Tamoxifen for Breast Cancer User Reviews (Page 3)

• Nan...
• November 18, 2020

"I was on Tamoxifen for a total of two weeks. The first week went alright, with mild and fleeting hot flashes. By the second week, I was bent over with pelvic pain and pressure. It got so bad I was in tears by the time I saw my oncologist. They took me off of the Tamoxifen and sent me to a gynecologist. My uterine wall was thicker than they like to see. They told me Tamoxifen couldn’t possibly thicken the uterus that fast, but they didn’t rule it out. I haven’t had any previous issues - not for over 22 years. So, too coincidental. After almost 3 weeks off of the Tamoxifen, my symptoms are gone, and my gynecologist thinks my uterine wall will be thinner at my next check-up in a few months."

• Anonymous
• Taken for 6 months to 1 year
• December 27, 2021

"I was diagnosed in March 2021, the year that keeps giving!!! I thought working in care settings during a pandemic was bad... I have been stripped, is the only way to describe tamoxifen. I'm a shell, an angry, frustrated, agitated, confused, forgetful shell at 43 years old. I never expected this. My kids are amazing to tolerate me, my partner too, but we don't or couldn't reside together. I'd do anything to have my estrogen back, but how when my youngest is 5 years old. OMG, it's so bloody dark ages. I tell you what, if more men had to take tamoxifen, you'd bet your ass it wouldn't be used with all these side effects."

• Hel...
• Taken for less than 1 month
• November 11, 2021

"I’m telling you, if you have depression, do not take tamoxifen, it could push you over the edge. I had anxiety, sweats, back pain, chills. I was only on it for 16 days. The doctor told me to stop it for 3 weeks and see if things improve. I think I will take my chances, I had a bilateral mastectomy and no signs of cancer in the breasts. They got all of it with the biopsy."

• Ash...
• Taken for 2 to 5 years
• April 12, 2020

"I was diagnosed with stage 2 DCIS in 2015. I had a mastectomy, chemo, and radiation. I have been on Tamoxifen for 4 years. I’ve experienced hot flashes, vaginal dryness and tearing, dry mouth, urge incontinence, thinning hair, etc. But the hair on my legs is also thinner!"

• Mar...
• February 1, 2022

"I was on tamoxifen for 10 years after lumpectomy, type 2, stage 2, chemo, and radiotherapy. My GP said, 'Stay on it as long as you can,' diagnosed in 1993. I was re-diagnosed in September 2021, type 3, no spread, had total mastectomy and now having chemo + Herceptin. I totally recommend tamoxifen, it got me 28 years cancer-free. Good luck to all fighting this awful disease."

• cri...
• Taken for less than 1 month
• December 2, 2019

"I just started taking tamoxifen only 5 days ago, and I broke out in a rash and bumps, so I will be calling the doctor tomorrow to find out if this is normal and will go away. I know some things take time and will go away, we will see. I told him if I have side effects, I will cut the dosage from 20 to 10, and then to 5. He said I could do that, something is better than not doing anything, though the percentage will be less of a recurrence of breast cancer coming back. This is a scary thing to have to go through, for anyone."

• Jin...
• Taken for 2 to 5 years
• October 25, 2019

"Have been taking tamoxifen for 3 1/2 years, my estrogen levels are going through the roof, I'm anxious all the time, put on weight and very hard to lose. My liver shudders at night like I have been drinking hard."

• Bey...
• Taken for less than 1 month
• May 5, 2019

"I was diagnosed with breast cancer earlier this year. I’ve already had a nipple-sparing mastectomy. My doctor recommended chemo, but I refused. I’m only stage 0, stage 1, and my lymph nodes came back negative. Now my oncologist wants me to take Tamoxifen for 10 years. Most of the reviews here are negative, but I will give it a try and hope for the best."

• Anonymous
• Taken for 5 to 10 years
• March 22, 2023

"I was diagnosed in 2014 with Stage 0, DCIS. I had a lumpectomy, radiation, and Tamoxifen for 5 years. Five years became nine. In 2020, I was diagnosed with Lupus SLE due to symptoms such as hair loss, muscle fatigue, and joint pain. Blood work confirmed the diagnosis. My symptoms worsened over the next couple of years, you name it, I had it and blamed Lupus. My ONC just took me off of it after nine years (not 10, but 9 with no reason). My Rheumy (for Lupus) just told me she's excited to see how this will affect me. I went home and googled the long-term side effects of Tamoxifen, and within two days of stopping it, I noticed a significant improvement. I am no longer shuffling around like a 90 yo in the mornings (I'm 60), no more achy, throbbing, fiery feet at night, no puffiness, etc. My PCP told me when I was diagnosed with Lupus she didn't think I had it that bad, and all along I've thought to myself, WOW, if this isn't that bad, I would hate to see what bad is like."

• Jmh...
• Taken for 1 to 2 years
• March 26, 2023

"I started tamoxifen one year ago. For the first four months, I had not one side effect, but then I slowly started getting side effects. I was severely depressed, angry, and agitated, had hair loss, sweats, chills, insomnia, tiredness, aches and pains in my ankles and knees, pins and needles, and cramps, and the worst is the UTI, but when you have tested, it’s negative. I just get the side effects of UTIs, so can’t have any medicine as there is no infection, hmmm. It’s easy to take. I’m on 20 mg daily for 10 years as I’ve had invasive lobular breast cancer and had some lymph nodes removed as well. The only good thing with this drug is I haven’t had a period in five months or any period cramps. I’m 52 years old and was not menopausal, but I’ve found different brands give different side effects, and trying to get the brand you prefer is much harder than people think. This is a potent drug that is doing at the minute what it’s supposed to do, so I will carry on taking it."

• Ney...
• July 27, 2021

"I was diagnosed with breast cancer last year at the age of 32 and had my mastectomy on Oct 28, 2020. I began taking the tamoxifen in Feb this year (2021) and stopped after a few days. After visiting my oncologist, I realized how important it was that I continue with the medication. I’ve taken the medication consistently for two months, and within the months, I’ve experienced hot flashes, insomnia, leg pains, and mood swings that have interfered with my life. Counseling is a great help along with my support system. On top of this, I can’t begin freezing my eggs until after being on the medication for three years. There are a lot of sacrifices I have to make and realities that I have to face at now age 33. I want to live and will do what’s necessary to make sure that I give myself that chance to."

• Jen...
• Taken for 5 to 10 years
• October 29, 2021

"I am so happy to have found a forum about this drug. There aren't many blog groups about Tamoxifen, and I would love to bounce my side effects off of others. I am 44 years old, and I have been on Tamoxifen for almost two years. I feel like I am experiencing every side effect on the list. I was diagnosed with DCIS. After a lumpectomy and lymph node removal surgery, I underwent 25 rounds of radiation, and here I am for a recommended 5 years' worth. I have been experiencing shortness of breath, lightheadedness, severe mood swings (like 0-60 in seconds), discharge comes and goes. Some days it is worse than others. I was having severe night sweats in the very beginning, but when I told my doctor about it, she suggested I take a 2-week break to 'reset' my system. After the 2-week break, I went back on the Tamoxifen, and the night sweats were a lot less! Even if I have to throw the covers off a little bit, I sleep a lot better now than I did."

• Anonymous
• Taken for 5 to 10 years
• March 8, 2013

"I took Tamoxifen for 5 years with very little side effects. I had some weight gain, but nothing I could not handle. I had hot flashes in the beginning, but finally went away."

• ber...
• April 22, 2009

Tamoxifen "Positive and Negative points. Makes you gain weight, feel moody, and bloated. Fluid retention is bad."

• Anonymous
• Taken for 6 months to 1 year
• May 15, 2017

"I don't like this medicine. The more I took it, the more I got side effects. I don't feel myself. I'm going to ask my Dr if I can get off it. I've only been taking it for 1 year, and I hate it."

• Anonymous
• Taken for 2 to 5 years
• February 14, 2014

Tamoxifen "Bones hurt a lot, hot flashes were really bad."

• Hap...
• Taken for 1 to 2 years
• April 1, 2018

"I have been on this drug for one year. Have pain, weight gain, lack of sleep, tiredness, but I am alive. I think it gets easier as time passes. I try to remain positive."

• Ina...
• Taken for 1 to 2 years
• November 22, 2020

"I can relate to leg cramps at night, severe back pain, and insomnia. I’ve picked up a lot of weight and feel constantly swollen. Anyone else with these last two symptoms?"

• Tea...
• Taken for 1 to 6 months
• November 5, 2019

"Horrible joint pain in wrists and arms. Unbearable... I feel as if my wrists are broken."

• nre...
• October 12, 2020

Tamoxifen "I feel my thought process is delayed after commencing this medication, which can be frustrating. Leg cramps are minimal and occur only when in bed. Minimal side effects if I remain cancer free."

• Amy...
• August 15, 2017

"Diagnosed at age 40 (in 2012) with Stage IIa invasive ductal carcinoma. E/P+ HER2 -"