Radiation & tamoxifen - necessary...?
Hi everyone, I’d really appreciate hearing from others in a similar situation.
I’m in my early 40s, no kids, not close to menopause, and recently had a lumpectomy for a 12 mm, grade 1, ER+/PR+ HER2- IDC (plus a small area of DCIS). Margins were clear, and there was no lymph node involvement. My Ki-67 is low (10%), and I’ve been told I don’t need chemo. I didn't really had symptoms, and we found it in my 1st ever MRI (my 1st ever mammogram+ultrasound weren't clear as the tissue was dense)- I decided to have it as my mum had an early BC in her late 40s so I wanted to check… we don't have the problematic genes tho. The surgeon noted there was no calcification and no need for PET-CT.
My doctors are recommending both radiation and tamoxifen, but I’m feeling unsure. Looking at tools like Breast Predict for hormone therapy, the benefit to mortality risk is practically absurd (0.3% for 5 years, 0.7% for 10 yrs, 1.1% for 15yrs). I'm very healthy, exercise daily for years, healthy diet, don't drink or smoke. My breast are above average and their tissue is very dense. Women in my family have bad menopause (but normally late in our 50s) - incl. severe heart, eyes and skin issue, and I'm thinking an MRI (?) every 6 months is enough.
Given how small and slow-growing the tumor was, and how low my recurrence risk seems to be, I’m struggling with whether I really need both/ either radiation and tamoxifen. I know they each reduce recurrence in different ways, but I’d love to hear from others who had similar pathology — especially other younger/pre-menopausal women:
- Did you do both radiation and hormone therapy?
- If you only did one (or neither), how did you make that decision?
- How have you found the side effects, especially on tamoxifen?
I'm also discussing with my partner if we want a baby… it's now or never I guess.
My mum had chemo + radiation at the time, and also refused tamoxifen. She has been BC-free for almost 30yrs now (knock on wood!)
I'm meeting with the medical oncologist for the first time this Friday and keen to challenge the conventional/ standard treatment! if you have any research to share and how her - that would be wonderful!
I'm grateful for any insights or personal stories you’re open to sharing — I’m feeling a bit stuck and trying to weigh peace of mind vs. quality of life. Thanks so much.
Comments
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I did both. I was diagnosed with a 1.3cm (a tiny bit bigger than yours) grade 2 Stage IA ER+/PR+/HER2- IDC at 64, 9 years after menopause. Because of that, tamoxifen's risk of blood clots (with my family cardiovascular disease history) and its incompatibility with the type of antidepressant I take, I took an aromatase inhibitor (letrozole) as my endocrine therapy. My tumor was found on my 20th annual routine screening mammogram—no lump or symptoms. No MRI needed, as my breasts are not dense. Low OncotypeDX score. I had a lumpectomy followed by a short course (16 sessions) of high-dose radiation targeted to the tumor "bed." Started letrozole thereafter, took it for 6-1/3 years.
At your age the benefits of both radiation and endocrine therapy definitely outweigh the burdens. With dense breasts, you need to be extra-vigilant with future screenings. I've never heard of "Breast Predict," but other online tools (both US & UK) show a much greater recurrence-free-survival benefit to endocrine therapy. And radiation is essential after lumpectomy in order to "mop up" any micromets that may have been left behind despite clear margins and negative lymph nodes. Nowadays, there are radiation therapies that are even less burdensome than the then-revolutionary version I had 10 years ago.
Bravo for your healthy lifestyle—it improves your odds, but it isn't 100% protective against recurrence. You did get breast cancer (both IDC & DCIS) anyway.
You are too young, IMHO, to gamble with your future by challenging the "conventional/standard treatment." Your mom is a 30-year survivor because she underwent the "conventional/standard treatment." It's a bonus that your cancer, like mine, was too slow-growing for chemo to be necessary or even effective. (BTW, Ki-67 isn't often tested these days for "Luminal A" breast cancers like ours, at least not in the US). And there is no need for a PET scan unless you are exhibiting signs of possible metastasis—which is, hopefully, decades down the road, if ever. CT scans are not done for breast cancer either.
I was able to get the short, targeted radiation therapy because I was nearly 65—my radiation oncologist participated in the study that pioneered it in 2015. Nowadays, the latest thought is that women over 75 can skip radiation and perhaps even sentinel node biopsy after lumpectomy if their tumors are small and "indolent" enough. You're not there yet.
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