Tamoxifen Side Effects & Experiences
Tamoxifen is a hormone therapy drug used primarily to treat breast cancer in women and men, in particular estrogen receptor-positive (ER+) breast cancer in both early stage and metastatic cases.
It may also be used to cut down the risk of invasive breast cancer in patients diagnosed with ductal carcinoma in situ (DCIS), following surgery and radiation treatment. Tamoxifen is also used in other cancers, including sarcoma.
Patient Stories with Tamoxifen
Here’s what cancer patients had to say about their experiences with Tamoxifen:
Breast Cancer Stories
“My oncologist just said most women do really good on tamoxifen, which I thought was for five years, but for me it’s ten years. He said that women have a greater chance for the cancer not coming back.
[Side effects] Joint muscle pain. It seems like I’ve already gone through menopause. And then weight gain. I have not been able to lose weight. So my doctor mentioned to me to try two weeks of getting off of tamoxifen or stopping tamoxifen to see if it helps, but it didn’t. ”
“Tamoxifen suppresses your estrogen, and it’s just a pill you take. My tumor was ER+, so I started that after the exchange surgery. I didn’t need radiation, so that was good, but Tamoxifen was very rough.
I was on Tamoxifen for about 11 months. I started to get really bad suicidal ideation. I couldn’t get out of bed, shower, or do anything. I went off of it for a month, and I felt so much better. They put me back on it, and I was having the same problems. I went to the hospital and told them, “I’m not going to do anything, but this is happening.” They took me off of it immediately, and currently I’m not on anything. I feel more like myself.”
“Because my breast cancer was estrogen positive, I was going to do some hormone blocking thing. Some people don’t react to well to Tamoxifen, so there’s different kinds, different estrogen blocking methods but he wanted to come and try me on the Tamoxifen first.
I still have hot flashes, I definitely have some moody PMS issues when I first was on Tamoxifen, but I don’t know if it’s because I’m in full-blown menopause now. But I feel fine, I feel just like my normal self”
“To be honest, there were a lot of low points. In the first five years – when I got diagnosed in 2008, I was on the tamoxifen. The tamoxifen can throw you into early menopause. With that comes a lot of emotional struggles.
When I speak about this, I’m very candid about it because women have to understand that when they’re on tamoxifen or any other medication like it, you’re going to feel a lot of side effects. You’re on it for five years or more, so you have to learn how to deal with it.”
Sarcoma Stories
“They decided to put me on Tamoxifen, which is used for breast cancer. I did that for a month or two. It didn’t do anything whatsoever. ”
All Tamoxifen Patient Experiences
Anna R., triple positive breast cancer
Symptoms: Lump in breast
Treatment:Surgery (lumpectomy); Hormone therapy (Tamoxifen); Chemotherapy; Radiation
Krista B., IDC, Stage 1A, HR+, HER2-, ATM Mutation
Symptom: None; abnormality detected in breast MRI
Treatments: Surgery (double mastectomy with DIEP flap reconstruction), selective estrogen receptor modulator (tamoxifen)
Kelsey H., Stage 2B, ER+
Symptom: Slightly tender lump
Treatment: Chemotherapy (Adriamycin, cyclophosphamide, Taxol switched to Abraxane), surgery (double mastectomy with axillary lymph node chain removal), radiation, selective estrogen receptor modulator (tamoxifen), CDK inhibitor (Verzenio), GnRH agonist (Lupron)
Kelly T., Stage 3C, Triple Negative
Symptoms: Swollen lymph nodes on the neck, high white blood count
Treatment: Chemotherapy (doxorubicin, cyclophosphamide, paclitaxel, carboplatin, capecitabine), surgery (nipple-sparing, skin-sparing double mastectomy), radiation, hormone therapy (tamoxifen)
Alicia B., Desmoid Tumor, Stage 4
Cancer details: Rare, <3% of all soft tissue tumors, more common in women
1st Symptoms: lump found in right armpit
Treatment: Chemo, radiation, targeted therapy, clinical trials, surgery, including forequarter amputation