Tamoxifen and mental health

@leculdesac makes an important point that Tamoxifen, AI’s, and other treatments can exacerbate underlying conditions & we need to ensure that our doctors are aware of them. My mantra at appointments is “assume nothing “, so at each appointment I bring up my conditions/concerns to the doctor. Like it or not, practitioners are seeing lots of patients and may or may not have the time to really review my history, and the intake nurse may or may not relay the information.

I declined AI’s due to osteoporosis, extremely low Oncotype, and high cholesterol.

Once you start meds, let the doctor know of anything that seems off.
I was started on 20mg tamoxifen & developed severe leg cramps that kept me from getting good sleep. I told my oncologist & she lowered the dose to 5 mg. Now I occasionally have leg cramps (once every 2 months?).
I did have brain fog & gained a couple of pounds when the cramps were keeping me from sleeping well, but when I took the low dose 5mg (baby tam) & slept better, those issues stopped.

Most importantly, know that you have time to ask questions and research your options before starting meds.

I was stage 2 HER2 negative and ER + low risk same standard of care protocol. I declined both radiation and endocrine therapy. Changed my diet fasting and juicing no sugar, taking integrative path. Can’t bear the toxicity of the post op options since I just got toxicity out of my body. Good luck with your decision.

Hi
Totally agree with you. I tried tamoxifen for 6 days. Side effects were immediate . I stopped and decided not to take any of these drugs. I researched alot and long term effects are scary. I have a good oncologist and he put my bc pathology in a program and said chances of it making difference for recurrence was 2 people out of 100. So not worth the risk.

I've been taking Tamoxifen for 3 months (I am pre-menopausal). I found that some of the side effects that I started feeling in the first couple of weeks have subsided - such as feeling extra emotional all of the time and reduced libido. I haven't really had hot flashes yet, but I do get night sweats more often than before I started the meds. While of course some people chose not to take Tamoxifen because it can be rough, there are others in some support groups who have said they wish they had because their cancer came back metastasized.

There are some up sides to tamoxifen, if I’m reading the research correctly. It is protective of the myelin sheath on nerves. It is cardio protective. It has properties that change some fat into brown fat which is better. It can help protect the bone you have. It is a mild systemic anti-fungal.

At my age, 70, tamoxifen is acting as an estrogen agonist and has reversed my genitourinary syndrome of menopause. Maybe someday they’ll figure out that they need to add progestin to protect against uterine cancer.

If I were younger, I would take the risk and put the tiniest amount of estradiol .01% on my clitoris only to improve blood flow and libido.

Hi! May I ask your age? I am 46 and will be starting tamoxifen in a few weeks. Did you get any migraines or vaginal dryness with this med? Nausea? I am a bit nervous to start it, but not terribly as my oncologist said if I can’t handle the 20MG tablet she is willing to adjust the Dosage for me. Also what stage was your breast cancer? Mine was DCIS. had lumpectomy plus radiation.

It worries me that do have so many patients. DMX 3 weeks and I feel oncologist is very pushy. How radiation can a small body take? Then she started telling me of some 5 year pill. She calls me different name, I have to correct her. I know none of my numbers. I will have to find oncologist that as little more time for me.
I'm a beginner at ILC breat cancer

I started the day after my 49th birthday. I didn't have those side effects you mentioned (not yet at least), but people can react differently. And some side effects can show up later.

I was Stage 1a IDC + DCIS, had Lumpectomy & Sentinel Lymph Node Biopsy, 15 rounds of radiation.

I keep a little journal with any possible side effects that pop up, so I can look back on when they started, if they stuck around, or worsened. And keep in touch with oncology team for concerns.

You’re on the right track to find an oncologist that you trust. I changed both my surgeon and oncologist to get a good fit and it was well worth the time & hassle. It’s at least a 5 year relationship with follow-ups, so it’s important to have an oncologist who listens & will make changes if necessary.
To this day I continue to bring up my conditions and concerns to the docs at each appointment, including my primary care doc.
Do you have access to a patient portal? Mine has all of my visit notes, OP notes, pathology reports etc.
At some point we were all beginners to this BC stuff - that’s why this forum is so helpful!

I was talked into trying Tamoxifen because my oncotype was 29 and I had a disastrous 7 months on Anastrozole. (Teariness, mood swings, insomnia, brain fog, blurry vision, excruciating joint and back pain, vivid violent nightmares and then my left knee blew out and put me in a wheelchair for 6 months. I also had 2 teeth fall out (shear off below gumline after routine cleaning.) I was off everything for 9 months, and my TX oncologist (finally) got me my oncotype, 17 months late. Initially, my Illinois oncologist refused to order one, saying, "You don't need one." I started out apprehensively, taking 10 mg. every other day from April 23 to June 23. Oncologist in Texas told me I needed to step it up to 20 mg. daily, which I did on June 23. I was just barely able to tolerate the 5 mg. which made me have to pee all the time. On 20 mg. I could only stay up 3 hours at a time and had non-stop UTIs. I took 2 strong antibiotics for the UTIs and then got a fungal infection from them and took Flucozamine. Now my liver enzymes are bad and are roughly doubling every 20 days. I was fine until May 1st. Now, I am not fine and the numbers for the ALT and AST have hit 222 and 228 and I need a liver specialist. I haven't taken either of the drugs since Aug. 30, 2023, so I have no idea why my LFTs are skyrocketing, but I am awaiting permission to be see at the Texas Liver Institute and already had a CT scan with contrast (May 13). The irony is that I had gone in to be tested for a clinical trial for non-alcoholic fatty liver disease in Austin and my liver enzymes were absolutely fine---then. Now, they are not.