Side effects of Tamoxifen

LaurieLee
LaurieLee Member Posts: 2
edited March 2014 in Breast Cancer #1
Has anyone had side effects from Tamoxifen? Specifically, last year I was diagnosed with breast cancer and had a partial masectomy with radiation treatments. I'm 45 years old. I started Tamoxifen in January 2003 and by May 2003 my monthly cycles had stopped. This was an expected side effect. I soon began having problems with my lower abdomen, bloating and distended. Prior to getting out of bed in the mornings, when I pressed on my lower stomach, there was a significant, hard lump - like a baseball. Some days it was larger and some days it was smaller. Some days it was more elongated. I felt that it was caused by the Tamoxifen and asked the oncologist. He said it could not be a side effect. Although I checked the PDR and many side effects were listed. I pressed my gyn for an ultrasound. Uteran fibroids were found. I went several months with them and had another ultrasound. It was now ovarian cysts. I have never been diagnosed with these prior to the cancer. It may just be a coincidence. Has anyone found a way to deal with these effectively? It seems useless to have them removed if the Tamoxifen is causing them and I'll be on Tamoxifen for another 4 years. By the way, for those of you having hot flashes and night sweats; I've found that taking Tamoxifen in the morning significantly reduces the hot flashes and night sweats. I was told not to take soy or other OTC meds for the hot flashes and night sweats as my cancer is estrogen receptive. Anyone experiencing fibroids/cysts with the Tamoxifen?

Comments

  • servivor
    servivor Member Posts: 4
    #2
    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
  • Designer
    Designer Member Posts: 22
    #3
    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

    I am new to this site and trying to figure out how to use it. I waas hopeing to get a chat room but still not figured this out. I am a cancer survivor. I was hopeing to get someone to chat with I am feeling a lot of anger and fear. Just need to talk to someone. Please?
  • Unknown
    Unknown
    #4
    Designer said:

    I am new to this site and trying to figure out how to use it. I waas hopeing to get a chat room but still not figured this out. I am a cancer survivor. I was hopeing to get someone to chat with I am feeling a lot of anger and fear. Just need to talk to someone. Please?

    This comment has been removed by the Moderator
  • popROCKS1
    popROCKS1 Member Posts: 1
    #5
    Side effects of Tamoxifen

    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. :)

  • mjjones453
    mjjones453 Member Posts: 155
    #6
    Side Effects from Tamoxifen

    Hi, I have been there also. I was premenopausal, 49 when diagnosed.  I have about 7 months of Tamoxifen left to bring me to my five years.  Just this October, I had a Bilateral Salpingo Oopherectomy. I had cysts on my overies that were growing.  My Dr. didn't think they were cancerous, but he felt very strongly that I needed to have them removed. I am not sure why we didn't do a total hysterectomy, I need to ask on that one, I have a follow up appointment coming up. I have had a thickening in my uterous, along with the bloating and pain that you are experiencing.   I have had ovarian cysts on and off from the onset of taking Tamoxifen.  I have other side effects, bone pain, thinning of my hair, weight gain (wish that would stop), hot flashes.  I have come to the conclusion that all that hurts is from the tamoxifen.  My Oncologist will review what we are going to do when I hit my five year anniversary.  It is surprising how fast that time goes.  I am glad that I had my overies removed, even though it put me into full menopause.  Hot flashes are stronger, I take Celexa for them, and also Black Cohash.  I feel like they are somewhat subsiding.  

    I hope your doctor gives you some guidance, best wishes to you.  

  • vickiek811
    vickiek811 Member Posts: 20
    #7
    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.

  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #8
    I was on tamoxifen for 5

    I was on tamoxifen for 5 yrs-I had terrible night leg cramps-so painful and pain/aches would sometimes last for a day or two. MY two oncologist insisted it was not from the tamoxifen. I have been off it about 18 mths now and i have had 2 Not near as severe cramps. (on avg 3-4 x weekly)

     

    I started taking magnisiam a few years into my five  year stent and it helped a little bit.

     

    I did have an unlarged uterus from the meds-which is a well known side effect and had a total hysterctomy- (Prior I would have an interanal (unsure of official name) ultra sound followed by and D & C-every 3-4 mths

     

    Denise

  • Clementine_P
    Clementine_P Member Posts: 518 Member
    #9
    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.

    4 years

    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

  • llgordon
    llgordon Member Posts: 4
    #10
    Tamoxifen Questions for Premenopausal Women

    Hi, I'm just checking in to see if you stuck with tamoxifen.  I am hormone receptor postive and pre-menopausal and I can't tolerate it.  I am currently not taking it for quality of life reasons (debilitating joint pain, depression, and vaginal fissures).  Let me how it worked out for you.  I am especially interested in the side effects premenopausal women face.

    Thanks!

    L

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