Tamoxifen Induced Endometrial Hyperplasia

[danielafederic]

Hello everyone. I would think that as long as the endometrium is checked regularly, it is fine. I didn't have my ovaries removed in the end, I have occasionally periods or period pains, but my endometrium is less thick than it was when I had my first bleeding last April. I have no medical knowledge, so really cannot say what causes this. I can only repeat what the gynae told me, which is that the tamoxifen interacts with the hormones produced by my body causing changes in the endometrium. I too thought I had had menopause, as my periods stopped during chemo and I had hot flushes, but I noticed that I have all the hormones back. Bad I guess as my bc was hormone-fed...

I don't think ther eis a universal answer, as every medical history will determine the risks and benefits of tamoxifen etc. Just be positive, and get checked regularly! It is scary, but better than leaving it until too late. xxx

[Sisterjayne]

Hi seize , I've only been on tamoxifen for three months and although I'm probably post menopause now having had my last period 18 months ago ,I've been experiencing dragging like period pains , not all the time almost like they are a period without the bleeding and I've prob had a couple of these episodes since August, no spotting ,nothing .anyway went for an ultrasound on tues and she told me I had endometrial thickening so I'm now waiting to hear what they plan to do next in the meantime I'm a bit anxious about taking the tamoxifen , not even sure after 3 months if this would be the cause but did have a scan 14 months ago and that was fine !! Xx

[Suziex]

Hi I have just been going through these posts and just wondered if someone can tell what thickness of the womb they get concerned about. I have just had a scan and the report says slight thickening I have taken tamoxifen for nearly three years.xx

[shazza_bazza]

thanks danielafedric and revcat.... it's difficult to know what to do for the best sometimes when the experts give conflicting advice, at least now with your information i can discuss what options i might have whereas before it was just accepting what i was told i'm armed with a bit more knowledge now.  thanks ladies x

[RevCat]

hello ladies, as I started this thread a way back when, I still have my acocunt set up to get notifications even though I hardly ever drop here nowadays.

I am sorry you've had to join in with me, and I hope that you soon get some resolution.  It really does seem to vary a lot from person to person what the consultants think is the best path and why.  I am still waiting for local gynae lot to get their act together (long and boring story I won't waste time on here) but I do trust my breast surgeon who oversees my care.

Options he laid out were:

• Do nothing and carry on as is (what gynae said last year) - he does not expect me to just 'put up with it' 🙂
• Carry on with Tamoxifen as it is my 'drug of choice' (age/stage/bc history) and have a mirena coil fitted (what i am still waiting for gyn to get around to)
• Switch to an aromatase inhibitor AND have zoladex jabs - not thought to be a good option as I already have joint pain, flushes and eye issues with Tamoxifen and all these could be worse with an AI

He did not mention surgical options though I know from other conversations they can include:

• One or both ovaries removed (usually both) which can have significant side effects, and then you have to swtich to an AI as it won't mean no oestrogen in your body
• Bilateral salingoopherectomy (BSO) - both ovaries and tubes out - and AIs
• BSO plus hysterectomy - and AIs

Most people affected in this will, so I am told, only have one episode of bleeding and a benign cause.  I've had two episodes with polyps removed, and have had one and a half (some spotting) more whilst waiting for my gynae lot to get organised following breast team referral last October (back on blower today!)

Hope you find a solution that works for you and that you stay healthy and well.  I probably won't be back on here for a while but will get notifications of updates or your can always PM me if you think I might have anyhting useful to add.

[danielafederic]

shazza bazza, I made up my mind due to family history, but perhaps you should follow the gynaecologist's advice? There seems to be a lot going on for you... my gynaecologist said that if I have my ovaries removed, then no more hormones produced by them, no more ingeraction with tamoxifen and therefore the womb will be safe, although, she added, it doesn't mean she can exclude I'd get endometrial cancer further down the line... (that's the way they say things, I suppose to prevent people from suing them?), and this is a private consultant...

But then again, she wanted me to have a ct scan, when ultrasound would be the first thing to do, and everyone else has had ultrasound to begin with ...

[shazza_bazza]

i had a hysteroscopy in sept due to the thickening of the lining of the womb,they removed 2 polyps but were unable to remove 2 more at that time ( i think there must be some sort of party going on down there) so i'm due to go again in june,  The advice given to me was that the benefits of tamoxifen outway the negatives but they will continue to monitor it,  should i be thinking more about other options?

[danielafederic]

Yes, thanks Chris61, I have contacted my surgeon, and asked him to do the full job, I don't want biopsy etc., I just want it out of my body! Obviously being Easter he hasn't replied, but I do hope he will do it within weeks. xx

[Chris61]

Yes, after having a hysteroscopy and the results being a thickening of the womb due to the tamoxifen , together with my gynaecologist , I have decided to have a hysterectomy . I have only been on tamoxifen for nine months and there has already been a change . I can't continue for at least 4 years on this medication worrying what it's doing to my body so I'm going for the hysterectomy . My gynaecologist said he understood and agreed with my decision . Hope that helps . Take care x x

[danielafederic]

Anyone decided to have the womb removed? My gynaecologist suggested I had my ovaries removed as I got a period, I went for an ultrasound and my endometrium is thicker and "ondulated" (?) - but I do not want to be prodded and poked any more, I didn't even know I was going to get periods again and do not want to live with the fear of endometrial cancer (which was what my mother died of)...

[TotallyConfuse]

Hi I'm 54 was DX with IDC 2 yrs ago this July. I am also on tamoxifen and had a polyp removed from cervix couple of months ago. Results came back ok but said they would have to query meds. Saw BC specialist couple of wks ago and he didn't know anything about it, assume that meant it wasn't in my notes. All he said was I need to discuss it with oncholigist at next appt in July!

[RevCat]

Not sure anyone other than Lulu is reading this thread anymore, but just to note I had an excellent conversation with my BCN and breast surgeon today about all this and we have a 'plan' to help me make an informed decision on what next.

The ideal is to stay on Tamoxifen but surgeon would be happy for gynae people to use a mirena coil to protect my uterus (kinda makes me laugh as contraception has never been necessary given my nunnish lifestyle!) so he is going to get them to come up with thoughts in that regard.  Apparently guidelines would be  tend to suggest staying with Tamoxifen until age 55 (if the move to ten years rather than five becomes guidelines, otherwise I'd continue with it to 53 which is the end of five years) which would be a long time to live with this.

The alternative would be to switch to an AI and have zoladex with the option of reverting to Tamoxifen if that proved unbearable.  Nurse hinted strongly that this was not a path she would advocate as the combined SEs of the two could be a whole lot worse than Tamoxifen.

Am happy that steps are being taken to help me make an informed choice, and there seems to be consensus that a third bleed, should it happen would signal the need to do something else.

[RevCat]

Thanks Lulu, always good to get your expert knowledge.  🙂

[Lulu34]

Cat pretty much everybody on tamoxifen will have consistent with tamoxifen induced effects.... Some endometrial thickening is to be expected...... Not sure your BCN will be able to shed much more light.... But maybe a discussion with your dr or gynae would be better..... But think in light of endometrial thickening/ tamoxifen effects and insufficient sample you would be more reassured by a repeat sample.

Good luck

[RevCat]

Update!

I was told by the gynae Dr if I hadn't heard after three weeks to phone them - so I did.

Overall the news is good, but it raises questions for me.

The two polyps were benign so that is good news.  However they were 'consistent with Tamoxifen induced effects' which I think means some form of conversation needs to be had

The endometrial sample was 'insufficient' which presumably means it will need to be repeated

I am due to see my BCN next week about my lymphoedema, so I will raise this with her then.  I do not want to stop taking Tamoxifen but I do want someone to do something about this recurrent side effect.

[Lulu34]

There isnt a specific history of it running in families but i have come across families where mum and daughter bith had early or botsh had late menopause but come across many more who had average menopause regardless of whether mother had an early or late meno.... So you might have a late one but much more likely to become menopausal around 51-52

[RevCat]

Bless you Lulu, for being the amazing person you are. 

I don't know if family history counts on this?  My Mum had a hysterectomy (cervical cancer) at 54 and was not yet meno and my grandmother (her mother) reached meno at 59!   Don't know about my Dad's side. Gynae man was a big vague when I asked him saying 'possibly' when I asked if late meno tended to run in families.  Anyway, will speak to my breast team as and when.

Sending you hugs m'dear xx

[Lulu34]

Cat you would hopefully be post meno by the time younhave done 5 years and can then maybe do an AI instead.... Glad its all looking normal so far xxxx

[RevCat]

So quick report after hysteroscopy and biopsoeis today -

Two polyps one about 1.5 cm and one about 1cm I think (he showed me with finger and thumb but didn't have my glasses on so couldn't see properly!) both smooth and he is "not expecting anything sinister" results in about three weeks.  When I asked if I just have to put up with this if it happens again he basically said 'yes' unless it is sinister and then said Tamox benefits outweigh risks... my question wasn't 'should I keep taking Tamox' that's a no-brainer with my stats, it was 'can't you fix the bleeding'.  So when I next see my breast team I will ask them what options there are.  If they want to keep me on Tamox for 10 years rather than 5 do not want to be doing this every 9-12 months!

Will update when I know more

[Lulu34]

Hi Angie


I got heavy bleeding after about 4-6 months of tamoxifen.... Some people find their periods stop all together.

I had a D and C and ot a mirena inserted in jan 07, was diagnosed with ER+ BC the april before. ... Mirena coils have protective effects of the endometrium for a lot of women and there is some evidence they can reduce endometrial problems caused by tamoxifen. So for women with hormonal BC on tamoxifen it has its uses..... And you have to weigh up any risk from the small amount of progesterone in the coil with the nightmare of heavy, painful periods or endometriosis.

As i said mine was inserted in jan 07 with daily spotting until about the end of march, then it was weekly spotting, then spotting for a couple of days every august (no idea why it was only in august but it was).

The spotting was annoying but no where near as bad as the heavy, frequent bleeding and flooding which was interfering with my life.

I had my coil until i had a hysterectomy in 2010... Thought it was great.

Now most women have no bleeding on tamoxifen and find it a very well tolerated drug with manageable side effects.... Hot flushes are the main problem, some people get aches and pains, or lack of concentration or mood swings but these are less common than the flushes.

I took tamoxifen for 5 years and really never had many issues apart from the bleeding early on and the flushes, but we are all different and the side effects one person experiences may not be the same for everybody.

If you ave any issues about your coil or potential problems speak to your oncologist or ask to be referred to discuss it with gynae

And good luck on the 17th Cat

Xxxx

[RevCat]

Letter with date for gynae arrived this morning - 17th Sept.  Three years to the date from my first chemo... some kind of appropriate circularity there!

[angiepops]

hi revcat

i'm 49. ive had irregular periods all my life until this mirena coil and always had problems. I had zoladex and it stopped everything but simulates the menopause ie. hot flushes and mood swings. I asked my onc about the coil and tbh she didnt really commit, she didnt seem that sure what to do with it, its only because my macmillan nurse assured me that a lot of ladies keep it in that i didnt worry too much.

Maybe the tamoxifen will be ok, i can only wait and find out cant I ?

thanks,

angie xx

[RevCat]

Hi Angiepops, sounds like have well and truly been through the mill one way and another.

I don't know about endometriosis so I can't answer any questions about how Tamoxifen might or might not effect it.  My understanding is that often if you have ER+ and PR+ breast cancer they don't like you have mirena coils (but could be wrong, I've never had any kind of coil) so may be worth checking with your oncologist when you start on the Tamoxifen.

Most women will not have issues with Tamoxifen causing the wall of their womb to thicken (which it maybe would also do to endometrial cells outside the uterus?) so most likely you wouldn't have any problems.  I'm not sure how old you are, but before chemo my periods were more-or-less text-book regular (albeit not at 28 days) and chemo stopped them after the second cycle.  I was told by my oncologist that at my age (47 at diagnosis) it was very unlikely they'd start again, and that I should report any bleeding or spotting to my GP.  Over the three years since dx, I have had bits and bobs of period-like pain and mid-cycle-type pain which I am told is 'nothing unusual'  but no periods; just these two bouts of bleeding.

As far as I can ascertain, there are a number of options that may be open to you...

Some younger/pre-menopausal women are given zoladex to 'put their ovaries to sleep', which may well be suitable for you.  Some have Tamoxifen, others may have Aromatase Inhibitors, but I don't know exactly how they decide which.

Some higher risk women, or women with repeated episodes of bleeding, have a hysterectomy and bilateral salpingoopherectomy (BSO) where they take out ovaries and tubes as well as the womb.  This is major surgery, so not an option to pursue 'lightly.'

Probably the best thing to do is speak to your oncologist and your gynaecologist, if you have one, and try to get them to work together a bit.   Sometimes it seems that it is up to us to ensure these 'less common' interfaces get covered as well as possible.

That's a very long reply which may not help at all - hopefully your Tamoxifen experience will be trouble free and really successful.

[angiepops]

hi all

how interesting this thread is.

i'll give you a bit of my story - about 5 years of endymetriosis and i think 3 laparoscopies, had mefenemic acid which was ok for a while, had leisions cut out one time, the endimitrium was latching onto various parts of my innards (was very painful), they did an ultrasound another time which showed two 'lumps' on my ovaries that they did not investigate even though it worried me sick - i was convinced i had ovarian cancer and i was going to die. Then i had zoladex for four months which helped a lot to slow down the flow and ease the pain. Then i had the mirena coil put in under anaesthetic which was still giving me grief when i was diagmosed with BC this feb. (its ok now though, seems to have settled in - or maybe its the chemo? who knows?) So because the coil is progesterone they let it stay, i'm oestrogen + and due to go on tamoxifen after rads in a few weeks i expect.

Shall i expect the endymetriosis to pick up again?

I had ct scan for BC and they told me i had 2 cysts on my ovaries (the 'lumps' no doubt)

Since end of chemo 4 weeks ago ive started to get the twinges that i used to get before signalling an episode, same left side but as of yet no bleeding.

After all this treatment for BC, i dont want to start getting prodded and poked again, what am i looking for in your opinion? Its like waiting for a bus! Tamoxifen, will it make me bleed heavy again?

Thanks in advance, you all seem very knowledgable

angie xx

[RevCat]

Thanks ladies.

I had a D&C last Nov (2012) when they also removed a polyp, so pretty much know what to expect.  At the time was no atypia so they didn't do any follow-up.  This time have asked them to copy in breast team with results as don't want to be doing this every year!!

Lulu know things tough for you just now, so sending catkin hugs your way xxx

AllyP hope things are going well for you xx

[Lulu34]

Good luck with your D and C Cat.... I had it done in jan 2007... Was quite straight forward.... Hope its nothing serious hunny x

[Allyp]

hope its nothing to worry about revcat xx

[RevCat]

Update for anyone who might be reading this old thread!

Gynae clinic today - TVU showed thickening of endometrium and three white spots which are 'something' that needs to be looked at.  Attempts at taking biopsies failed (three goes before she gave up) so am now referred for urgent day case under GA for hysteroscopy, biopsies and D&C.

Will update when there is anything to report.

[RevCat]

A quick update in case anyone is following this thread... I have an urgent referral to a 'one stop' gynae clinic for 28th August 2013 from which I should leave with an explanation/diagnosis and/or treatment plan.

Anyone who has bleeding or spotting on Tamoxifen or AIs do get it checked out - it's probably nothing but it is defintely something.

[RevCat]

Jusr dusting off this thread.... looks like I'm probably back here again as today saw the start of a new PMB (53 weeks on from the last one) and GP has just referred as 'urgent' to gynae people. Bit fed up but at least the ball is rolling to get it fixed again...

[Guest user]

Only just read your post so hope by now you have had a solution. I have been on Tamoxifen for four and a half years and have had three episodes of postmenopausal bleeding caused by endometrial hyperplasia. I wasn't given a choice as to treatment but had two endometrial resections in eleven months and then was given a thermal ablation just over twelve months ago. No-one has actually told me that the Tamoxifen caused the problem! Have been told that if I bleed again the only solution will be a hysterectomy!!

[Guest user]

Ahh I am Scottish through and through RevcCat but live in North Wales for my sins. End up all over the Welsh countryside going to different hospitals for different aspects of treatment...just as well I enjoy a good drive !

I didn't bleed or cramp too much after procedure but did have a huge heavy 7 day long period about ten days after and there was me thinking that a good clear out would make things better.In fact I am lucky that havn't had any pain with it all,was just the spotting in between periods and the fact that they were getting heavier and being irregular that led me down this path.
Not sure if it is just because I have got polyp still to remove that I am getting a follow up but my GP did seem to be concerned about my 19mm thick endometrium and I am glad that I will get chance to speak to oncologist as that is me 4 years on tamoxifen and I had been wondering what happens after next year as i am still pre menopausal.
Will keep you posted. Have a nice weekend.

Sandra x

[RevCat]

Hi Sandra, gosh that sounds so like my experience (you aren't in Glasgow too are you?! My GP is very scathing about the local gynae provision). I finally got the written versionof my results last week - one sentence that began literally "just to let you know...." It said that the smaples they took where normal, no mention of any follow up whatsoever. because I have a breast clinic appointment in a few weeks, I will try to remember to ask then - they are, imo, brilliant. Like Mary Grace, I had bleeding and cramping for a full week after the procedure, and I have noticed recently that in the evenings I am getting cramping again... so Ihave a feeling things may be returning. Hope you get some good advice re: hysterectomy etc., that's what I would like advice on but the gynae lot seem a bit blase.

[Guest user]

Hi Sandra, sounds like good news - if frustrating that they didn't have all the info and results. Hopefully they will all be clear. When they did the biopsy they seemed to clear out any thickening - I bled and had cramps for weeks - but as the biopsy results were normal, I'm back on tamoxifen and they don't want to do anything else. I guess the thickening may have reduced and may build up again, but seems that they aren't too bothered about that. Hope you feet all the results and a way forward sson, waiting for results is the pits 😞 xx

[Guest user]

Yoo hoo,well, eventually after just over 5 weeks and much calls I got told yesterday by the hospital that results were in ! But although they previously said I would get a call and or a letter I was then told,sorry , you need to discuss with your GP !!! Phoned GP to arrange appointment and they hadn't got the results ! Anyhow, they eventually got faxed and I saw GP today.

Good news is there doesn't appear to be cancer in endomertial sample but incomplete results as no mention of polyp at all or the biopsies done on it...grrrr. The Doc rather concerned about the endometrial thickness and is going to see if I can get a quicker appointment with the main gynae man. She is also going to make an appointment for me to see my oncologist to discuss the tamoxifen situation, ie should I remain on it or not or maybe look at hysterectomy etc to put me in menopause then arimidex could be a possibility. So although not had the worst case scenario everything still up in the air. I am just hoping they want to monitor it and leave me with my bits.
Either of you heard anymore about how you are managing it? Hope you are both well,feels like this has been a long slog .
Sandra x

[RevCat]

Goodness me Sandra, that's a ridiculously long wait. I would hope given it is so long that they are not concerned, but I do wish they would get it through their thick skulls how this messes with our minds. I have still not had the 'official' written results from mine - so that's now nearly 11 weeks, not good enough.

Keep us posted how you get on - hope it is 'just' a polyp that can be whipped out and that's that.

[Guest user]

Four weeks post op and still waiting for results !!!! Though did look back and see that you waited five and a half RevCat !. Have phoned the hospital.....again and this time told.....I can tell you if results are in but not actual results....like that is a whole lot of good. However, results weren't in but wait ...an appointment with the main man been made for the 8th March !!!!!! Not that I have had notice yet, I know I have got to go back in to get at least this polyp out and maybe more depending on outcome but not a happy bunny at waiting....am afraid the virtue of patience is lost on me.

Hope you are all keeping well.

Sandra x

[Guest user]

That is great news Mary Grace, you will have to let us know what the onc decides. They didn't seem to be talking to each other at my hospital or reading my notes as one of the docs I saw was wittering on about treating me with mirena coil if all was ok but I had one pre diagnosis and onc told me to get rid asap as my cancer 100% ER and PR ....... So will have to wait and see on that front. I am having a period now and is just as heavy as before....sigh.
No news for me as yet, will phone at end of week as that will be two weeks ....am hoping I am normal too...though this would be much disputed on a few fronts !
Sandra xxx

[Guest user]

It's a long time since anyone called me "normal" as various people have kindly pointed out 😉 Pleased to avoid any further surgery though and looking forward to (possibly) getting my tam back. Hoping too that Sandra joins us in the "phew" category xx

[RevCat]

That's great news Mary Grace, so pleased for you.

Sandra Ireally hope you can join us in the "normal" club.

[Guest user]

Just a quick update. Got biopsy results back today and they are thankfully "absolutely normal."

So now I just need to wait for them to decide whether they need to do anything at all and whether they are prepared to put me back on tamoxifen or whether that is that. I am off it at the moment.

Appointment with BS/Onc next week to decide what next, but for any nasty SEs at least another sigh of relief. And breathe.

Any news yet Sandra? xx

[Guest user]

Sounds like progress at least Sandra. Hopefully benign and you have taken a big step on the road to getting it sorted out. Take it easy whilee you recover xx

[Guest user]

Hi all, just to update you, had op yesterday and the most fantastic anaethetist ever ! No advesre results at all, that is the good news..the not so good news is that they found a large previously unseen polyp that for some reason they couldn't remove at the time, I was still groogy when they came round to see me so still have a load of questions re this.... was told that they have taken biopsies of it and the endometrium ,should have results in two week-ish and a follow up with another consultant in four weeks, I would imagine either have to take polyp out if benign or maybe whip whole lot out if more sinister....so will just have to wait and see. Hope you all have had a good Christmas and best wishes for the New Year.

Sandra xxxx

[Guest user]

Hi Sandra, funny how everyone is different. I think they were in two minds whether I should keep on taking the tamoxifen but said t stays in your system for a long while anyway.

They said results would usually be 7 days but with it being Chrias as could be two or three weeks. Luckily my BCNs are on the case. The BS asked to be copied into the documents, I reminded the nurses of day surgery yesterday and they said they'd pass a copy to the BCNs. This morning the BCNs rang to say my reslts would be back and be discussed at their team meeting on 31st Dec after which they'd ring me to discuss what next.

At least I have timescale and I am somewhat reassured that the gynae didn't seem too worried. Fingers crossed for yoU too. If it helps at all, I don't feel bad at all today. No real cramping, have been out Christmas shopping. Hope it goes as painlessly for you xx

[Guest user]

Hope you are recovering well Marygrace and not in too much discomfort. I had my pre op today,they couldn't get blood out of me, arrrgh and I don't really like needles that much, got sent to phlebotomist and she got in first time, hurrah. They take it to check if you are anaemic. I was told to keep on taking tamoxifen but to stop taking evening primrose oil. All on for op on 27th then will be in that waiting room with you, they quoted me two weeks for results....but then their time scales seem to operate on a different scale to everyone elses.
Wishing you all a Merry Christmas.

Sandra x

[RevCat]

Glad it went ahead and went well Mary Grace, now take it easy and let those sons of yours ply you with tea (stronger drinks are available) and cakes. That all sounds very similar to what they said to me - but the waiting is the pits isn't it. If you are feeling crampy make sure you take some painkillers, no need to suffer in silence. Hopefully you will be too busy having a great Christmas to worry too much, and thern some good news will be a wlecome start to 2013.

[katytc]

Hope you are feeling ok Mary grace, take it easy, fingers crossed for very good results, take care and lots of hugs to you xx

[Guest user]

Ok, hysteroscopy and biopsy done. Surgeon said he couldn't see anything which looked "out of the ordinary" although obviously as he has sent a sample away, will be waiting for the results back from the lab. At least it is progress though... Back to waiting room x

[Guest user]

Hurrah for your good news Revcat, normal bits sounds very good indeed. Good luck Marygrace, really hope it all goes to plan ,and I'm sure your boys will be just fine . Fingers crossed for both of us being normal too !

Sandra x

[Guest user]

I know, I always feel awkward asking as people have such busy lives and it means seeing someone when they aren't exactly at their best (plus expensive parking at the hospital and getting lost if its their first time). The last few times my sisters husband - who lives 4 hours away but works less than an hour away during the week - has kindly come to pick me up.

They always assume he is my husband and it is too complicated to explain. I've tried BiL but each nurse repeats the same "your husband..." routine. I have the complication - nice complication of course - of a couple of teenage sons, who don't count as old enough to "spring me" from hospitals yet but for whom I am busy leaving things to eat and messages about when / what time I'll be back. I hate having my phone off... Goes against all maternal instincts, though I'm sure they'll be fine.

Well tally ho, lets hope we get it over and done with xx