Bleeding after long term Tamoxifen use

Robin04

I'm wondering if any of you have experienced vaginal bleeding/spotting that started suddenly after being on Tamoxifen for several years.

I'm 52, and had been on Tamox. a little over 4 years  with no problems when the spotting suddenly started and has continued more than a month.  An endometrial biopsy was negative, thank God.  A  pelvic ultrasound showed the endometrial lining to be over 10 mm, which is quite thick and due to the Tamox.  Ovaries okay.  My oncologist stopped the Tamox. a couple of weeks ago and I will see him in a few weeks.  I understand this spotting could take a while to subside, and am hoping not to need a hysterectomy.

Has anyone had a similar experience?  I wondered if over time the bleeding may stop on its own as my body adjusts to the absence of Tamoxifen.   I know I can go over all of this with my drs., but sometimes it's better to hear from those of you who have been through this.

THANKS!

 

Anonymous

my gyn said spotting was OK, the thing to watch out for was heavy abnormal bleeding while on tamoxifen. So since you haven't had any heavy bleeding and your endometrial biopsy was  good, it sounds like you're in the clear. Hopefully a hysterectomy won't be needed.

Anne

schveetie

I have been on Tamoxifen for 3 years and just started having bleeding also. Endo biopsy and pap were fine, thankfully! But I have been bleeding for almost 2 and a half months everyday single day. Not heavy, but just constant spotting and stuff. It is driving me nuts. As you can imagine this has put quite a damper on my relations with my husband. I just switched to taking 10mg of tamoxifen twice a day instead of 1 20mg pill. That seemed to be when my problem started. I can not wait for the day that I no longer have to take this drug. It may help, but the side effects are just so bad. I do not want to have a hysterectomy either cause I was perfectly normal with no problems whatsoever until I started on the tamoxifen. I even said to my oncologist before I started taking it 3 years ago, 'So you cured my breast cancer, and now you are going to kill me with uterine cancer!" He wasn't amused...well neither am I. If things don't improve with the change to the 10mg, I will probably just stop taking it all together. I am sick of the weight gain, increasing vision problems, depression, bleeding, headaches, tiredness and body aches. I just want to feel like myself again and not keep poisoning my body everyday with this medicine. Really makes me mad.

LeggyJ

I've only been taking TX for less than a year, and just starting spotting, after going without a period, for over a yr.  Last week, I had the awful, painful Edometrial biopsy, and ultrasound. Everything, was neg. for cancer, but OMG do I have years ahead of me, with spotting all the time?

schveetie

Dear Leggy~

I hope you don't! I went for 2.5 years with no period, spotting or bleeding at all to now, every single day all the time. Yesterday and today was heavier than just light spotting, but not like a period. Hard to explain. I haven't had the ultrasound, just the lovely biopsy. Just love the tests they give us with no pain meds! I will give my new dosage of one 10mg at noon and one 10mg before I go to bed a few weeks to kick in. That means 3 more weeks of bleeding everyday, but maybe it will stop. If not, I am calling my oncologist again and raising hell. Then going to my OB and see what he can do. You would think there would be some type of medicine that would counteract that symptom. They probably do, but we can't take it because of the breast cancer. And the hormone replacement they give you ups your chances to get breast cancer. What a vicious circle us women have.

When I started spotting I thought it was just my period coming back a little. It lasted for a few days then went away. Then a few weeks later it did it again. This went on for about 3 months, then it just started being constant now for over 3 months. It's bad enough to have a period for 5-7 days, but over 90 days is just mind numbing. And I see no end in sight at this point. I will keep you informed on how I do over the next few weeks. Hope you do well and yours will go away.

LeggyJ

Hi Schveetie,

Do we have to take a pain pill, every time we go to the doctor, just in case they sneak a super painful test on us...gee that hurt.  Thank goodness, she at least warned me about possible abdominal problems, following the biopsy, or I would have freaked out.  Not fun, when you have problems at work, and the nearest toilet is to far away... I sure hope you keep us posted on the constant spotting, and I  wish you all the best as well. 

schveetie

Seems like everything they do to us is painful! I understand about the bathroom issue at work. Mine is out in the hall which is quite far from where I sit. I am at the very back of the office and the restroom is all the way up front and down the hall. So it's not a quick trip! I will keep you informed about my progress and bleeding. I'm giving it a few more weeks, then calling my OB if there is no change. I am going back home to NJ for Thanksgiving and a family reunion and really don't want to deal with this mess through that or the holidays! So sick of it!!!

Keep me informed on how you are doing as well. Nice to know we are not alone in our misery! Have a great day and keep in touch!

Robin04

I thought I'd post an update since I'd started this thread in June.  After more than 4 years on Tamoxifen with no problems, I'd started spotting in May. I stopped the Tamox. in June on my oncologist's recommendation.  The spotting continued pretty regularly till about mid-August.  No more bleeding since then (knock on wood!) and I do not need to go back on the Tamox.

 Just saw my gynecologist this week and she said I should let her know if spotting starts up again. I think Tamoxifen can take quite a while to clear out of our systems, and that is why the spotting kept up for a few months. At this point, no further treatment is needed for me.

 I wish you all well.

mn4130

I am so glad I found this post to see that I'm not alone too!!!  I was on tamoxifen for 5 years; stopped I want to say late 09/2010 and of course promptly got a period (I call it crime-scene photo period) shortly after that lasted about 1 1/2 months.  It stopped for I want to say maybe two weeks, with just a bit of spotting.  Now its back with a vengence!!!!  Seriously can a body have that much blood?  I too had a good pap and negative biopsy last year.  I do have an appt coming up with my doc; cause this is ridiculous?  Why should we have to deal with this?  So glad to know its not only me though.... I wish everyone well too!!! 

Christianne

I have been on Tamoxifen now for 2 1/2 years. I am 55. The last time I had a period was in October 2008. But the last 6 months or so I have been spotting. Then it was getting more frequent. Worried about the uterine cancer risk, I called my OB/GYN and she did an endometrial biopsy in November. All was benign. But ever since November, the spotting has become more like a period every day. I called the doctor again two days ago and she only suggested a D & C "which might cause the bleeding site to scab over and stop". I really am not wanting to go through a D & C and the doctor doesn't seem at all concerned, since the biopsy was normal. Anyone else have a similar story?

mn4130

Hi there.  Just checking back in.  I've heard the D&C thingy too.  Anyhow, I'm still bleeding.  Recently my doc gave me a Depot Lupron shot; which I guess slowed things down a bit, but its still here. 

Stopped tamoxifen approx 09/2010. Started bleeding 10/2010 till 11/2010, then started again in 12/2010 till present.  I have bleeding every time I go to the bathroom; but then every few days I have a few hours where I have heavy bleeding till I pass a few clots (I know that's gross, but its what's happening) and then it slows down again. 

Since the shot, the heaviness has slowed down, but the few hours of bleeding is still happening a couple of times a week; as opposed to every other day. 

MAKE IT STOP!!!!  I keep telling my doc that... he thinks I'm funny.  I'm seriously though of course.  I have an ultrasound appt next week, then of course the pap and possible endo bx that I had last year before stopping tamoxifen and it was fine. 

I've been taking iron because my hemoglobin was low (at last check it was 9.5).  Hopefully that helps becuase of course you get exhausted when you've bled out your entire freaking body a few times over.  How much can there be there to bleed out?  hahaha. 

I've heard D&C, transfusion issues, etc.  I don't mean to ramble, but I'm so tired of this.  So since stopping, I'm working on 3 months with a period/bleeding; probably a bit longer.  Again no more tamoxifen since 09/2010. 

Hope all is well with you all. 

mn4130 (Abby)

Dianeinil

I just had a total hysterectomy due to endometrial cancer from 5 years of tamoxifin ! I had NO bleeding no symtoms ! Dr was proactive due to tamoxifin and did a biopsy. It was cancer ! I have a friend who's biopsy came back negative also but with further screening they found cancer ! DO NOT let this go ! I'm not being negative but mine was very early stage 1 grade 1. I'm very lucky I want others to know you need to catch it early ! I had laproscopic and it was three weeks now and I'm doing great ! Would never hesitate to do it ! Think of the added benifits of no worries in that are of cancer getting there next !

fightlikeagirl45

I've been bleeding (mostly heavily) since December 27.  I opted out of Tamoxifen for the first year after my mastectomy because I had a feeling that the side effects weighed against the positives.  Then after a semi-scary (it was nothing) MRI, my oncologist talked me into TX.  After 6 months, I started bleeding.  Long story short, my GYN has recommended an endrometrial ablation, which has not been scheduled yet, but apparently I need a shot that contains an estrogen inhibitor 3 weeks to a month before I can have the procedure.

Here's my question:  Why do I have to have a surgical procedure to correct a problem that was caused by medication that might prevent a recurrance of a problem???  Should I just flush the freakin' Tamoxifen???

Sorry for venting - I'm just soooo tired and sooo tired of the cramps and the back aches and everything else - advice, please??

MindySue

I just finished my 5 years on Tamoxifen in December and now 2 1/2 months later I have a very heavy period.  Went to my Gyn and had a biopsy done and that came back okay.  I am just wondering because my breast cancer had estrogen receptors is this something I should be worried about?

Simcha

I was just about to finish 5 years of Tamoxifen when I started bleeding. The oncologist said to stop the Tamoxifen immediatley. I will be having an ultra sound in a few weeks, as they cannot exam me now anyhow. I had NO bleeding or staining as some of you have written for 3 years! The first 2 years the bleeding was on and off and usually very heavy! I came on tonight looking for answers, those of you who have written in earlier have helped, at least I am normal. BTW, I am 57! I thought I was finished with this!!! Guess not! I If Tamoxifen has such side affects, why do we take it? To stay BREAST Cancer free for 5 years! What about the rest of our bodies?!?!?

Lolita

After four years of tamoxifen, I had a uterine biopsy last week because my period lasted 12 days.  I'm waiting to hear back.  Fightlikeagirl, I'm not sure whether to throw out my tamoxifen either.  I'm thinking about lupron and an A.I. since I'm still premenopausal.

Blinx

I quit Tamox last August after 3.5 years, due to side effects. Little did I know! Just like mn4130 above, my period came back with a vengeance! Horrible. Don't know how women can put up with this type of heavy bleeding for decades. My ob/gyn found and removed a large polyp. Had U/S, biopsies, D&C, all tissues tested negative.

After my 4th and almost unmanageable period (really could not leave the house), my ob/gyn suggested 2 options - an ablation, or a new medicine called Lysteda. I'm trying the meds first. It's non-hormonal, so I can take it, even if I'm ER+. You only take it during your period, not all the time. It seems to be helping, but I'll know for sure next month. Google it, and reviews about it. It does have some side effects, and is expensive if not covered by insurance, but at least it's a non-surgical option.

vacationbound

Started Tamoxifen in August after my mastectomy, good until last 2 months, spotting is a light bleed and constant. Going to Gyno/Onco next week to find out what this is........

vacationbound

Update on my Tamoxifen and bleeding issue: I stated above that I was having issues back in late Nov; Dec 1 bleeding was a contstant until it worked itself into a full blown period Jan 18th-I went to Gyno/Onco and she found a cervical polyp (she described as "(IN YOUR FACE)" (My pap smear came back normal in August so it was not there then) she also found there was a cyst on my ovary and my euterine lining as 10MM thick-not suppose to be bigger than 5MM. They have taken me off Tamoxifen and depending on the biopsy results (Wed) We will either decide chemo and/or Ooperectomy. So to summarize-I started Tamoxifen Aug 22, 2011, my pap smear and pelvic exam was normal on 8/8/2011. My bleeding started mid/late Nov then everyday from Dec 1st on until Jan 18th a full on period. Still spotting everyday but within 3 months (Aug-Nov) the Tamoxifen did damage to my womb that ordanarily doesn't occur in women until 2 1/2 yrs-3 yrs into treatment??? Terrible terrible stuff.

jmcdouga

I am into my fifth year of taking Tamoxifen. I had no periods for sometime and now seem to have started menstruating again on a reasonably regular basis. Anyone else had this experience?

peggy_j

jmcdouga, both my MO and GYNO said to watch for irregular bleeding or discharge. So I think it's worth a call to get it checked out. May be nothing but better safe than sorry...

jmcdouga

okay that's good advice....will do. cheers Julie

vacationbound

Had a total Hysterectomy in May due to the Tamoxifen earing up my uterus, Oopherectomy was not going to be good enough, the Gyno/Onc said I was a poor metabolizer of Tamoxifen (CYP2D6 Polymorphism) and she said we got everything out in time as it looked a sad mess. (Metaplasia/Dysplasia) so I was on my way towards Uterine Cancer pretty quickly, all while on Tamoxifen!

Shannie

Hello! I started TX in January of 2013.  Started bleeding this past weekend.  Talked to my OB GYN and they want me in for an Ultrasound.  If it comes back that my lining has thickened, they want to do a biopsy.  I really liked not having a period!  Now let's just hope it's nothing. I recall my ONC telling me that if I ever get a period again, he wanted to put me on something to completely shut down my ovaries.  But I don't recall the name of the drug.

LindyG

Hi Shannie and all others going through this,



Your Dr will want to put you onto Femara, it's a total estrogen blocker, much stronger than tamoxifen. Mostly I have heard the most irritating side effects are aching joints etc.

I have spotting or what I describe as end of period bleeding after 3.5 years on tamoxifen and I'm off for ultrasound etc Monday. What concerns me is obviously uterine cancer but also does this mean we are ovulating? Our breast cancer are estrogen positive so we need to stop our periods. Do we just have a hysterectomy and be done with it? What happens then too our moods etc as we can't take HRT? Next time I'm coming back a man!!

Valentinebambino

I am having the very similiar issues. I am 45 . Had breast cancer, chemo, radiation. Had been on tamoxifen for roughly 2 years then switched to post menapausal med, which I can't spell or pronounce. Then got my period after 2 years or so off no period and lead to believe and tested that I was postmenapausal. It was 3-4 days heavy with horrid cramps, then 3- 4 days of start and stop period. I went to my doc. Who ordered a ultrasound after doing a pap . I did that and saw a Obgyn same day who then did a endometrial biopsy , which hurt like a u know what. It was done a few years ago , in a same day surgery procedure with anthestia. Which came back fine except my endometrian wall was thicker than usual, which is site effect of tamoxifen.This time it was done in office, which hurt horribly. I now wait for 2 weeks for results. The latest Obgyn said a normal edometrian wall is 4 mm mine is 6 mm. Is tamoxifen side effects worth it? I may not get breast cancer again but I may get cervical cancer. We wait for results , if they are abnormal or cancer treatments could b a D and C , hysterectomy, and or radiation. I am upset, confused, scared and ticked ! My oncologist had said at my last appt , we were just cruising at this point , doesn't seem like it to me.Plus my cancer was estrogen positive. Worried ! Half of my body has a hot flash and half is acting like A teenage girl!

Valentinebambino

First question , what has been timeframe between stopping tomixfin and starting periods again/ and or spotting ? And has anyone else had bone pain,mostly hips and back? Also having pain in my feet after sleeping all nite in bed? Any corrolation with bc meds? Like gabepetin, tomoxifin, anastroloze {spelling is wrong } i also take leverthroxine { thyroid removal last yr} and lisinprol for high blood pressure}. I also do not have reg bowel movements , never had but has worsened . I cant take pain meds , even advil or it really gets bad.

Cat07

After reading your post, I'm wondering how you are doing? Our situations sound similar. After being on Tamoxifin for 25 months, with no period, my oncologist switched me to a post menopausal medication because my blood work came back showing me to be menopausal and after being on that medication for 6 weeks, I got my period 5 days ago! Ugh! I am scheduled for a vaginal ultrasound in a week with my gynecologist and I have a call into my oncologist office to find out what I should be doing for meds. Good grief! This is nerve wracking!

Valentinebambino

I am scheduled for a full hysterectomy after ultrasound and an edomentrial biopsy . Results were simple hyperplasia. I am 45 and no more kids in my future. Think a total hysterectomy is best. Get it out all in one shot. My edomentrial lining was 6mm aND had no periods till a month ago and bleed for 10 days or so. I am nervous but excited to hopefully.feel better , no cramping and eliminates cancer possibilities. I don't know if this is from tomoxifin or astroloze (sp sucks). I had to quit my job though because otherwise with recovery time I would have pointed out on there attendance policy. Sucks too. So far my insurnce thru work is covering this aND my.husbands insurance. I don't get all that so crossing my fingers on that part.

Valentinebambino

I had pre op stuff today and I feel better. Obgyn said they would do what they could to make me comfortable and not be in pain. Going.to do as much as possible vaginally. I ll get meds for nausea from knock out meds and they are gonna numb me from waist down. And pain meds will try and give me some that don't make me sick. She is going to keep me.over nite to keep eye on.me. I am super pleased she is thoughtful of my needs and my husbands worrying. She told.me to wear loose clothes and I didn't need to do anything before surgery except no liquids after midnite. No cleaning out my. Bowels or nothing like that. So now I just wait for next week surgery.

misspinky

I'm 77 and been on TX for 3 years, just started spotting blood, bright red and no symptoms. Is there anyone out there through menopause as long as me and on tamoxifen for a long time and started bleeding. Really upsetting me, I feel it's normal but can't contact dr. until Monday and it's Friday now.