Side effects of Tamoxifen

servivor said:

hi, my name is carolyn i'am a breast cancer servivor its been 3yrs i had a radical mestectomy on my right side i was diagnosed in 2000. I have been on tomoxifen for almost 2 yrs i was reading in my cancer care magazine about the side affects of this med. In Nov of this year because of the tomoxifen i started to bleed i thought it was my period started, but was i wronge for 3 days i was in an out of ER at the hospital . and the color of the blood was wrong and i had headackes and bad cramps. the cancer center said it was my body trying to caught up ha!!!I almost bleed todeath with what they call break thru bleeding i had fibriod tumores so bad that when they did the DNC it was like going over a golf ball feild, they did a emergancy Historectomy hip tp hip and it was from the tomoxifen. see if they will put you on FEMRA it is new and does not have all those side affects as the other. I hope i am not trying to scare you but i almost lost my life again. once cancer then the estrogen blocker . i have a home e-mail if you need more info it is appygal58@yahoo.com But i am stiill going strong still a servivor iam 47 and feeling a lot better. carolyn

Hi I was diagnosed with 2 types of breast cancer in May of 2013. I had a double mastectomy and was started on Tamoxifen. I was pre menopausal. I had never had cysts on my ovaries in my life but I started developing multiple cysts some the size of lemons. I had multiple vaginal ultrasounds to monitor the cysts and the blood flow to my ovaries. My GYN also monitored my estrogen levels, the cysts kept forming some would rupture and my estrogen levels were not decreasing. Some days the levels increased! I had only been on Tamoxifen for 5 months. I had other side effects as well, joint pain, nausea and vomiting, moodiness. ...My body was not going into a medical menopause, it was fighting hard against it.

So this past April my GYN and my Oncologist agreed that I had to remove my ovaries. 

My Oncologist prescrbed a medication (similar to Tamoxifen but for post menopausal women). Again I had the nausea and vomiting so we agreed to stop. My Oncologist is watching me closely and I am feeling better. 

 It has been 1 year and 5 months since my double mastectomy.

I was diagnosed in October 2014 with two types of breast cancer on the left side only.  I am ER+, PR+, HER2-, Grade 3+ and Stage IIa, premenapausal, 47 years old.  On 11/14, I had a lumpectomy, clean margins, clear lymph nodes.  My oncotyping suggests chemo will not be effective for my types of cancers; therefore, I have 30 rounds of radiation therapy coming up.  Then, I will be put on 5 years of Tamoxifen, then 5 years of another drug (not decided yet on which one, and possible HT injection - cannot remember the name he used and why he said I may need it).  My oncologist told me it can cause serious side effects, such as uterine cancer and ovarian cysts.  I was told in the case of cysts, the ovaries would be removed.  My mother is a 30 year ovarian cancer survivor, so it worries me to be placed on a medication that can cause the same thing that almost killed my mother.  I have recently had a pre-cancerous screening through a pap test and have been referred to see the gyn on 12/22 to review the options.  I was told, still, the benefits far outweigh the side effects.  I'm not so sure about that.  It sounds like lots of people have had serious issues after being placed on the drug.

vickiek811 said:

I was diagnosed in October

I was diagnosed in October 2014 with two types of breast cancer on the left side only.  I am ER+, PR+, HER2-, Grade 3+ and Stage IIa, premenapausal, 47 years old.  On 11/14, I had a lumpectomy, clean margins, clear lymph nodes.  My oncotyping suggests chemo will not be effective for my types of cancers; therefore, I have 30 rounds of radiation therapy coming up.  Then, I will be put on 5 years of Tamoxifen, then 5 years of another drug (not decided yet on which one, and possible HT injection - cannot remember the name he used and why he said I may need it).  My oncologist told me it can cause serious side effects, such as uterine cancer and ovarian cysts.  I was told in the case of cysts, the ovaries would be removed.  My mother is a 30 year ovarian cancer survivor, so it worries me to be placed on a medication that can cause the same thing that almost killed my mother.  I have recently had a pre-cancerous screening through a pap test and have been referred to see the gyn on 12/22 to review the options.  I was told, still, the benefits far outweigh the side effects.  I'm not so sure about that.  It sounds like lots of people have had serious issues after being placed on the drug.

I was 40 when I started taking Tamoxifen and have been on it for over 4 years now.  So far, other than stiff/sore joints for a few months at the start, I have not had any side effects.  I am premenopausal still and as long as I remain so will likely be on Tamoxifen for 10 years in total.  I too was ER+, PR+, HER2- and stage 2A, but I didn't do the oncotyping and opted for chemo.  Many many people have little to no side effects from Tamoxifen.  I completely understand your relutctance to start it, but please make sure you fully understand the pros/cons.  For someone like you that did not do chemo, it may be even more important to take the Tamoxifen. 

Clementine