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All TopicsForum: Young with Breast Cancer → Topic: Tamoxifen and menstrual cycle

Topic: Tamoxifen and menstrual cycle

Forum: Young with Breast Cancer — Connect with those under 40 who have been diagnosed.

Posted on: Sep 27, 2007 08:06PM, edited Sep 27, 2007 08:06PM by JillCR

JillCR wrote:

I have been on tamoxifen since '05 and so far my periods have been okay, I went from 28 days to 29, then even 31 days. It would only last about 3 days. Definitely is not what it used to be. I am about a week late, so of course I got a pregnancy test, 2 in fact and both were negative.  My breast are sore and I'm crampy, but nothing, what is happening?

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Posts 31 - 51 (51 total)

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Sep 24, 2009 05:13AM woopwoop wrote:

hi everyone, well its a relief to hear im not the only one worried! ive been on tamox since jan 09, following chemo and radio, i was having periods all thru, every 3 weeks during the chemo...( i was 33 when diagnosed) when i started the tamox i stopped completely which was fine by me! then out of the blue 8 months later i had one which was very heavy and painful ive never had any pain before. so heavy that i changed before leaving work and drove home, by the time i got home less than 15 mins... i had made a mess all over the car seat! not nice! the strangest part was it arrived in the afternoon then nothing while asleep or the following morning untill about 3 in the arvo, this happened for 3 days. since this i had another 19 days later which was heavy but less so than the first. im seeing my oncologist on fri so will be asking him! 

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Oct 14, 2009 01:16PM laharris wrote:

Hello

I have been on tamoxifen since Sept. 06. I had a brief period in June 07, but now after 2 years, I started having a heavy one - it's been 5 days with little let up.  Doctor's did not seem overly concerned but I am since it has been so heavy for 5 days. I finally got an appointment with an OBGYN who grudgingly agreed to "work me in."

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Oct 29, 2009 07:46PM Rockycat wrote:

For all those ladies who have been on tamoxifen for close to 5 years and are still getting their period, is your oncologist recommending removal of ovaries and arimidex?  Are there any other options after the 5 year run of tamoxifen (doctor tells me I can't stay on it for more than 5 years).

Dx 1/4/2005, DCIS, 2cm, Stage II, Grade 1, 0/9 nodes, ER+, HER2-
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Oct 30, 2009 07:26PM KattyC wrote:

Hey Rockycat, my onc didn't recommend ovary removal after 5 yrs on tamoxifen.  But I am strongly considering it now.  I'm not trying to scare you or anyone reading this, just relaying my experience.

I found out last Friday that I have metastases to the liver, same diagnosis, ER/PR+ as the first time.  Since it's one spot and resectable, I'm talking to the Onc and my Gyno about removing my ovaries during the same surgery they resect my liver.  I feel like I'm an estrogen producing machine, we even did 7 rounds of zoladex implants (12 week release) during the time I was on tamoxifen to lower the estrogen in my body. I don't want to wait to see if chemo puts me in menopause so that I can begin Femara or other hormone treatment.  I want to cut off some of the fuel to any remaining cancer cells.  So, I'll be meeting with my Onc. on Monday and talking strategy.  I'll post when I hear some feedback from her.

Dx 10/23/2009, IDC, 3cm, Stage IV, Grade 2, 0/1 nodes, ER+/PR+, HER2-
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Nov 2, 2009 08:04PM KattyC wrote:

Hey all, I met with my Onc. this afternoon and her and cancer team unanimously recommend removal of my ovaries.  They cited that 1) I had early menstruation, 2) no kids, 3) early dx, 4)recurring fibroids (which use estrogen as a fuel), 5) chemo, tamoxifen and zoladex did not put me in menopause, 6) I'm still having periods and FSH levels are not in menopause range.  The idea is to cut off what I consider the major fuel to my tumor.  Unfortunately the only way we're going to know the effectiveness of this is to either leave my tumor intact and monitor any shrinkage by MRI/CT or just monitor regularly for recurrence after surgery.  I'm opting for the latter. 

So, I'm scheduled for liver resection and ovary removal on the 16th.  We'll be sending live tissue off to oncotech for chemo resistance study.  Has anyone had experience with this assay test and if so, was the chemo recommendation accurate?

Dx 10/23/2009, IDC, 3cm, Stage IV, Grade 2, 0/1 nodes, ER+/PR+, HER2-
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Nov 2, 2009 08:11PM cakeisgreat wrote:

Lots of hugs and prayers to you KattyC for your surgeries.  I am contiplating ovary removal but my docs say no because I had an early stage BC (what's that got to do with it?).  I've only been on Tamox for 1 month, and period as regular as before, so I dont know what to do. 

~Cake (is always great!)

Dx 6/9/2009, IDC, <1cm, Stage Ia, Grade 2, 0/6 nodes, ER+/PR-
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Nov 2, 2009 08:21PM KattyC wrote:

Hmmm, I love cake..  Cake is great! 

My period was mostly regular throughout tamoxifen and zoladex (which suppresses ovary function), and afterwards as strong as ever.  We did the BRCA and check2 tests, which both came back negative.  So the decision was to not remove ovaries at the time, only to monitor. 

 It's so hard to say if and when the time is right to remove ovaries if you don't have the BRCA or check 2 genes, or little else points you to it.  In my case a further clue was uterine fibroids.  I'm not going to beat myself up over a non-decision as it was the right one at the time.  BUT, I am looking forward to having them removed now.   Take care, follow your instincts... and thanks for the hugs and prayers.

Dx 10/23/2009, IDC, 3cm, Stage IV, Grade 2, 0/1 nodes, ER+/PR+, HER2-
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Nov 4, 2009 09:34PM Rockycat wrote:

Katty - I am sure all will go well with your surgeries.  In your case it will be a relief to have the ovaries removed.  My prayers are with you.

 I met with my ocologist last Friday and we have decided that I will stay on Tamoxifen and be monitored yearly.  In my case, having the ovaries removed would only reduce my chance of recurrance by 3%.  Has anyone been on Tamoxifen for more than 5 years?  Any increased side effects?

Dx 1/4/2005, DCIS, 2cm, Stage II, Grade 1, 0/9 nodes, ER+, HER2-
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Feb 10, 2010 03:38PM degored wrote:

I am too very glad that it is not just me!  I have been on tamoxifen since Feb 07 and up till june 09 I had a period about every other month.  It was different, but somewhat of a stable cycle, then it stopped.  I saw my onocologist in January 2010.  I told him that I had not had a period since June 09 and he did not seem worried,but gave me instructions to get a dexa scan and blood work (fsh, estrogen levels) when I see my surgeon in March for the annual mammogram.  That was fine, but then last week, a period came out of nowhere.  So I freaked out and called the oncologist and informed him of this developement.  He suggested that I not wait til I see the surgeon for follow-up, but to go and see my GYN.  I made the appointment today and I asked the doctor that I work for about all of the tests that I should have done when I go and see the GYN.  He said for me to get an ultrasound, pelvic exam, and blood work-FSH, estrogen, progesterone, tsh.  I am getting every test that I can at this visit, or at least every one that my insurance will cover.  In my heart I do not think that it is anything, but I want to be sure.  I had good blood work in January and a good pap test in June last year. 

After reading some of the responses, I am thinking that I am more normal than I had thought.  I am so glad that all of you are out there.  I am not alone in this. Thanks to all who have shared and I will let you know what happens at my appointment.  It is on 2/24/10.

Dx 12/7/2006, IDC, 2cm, Stage I, Grade 2, 0/11 nodes, ER+/PR-, HER2-
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Sep 23, 2010 09:57AM CSwarbrick05 wrote:

Afternoon.

 I am 23 and had been on Tamoxfien for a year up until I stopped taking them 13/9.  Thank fully I do not have breast cancer but I am yet to find anyone who is on the drug that doesn't have breast cancer so apologies if you think I have a cheek to post on here.

 I have a rare condition (1 in 200,000 I think) called Fibro mitosis (I think) it's a 7am tumour in my thigh (previously 16cm before surgery, then grew back) I have been told it is not cancerous and never will be.

 During the time of taking tamoxifen my periods stopped altogether, the only times I would see signs of them is if I missed taking the tamoxifen for a full 24hours, the next day I would show signs of spotting which would remind me to take the tablet and then it went away again.

 I took my last tablet Monday 13/9 at night before bed (I was on 4x20mg a day) and as of today (23/9) I have still not come on. I expect to have been on the day after coming off the pills but nothing as yet.

I am worried that I am pregnant and due to take a test but in the meantime I thought I was post my experiences and wonder if anyone has experienced the same.

Whilst on tamoxifen, I experienced the following:

Hot and Cold Sweats

Mood Swings

Bruising (like you wouldn't believe)

No periods

Alcohol effecting me more than usual (drunk off 2 glasses of wine)

Hangovers being more intolerable (can't get out of bed)

Being an emotional wreck and

NO sex drive

And as you can image the sex drive and alcohol at my age was a massive problem.

 Well I would love to hear from you guys as having a rare condition feels kinda lonely.

Hope your all ok.

Charlotte from Blackburn, Lancashire.

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Nov 4, 2010 12:15PM amyalex wrote:

I am 50.  I have been taking tamoxifen since April of 2010.  Like a light switch, my periods stopped.  I was perimenopausal before, but always regular.  Out of the blue, I got a period this month (I should have known it was coming when I found myself standing in the pantry eating chocolate chips straight from the bag) and it has been more hemorrhage-like than period-like.  Is it just making up for 6 months without one?

Dx 01/05/10 Tubular carcinoma <1 cm Stage 0 Grade 1 0/3 nodes ER+/PR- bilat mast w/ immediate DIEP 03/09/10

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Nov 8, 2010 03:59PM, edited Nov 8, 2010 09:13PM by Hadley

I was just diagnosed at the end of July of this year. This is about my fifth week on Tamoxifen. When my breast surgeon told me I could no longer take birth control bc of being hormone positive, I was disappointed in a way bc I did not want to start having periods again- I had been on the pill so long I didn't have periods any longer- she told me not to worry that it would take a while for them to come back- NOT ME!!!! It came back immediately and I had a double mastectomy and immediate DIEP flap reconstruction- and my period came back the second day I was in the hospital!! I was not happy!! I had one more and have not had one since being on Tamoxifen. My onc said it can eventually stop the menstrual cycle and I told him how quickly it returned when I stopped taking the birth control- I wonder if mine is gone already? I know I am probably jinxing myself by posting this, but I wonder if anyone else's had stopped so quickly? The not knowing is working my nerves!!

Always go with your gut, you know your body better than anyone.

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Nov 14, 2010 12:14PM vitalvoice wrote:

Hi all! Tamox can screw up your period, but does not cause actual menopause like chemo can. If you are in menopause from chemo, tamox will improve those symptoms because it acts like estrogen in the body. I recommend all women get their hormone levels checked regularly including a reading on their ovarian reserve so you know what is a side effect of tamoxifen (there are so very many) or what is menopause from chemo. Chemo reduces our ovarian reserve (the number of eggs we have left) and impacts the quality of the eggs that are left. In some cases, we stop ovulating completely - total menopause - because chemo has destroyed all the eggs we had left when we started chemo. Tamox causes SEs that are similar to SEs of being in menopause, but important to know it's not menopause, just SEs of the drug. I've been on it for two years and get a period every 28 days but it may only last one day. My ovaries are super cystic and I was on lupron for 2 years so will go in on monday to see the OBGYN about the ovary issues. Since tamox acts like estrogen in the body, it may be causing the cysts.

 Hope that helps! I run a fertility org for bc patients so feel free to email me privately if you all have more questions! XO 

"You have the right to live the life you imagined, no matter what the circumstances."

Dx 2/27/2008, IDC, 1cm, Stage I, Grade 3, 0/7 nodes, ER+/PR+, HER2-
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Feb 2, 2011 01:45PM ssykes wrote:

I will be 49 on Feb 4th.  I had both breast removed.  I did not have chemo or radiation.  But I did the doctor did give me Tamoxifen.  I have had regular cycles and hot flashes, but now I have gone 2 months without a period.  I just saw my internal and oncologist one week ago...they seem to think I am ok.  I was told I was not going through menopause, but the medicine could help.  I don't have cramps, but I do work out and run 4 days a week.  So I am just blessed and want be stressed.  Hope this helps anyone who is worried.

Dx 4/3/2009, <1cm, Stage 0, Grade 1, 0/0 nodes, mets
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Feb 2, 2011 07:20PM Lolly65 wrote:

I had a right mastectomy in October 2010. I did not have chemo or radiation.  I started Tamoxifen the week before Thanksgiving.  I was three weeks late for my period.  Got scared and took preg. test. Then had two periods in the month of December (5 days long each).  My January period came right on time but only lasted 2 1/2 days.  It was so awesome. I hope that continues.  My oncologist told me today that he didn't expect my periods to stop and fully expected me to still be having them in 5 years.  I am currently 45 years old.

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Oct 23, 2011 08:50PM Zenbreasts wrote:

Hey Amyalex, I know it has been a year since you posted this story but I wonder what happened? I have just had exactly the same experience only I am 52. was perimenopausal and very regular before diagnosis, started tamox 4 months ago, periods stopped immediately then came back out of the blue just yesterday. what gives? PS I wondered why I was sporting a big zit on my chin and turning the cupboards upside down in search of chocolate chip cookies.

Dx 12/19/2010, ILC, <1cm, Grade 1, ER+/PR+
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Oct 24, 2011 06:00PM labrat wrote:

I was diagnosed in Feb. 2005 at age 39. My last period was probably early Feb. or late Jan. of that year (hard to remember back that far) but they had been pretty spotty anyway. I did 4 AC and 4 T and then radiation. Tried Arimidex in Jan. of 2006 but ended up on Tamoxifen. Just finished the Tamoxifen in Jan. 2011.  I never had my period since before diagnosis. Since my mom had hit menopause around age 45, I figured that was it for me.

Well it seems like I just started again! I have calls in to the doctors because the timing has me a bit weirded out. I was in the hospital this last August (2011) after having brain aneurysms. I have one more left that they still have to clip. I really don't know what's going on at the moment or if I should be worried. Of course, it started on a Friday and by the time I realized the possibilities, it was too late to call the doctor. 

 

2005: Lumpectomy and sent. node, 4xAC, 4xT, radiation, tamoxifen through 2011 - Done!

Dx 3/3/2005, IDC, 2cm, Stage II, Grade 3, 0/2 nodes, ER+/PR+, HER2-
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Mar 27, 2012 11:27PM browniefranks wrote:

Labrat hope all is well! 

All For the first time since I was 13, I had an unplanned/unexpected period and I had to wear a shirt around my waist, how embarrassing. No period for 8 months since chemo, ovarian function test last month was negative. I should have known that things were returning to normal when the husband started looking a lot more attractive again.. lol.  Anyway cancer sucks, cramps are annoying but I never thought that something I was glad not to have when I was pregnant or nursing, will make me feel more normal again? 

Dx 3/3/2011, IDC, 2cm, Stage IIa, Grade 2, 0/3 nodes, ER+/PR+, HER2-Surgery 03/23/2011 Lumpectomy (Right)Surgery 03/23/2011 Lymph Node Removal: Sentinel Lymph Node Dissection (Right)Chemotherapy 04/05/2011 Cytoxan, TaxotereRadiation Therapy 09/04/2011 External, 3-D conformal external beam radiationHormonal Therapy 01/12/2012 TamoxifenSurgery 01/16/2014 Mastectomy (Both)Surgery 01/16/2014 Reconstruction: DIEP flap (Both)
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May 2, 2012 05:10AM marleygirl wrote:

CarlaF- I just saw your post in April '09.  I have had a diagnosis of ADH x 2 and I'm on my third month of Tamoxifen.  I felt like I was alone on an island when my oncologist advised me to go on Tamoxifen.  I am 45 and pre-menopausal.  I struggled so much with whether Tamoxifen was right for me and my situation.  After much discussion with my oncologist, seeking a second opinion with another oncologist and talking with my ob/gyn, I decided to take it.  So far I have had SE of night sweats and hot flashes but thankfully not much else I can pin on Tamoxifen yet. My periods were typically very regular on a 28-32 day cycle.  Once on Tamoxifen, I had two regular monthly periods that were a little lighter but then I started a having a period again just 2 weeks later.  That really freaked me out! I saw my ob/gyn who assured me this was part of the Tamoxifen SE.  After reading other posts...it has reassured me it's typical to be experiencing this.  CarlaF- just wondering how you are doing now. Thanks ladies for sharing your thoughts and experiences.  I don't feel like I'm on an island by myself anymore.         

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Jun 13, 2012 12:46PM 1warriorwoman wrote:

Hi! So glad to have found this forum.  I was diagnosed with ADH last March, 2012 following a breast biopsy for an "aytipical breast cyst".  My doctor sent me to an Oncologist who prescribed Tamoxifen.  After doing my own research and weighing all the pros and cons, I startrted the Tamoxifen one week ago.  I started my period on time, yesterday, but last night my whole body and legs ached to the point that I couldn't sleep.  It seems a bit soon to be experiencing side effects, and I'm not looking for trouble, I want to think possitively.  If any of my sisters out there who have already blazed this trail can tell me what they have experienced on this treatment, I would be most grateful.

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Oct 12, 2012 04:50AM ali68 wrote:

Bump

Dx 12/7/2011, IDC, 2cm, Stage IIIa, Grade 3, 9/32 nodes, ER+/PR-, HER2-Chemotherapy 01/13/2012 fluorouracil, TaxotereSurgery 06/19/2012 Lumpectomy (Left); Lymph Node Removal: Axillary Lymph Node Dissection (Left)Hormonal Therapy 07/25/2012 TamoxifenRadiation Therapy 08/02/2012 External

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