Sep 28, 2021 01:17PM ShetlandPony wrote:
I have been on tamoxifen, and I have been punted into menopause (by chemo) followed by aromasin (briefly) then letrozole with Ibrance. I see two issues for you to consider. One is your risk level and the effectiveness of the treatment, and the other is side effects. Has your oncologist discussed both of these in detail with you, talked about how to make such an important decision, and given you his/her expert opinion? I assume the option of starting with tamoxifen is to ease you into the menopause-like side effects of hormonal therapy. But in my opinion, it would be a risk I would not take, and here are two reasons:
First, you had a 6 cm tumor, a positive node, and you are young. These things represent more of a recurrence risk, and the risk we are most concerned about is "distant recurrence" which would be stage iv, metastatic, and incurable. If go straight to ovarian suppression and letrozole, you are hitting it hard right away with the stronger treatment.
Second, you had ILC. There is enough concern that tamoxifen may not be so effective for ILC that there is a trial going on to compare tamoxifen, the aromatase inhibitor anastrazole, and fulvestrant/Faslodex in early stage lobular breast cancer. (It is called A Trial of Endocrine Response in Women with Invasive Lobular Breast Cancer (TBCRC037) ClinicalTrials.gov NCT02206984). The BIG-98 study showed better recurrence-free survival among postmenopausal women who took letrozole compared to tamoxifen. There is even a laboratory study showing that with ILC tamoxifen may even feed the cancer. (Will try to find the citation and edit to include it here.) I would not bet my life on tamoxifen. (Oh yeah, I did and that did not turn out so well. Obviously you should not base your decision on someone else's outcome. But do discuss tamoxifen and ILC with your oncologist.)
As far as side effects, I think most women find the side effects of tamoxifen easier. For me it was hot flashes and vaginal dryness that was ok as long as I had KY handy. And maybe some trouble finding words. Letrozole had similar effects on me but I was also more stiff and achy, and movement helped with that, and I needed vaginal moisturizer. Still, though starting with tamoxifen might reduce side effects, that is nothing compared to being in lifetime treatment with the targeted therapies and chemo that would be necessary to buy you a few more years at stage iv.
The other thing to keep in mind is that with either med you may initially feel strong side effects that will diminish as your body adjusts, so give it a little time. My first week on tamoxifen I found my ability to plan and organize a task was affected, but this did not last. Likewise, when I first started the aromatase inhibitor aromasin along with permanent chemopause, I had a period of depression, but this did not last. (It's harder to tease out why as I then switched to letrozole.) Also, know that if you find Zoladex and letrozole intolerable, you can stop them and go to a different therapy. It's reversible. So you can give them a try. (You can easily find lots of complaints about side effects hormonal therapy, but keep in mind that many women do well with them and do not necessarily post that.)
As my oncologist said to me as I left her office, "Enjoy your hot flashes!" Lol. They are kind of interesting.