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Topic: Tamoxifen and heavy periods

Forum: Hormonal Therapy - Before, During, and After —

Risks and benefits, side effects, and costs of anti-estrogen medications. Note: Please remember that there are good experiences and bad with ALL treatments and this is a safe place to share YOUR experience, not to be influenced or influence others.

Posted on: Oct 4, 2012 09:56AM

Bar65 wrote:

I started tamoxifen a month ago and am having the most horrendously heavy period.  I was hoping they would get better since they have been very heavy for several years, but this one is even worse.  Do you think this is normal or has anyone else had this problem?  Other than that, so far no side effects.

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Oct 4, 2012 02:03PM sweetpea23 wrote:

Hi. I started Tamox in Aug, had a horrible period in Sept and am still waiting for Oct. I am going in for an endometrial biopsy next week because at my yearly exam in Sept, they found thickening. I never had any problems until I started taking Tamox. I am trying to just take it one day at a time w/ this whole thing. I have not had any other horrible side effects except for some hot flashes, strange dreams, insomnia, and night sweats. They are doable. I hope this helps that you are not the only one w/ this issue. Take care.

Dx 3/2012, IDC, <1cm, Stage I, Grade 2, 0/1 nodes, ER+/PR+, HER2-
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Nov 9, 2012 08:55AM amcarter wrote:

I started taking Tamoxifen in June after I finished rads (no chemo). For the last 3 months, my periods have been horrible. Only last about 5 days but one of those days I can't leave the house because of heavy bleeding. Couldn't find any info for this happening to women who had no chemo. Finally called onc & he wants me to get checked by my gyn & FAX results. Going Monday. No idea what to expect but wanted you to know you're not alone. Hope all is well with you.

Angie C. Dx 1/30/2012, IDC, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2-
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Nov 9, 2012 09:03AM momof3boys wrote:

Am carter- I can relate. I did have chemo, and chemopause for 10 months, then Tamoxifin starting beginning of June. Got a period in September October and now. Extremely heavy. So heavy I actually called my aunt (my obgyn) and asked if I could bleed to death this way... Had an endometrial biopsy a couple of weeks ago (benign) but, all my Drs conferred and agree (MO, RO, obgyn) that ineed a total hysterectomy. Just waiting on the surgery scheduler to call me. Apparently, I have ovaries of steel and now have polyps.

BMX w TE reconstruction 11/11/11, 4 TC, 3/12, 25 Rads 5/12 Tamoxifin 6/12, Prophalactic hysterectomy 12/18/12, Oncotype 16 Dx 10/14/2011, ILC, 4cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2-
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Nov 9, 2012 06:32PM cider8 wrote:

My gyn did the uterine biopsy because of the heavy (and long) periods. All normal. He did suggest taking Aleve to tone down the bleeding. I don't know how it works, but it does. My periods are still heavy, but not a tsunami and much shorter.

~Paula~ [R] Pure Mucinous, DCIS, & IDC. BMX w/DIEP in NOLA 5/11; 12/11; 9/12. DD AC/T end 9/11. Tamox. 2mm IDC found 9/12 = 33 rads end 01/13, Oncotype 34. [L] IBC = TCx6 end 7/13, MX (remove flap), 44 rads (2x/day) end 10/13. Zoladex & Arimidex. Dx 2/25/2011, IDC, 1cm, Stage IIA, Grade 2, 1/21 nodes, ER+/PR-, HER2- Dx 4/5/2013, IBC, Stage IIIB, ER+/PR+, HER2- Dx 8/22/2013, IBC, Stage IIIC, Grade 3, 10/28 nodes, ER+/PR+, HER2-
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Nov 10, 2012 04:26PM Robimom wrote:

In some women Tamoxifen can overstimulate the ovaries so that they produce more estrogen. In the 1960s Tamoxifen was actually used to stimulate the ovaries in women who had fertility problems. So it protects the breasts, but it CAN cause problems with the ovaries and the endometrium. In my case I had huge cysts on one of my ovaries after taking Tamoxifen for about 6 months and I started bleeding heavily. After having been knocked out for a while by chemo, my ovaries obviously recuperated and then got stimulated by the Tamoxifen. The only solution was to take the ovaries out, which was done about a week ago. So far so good, but mood swings I do have. Hope the side effects won't be too bad - still too early to tell.

Dx 7/4/2011, ILC, 3cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 7/15/2011 Lumpectomy: Left Chemotherapy 9/4/2011 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Radiation Therapy 1/11/2012
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Nov 12, 2012 01:08PM hawk wrote:

Not only are my periods heavy but my cycle is so short - I only have like 10-12 days in between.  My gyn seems hesitant to do a hyterectomy - I need to go back and insist I think. I am tired of this. 

Heather Dx 11/22/2011, IDC, Left, <1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 12/14/2011 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 1/17/2012 Hormonal Therapy 3/14/2012
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Nov 12, 2012 01:59PM Bar65 wrote:

So if the Tamoxifen can overstimulate the ovaries and make more estrogen, does that mean I, in general, have more estrogen going through my body?  I was 95% ER and PR positive.  This concerns me.  My second period on Tamoxifen was a nightmare too.  I'm going to my OBGYN this week and will talk to her about this.

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Nov 15, 2012 12:55PM vacationbound wrote:

It sounds as if all you ladies need to visit your Gyno/Onc's asap! If you read the contra's on the Tamo insert, it say's that periods stop, not increase, in fact, increased bleeding is a sign of CYP2D6 polymorphism and although they (big pharma) say's this test not conclusive, it is ebough proof that the actual test exists that they had it for a reason in the first place-Tamoxifen is the only drug out there for pre-menopausal women other than suppressing ovaries and using an AI (which did not work for me either) the Tamo made me bleed for 4 straight months (everyday) while heavy spotting occurred and pre-empted periods gave way for the first 2 months so immediately from the onset I had bleeding issues with Tamo-the end result was a hysterectomy with both ovaries removed as there was no other choice-I am 47 and no longer need them so I was ok with it-Uterine thickness over 5mm is not normal, mine was 10mm with a cyst and a polyp that had developed, I had a normal pap smear and cervical exam before starting Tamo (at my request) so I know these changes occurred while on Tamo-some women might say to do a D&C to shed the lining every so often but do you really want to take a drug that is going to play devils advocate in your uterine? So you decrease chances of BC but you develop Uterine cancer???? Not for me! That's why it was a no brainer to do the Oopherectomy! I am fine, only hot flashes at night while I sleep so I sleep with a fan-no biggie!

8/8/2011 IDC, 5 cm, Stage 3C, ER+PR+Her- grade 2, 11/19 Pos nodes; 1 Adriamycin-allergic,no more chemo; 32 Rad's; Tamo&Lupron failed, Hyster May 2012, Arimidex june-aug,Sept 2012, small mets L1/L4,May 2013 5mm tumor on left lobe of liver Dx 8/8/2011, IDC, 5cm, Stage IIIC, Grade 2, 11/19 nodes, mets, ER+/PR+, HER2-
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Nov 15, 2012 01:06PM sundermom wrote:

I'm 39 and I was in chemo pause for 22 wonderful months, then this past August my cycles resumed. I have been on Tamoxifen since July 2011. My cycles have been horrible since they resumed. In fact, I'm having an endometrial ablation next Tuesday to stop the heavy periods for good. I've had an ultrasound - no thickening, no cysts or polyps. My OBGYN will do an endometrial biopsy during the procedure but doesn't expect to find anything abnormal. He said fluctuating hormones is often the cause of heavy menstrual bleeding and it's no surprise that mine are fluctuating all over the place!!!

Dx 11/8/2010, IDC, 2cm, Stage IIB, 2/32 nodes, ER+/PR+, HER2-
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Nov 15, 2012 02:16PM momof3boys wrote:

Surgery date: Jan 23. DaVinci method (hopefully, if all goes well) Total hysterectomy. :-(
Not sure how I feel about this, but, they're all insistent that it be done.

BMX w TE reconstruction 11/11/11, 4 TC, 3/12, 25 Rads 5/12 Tamoxifin 6/12, Prophalactic hysterectomy 12/18/12, Oncotype 16 Dx 10/14/2011, ILC, 4cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2-
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Nov 15, 2012 03:35PM - edited Nov 15, 2012 03:36PM by LtotheK

Just started my period after 2 years and 2 months chemopaused.  Mixed feelings.

What I can say is, the longer I get out from my treatment, the more I realize it is essential you have a doctor you can trust and partner with.  You can debate and argue about everything, there is so much more work to be done in this arena.  I'm an info hound, but over time, it has been important for me to rely on my oncologist to help me make the best choices.

The CYP2D6 tests are not used at my hospital, some studies have discredited this test. Uterine cancer is very rare.  This does not mean you shouldn't be careful, it means that you are a special organism whose multiple factors must be taken into account before you make decisions.  I'll let you know what my doctor says.  My period was extremely heavy for two days, was over in 4.  Doctor says it's normal, and she won't push forward with a biopsy until we know more about whether this is regular, and what my hormones say about menopausal status.

There are studies that indicate higher circulating estrogen is a higher risk of recurrence. Deciding to have an oophrectomy or hysterectomy is a great choice for some.  For me, I already have osteoporosis of the spine thanks to granny and chemo.  No oophrectomy for me unless the doc can show substantial odds improvement (I'm already in the single digits with chemo and tamox).

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Dec 11, 2012 04:27PM Raili wrote:

Bar65, I can relate.  My periods have always been heavy and long.  While starting Tamoxifen scared the heck out of me, I was at least looking forward to lighter periods... NOPE!  I still bled just as heavily, maybe more.  Before Tamoxifen, my period would last about 7 to 9 days, and follow a pattern of: day 1- light, days 2-4 - very heavy, days 5-9 - tapering off/light.  Tamoxifen shortened my periods to 5 or 6 days, but the first 2 or 3 days were HORRENDOUS - very heavy bleeding, had to leave yoga class after 30 minutes because I'd bled through my clothes, ETC.  And one period lasted three straight weeks.

So I went for an endometrial biopsy and D&C.  Turns out my uterus was full of big polyps, but everything was benign.  Four days after the D&C, I got my period again.  ARGH!!!  I stopped Tamoxifen for four months.  I explained what happened to my oncologist, and she said that what I describe, re: Tamoxifen "condensing" my periods "makes sense" - because that's what perimenopause is like. 

I don't know what to do.  I've been back on Tamoxifen for a couple months now, giving it another try... but if things get out of control again, I might just stop.  My gynecologist suggested endometrial ablation or the Mirena IUD, and my oncologist told me I could consider ovary removal.  None of those options appeal to me.  The ablation or ovary removal would be too invasive, IMO.  And no way am I going to get a plastic, progesterone-emitting device inserted in me when my BC was PR+...

Dx 11/2009, 1cm, Stage I, Grade 2, 0/3 nodes, ER+/PR+, HER2-
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May 30, 2015 11:29AM Nicole503 wrote:

I just want to thank all of you for these posts.  I am having my first period since chemopause in February, 2013 and the amount of bleeding is scary!  I am in touch with OB/GYN advice and have a biopsy scheduled, but your similar experiences reassure me that this can be "tamoxifen normal".

Thank you for the reassurance!

Dx 10/31/2012, IDC, 4cm, Stage IIA, Grade 1, 0/6 nodes, ER+/PR-, HER2- Surgery 11/13/2012 Lymph node removal: Left, Right, Sentinel; Mastectomy: Left, Right Chemotherapy 12/27/2012 AC Chemotherapy 2/21/2013 Taxol (paclitaxel) Hormonal Therapy 4/25/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jun 2, 2015 11:10PM sonyasq1913 wrote:

This is my first cycle since 10/2013, when I started chemo. I started Tamoxifen 5/2014 and have been on it for a year. My cycle started last Wednesday 5/27. It was extremely light but since 5/29 it had been very heavy!!!! I am passing clots and the bleeding is much worse than it ever was before. I see my oncologist in two weeks but I think I need to make an ob-gyn appt. I have never had a cycle over 5 days!!!

Dx 7/31/2013, IDC, 4cm, Stage IIB, Grade 2, 1/18 nodes, ER+/PR+, HER2+
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Aug 1, 2015 08:56PM katharu wrote:

Glad to have found this thread today. I started Tamoxifen in June 2013. I had a few periods at the beginning, but they became irregular and stopped in April 2014. I started a period a couple of days ago, but the bleeding has been very heavy at times and I'm having a lot of cramps/pain. I'm trying to keep it together and stay calm until I can call my GYN on Monday (I've messaged her through the private patient portal thing.). I messaged my oncologist Friday (he is aweseome - responded to me in less than an hour). He said if it didn't "behave like a regular period" to call my GYN.

I am relieved to read some of these posts and to tell myself it's not out of the realm of normal. But I never had a lot of bad periods, so this is awful and really bothering me. Don't want to have to face this all the time for the next 3 years.

Dx 1/2013, IDC, 2cm, 0 nodes, ER+/PR+, Medullary Thyroid Cancer (Sporadic) Dx 8/1999
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Aug 1, 2015 09:40PM Moderators wrote:

Welcome katharu, and glad you found us, and hope that you get some resolve at the GYN next week. Please, keep us posted!

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Aug 4, 2015 10:02PM - edited Aug 15, 2015 10:00PM by katharu

Hey, reporting in. Saw the gynecologist today. Did bloodwork to check for menopause levels (have never been tested for that before) and have an ultrasound scheduled for next week to check uterine thickness, I believe. She thinks I'm fine and in fact, the bleeding has stopped today. Hope it doesn't come back anytime soon.

Update - I'm not in menopause based on the FSH levels. Ultrasound of uterus is normal. Just get to wait and see what happens in a few weeks.

Dx 1/2013, IDC, 2cm, 0 nodes, ER+/PR+, Medullary Thyroid Cancer (Sporadic) Dx 8/1999
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Sep 1, 2015 11:11AM NJC63 wrote:

I am glad to be reading about all of these issues with Tamoxifen and heavy or just plain weird menstrual cycles. I had already had an endometrial ablation due to extremely heavy bleeding and while I was still having periods they were not that heavy and only lasted 2 days. I started taking Tamoxifen in January of 2015 and for the first 5-6 months my periods were practically non-existent - I was thrilled. Then all of a sudden two months ago, my periods are back, I'm experiencing heavy clotting (not big clots but just massive amounts of small ones), and along with the clotting the heavy cramps of my periods of old, and lasting 5 days. It is frustrating as my oncologist says I should not be having my periods at all. I am 52 and prior to being diagnosed with bc my periods were as regular as clockwork with no signs of menopause. When I started taking Tamox I had asked my gyno about having a hysterectomy as I don't want uterine cancer to be something I have to worry about. She said it was not necessary - but seriously at my age do I even need that thing. Has anyone talked to their gyno and onc about these issues - have you been given any advice other than just deal with it?

Dx 10/14/2014, IDC, <1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 10/28/2014 Lumpectomy: Left; Lymph node removal: Left, Sentinel Surgery 11/18/2014 Lumpectomy: Left Surgery 12/3/2014 Lumpectomy: Left Hormonal Therapy 1/12/2015 Radiation Therapy 2/10/2015 Breast

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