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