thickened endometrial lining post tamoxifen

Hi, I came off Tamoxifen 4 months ago after 5 years and have had constant bleeding since. I had a D and C last friday and am waiting for the results of biopsys. My lining was 35mm thick which has definately worried my gynaecologist and is terrifying me. Has anyone had a similar experience and things have turned out ok, I am struggling with the waiting,

Hi Manxgirl,

I noticed no one’s replied so thought I’d let you know I’m in a similar situation as you. Been on Tamoxifen for approx 2½ yrs, had sudden show of blood for one day, went to GP who made emergency referral, saw Gynae consultant who requested urgent ultrasound, they wouldn’t tell me results but confirmed it was ‘considerably thicker than 4mm’ (which anything under is classes as normal). Been booked in for hysteroscopy and D&C biopsy next thursday 31st.

‘Terrifying’ just about sums up my feelings as well. All the worry, thoughts of going through all of this again, let alone major surgery, and the ‘how long’s it been going on? Has it been caught in time?’ I feel like my heads going to explode with the stress of it all and the weeks of waiting for results.

I’m wishing you all the luck with your results lovey, sending you a cyber hug. Let me know how things go and if anyone else out there has been through the same, please let us know.
Take care, x

Hello ladies

I had a greatly thickened endometrial lining after 3 years on Tamoxifen. No bleeding but a lot of lower abdominal pain. Was referred to gynae consultant, he indicated to me that it was worrying (to the extent that i phoned the bcn later in tears). I had the D&C biopsy and in fact there was nothing sinister at all, just a thickened womb lining. So relieved (this was in 2007 by the way). The onc then took me off tamoxifen and onto exemestane, but that’s another story.

Obviously we are all different - but this particular scare for me was just that - a scare. I hope that yours is the same. All the very best with it to both of you, love Mo x

Thanks for your responses. The gynae approach seems to be it’s cancer until proven otherwise. If its any consolation, my breast care nurse said she has never known it turn out to be cancer and she was my breast care nurse back in 2005. I think it is probable that neither of us have cancer, it is just so scary waiting after what we have already been through, can’t belive they make us wait so long for results, it’s torture. Good luck and thanks Mo for your support, I’m so glad it turned out ok for you x

Hi all,
Yeah I’m glad for you too moser that it turned out to be nothing and thanks for sharing your story to help give me some hope. Agree totally with you manxgirl about the gynae treating it as though it is cancer until proved otherwise.
Here’s hoping we’re ok, good luck manx.

hi just to let you know i have been thru this twice while on tamoxifen both times everything was ok gained a couple of polyps and endrometisus ( not sure spelling) but nothing needed any treatment now post men so on Exemastane hope this helps a little

hi ladies,my story is slightly different in that i got my first diagnosis in 2000, chemo, and radiotherapy, but not tamoxifen, however i was 34 at the time, and as a result of my treatment i began an early menopause at 43, this manifested itself in symptoms xwhere i began bleeding and it didnt stop for 4 months i couldnt leave the house it felt like someone just turned on a tap, (sorry for being explicit) anyway my point is this, i was referred to a gynaecologist, who immediately recommended a procedure called a novasure endometrial ablation, this was done, and i havent bled at all since, (touch wood) I dont know whether this info is of use to anyone but it might be worth mentioning, the procedure is usually done whilst you are awake, although they put me out because i had too much pain, it stopped all my problems so i thought i would just mention it love liz x

Just to let you know that my results have come back and it isn’t endometrial cancer. It’s a huge relief and I am grateful for all the support I recieved on here. Liz, I had an endometrial ablation done at the same time as the D and C so hopefully I will have no more bleeding too!Mo, I hope everything is ok with you as it probably will be x

thats good news manxgirl…

i was just about to post my own story as i had heavy bleeding after 6 month on tamox and needed a D&C and pipelle biopsy for thickened endo lining and had a mirena inserted… but it was just tamoxifen effects too.

endo cancer is very rare even on tamoxifen the chance of getting it is about 36 in 100000.

Lulu xxx

Oh I’m liking those statistics Lulu…making me feel much better, I have no bleeding but a lot of pain and cramps. Got my ultrasound and possible biopsy on Thursday. So glad to have came across this thread. Fingers crossed its all ok for me.

Fee xxx

Great news Manxgirl, and good luck to you, Fee, hope it is good news.

Mo x

Hey Guys
been off Tamox for a year now after 5 years taking it and have had irregular bleeding for the last 5 months. I was 33 when I got breast cancer. Just going through a series of tests and have 2 weeks to wait for hysteroscopy. Feel reassured by the comments but having had cancer once it’s still nerve wracking. It’s the waiting that is so difficult. They tried a pipelle biopsy but didn’t get enough tissue so i waited 4 weeks for a ‘no result’. Just one of those things I guess. Slightly thickened lining but only 12mm so not too bad but the 3 week bleeding and haemorrhaging bout is all a bit frightening and the sex and bleeding mortifying. Sigh. Just typing it out helps though!!

hope the hysteroscopy goes ok moongirl and hopefully wont have to wait four weeks from the results of that.

Lulu x

Hi Manxgirl. Firstly I’m very pleased that you do not have endometrial cancer. But to answer your original question, Tamoxifen has been linked to several conditions, such as endometrial hyperplasia and liver malignancies. For those who are concerned about this, there is another drug approved by the FDA, called
Toremifene (don’t know if it’s available here in the UK). Apparently it works in exactly the same way as Tamoxifen, but research has shown it is not associated with endometrial hyperplasia or liver malignancies.
If anyone knows more about Toremifene, perhaps they could let us all know.

Hi I googled Toremifene and it seems to have the same side effects as Tamoxifen and the risk of uterine cancer.It says it is used in this country for secondary cancer in postmenopausal women.


Hi all,
Macmillan has some info on Toremifene, ive put the link below.

Also the info on Tamoxifen.

I think as stressy-messy has said above, both these drugs seem to have pretty much the same SEs,though Toremifene is only used in the UK for Secondary Cancer and also only in Post Menopausal women, unlike Tamoxifen which is for use in Pre Menopausal women, though can be used for both .

Linda x