Bleeding while on tamoxifen, can anyone help?

[Lyndy Lou]

Hi Donna, I've been on Tamoxifen for 4 years now and always had a watery discharge. Over the years  it's got worse and two weeks ago the discharge had a brown tint to it. I also started to experience slight abdominal pain. I had an ultra sound within a week. My GP rang this morning to say that I have a fibroid and thickening of the uterus lining, with a few holes in it. Now waiting for a biopsy to make sure it's nothing nasty. It's so frightening, so I know how you feel. Hope everything was OK for you. Lynda x

[Jillsy1965]

What did u find out

[Flossie13]

Hi, any abnormal bleeding while taking tamoxifen and you should be referred urgently to gynaecology. Your gp should be aware of this but perhaps needs enlightening. Tamoxifen can cause changes to the lining of the uterus as you have probably read.

Most probably all ok but needs checking properly. . Happened to me twice and I had to change to letrozole.

As I said, probably all ok but you should have a gynaecology review. Follow up with your gp. Good luck x

[Hiccup]

Hi all, I've been on tamoxifen for nearly three years with intermittent periods. About 18 months ago got a very light pink spotting and thought it was a light period. Past few months I've had a discharge, watery brown. Three weeks ago I had a huge period that was a flood and full of clots. I'm still bleeding but it's mainly a pink and brown discharge I've come off tamoxifen for a week but bleeding continues. I've appointment for an ultra sound next week. I'm panicking as I think I've misread a lot of signs that could indicate cancer. Has anyone else had anything like this.

[Charys]

Accidental post on this thread. Removed.

[CyclingMad]

Thanks for your concern and advice 🙂

I've spoken to one of the breast care nurses and she has reassured me that, becuase my hot flushes have reappeared as well, it's likely to be a hormonal blip and is not unexpected.  They're keeping tabs on me over the next week and will advise if I need any onward referral (which hopefully will avoid the GP!).  I certainly feel better for talking things over with her, and would advise anyone else in the same position to do the same.

[Jill1998]

Hi Cyclingmad, I'm afraid if you need further investigations GP needs to make a referral to gynaecology -at least that's what they told me .Very hard when you do not feel you can trust / talk to your GP anymore ,could you go to another doctor within the practice ?

[CyclingMad]

So glad to find this thread! I'm 52, had mastectomy and rads in 2016. Started taking tamoxifen in summer 2016, had one light period, one horrendously heavy one and nothing since - until this week.  It started with mild cramping and a slight discharge and has got heavier over the last 3 days.  The menopausal symptoms (hot flushes mainly) that started with the tamoxifen had settled down, but I've noticed them again this week, so I'm thinking this is my hormones kicking in and a "real" period.  However I am also worried sick as have had several friends with bleeding after the menopause that was cancerous cells in the uterus.

Having read all the posts here, I am going to give my breast care nurse a ring for some advice.  Unfortunately I lost all faith in my GP (I really should find a new one!) in the period leading up to my diagnosis, so I really hope the BC team can sort this out without my needing to see her.

[SpecialK]

Starlinga83- Hello. I too have been on Tamoxifen for almost 3 years and my periods stopped within the first month. I have a heavy flow period once every four months, almost to the day. My oncologist said that is to be expected. Now I'm experiencing a discharge of dark or "old" blood a week before the periods. That's all I've experienced so far. Good luck to you, hope this info helps.

[Andeezegirl]

Hi girls I'm new on this forum I don't tend to get bleeding I've been on Tamoxifen for about eight weeks now but find that I have watery discharge you know just ordinary discharge.. even though I am post menopausal although II have always still had discharge.. I've got massively much wetter does anybody else suffer from this I've been told by my oncologists today that my full body CT scan taken last week ..The scan has shown a fluid content in my womb.. waiting to have an ultrasound tomorrow to find out what is causing this wondering if this has anything to do with my excessive watery discharge and the use of Tamoxifen .. many thanks Donna x

[Jill1998]

Hi Step64,I've had some very light bleeding after 18 months of nothing it coincided with a routine check up at breast clinic and their advice was that because Tamoxifen can cause changes to your womb you should get any bleed that occurs after a long period of time investigated.Waiting for my gynae referral -joy!!!

[Step64]

I just completed my 8 year check up.  I started chemo Jan 2009 for breast cancer.  I started Tamoxifen in Jun 2009 6 months later.  Stayed on tamoxifen for 4 1/2 years and was switched over to Letrozel in Jan 2014.  So for the last 8 years I have not had as much as a hint of a minstrel cycle.  Today it was like I was 12 years old and totally surprised when I saw blood on the T.P.😱Started looking up to see if anyone else experienced bleeding after 8 years of nothing.  Not sure if I should call my doctor?  No pain anywhere, not sure if this post menopause?

[Dizzybee]

Starling, I would go to your doctor, it may be fine but they may want to check your endometrium.

These things are horrible, you worry about whether you should be doing something or whether it's nothing to be concerned about. If you are pre menopausal I think some women do have periods on Tamoxifen, some don't, so it may just be that your body is getting back to a menstrual cycle. If you're post menopausal they'll want to do a scan to check it out.

Anyway, good luck, I'm sure all is well.

Sandylou, that sounds really horrible, I can understand why you feel in limbo. I did have an episode of post menopausal bleeding, but I'd only been on Tamoxifen for 3 days so it can't have caused it. They're still debating whether I should stop the Tamoxifen but I can't take anything else, Tamoxifen is the only drug licenced to treat DCIS so it's that or nothing. So the endometrial issue is likely to be a problem if I continue to take it. I hope you get some more information soon, if you have a different diagnosis you may be able to take an aromatase inhibitor which doesn't cause this problem. 

[Starlinga83]

Hi all, I am new to this forum after doing a search on the internet concerning unusual bleeding on tamoxifen. I have been taking tamoxifen for almost 3 years now & my periods stopped pretty much straight away but today I started bleeding out of the blue. Is this normal? Has anyone else had this problem? Should I call the breast clinic or my gp in the morning? Any advice will be greatfully received. Thanks 🤗

[Jill1998]

Sandra is there a reason for you not taking Letrozole /anastrozole?I don't think they have same side effects re womb lining as Tamoxifen .

[Sandylou]

I am 70years old and have had chemotherapy, radiotherapy, and have been on tomoxafin for 8 years. Two years ago I started bleeding and had a hysterscopy and a DNC under general anaesthetic, only to be told I have thickening of the lining of the womb. Now over 3weeks ago I started bleeding again, period pains and quite heavy.  My doctor sent me for a hysterscopy and was told there was no problems only a thickening of the lining of the womb and the bleeding would stop but if I carry on bleeding to visit my GP, he also said the bleeding is due to the tomoxafin, also he discharged me from further treatment.  I have made an appointment with The oncology doctor in a weeks time to see what he has to say. I feel that I have been left in limbo and I don't know what to do next. Had anybody had this problem and can put me on the right path. Regards Sandra x

[Sandylou]

I am 70years old and have had chemotherapy, radiotherapy, and have been on tomoxafin for 8 years. Two years ago I started bleeding and had a hysterscopy and a DNC under general anaesthetic, only to be told I have thickening of the lining of the womb. Now over 3weeks ago I started bleeding again, period pains and quite heavy.  My doctor sent me for a hysterscopy and was told there was no problems only a thickening of the lining of the womb and the bleeding would stop but if I carry on bleeding to visit my GP, he also said the bleeding is due to the tomoxafin, also he discharged me from further treatment.  I have made an appointment with The oncology doctor in a weeks time to see what he has to say. I feel that I have been left in limbo and I don't know what to do next.

[wallyabc]

hi Amber I've been in tamoxifen for over 3 1/2 years. Chemo 2012 went through chemopause. left masectomy Jan 2013 and 25 rads. 1year of herceptin. Started tamoxifen Feb 2013 and have had mostly regular heavy painful periods since then!! just missed 2 this year. I'm baffelled as I thought you do not have periods on tamoxifen. I've had d&c hysteropy ultrasounds and biopsies and all good except for fibroids. oncology just keep telling me it can happen!! I'm 49 and I still have to go through real menopause!!! hope this helps. How I feel about tamoxifen is a whole other storey but im sticking with it. I've no alternative at the moment. good luck with everything. x

[Suziex]

The same happened to me 4 weeks ago I had a bleed after taking tamoxifen/letrozole for 5 years. I seen my gynaecologist on Tuesday I had a polip which he removed what I was there. He is 99.99999% sure that it is not cancer. I was like you and thought the worst but everything turned out ok. Hope this helps x
Suziex

[Bibi44]

Amber I can understand why you might be worried, but it could just be your system starting up.  You have your scan booked, so hopefully they will be able to reassure you after that.  If it dies turn out to require some further treatment, at least you will have caught it early.  Try not to panic, hard I know. xx

[AmberT]

Good Evening!  I was dx with stage III BC in 2013 when I was 37.  After first round of chemo, my cycles vanished.  After 6 mos of chemo, bilat mastectomy, and radiation, I was put on tamoxifen. ( It wasn't to horrific.)  I was on herceptin for 1 yr.  My cycle never returned. My oncologist said there was no way I was in menopause even after 2 yrs of not having a cycle.  I did blood work which showed I was in menopause due to super low hormone levels.  Then randomly almost 3 yrs to the date, I started bleeding.  Super painful lasted for around 9 days.  I contacted my GYN, he didn't seem to concerned, but did recommend I get an ultrasound. (Scheduled for 9/30)  I was switched to anastrozole by my onc.  Took a while to get use to that... body aches were HORRIFIC!  Then randomly today, I started bleeding again.  Now, I'm thinking that its probably some form of cancer.....(I'm sure we all jump to these conclussions)  Anyone have an experience like this?

Thanks!

Amber

[Jill1998]

Hi Pia,welcome to the forum.Tamoxifen can affect your womb lining so best to get it checked out.Fingers crossed its something straight forward.Jill.

[Pia]

Hello ladies. I'm new to the forum. I'm on tamoxifen for almost a year now and after being without my period while on it, I suddenly have bleeding. Like my period although a bit lighter. Does this really occur while on tamoxifen? I'll be able to see my doc in a few days but I can't help but worry.

[blueboo]

Hi, I was diagonosed in June 2011, double mastectomy, a year on tomoxifen. I have had two more operation to replace and remove implant. I still have fluid coming out of my scar.
I went for a scan as I had severe abdominal pains. I have a fibriod and a ovarian cyst. Obgyn said its thicking of lining which is in normal range 7mm. They took a sample and told me to come back.
I have had really irregualr period, however, this june they started again. I never had extra bleeding or spotting. Now I am bleeding exactly 3 weeks after my period, I amvery very worried.
I was told by my surgeon that they can remove my ovaries through keyhole surgery and its not a bother, I dont want my ovaries removed.
I am about 40 years old and I dont want my ovaries removed. I have asked if I can stop taking tomoxifen and they said no.

[mickey24]

Hi Susan, thanks for your post its very reassuring, as I had my cyst removed yesterday through keyhole surgery and also d &'c and biopsies taken. My consultant thinks its all caused by tamoxifen but obviously still have to wait for path results. She also said that they will still keep me on it because it's the gold standard treatment for premenopausal women and they will just scan me every year to keep an eye on the womb lining. I'll let you know how I get on! Michelle xx

[Suze_J]

Posted twice...!

[Suze_J]

Hi,
Just seen this thread and wanted to say that i am also on tamoxifen and about a year after chemo my periods came back and the first couple were horrendous - I thought I would never be able to leave the house again! They have settled down now, although I have very erratic periods. I have also had a couple of d&c's due to what looked liked thickening of the womb, but turned out to be the layer beneath which is apparently fine and a side effect of tamoxifen. In addition I have had huge problems with ovarian cysts, again a side effect of tamoxifen. Michelle I was very pleased to hear what you said about the consultant at the Marsden as I also found out my oestrogen is very elevated (found out because due to have my ovaries removed in the next couple of years as am BRCa2 and wanted to know if I was near menopausal).
Good luck with your op.
Susan

[mickey24]

Thankyou everyone for your comments. Fi, my bleed was just like yours, I.e bright red blood, not discoloured, just not a typical period and that is why I was was worried, we know our own bodies! my gynaecologist has told me that if there are any abnormal cells, worst case scenario will be a hystererectomy. I know tamoxifen is a wonder drug but I really hate the side effects!! i hope after this I can change to something else. Fi, good luck with pathology results, I will keep everything crossed for you.
ribby, I know exactly what you mean by just starting to feel normal again and then BANG, . Try not to worry too much about if tamoxifen is working, my consultant says it is, if you want to pm me I can give you a bit more info on that, as I got told off by one of the moderators for naming the consultant at the marsden!
Love Michelle xx

[Fionhun]

Hi Michelle - I was in hos as out patient today for hysteroscopy and biopsy of polyps. I was dx in May 2011 (aged 43) with ductal & lobular bc inc lymph nodes. Have had 3 x FEC 3 x Docetaxal, surgery, rads and also mastoplexy (to balance things up on other side), on Tamoxifen since Jan 2012. Was on Cerezette before all of that and no periods for about 8 or 9 years. No periods during chemo or subsequent treatment until 3 weeks ago then not really a period just a bleed. Called onc. and left message with her secretary, she called my back next evening at home and said she would make appt. with gyne. Saw gyne last Thursday after interuterine ultrasound, he tried for uterine biopsy there and then due to endometrial thickening but couldn't get it but did take cervical biopsy. Today found out not polyps but hyperplasty of the endometrium so cells sent for urgent path report and endometrium resectioned (bit removed). Back to gyne consult in 2 weeks. Doc said although he couldn't comment until paths are back I seemed like a nice lady and he was sorry, wished me luck and told me to keep my fingers crossed!!!!
I can def. say that initial bleed was NOT like a period - no cramp, no discoloured blood, no warning just a bright red bleed. Also everyone I have been seen by has commented that because I contacted them quickly the chances of them 'catching it early' are greatly increased. Although this is not much consolation at the mo when I can't sleep fpr the pain and just can't stand the thought of more 'stuff' when I thought it was all over, I'm sure in the long run it will have helped. I do know if paths come back as cancer cells I will be asking for removal of womb and not chemo etc - just get it out and be done with it. Tamoxifen treatment is being continued.
I know care differs according to where you live, I am in Kent, but hope the info I have been able to give will be of use to you in some way. I really hope the outcome for you is a good one and it is 'just' the period from hell but as always better safe than sorry. Take care. Hugs Fi x

[Pammyx]

I am sure it will be a period I went through the menopause many years ago and heavy spasmotic periods were part of the course these are sometimes aggravated by fibroids or polyps which are not cancer. I had my periods investigated i had both fibroids and polyps had polyp removed during day surgery. uterine cancer takes some time to develop and if it is it is easily treated. Your symptoms are every day occurrences for gynaecologists and they will be able to give you a very quick diagnosis probably on the day. I really would not worry your symptoms are very typical of a normal menopause whatever that might be. Many of my friends had similar symptoms going for a year without a period.Best wishes pam

[Ribby72]

Hi Michelle....
Im from the 'starting chemo in october' thread & am so glad i read your posts!
I am 40 & was diagnosed & mx July 2012 (i was 39), started chemo in october (6 x FEC), then 15 x rads. Periods stopped after #3 chemo. Started taking tamoxifen March 2013. Had few hot flashes, mood swings, slight weight gain. So assumed i was going through the menopause.....
However, on Friday i had severe abdominal pain then started really heavy bleeding. Rang BCN who didnt say much apart from see your GP. Managed to get emergency appt later that afternoon.
Saw GP & the first thing she mentioned was uterine cancer!! Of course i burst into tears.... Anyway, she then proceeded to talk about endemotrosis (sic), 'whipping the uterus &/or ovaries out' (her words) but said it could just be the tamoxifen didnt agree with me. I asked if it IS the latter, then does it mean the tamox isnt working. She didnt/couldnt answer me.
Understandably, i was worried sick. Its been 12 months since my diagnosis & i was just beginning to feel 'normal' again. I know they have to tell you the worst case scenarios but she was very matter of fact & abrupt with it so it was a huge shock. She knows my situation (im recently divorced & have a 9 yr old daughter) so i feel she could have been more 'tactful'!
I came on here & after reading your post & the replies of others, it has made me more positive that it could just be a period.
I have appt at gynae for ultrasound & internal scan next Thursday (11th July) so am keeping fingers x'd until then.
I do wonder if i am NOT going through the menopause, does that mean the mood swings are just because i am a moody cow??? Ive been blaming the menopause all along! 😕

[Melrose15]

Hi Michelle. I'm glad you now know what's causing the bleeding, hopefully you're feeling much better. Good luck with the op in 4 weeks Xx

[mickey24]

Thanks everyone for your comments. I had an ultrasound yesterday which shows a thickened lining and polyp! Booked in for a hysteroscopy in 4 weeks time. she also found a large cyst on my ovary which she is hoping will have disappeared by the time I have the op, but if not I will have to have that removed too. oh joy!! I did ask about having my ovaries removed but she absolutely won't do it as thinks I am too young (46!).
For anyone that's interested, I also had a letter from my consultant who has says that many patients still have periods on tamoxifen, and although the ovaries are still making oestrogen, it can't do what it would normally do because the tamoxifen is sitting where it would be sitting. He has also consulted the world expert on this subject at the Royal Marsden, and he has reassured him that this in no way interferes with the way tamoxifen is preventing cancer growth.

If anyone else has/had athickened lining on tamoxifen I would be really interested to hear from you.

thanks Michelle xx

[cupoftea]

HiMichelle

I have been on tamoxifen for 4 years. Periods stopped on chemo, ( was 36) I did have some bleeding after starting tamoxifen, which was quite on and off. I just kept my bcn informed and for a while just kept an eye on it, then was sent for a couple of scans to check for thickened womb lining. Mine settled down, now have a period about e very 6 months. I'd let your bcn or team know and keep on eye on when, how often the bleeding happens. wishing you well.
c

[smc78]

Hi there
I was 33 when diagnosed last year and had 3 Fec and 3 Tax chemo. My periods stopped after the 1st Tax last September. I had a mx in Dec, started Tamoxifen in January then suddenly after 5 months they came back. The 1st period i had was the most painful i think i've ever had so it certainly made up for it! Now my periods are fairly regular (every 4-5 weeks) lasting around 5 days and seem to start off heavy then fade away towards the end. When i told my onc my periods had come back she wasnt bothered at all even though i had been on Tamoxifen for a few weeks by then.

[jannyjan1]

Hi Michelle
I have been on tamoxifen for nearly 2 years now. Back in Nov last year I had a very heavy bleed that lasted a few days, it was constant. Contacted my Breast cancer nurse who arranged for me to to see a gynae. the upshot was I went for a vaginal ultrasound which found a thickening of the womb lining, I then had a couple of other tests, which for the life of me I can't remember what they were called one was biopsy of the cervix and the other where they used water to get a good look at the womb, which all came back clear. It was suggested that I went on the Mirena coil, which I did (after a lot of thought and consideration I might add, as I was concerned about the tiny amount of proestrogen that is in the coil). I now have regular womb check up's but the thickening has gone and not had any more bleeding. I would recommend that you get it checked out. All the best Jan x

[Melrose15]

Michelle I'm sending you a virtual hug <<>> Hope you get a quick response from the bcn xx

[chascat]

Michelle,
I have my first onc check up tomorrow afternoon since finishing treatment and one of the things on my list is having my ovaries removed as I was also 8/8 ER+, i'll let you know what she says.
Take care
Lydia x

[mickey24]

Thankyou ladies for your replies. This has now turned into the heaviest , most painful period I have ever had in my life! I'll spare you the details but lets just say I can't go anywhere....it's horrible! I'm going to call my breast cancer nurse first thing tomorrow. I'm worrying about all of the oestrogen in my body especially as my tumour was 8/8 oestrogen positive. im wondering if anybody has had zoladex injections alongside tamoxifen? or has anybody had their ovaries removed due to high levels of oestrogen? Thanks again Michelle xx

[Melrose15]

Thanks for the info Lydia. I've just had my 1st Chemo so a while till I start Tamox But I will research it more before I start. I'll be 52 by time I finish so knowing my luck my periods will return and I'll go through the menopausal symptoms all over again 😞 x

[didi62]

Hi Michelle I would see your gp .I started tamoxifen in October and had regular periods before that although I was just 50.I had surgery and radiotherapy.I didn't bleed for 4 months when started to heavily.I rang gp who sent me for a pelvic ultrasound.it showed a polyp and some lining thickening.I had them removed this week under General anaesthetic.the gynaecologist said tamoxifen makes it more likely I could get more.bleeding is the only symptom so to go back if bleed again.he tried to reassure me that the polyps cause you to bleed early so the chances of them turning nasty aren't too high.they do test them to make sure .Hope this helps.take care Denise

[chascat]

Hi Michelle
Sorry I can't help, i've known a few ladies this has happened to, and their oncs have all treated it differently with some saying it's absolutely fine. Please try not to worry, easier said than done I know, i'd be the same. i'd suggest giving your BCN a ring for some clarity.
Melrose15 - for info, Tamoxifen doesn't stop the body producing oestrogen and wont bring on early menopause, your body still produces oestrogen as normal, but Tamoxifen stops it binding to cells, good cells as well as bad, hence, you will probably get menopausal symptoms, your periods could return when you stop taking it and you could still then have to go through a natural menopause. I'm hoping i go through mine naturally whilst taking Tamoxifen, can't bear the thought of putting up with these symptoms twice!
Take care all
Lydia x

[Dyane]

I am premenopausal but my periods stopped after chemo 1, so in my case this may be why my Onc said they should not return while on tamoxifen. My Onc was surprised that although my periods have stopped I haven't had the normal menopausal symptoms such as hot flushes. I am also under the impression that after my 5 years of Tamox is up my periods could return, who knows, by then it could be the norm for premenopausal women to stay on Tamox for ten years ...

Personally my understanding is that once on tamox any bleeding should be checked out, but I haven't started it yet so some of you ladies with tamox experience probably know better. Everyone is different, no two bodies are the same, and no two people's circumstances are the same which is why different Oncs offer dfferent advice as it could well be specific to EACH individual patient.

Good luck

[Melrose15]

Hi Michelle. I can't help with your post but it is interesting. I will be on Tamo after chemo and rads and I was under the impression it brings on early menopause. This I thought was because it stops the body producing the Er hormones that feed the cancer cells, therefore stopping the ovaries producing eggs. I know woman that are peri menopausal whose periods start again after coming off tamo But thought whilst on it you wouldn't have periods. A friend of mine had to have monthly injections to stop hers as well.
I hope you get some answers. It'll be interesting to see what others say.
Take care.
Emma xx

[gordok1]

Hi,
i am the same has mummy'sboob, mine last for three days and are very light. I think some woman will continue with periods and some won't depending on how near you are to menopause. I worried also but spoke to my onc who told me that it was normal for some woman to have periods while taking tamoxifen, funny isn't how we are all told different things, xx

[mummysboob]

Hi, Im premenopausal and have ben taking tamoxifen since March 2011.
I didnt have chemo though but my periods have continued and been more regular than before diagnosis.
They are heavier but much shorter. hope that helps a little!

[Dyane]

Go to your GP. I have just fnished chemo and haven't yet started Tamoxifen, but will do in a couple of weeks. My Onc said that you don't usually have periods (music to my ears as I suffer badly) whilst on tamoxifen. It might be nothing but it may not, so get to your GP on Monday. Better to get it checked rather than let it run.

There may be other girls on here who have been on Tamoxifen for a while, so they may be better placed to tell you what is normal and what is not.

Sorry I'm not really answering your question.

Dyane

[mickey24]

Bump to appear in latest posts

[mickey24]

I wonder if anybody can give me some advice. I finished chemo and rads in october and have been taking tamoxifen since then. I haven't had a period since July. My oestrogen levels were checked a few weeks ago and my consultant said it was raised and warned me that I might have a period. He also said in a letter to my g.pthat although I'm not having periods "i am making oestrogen and tamoxifen is interfering with the way oestrogen is binding and working". today I have started to bleed quite a lot and I am assuming this is the beginning of a period. my question is does this mean that tamoxifen isn't working as well now? I'm confused, and starting to worry....thanks Michelle xx