48 years old with stage 1 ILC - Tamoxifen Advice

Hello @halperp I understand the initial desire to just feel good again. This is a decision only you can make but when you are deciding try remember that many, many women take these drugs with little side effects. They aren’t usually the people talking the loudest on forums or social media. I am glad your doctor is recommending that you do a trial period. I think “what a great idea”, then talk again.
I was 35 when I started my journey and 36 when I started tamoxifen. I had to do everything I could so that I would not have to look back and think I should have done more. The worst of my side effects were the hot flashes. Tamoxifen will make you essentially menopausal, but not every woman struggles badly with menopause either.
I would be making a list of all the reasons for and against, then I would tear it up and go with my heart because you have to be able to live with what you decide.
May I ask if you have started into age related menopause yet?

Thx for the response—appreciate the advice!

No age related menopausal symptoms yet—regular periods. I probably have 4-5 years before that happens, based on my hormone levels , sisters/mom.

Hi. Everyone reacts differently to Tamoxifen. What I did was to ask for Tamoxifen in 10 mg. Doses, and then get a pill cutter and cut the pills in half. I started with 5 mg., and then after 2 weeks, for me, I went up to 10mg. I was on that for 3 months. Then I went up to 10 1/2 mg. Unfortunately, I started getting bleeding, so I went back to 10mg. My oncologist said it was better than nothing, and would be beneficial. I wish more oncologists would do this protocol for their patients.

Hi! It takes a village and appreciate our group! I had similar ILC diagnosed in October, lumpectomy, radiation wrapped in January and since 57 yrs (menopause) I was prescribed Letrozole and I'm hanging in! Vaginal dryness my biggest complaint but managing with OTC Replens and lots of walking, strength building with bands and weights for osteopenia and some joint pain. I added Turmeric and Nordic Fish Caps for Omega 3's which I think have been helping with joint creekiness. I will say most who are managing in AI's, Tamoxifen well do not post so please keep that in mind and give it a try. Keep us posted..xo

thank you for your honestly - I appreciate it. I know I'll have these issues anyway once I enter into menopause - but I feel like I still have time before that happens!!!

I will likely end up trying it - I just have to have the right attitude around it as well - so thinking it through and hearing about other experiences helps me prepare.

Best of luck to you as well!!!

Just wanted to emphasize that many women have minimal or manageable side effects in these drugs. I have been on an AI for over 1 year now. I did have effects the first six months but nothing debilitating. After that, the effects evened out. My doctor told me regular exercise is very important. I know it's scary but I wouldn't base your decision on what you read online. It's disproportionate from the actual population's reaction.

I sent you a private message, am open to chat w you about my experience! Been on it since June 24th. I have a few side effects, but tolerable. Dr wants to switch me to an AI because I'm having my ovaries out ( next week) and will be in real menopause and I'm very reluctant since I feel like I manage this current state.

I was diagnosed with breast cancer a little over 5 years ago. I was a stage 2a. First I was prescribed Anastrozole following surgery to remove the tumor. I had some pretty severe memory loss from the Anastrozole that my doctor switched me to Tomoxifin. Shortly after beginning that drug, I broke out in hives. Not sure if the Tomoxifin was the cause of the hives, but it was likely there was something in it that I was allergic to. Then my doctor switched me to Exemestane and I did better on on that. IMO, all of the breast cancer drugs have some side effects. Try to find one with the least problems for you. To my knowledge, drug therapy isn’t mandatory following surgical removal of the cancer, in the lower risk stage of the disease. But if you can tolerate it, then it’s another layer of protection to prevent recurrence.

https://www.nature.com/articles/s41416-020-01161-4#Sec11
I think it's this article. Maybe this one too: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9931789/.

These, and a recent article series in Nature, introduced me to the newer "parallel model" of micrometastasis once cancer has become invasive. The idea is that the cells are already dormant, so what do you do to keep them that way--and what is no longer necessary. Fascinating debates.

I agree that it is all fascinating and there is much research being done everywhere on how to predict who will become metastatic and when. I read both of those, thank you for sending them, I was pretty shocked by the kind of blanket statement that 9 to 12 months was enough. Especially since I took 15 years of endocrine therapy. After reading them both I realized that it probably was your specific type of cancer that was essentially 9 to 12 months if the hypothesis is correct.
I think even knowing all they know now, I still would probably have had to do most of that. Lol 😂
I was really happy to read all of this because it means that newer patients go through less treatment, and less harsh treatments like chemo too. I have also been reading on how they are starting to pull back on radiation. Just mind boggling. 🤪
Are you still thinking 20% dose for starters, what does your doctor think?