Chemo for 1.5% benefit at 47yr, how did you weigh it?
I am unfortunately diagnosed 4 weeks ago: IDC/NST, left breast, Stage IIA, Grade 2, node-negative, ER+ 80% / PR+ 90% / HER2- (IHC 0), low mitotic activity. MRI shows two foci 8mm apart with a subtle enhancing band between them, so either multifocal with a largest lesion of 26mm, or a single 58mm lesion. The tumor board called it borderline and went with multifocal T2.
I'm 47 and clearly premenopausal (FSH 2.6, LH 3.1, oestradiol 239, AMH 1.0). BRCA results expected in about five weeks. No genomic assay available since MammaPrint/Oncotype aren't indicated under 50 in the Netherlands, apparently because a low score doesn't reliably predict that chemo can be safely omitted in premenopausal women.
The proposed plan: neoadjuvant dose-dense AC followed by paclitaxel, after AC start with endocrine therapy, MRI mid-treatment, then surgery with breast conservation and then radiotherapy. Primary surgery was offered as an alternative if I'd rather have definitive pathology first. I'm currently being referred to a specialised cancer centre.
PREDICT v3 at 15 years gives chemotherapy an absolute benefit of +1.5% if it's 26mm (92% overall) or +2.8% if it's 58mm (89% overall), on top of radiotherapy and endocrine therapy. Endocrine therapy alone adds +3.7% to +5.8% (roughly twice as much). And PREDICT calculates endocrine benefit from tamoxifen data only, so if I end up on ovarian suppression or an AI, that number should go up and leave even less room for chemo to add.
I also suspect part of the measured chemo benefit in premenopausal women comes from chemo-induced ovarian failure rather than the cytotoxic effect itself, which makes me wonder whether ovarian suppression could deliver some of the same thing.
Two caveats I'm aware of: PREDICT is less reliable under 50 and may underestimate benefit, and the tool itself warns it's less accurate above 50mm.
What worries me is long-term toxicity, like persistent fatigue, neuropathy, cognitive effects. I'd genuinely like to hear from people who had dose-dense AC-T how they're doing two or more years out, good and bad.
One possibly irrelevant detail: I had a hormonal IUD placed three months ago for heavy periods and low ferritin. The advice is to remove it during the second cycle of chemo. I've also never tolerated hormonal contraception well, which makes me wonder how I'll do on endocrine therapy long-term.
I know this question has been asked here before and that it's deeply personal. I'm not looking for anyone to decide for me. I'd just like to hear how others weighed a benefit this small, and whether anything in this plan strikes you as worth questioning.
Thanks a lot!
Neeltje
Answers
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First I am sorry to hear of your diagnosis. Starting start with stat's, percentage matter but for many of us it often comes down to what can you live with ( or not) as an outcome to decisions you make? What can your partner with? family live with? Not necessarily a small benefit if it prevents reoccurrence, prevents spread, prevents metastases. It does somewhat depend on your thinking.
As you are newly diagnosed some of this may not have come up yet but it will. There are so many other considerations that will continue to show up,. Many of your own questions end up being questions asked back to you rather than answers. You may not know the answer, the answers may change, it may be things you have thought about never thought about. You will definitely start to formulate your own ideas and opinions as time goes on of what you are willing to do and not willing to do. And this may still change as more treatment, time etc. None of this is easy but it does get easier when you start to develop an idea of what is your thoughts on how to deal with this as whole, parts individually etc. and you have to be able live with consequences of your decisions. For example if you decided not to do chemo or radio, as you the benefit seemed low and you had a reoccurrence and/or metastatic could you live with your decision?
For most things, my opinion is to almost always go for worst case and work back from there. Regarding the tumour size, in my case I would consider it larger and decide what to do based on that. This is a great example of where you can start forming opinions for yourself and advocating for what you want. What do you think? Do you think it is smaller or larger? if this is all too new and you just don’t know don’t worry, you will get there in time. it is a learning curve and there is not right or wrong answers and you can change your mind, these are impossible decisions to make.
Regarding hormone testing I would say these are low to normal range and oestradiol shows still ovaries still producing estrogen. Did the doctors say premenopausal or ? Was this tested before or after hormonal IUD? further comment on IUD below,
BRCA testing. It is great to have already done the testing. Would you hold off treatment until results are in? Would you change treatment based on results? Do you plan to proceed with treatment changing plans if results were positive?
MammaPrint/OnctoType. Is this something you would use to make a decision? not your doctors, you, if yes would consider funding it? If not than it does not really matter it is just another piece of the puzzle.
Would you consider surgery first or you are not sure? The kind of difference that can make is less surgery for example. If you chose lumpectomy, and pathology, margins are not clear it is a second surgery, potential mastectomy. Regarding ovarian suppression. Far more complex than that but essentially yes, ovary suppression helps. Often it is prescribed to take injection (Zoladex) for ovary suppression, that also opens up AIs, which block estrogen in a different way than Tamoxifen. And is yet another way blocking of hormones. Basically, everything you do can increase your odds of survival, lessen reoccurrence and metastases. Would you consider surgery before chemo? Do you think you will do chemo? and rads?
You were asking about the fatigue, toxicity, etc. Everyone responds differently, nothing stays the same, it is ever changing with treatment, with time , with different medications. it is true fatigue and chemo brain do seem to impact most of us to different levels. The studies into chemo brain show that potentially it is not the drugs themself but the cancer diagnosis that starts these changes. Try to take it one day a time, it really is impossible to predict how to you will feel in the future. The most important things now really are trying to get all the cancer, preventing spread and reoccurance, trying to do everything you can to get through it.
Regarding IUD I would absolutely be questioning that, my understanding is once diagnosed, all hormonal medication should be stopped or removed ASAP inclduign hormonal IUDs to stop the spread. I did a quick search and that still seems to be guidelines to prevent spread due to progestin in hormonal IUDs. It is definitely would questioning why they would want to leave it in until 2nd round when generally the idea is stopping hormones to stop spread? Although when taking tamoxifen it can protect the uterine lining, I would assume at this point they would be more concerned with the spread of cancer. Endocrine therapy is quite different to contraception and synthetic hormones that contraception adds. it is difficult to compare contraception and endocrine therapy because they do work a differently with Tamoxifen and AIs you are trying to supress as much of hormones as possible. Tamoxifen and other AI’s work in similar but different ways. As you may be aware Tamoxifen is for premenopausal, other AI can be used post-menopausal, in connection with Zoladex, or after ovary removal.
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