48 years old with stage 1 ILC - Tamoxifen Advice

Hey! Well--I was writing quickly so may have been vague. I meant 9-12 mos might be all I could handle and it would be an improvement. But I also concluded from these studies that two doubling cycles for the tumor(s) in question was "enough," to eradicate dormant tumor cells. (Again, this is one study--and they qualify their work too as all good scientists do.) What they meant was depending on your tumor grade, were that tumor to remain it'd "double" in volume over a given period of time--something like from 6 to 18 mos depending on fast or slow growing. Their results support taking HT for at least two doubling times of the tumor you had to kind of clear out dormant cells.

Now, does this protect from a new primary? That's one of their key questions--and they seem to think that patients may have been overtreated by the claim to prevent "new primaries." But if you've had bilateral mastectomy, and it's ruining your quality of life . . .

I still don't think they're claiming that every single itty bitty dormant circulating tumor cell can be gotten out of your body, but that doing hormone therapy for two volume doubling times (which is anywhere from a year to 3 1/2?) is what's most demonstrably helpful.

OTOH, some dormant tumor cells may have already changed by the time the tumor is discovered--and I think there's some concern (please correct me if I've got this wrong) that HT might 'incentivize" dormant cells to evolve in a different way to evade it, a way that might put the patient at risk in another way.

These are all scary things to contemplate--the fact that there may be unintentional iatrogenic harm in prior BC tx protocols, but the best research is willing to challenge old shibboleths. It may just be that certain chemos paradoxically trigger tumor cell evolution--I've even read in a 2023 article that the angiogenesis of major surgery can itself be tumorigenic, which made me really crazy. I mean, what? Why have a mastectomy then? It's all the more reason to make sure your patient doesn't have silent metastasis before you rush to surgery for supposed Stage 1, right?

I'm a trained social scientist myself so I'm comfortable w/ these conflicting interpretations, but when it's applied to a life and death matter, maintaining an equinanimous attitude toward scientific uncertainty is a little more challenging. 🙂

I agree with every word of this post, that is how I read it as well, but could never have explained it as well as you have.
I remember reading about taking out the largest tumor could encourage smaller tumors to grow and they knew that even when I was diagnosed originally almost 20 years ago.
I truly hope you can look back at the intervening years like I do and cheer for the newer patients getting easier or less treatments.

Hi! Here's some background on me:
At diagnosis in March 2022:
IDC rt breast. Stage 1 Grade A. high-grade, composite score 9/9; 11 mm tumor; clear margins.
ER +2-3 in 95% of the cells, PR positive possibly 95% of the cells with high Ki 67 of 35% and HER2 - Oncotype:18 Brca gene Neg.
Also Birth mom dx DCIS age 58 (she took tamoxifen x5 yrs. It returned 12 years later, both breasts, she had DMX this year)
I had Lumpectomy with 2 Sentinel nodes dissection April 23
4 weeks radiation.
Age at dx: 52, peri-menopausal. Started tamoxifen 20 mg. I did horribly. Severe pain, fatigue, night sweats, hot flushes several times a day, "brain fog" (felt like I had dementia), terrible depression, no appetite, taste, headaches, insomnia. Tried 3 months. Re-tested hormones & was suddenly post-menopausal.
Then my Oncologist put me on letrozole - aromatase inhibitors. Thought it was going well for first couple weeks, then increased dose. I actually think I did worse on letrozole. Tried that for 3 months, miserably, then took a small break. Then tried every 3 days. Did that for 2 more months before I just couldn't do it any longer. After a month off, my Onc & I discussed benefit again. Went back on tamoxifen - THIS time only 10 mg every other day.
(NOTE: This time I was able to stay on my SSRI citalopram. I'm also on a clonidine patch for hot flash & night sweats - which controls somewhat. I'm also on transdermal estradiol (vaginal) - it's not systemic & it's safe. Helps my bladder urges, leaking & frequency & waking up all through the night!)
After only a couple weeks on tamoxifen, the severe brain fog & fatigue returned then the joint & muscle pain. Also awful dry eyes like "deflated" eyeballs, red, blurry, tearing and making the skin burn & peel underneath eyelids. I can't take it daily like she (Onc) wants me to. Research** says you can take 10 mg every other day & it's effective. It only comes in a 10 or 20 mg, but you can cut pill in half carefully. I started trying 5mg/day & I think it's a little better. It stays in your system a long time.
**I was unable to share link to research paper, but you can go to breastcancer "dot" org/ research-news/low-dose-tamoxifen-after-non-invasive-dx -Try that.
I meet with my Onc next week after a breast MRI on Friday. Will discuss ANY further adjuvant treatment at that time. I've tried for one year! I've been freaking miserable! My quality of life means a lot to me. I no longer feel like myself at all. I am (was) a "young" 50 something. My libido is all but gone, I basically feel "low-grade" ill all the time, scared to drive, can't walk.
Hopefully something here was helpful.
It's so good to hear others experiencing similar issues where we can discuss them.
XO

halperp @halperp I also have to go through same Lumpectomy then radiation and then Tamoxifen. I also have been recommended to do Lift/Reconstruction 2 weeks after Lumpectomy. Did you go with it?

So sorry to hear about your experience. Have you searched “Food to take and avoid while on tamoxifen “? I wonder whether it’s certain food you have makes the side effects more severe? Also, have you tried take tamoxifen at night? I take it at 9pm and I go to bed at 10pm. So other than occasional mild hot flashes, I didn’t notice fatigue or brain fog. My Integrative doctor also strongly recommends me take two spoons flax for “at least 10 years”. Research paper show flax is very effective for women on estrogen breast cancer.

I had a lumpectomy a year ago and then radiation and am now on Tamoxifen. I haven't noticed too many side effects other than hot flashes and tiredness. I did not do any lift after my lumpectomy.