chemotherapy with a stage 1a lobular breast cencer.

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everetta
everetta Member Posts: 71
edited March 2019 in Chemotherapy - Before, During, and After

I have a lobular cancer with an oncotye. Does chemo help with lobular cancers. I have been told not. What do other people think?

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  • Meow13
    Meow13 Member Posts: 4,859
    edited March 2019

    I think chemo kills alot of cells regardless. If your lobular cancer is slow growing I might question the effectiveness of chemo. The oncodx score is a statistical tool that can help guide you on a decision to treat with hormone blockers alone or adding chemotherapy.

    Unfortunately, you can never be assured your treatment will prevent recurrence. I had both lobular and ductal breast cancer, my oncologist did not consider my lobular any differently than my ductal.

    My oncologist was more concerned with my 95% er and 0% pr status. Also, my oncologist thought nothing of my having 2 tumors instead of one.

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  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited March 2019

    The days of throwing chemo at almost every cancer are behind us. It's now based on the oncotype score, which takes many factors such as ER percentage into account and whether your particular cancer is a fast-growing or slow-growing one. If you don't NEED chemo and ask for it anyway, it can do more harm than good.

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  • everetta
    everetta Member Posts: 71
    edited March 2019

    My oncotype score was a 27 and 31 (31 first and then repeated and came back 27) so right above the need for chemo, yet small 1cm and node negative. The test shows no benefit for 25 and hard to know how much benefit for 27 and 31..docs say not much..31 is where they say get it..so I am right on the edge but the 27 made them less likely to recommend it.

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  • Meow13
    Meow13 Member Posts: 4,859
    edited March 2019

    everetta, have you decided what to do?

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  • everetta
    everetta Member Posts: 71
    edited March 2019

    I decided to not do chemo but it makes me scared. To be realistic and not emotional, the benefit would be 0-4%..priobably more like 1-2% and to worth the risks. It is a lobular tumor so less responsive to chemo and very small, 1cm and node negative so no one pushed chemo..it was offered with the explanation that it would offer little benefit and some recommended against it. I just don't want this to come back so if it had significant benefit I would do it..but not for no benefit. With there 31 it was recommended by many when it was 27 the picture changed.

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  • Meow13
    Meow13 Member Posts: 4,859
    edited March 2019

    Well if it helps my score was 34 and I didn't do chemo, I managed 4 years on AI drugs. I am on year 8 no recurrence.

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  • everetta
    everetta Member Posts: 71
    edited March 2019

    That does help!! Could you tell me about your tumor and your age..as I remember like mine it is Pr- but I can't remember the details.

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  • Meow13
    Meow13 Member Posts: 4,859
    edited March 2019

    I had 2 tumors close to skin 1 ILC grade 2, 1 IDC grade 1, both mitotic scores 1. They wer 95% er positive and pr negative her2 +2, but fish said negative. I don't which sample was sent to oncodx it came back a 34. I think the high score was due to the pr status. I think tamoxifen is not as effective but AI drugs are better. I will post a link for you.

    https://www.cancernetwork.com/articles/anastrozole...


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  • Meow13
    Meow13 Member Posts: 4,859
    edited March 2019

    I had no nodes and skin didn't have any cancer. I was 53 at dx.

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  • everetta
    everetta Member Posts: 71
    edited March 2019

    Thanks for sharing this. Do you remember how large your tumors were. It is inspiring to hear how well you are doing with your oncotype score--I think being Pr- makes the score higher. Which Ai did you take and how did you respond to it. Letrozole will be recommended. Although it has been 4 months since my surgery I haven't started it yet but will soon. I have been thinking about chemo no chemo for the last month but finally made the decision and I am comfortable with it.

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  • jessie123
    jessie123 Member Posts: 532
    edited March 2019

    Everetta --- A friend of mine had a 2cm - node negative tumor that was Er positive and Pr negative. She got a second opinion at M.D. Anderson in Houston. They recommended Chemo. I don't know how aggressive her tumor was. Do you know if yours is aggressive? I doubt you have to rush into the decision. I took months just to decide between a lumpectomy and mastectomy. If I were you I would do a lot of online research on Pr negative Breast cancer and also maybe get a second opinion. I don't understand why these breast cancer doctors make us make all the life and death decisions. The decisions are almost more stressful than the treatments.

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  • Meow13
    Meow13 Member Posts: 4,859
    edited March 2019

    Both my tumors were 1cm, I have been searching for information on er+ pr- tumors for years. There just isn't alot of information out there. We are are small subset most studies I've seen those that are er+ pr- are weakly er positive. One theory is that pr puts the brakes on aggressive er cancers, another is a theory that er+ pr- aren't feeding off estrogen. But look at the link I supplied AI drugs are very different from tamoxifen. I would not put all my eggs in the oncodx basket. It is a statistical model.

    I took anastrozole and then exemestane been off over 3 years now.

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  • everetta
    everetta Member Posts: 71
    edited March 2019

    We have twin tumors--mine is also ILC, 1cm and mitotic rate of 1, our oncotypes are close as well. Did anyone recommend chemo to you..because mine was so small (and maybe my age 68) they "offered" it and explained the limited benefit and risks but no one pushed for it and many said they didn't think it would offer any or only a tiny benefit..being lobular it probably offers less benefit. They do think the Ais offer the most benefit and described them as required (chem was an option but not requirement). I hope you will remain recurrence free the rest of your life and that I will also.

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  • Meow13
    Meow13 Member Posts: 4,859
    edited March 2019

    oh yes, my arm was twisted by doctors but I explained my position and understanding of the data and my oncologist said ok.

    I was told my 10 year recurrence was 23% with chemo it might go down to 12%. Not convinced.

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  • everetta
    everetta Member Posts: 71
    edited March 2019

    Hi Jessie, Thank you for your response. Did you decide or was it recommended for you to get chemo? How long did your doctor tell you you had to decide about chemo.

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