Tamoxifen: worried!

Hi out there

I have been on Tam for about 15 months and in the past 3 months i have had 2 isolated incidents of ‘spotting’ of vaginal blood. I am 53 and my last period was over 2 years ago.

I am seeing a gynae on 5th May but am very worried. could it be womb cancer? Does anyone know if there are any more likely causes of the spotting? Would be grateful for any advice.

Elvi

Hi Elvi

You are understanderbly worried, but I am sure you will receive support and advice from our users.

In addition, please give our helpline a ring if you would like to discuss your concerns before your appointment. The number is at the top of the page and they are open 9-5 today. Do give them a call if you can, they are there for support and information.

Kind regards.

Louise
Facilitator

Thnak you very much for this suggestion. I have talked things through with the Helpline and feel less anxious and thinking a bit more logically now.

Best Wishes

Elvi

Dear Elvi, One of the side effects of tamoxifen is thickening of the womb lining and this might be what is causing the spotting. Gyne problems are one of the side effects of tam and that’s why I decided not to go it. Best wishes
Leadie

Hi Elvi have read your post with great interest …i have been n Tamoxifen since nov 07 …my last period was August 08 i am almost 54 …Just recently I have been having a slight bloodstained discharge and what only can be described as period pains and lower back pain…dont want to call BCN as I think she thinks I am a hypochondriac…and the GP the same …called weel woman clinic my smear teat is not due until 2010 …should I be concerned

thanx Maz

Hi all

I was taking Tamoxifen in the late 90s and had spotting which worsened and worsened until it became a full blown haemorrhage in late 1999. Before that, GP kept on and on sending me for D & Cs. I had three, I think, before being admitted to hospital with the bleeding. They did a hysterectomy about a week later, where my womb was found to have swollen to twice it’s normal size, but importantly, even with my drastic symptoms, there was no sign of cancer.

I mention this as I think it’s better to get this kind of thing tackled sooner rather than later. In my case, they did do something more or less straight away - but it was the wrong thing, over and over again.

There’s no denying the good Tamoxifen does in terms of bc - but it can wreak havoc elsewhere in our bods…

X

S

Thanks to all for replying. I see the gynae at 4pm tomorrow. I don’t suppose he will be able to tell me what is wrong there and then, presumably I will need some sort of scan for that.

The helpline did say that tamox causes thickening of the womb lining in some women and that this could be the cause of spotting/bleeding. They said that, once in the menopause, we have no natural shedding mechanism to get rid of unwanted cells, like when we are still menstruating, so sometimes the extra cells from the thickening can occasionally shed themselves and show up as spotting/bleeding. Interestingly they also said that, as it is some time since my last period, the spotting could just be a side effect of having a hormone drug in my body, i.e. it does not have to be connected with a thickened womb lining. This is not something I have heard before.

Mazaroo I know what its like to get worked up about these things - I seem to have been in a permanenant state of anxiety for 18 months because of BC and all that goes with it. My natural tendency is to bury my head in the sand, but I know deep down that we have to face these problems and get them sorted. Please go and get it checked out - it doesn’t matter if your bcn thinks your a hypochondriac - and I bet she doesn’t - they are there to help. My fingers are crossed that it will all be ok for both of us.

Bahons - many thanks for describing your experiences. I think I have come across some other ladies on this site who have had various ‘gyny episodes’ on tamox and I think they all turned out ok. I’m still bl**dy scared though!

Love
Elvi

Hello Ladies,

thought i would update you after visit to gynae for those of you who might be going through something similar.

Had an internal examination (lovely!!) and gynae said everything felt normal. No lumps, bumps or enlarged bits, womb felt ‘small and mobile’ which is apparently how it should feel. Am to have pelvic ultrasound and hysteroscopy to bottom things out but he does not think it likely to be serious. Said that 14 months on tamox not really long enough for something ‘nasty’ to set in. He also ageed with the info I had from the BCC helpline, namely that if the lining does thicken, the cells may shed a bit from time to time and cause a bit of bleeding. He also said they can do these investigations in post menopausal women who have has some spotting and find no specific reasons for it. And that can happen whether on tamox or not! Obviously he needs to establish whether the lining is thickening or not, as that will need to be reported back to my Onc. So - my overall impression is - if you get any unexpected bleeding on tamox - get it checked out asap but don’t assume the worst - thats not the most likely explanation.

Best wishes to all
Elvi

Hi Elvi

Thanks for the update. I am going through something similar cysts and thickening of the lining of the womb.
Keep us posted
thanks
sukes

Hi all,
I have been taking Tamoxifen Nolvadex D since June 08. I have not had a period since Aug 07 as Chemo stopped them and they have not returned. Good to hear that I may not of been on it long enough to have a prob, but I have odd spotting occasionally and a CT scan said uterus was slightly bulky… whatever that is so I am going for a scan and then to see gynae for a check up. I am sure its nothing but would rather err on side of caution.
The tamoxifen/ is giving me hot flushes, and weight gain,poss achy ankles/ knees but they could be left from Chemo.
Oh the joys!!!
Keep intouch and I will let you know how I get on too.
Take care all
Lv
Dawn XX

Can I join you please? (Besides it increases the sample size on here which is always useful).

I’m 44 and pre-menopausal.

I’ve been on Nolvadex since Feb 09, periods stopped during chemo in Dec 08, nothing since then. My hot flushes stopped suddenly about 4 weeks ago and for the last week I’ve had horrid dk brown spotting. Went to GP who’s taken test to rule out any kind of infection first then will refer me to gynae if results negative. She also said it’s very unlikely to be anything sinister as I’ve only been on Tx for a few months, but like others, it seems Tx does thicken the endometrium and cause problems.

Not very nice (yet another one to add to the list of things that are wrong with me!) but I feel happier for having seen GP and getting ball rolling. Peace of mind is invaluable.

HTH, Bella x

I’m 38 and have been on Tamoxifen for 16 months. I have had a scan which shows bulky uterus, have had a tissue sample taken and internal examination, this also shows bulky uterus, I now have to have a hysteroscopy which will take 10-30 minutes, I am really worried.

Hi Star flower,
Just letting you know my results , Hope saves you worrying abit, I had a hysteroscopy after my thickening of my uterus etc and spotting as described above, all fine,
hope yours turns out the same as mine.
Take care
Dawn x

Hi, hope this will help
I had spotting and a discharge,After seeing the Gyno;
I had a Hysteroscopy and they found a polypus, which they removed.
Its 15 months since i had this done,and its started again,
Ive been to see the Gyno again, and hes taken me off Tamoxifen
[Which i have been on for 2 and a half years] and hes, now changed
me on to Arimidex, to see if the spotting stops,and i must say its
helped a lot,I go back to see him in July, and i just hope its all
clear by then
Regards to all

Hello there, after breast cancer last year I recently had a discharge that turned into a permanent period. I had an internal ultrqsound and they found a 1cm lump. I had it removed and the womb lump polyp/thing was not malignant and I go to the oncologist to discuss it properly on Friday morning, today. Polyps are very common side effect but of course we worry it will be the rare side effect - womb cancer. I am 38 so pre menopause, and already been through lots of tamoxifen’s side effects.
He will probably suggest that I switch from tamoxifen (as it probably caused it) to another tablet plus monthly injection to temporarily shut down my ovaries. I am bit anxious about that as I want to have kids soon, are there any choices other than switch, stay on tamoxifen or come off everything? Thanks if you have any ideas x