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
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
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
Posted twice…!
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
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.
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.
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.
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
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
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
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
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.
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
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 .
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 ?
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.
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?
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!!!
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