Help needed: To get Chemo or not

Options
chandi
chandi Member Posts: 5

I am a healthy 61 year old woman diagnosed 11/2017 with Invasive lobular carcinoma; right breast lumpectomy performed 12/2017 tumor size 2.5cm; nodes 0/3 negative; margins clean;LVI not identified; ER+, PR +, Her2-; Ki-67 is over 25. Oncotype DX score 19. BRCA 1 and 2 result shows no gene mutation. this test was performed as my sister was diagnosed with stage 3 invasive ductal carcinoma, and passed away in the mid-90s at age 44 after a two year struggle.

I am seeing the medical oncologist next week. i am confused after going through several sites on the internet - different views are expressed about chemo with intermediate Oncotype score. i would really appreciate your thoughts on whether the benefits of chemotherapy in my particular case out-weigh the risks and side effects? I will also go for a second opinion before the final decision on chemo, but really would welcome your experiences and if any members have a similar case as mine. thank you so much for sharing your views.

Comments

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

    Hi Chandi-

    We just want to welcome you to our community! We know this is a scary and confusing time, trying to figure out what path to take. With an intermediate score, there's no definitive answer. And you'll definitely get lots of advice from other members who've been in your shoes and why they made the decision they did. We hope reading through this forum gives you some more insight.

    Please keep us posted on how it goes with the oncologist next week!

    The Mods

  • TamaraColo
    TamaraColo Member Posts: 7
    edited January 2018

    I've been going through the same dilemma today after getting my Oncotype Dx. I had a bilateral mastectomy in November after a diagnosis of DCIS and invasive ductal carcinoma (Stage 1); ER+, PR+, Her2 neu-, BRCA negative. My Oncotype is 18. My oncologist said he is not leaning toward chemo, but it's my decision and if I feel strongly about it, they will proceed. Both of my tumors were small, less than a centimeter, and with everything else, my overall risk for recurrence is low. Still, I wanted to do my homework and make sure I was making an informed decision. After talking with my family, I've decided not to do chemo. I'm 49 and still healthy (except for the cancer), and with a low risk I'm more interested in my quality of life now. I'm finishing a Master's degree and working at a job I love, I don't have children. As my healing progresses after surgery, I feel better and better. Because I'm ER+ and PR+ and premenopausal, I will need Tamoxifen for many years.

    For my circumstances, chemo does not feel like a good option. I think, however, that it's a decision we should all be able to make for ourselves. That's what my oncologist was trying to tell me, I think. I do hope you find what is right for you! For me, being on the low end of the intermediate Oncotype scale seems less of a risk than if I were a 25 or something higher.

  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited January 2018

    Chandi, I would get two or three opinions from the most experienced oncologists available. In my opinion, your age, negative nodes, and lowish Oncotype might argue against chemo, but the Ki67 and your sister's outcome might argue for chemo. Was PR high or low? Did they run a full gene panel or just BRCA test? Would the docs recommend a Mammaprint test to get more info?

    Tamara, with your stats I believe the standard of care would be no chemo.

  • chandi
    chandi Member Posts: 5
    edited January 2018

    thanks so much. PR was strong at 30% staining. Gene panel for BRCA was limited; and mamaprint not yet recommended. thanks for suggesting get a few opinions, i think that is the best way to proceed too. I also feel that Tamara's case is far more clear than mine regarding chemo. will keep you posted.

  • Georgia1
    Georgia1 Member Posts: 1,321
    edited January 2018

    Hi Chandi. I'm 59, similar case to your but had two small mixed IDC/ILC tumors and had an Oncotype DX of 18. After consulting two very good MOs they concurred on no chemo and I'm very happy with that decision. Ki-67 is not particularly valued anymore since it's not reliable; if you have three labs do it you are likely to get three very different values. But I have no family history. So I'd recommend getting at least two opinions, and a Mammoprint too if you can get someone to order it. Best of luck to you.

  • CindyNY
    CindyNY Member Posts: 1,022
    edited January 2018

    Hi Chandi- my Oncotype score is 19, and in a phone conversation with MO she recommended chemo. I see her on 1/9, I'll hear her out, but I'm unsure if I'll agree to chemo. She may talk me into it, who knows. I know if we search hard enough we'd find a Dr to say no chemo. But is that the correct answer to not have it mastesize years down the road? Unknown gray area.

    TAILORx was to publish on 12/31/17 its trial results on "intermediate" Oncotype scores - chemo vs no chemo. I can't find anything showing that it published.

    Best of luck to you.

  • chandi
    chandi Member Posts: 5
    edited January 2018

    hi Cindy, you have shared such useful information. I didn't know about the TAILORx study. Having been recently diagnosed, I am still navigating through the maze. Really happy my son made me joint this community. I have already benefited so much after joining. I will ask my MO about the study. Thanks so much

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

    CindyNY, with grade2 er and pr positive, no nodes and oncodx of 19 she should be recommending hormone therapy not chemo.

  • lrwells50
    lrwells50 Member Posts: 254
    edited January 2018

    Chandi,

    I had a smaller tumor, and was confident chemo wouldn’t be recommended, but I was wrong. My ER was strongly positive, but my PR was barely positive, and my OncotypeDX score came back 24, right smack dab in the middle of intermediate. My oncologist said if it was his family member, he would recommend chemo, so I did that. With a score of 19, I probably wouldn’t have. That doesn’t mean either decision is the correct one - that’s the frustrating part of all ofthis.

  • NotBrokenJustBent
    NotBrokenJustBent Member Posts: 394
    edited January 2018

    1a here, strongly ER/PR+ HR-. Because of my relatively young age and grade 3, despite an oncotype of 20, both my MO and a second consult plus my BS all leaned towards chemo. I will never know if it was the right choice but it is done.

  • Murfy
    Murfy Member Posts: 342
    edited January 2018

    Before receiving my Oncotype score, the opinion of 3 oncologists was no chemo if RS <18, <20, and <25. Opinions will vary widely. Excellent suggestion above that the more opinions you receive, the more comfortable you will be with your decision. BTW, my RS was 52, so I had no choice but to go with chemo!

  • Outfield
    Outfield Member Posts: 1,109
    edited January 2018

    Chandi, it's a good idea whenever you're unsure about how to proceed to get a second opinion from an expert (in this case an Oncologist specializing in breast cancer, ideally at an NCI-designated cancer center in an academic institution). Doesn't matter if the uncertainty is related to a grey area in medical knowledge, an arbitrary cut-off placed on something that is really a continuum, or things about your personal history (medical or other) that make it a complicated decision. Even get a third opinion if you're still unsettled.

  • chandi
    chandi Member Posts: 5
    edited January 2018

    dear sisters, you have all been so helpful. Thank You! my MO is leaning towards hormonal therapy + radiation; she believes that additional benefit of reducing recurrence risk with chemo will be modest in my case - around 2-4%.

    Reasons given: node negative; lobular cancer is typically less responsive to chemo; oncotype score 19; and my age. At one level, it is a relief! While, at the same time, a question mark remains in my mind - am i taking the right decision if i proceed only with HT and radiation. I sought a second opinion that came out with a similar assessment as my MO. Both doctors said the decision is mine. What do you all think - should i seek a third opinion before moving forward? thanks

  • Amelia01
    Amelia01 Member Posts: 266
    edited January 2018

    Chandi - had I not have had nodes positive coupled with a IDC aspect my MO would have nixed chemo. In fact until pathology report after surgery I was believing I wouldn't have to do it, only radiation. If you can avoid it, good for you! You can be asked to me monitored with more frequency, that could help put you at ease.

  • Georgia1
    Georgia1 Member Posts: 1,321
    edited January 2018

    Hi Chandi. My situation was quite similar to yours although one of my two tumors was mixed IDC/ILC and one was ILC. My Oncotype DX score was 18 and both hospitals I consulted agreed on no chemo. So personally I think you breathe a sigh of relief, commit to starting radiation, and while you're at it ask if you can get the short course which is four weeks and not six. Then get ready to kick cancer's butt! :)

  • NotBrokenJustBent
    NotBrokenJustBent Member Posts: 394
    edited January 2018

    My oncotype was 20 and I did the chemo. It was the hardest decision I have ever had to make and I will never know if it was the right one. I do have permanent side effects but perhaps I can't blame chemo wholly. I have no advice except I was there and I don't envy your difficult choice.

Categories