Tamoxifen Side Effects & Experiences | The Patient Story

Tamoxifen Side Effects & Patient Stories

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. ”

— Rachel Yasui (Invasive Ductal Carcinoma Stage 1B)

“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.”

— Cat Levitt (Ductal Carcinoma)

“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”

— Tina Conrad (Ductal & Lobular Carcinoma In Situ)

“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.”

— Natalie Wilson (Ductal Carcinoma In Situ)

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. ”

— Demi DeMas (Desmoid Tumor), Sarcoma


All Tamoxifen Patient Experiences

Sarcoma Stories: Soft Tissue Sarcoma, Desmoid Tumor, Stage 4, AYA Cancer

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
Sarcoma Stories: Soft Tissue Sarcoma, Desmoid Tumor, AYA Cancer

Demi D., Desmoid Tumor



Cancer details: Rare, <3% of all soft tissue tumors, more common in women
1st Symptoms: fatigue, lump in hip
Treatment: Surgery, radiation, chemo
Breast Cancer Stories: IDC & DCIS, Stage 2B, ER+ | Cat’s Story

Cat L., IDC & DCIS, Stage 2B



Cancer details: IDC is most common kind of breast cancer. DCIS means cancer has not spread into surrounding breast tissue
1st Symptoms: Pain in left breast radiating from lump
Treatment: Bilateral mastectomy, chemotherapy
Breast Cancer Stories: Invasive & Lobular, Stage 3A,  ER+ | Tina’s Story
Tina C., Ductal & Lobular Carcinoma in Situ, Stage 3A, ER+



Cancer details: Both ductal and lobular, estrogen receptor positive. Different than breast cancer Tina’s mom was diagnosed w/ twice.
1st Symptoms: Sunken in nipple of right breast
Treatment: Double mastectomy, chemotherapy, radiation, hormone therapy
Breast Cancer Stories: DCIS, Stage 0, ER+, Paget’s Disease | Natalie’s Story
Natalie W., Ductal Carcinoma In Situ, Stage 0, ER+; Paget’s Disease



Cancer Details: Only 1-4% of breast cancer cases also includes Paget’s
1st Symptoms: 2cm lump found in right breast
Treatment: Lumpectomy, double subcutaneous mastectomy, hormone therapy
Breast Cancer Stories: IDC, Stage 2B, ER+, PR+| Caitlin’s Story

Caitlin J., IDC, Stage 2B, ER/PR Positive



Cancer Details: ER/PR positive = estrogen and progesterone receptor positive
1st Symptoms:
Lump found on breast
Treatment:
Lumpectomy, AC/T chemotherapy, radiation, and hormone therapy (Lupron and Anastrozole)
Breast Cancer Stories: Invasive Ductal Carcinoma (IDC), Stage 1B | Rachel’s Story

Rachel Y., IDC, Stage 1B



Cancer details: IDC is most common kind of breast cancer. Stage 1B.
1st Symptoms: None, caught by delayed mammogram
Treatment: Double mastectomy, neoadjuvant chemotherapy, hormone therapy Tamoxifen
Breast Cancer Stories: IDC, Stage 1, ER+, PR+, HER2- | Amelia’s Story

Amelia L., IDC, Stage 1, ER/PR+, HER2-



Cancer details: IDC is most common kind of breast cancer.
1st Symptoms: Lump found during self breast exam
Treatment: TC chemotherapy; lumpectomy, double mastectomy, reconstruction; Tamoxifen