
Teri1975 Member Posts: 10
edited January 2019 in Just Diagnosed

I'm so glad I found this forum. All my info is in my profile. I have spent Christmas doing the same as many of you. Still trying to make sense of all that is happening. Currently, I am trying to make my decision on whether to take Tamoxifen alone, or, go through chemo as well. My oncotype dx score came back at 21, in the intermediate range. I am 43 and premenopausal. I have had two oncologists review the results with me. One would not give me her personal opinion so I would not be swayed by her opinion, but said either decision I made was a good decision and it was my final say. Second oncologist eventually said he would want his wife, mom,etc. to also do chemo with same results. Based on my surgical pathology results alone, before the oncotype dx test, two oncologists said they would not have had any reservations about recommending chemo based on the size, grade, and my age and before oncotype dx most oncologists would have made the same call. There was also lymphovascular invasion. Would anyone share their experience or thoughts? Family and friends are listening, but also are holding back their true opinions.

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  • Sjacobs146
    Sjacobs146 Member Posts: 770
    edited December 2018

    I had a similar diagnosis, Oncotype score 23, and my docs recommended chemo. Combination of intermediate Oncotype score, positive node, and relatively young age (48) tipped the scales toward chemo. I decided to have the chemo because if I didn't, and the cancer came back, I'd never be able to forgive myself. I have no regrets so far

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  • Wigging2000
    Wigging2000 Member Posts: 295
    edited December 2018

    hi! I am 45, premenopausal, dx the same month as you, and will have my Oncotype back on 1/15. I’m super nervous. I know I’ll be taking tamoxifen which I’m scared about, and chemo will be decided on the 15th. Heading into the new year with this all looming is so sad.

    I think the intermediate range score is a tough thing to deal with. If mine came back in that range, I think I would choose the chemo. I have 3 daughters and need to think that I’d be doing everything I can for them. However, I’m not yet in the position to decide...you are the one making this hard, real choice.

    I think you’ve done the best you can for yourself with getting the second opinion, and whichever you choose will be the right thing for you. When do you need to make your decision?


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  • Moderators
    Moderators Member Posts: 25,912
    edited December 2018

    Dear Teri1975,

    Welcome to the BCO community. We are sorry about your diagnosis but so glad that you reached out to our members for support and information. We hope that you will find what you are looking for here among the shared experiences of our community. Please let us know what we can do to be of help and support. Wishing you all the best with your decisions and treatment.

    The Mods


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  • Teri1975
    Teri1975 Member Posts: 10
    edited December 2018

    Wigging2000

    It is a very hard decision. My son is 14 and daughter is 11. I do worry about them, my daughter even more now. One oncologist said I could start chemo in Feb, another said I should make my decision in the next 2 weeks and start if that is my choice.

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  • pupmom
    pupmom Member Posts: 5,068
    edited December 2018

    Teri, I was much older than you when diagnosed 7 years ago. But, if I had been in the intermediate area, I wasn't (Oncotype DX 14), I would have done the chemo. My children are/were all grown, but I have beloved grandsons I want to make sure I'm around for. Best wishes, whatever you decide!

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  • Samnjb
    Samnjb Member Posts: 26
    edited December 2018

    my onco prepared me before oncotype that I’d it was above 15 he would want chemo. I am also very much premenopausal. My scor back at 12 and even then just for my comfort He ran the Mammaprint test, which also caMe back low risk.

    Good luck these are such hard dec

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited December 2018

    Teri, I understand how difficult this decision is. In your shoes I would ask for the Mammaprint test and I would explore the option of using lupron to shut down your ovaries and going on an aromatase inhibitor rather than tamoxifen. In general, the AIs are more efficacious but they can't be used by premenopausal women.

    FWIW - I was not premenoupausal so my situation's not identical to yours but my Oncotype was 20, tumor was grade 2/3, 2 positive nodes. I had neo-adjuvant letrozole which hit the tumor and nodes pretty hard and slowed the growth rate to almost nothing. Based on that and given urgent family needs I did not do chemo, although I really struggled with the decision. I did do a full course of radiation and am completely committed to at least 7 years, probably 10, on letrozole. I'm only 4 years from diagnosis, which certainly isn't long term, but the numerous scans I've had (for other reasons) show no signs of recurrence despite the lack of chemo and a genetic issue that ups the odds.

    Chemo is not entirely benign - NONE of the cancer treatments are. There are long-term consequences to any of these decisions, which certainly doesn't help. Take your time, get ALL the information you can, then make your decision and fight the urge to 2nd guess it - whichever way you go. Good luck.

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  • Wigging2000
    Wigging2000 Member Posts: 295
    edited December 2018

    Teri-

    I hope others who have faced similar decisions will share their experiences. Chemo is scary, surgery is scary, hormonal therapy is scary. My mom died from cancer when I was 4, so I think my perspective of doing absolutely everything over and beyond is based on my loss as a child. I do believe that you’ll know the right decision. I think we all do, at some point in each step of the process. I’m sure it would be much easier to just have the doctor decide. Hugs.


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  • Marlene58
    Marlene58 Member Posts: 2
    edited December 2018

    I am in the same position! I’m 60 with Oncotype of 20. The tumor was 5.1cm, grade 2, ER/PR + and HERS2 -, and also had lymphatic invasion. The oncologist said it was up to me as to whether I have chemo or not. She said only a 4% change in outcome. I haven’t decided if it’s worth putting my body through chemo. It would be 4 doses of taxotere/cytoxan 3 weeks apart.

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  • wanderweg
    wanderweg Member Posts: 549
    edited December 2018

    It's such a tough decision when you are in the intermediate range. My score was high enough (38) that it was an easier decision to make, but I'm not sure what I'd have done if it were lower. But since my mother had breast cancer twice and mine looked fairly aggressive (even though it was only grade 2 with no node involvement) I took a nuclear approach and did a BMX and four rounds of cytoxan and taxotere. It was tough, but not nearly as bad as I feared. My MO said that the worst side effects happen with additional rounds. I've been on tamoxifen for about 4 weeks now and have zero side effects from it so far. I can't tell I'm taking anything.My chemo ended November 2nd, and I feel pretty good, actually. I don't have the stamina I used to but it's slowly rebuilding. So... none of this is to say you should have chemo - I just thought it might help to hear from someone who has recently been through it AND on tamoxifen who can tell you that if it's the route you choose, it's doable.

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  • Teri1975
    Teri1975 Member Posts: 10
    edited December 2018

    Thank you for your responsen wanderweg. I still have not made my decision about chemo, but reading everyone's input is helping especially since it's all coming from personal experience. I just took my first Tamoxifen tablet literally 5 minutes ago, so I am hoping I have the same results!

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  • Teri1975
    Teri1975 Member Posts: 10
    edited December 2018

    Wigging2000, I'm so sorry about your loss and I can completely understand your decision. I appreciate your response.

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  • Teri1975
    Teri1975 Member Posts: 10
    edited December 2018

    Marlene,

    Yes it is difficult, right? Our results are somewhat similar. My grade was 3 and tumor size was 2.7 cm. It would also be 4 rounds same chemo meds. Mine would make a 6.7% change, so still small. Have you decided?

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  • Meow13
    Meow13 Member Posts: 4,859
    edited December 2018

    Teri, with the size, grade and 2 nodes I think chemo may be the right decision. I declined chemo with two 1cm tumors grade 1 and barely 2, no nodes, er+ 95% but pr negative her2 negative, age 53. I had an oncodx score of 34. I am 7 years out. Go with what you believe is right and good luck. There is no right or wrong way to go.

    Wait, did you have lymph nodes involved?

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  • Marlene58
    Marlene58 Member Posts: 2
    edited December 2018

    Teri

    Not yet. I see the MO on Jan 8th, so I have time to make up my mind. Thanks for all the input from all!

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  • Teri1975
    Teri1975 Member Posts: 10
    edited December 2018

    thanks for your response meow13. Yes, either way will be a fine decision. I know I’m otherwise lucky, it could be so much worse. I did not have any node involvement, but yes 2.7 cm and grade 3

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  • msphil
    msphil Member Posts: 1,536
    edited January 2019

    hello sweetie I was 42 and planning our 2nd marriage when I was diagnosed I first thought bout lumpectomy but decided mastectomy didn't want think bout recurring to Inspire you and others I went for chemo rads and Tamoxifen and am now going on to 25yrs this yr 2019 Praise God. Stay Positive But Please keep HOPE got me thru. msphil idc stage2 0/3nodes 3mo chemo before and after Lmast then we got married great fiancee then husband. Then 7wks rads and 5yrs on Tamoxifen.

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