72K members
1.2M posts
cancel
Showing results for 
Search instead for 
Did you mean: 

return of periods after 5yrs of tamoxifen

25 REPLIES 25
Nanny
Member

Re: return of periods after 5yrs of tamoxifen

See gp get a scan and biopsy done hopefully just a reaction from the drugs xx
Nanny
Member

Re: return of periods after 5yrs of tamoxifen

Hi ladies I'm a fourteen months after stopping tamoxifen, had a bleed had scan biopsys no cancer thicken lining small cyst on ovary, scan again in September, just finished a 13 day heavy bleed, it's not nice after 6 years no periods going through the change and feel back to square one, will have an hysterectomy I think but the thought of another menopause fills me with despair but in a positive note no cancer again, just go with the motions again, worst bit waiting took three weeks for biosopy results xx
Georgina hennigan
Member

Re: return of periods after 5yrs of tamoxifen

Hi my name is Georgina I'm 42 I was diagnosed with breast cancer 4 years ago I had no chemo but I had a lumpectomy radio for three weeks and zoledex injections every three months over 2 years today I started having a period and I was just wondering if this is normal I haven't had a period for at least 3 years and because my cancer was musicinious carcinoma is it dangerous
contrarymary
Member

Re: 6 yrs on

Me again.

 

Haven't (yet) seen GP but have appointment.  Have spoken to bc nurse at hospital, so I'm armed with what I should ask for when I see my GP.  It is possible I have endometrial hypertrophy (which could be as a result of being on tamoxifen), which seems to be borne out by my symptoms as I'm now into my 4th week of continuous bleed... I will ask my GP for a referral to a gynaecologist for a transvaginal ultrasound, plus ask for bloods to see if I'm perimenopausal (likely at my age).  I'm reassured that my risk factor for a recurrence is unlikely to be affected by recent events.

 

What I would say, though, is if you are getting any abnormal bleeding, absolutely get on to both your bc nurse team and your GP, don't put it off.

contrarymary
Member

Re: 6 yrs on

Hi there

 

Sorry, I've no answers either... just more questions... how typical is this experience?

 

I'm 50, and stopped taking tamoxifen early April 2015 after 5+ years.  I declined taking it for longer on the basis that the protective effect would only be about 2.5% - a decision supported by my consultant at the time.

 

Original dx was April 2009, had surgery and radiotherapy, and started taking tamoxifen October 2009... last period (heaviest ever at that point) was August 2012 - so tamoxifen took just shy of 3 years to stop my periods.

 

Fast-forward to January 2016 - less than ... got what I suspected were pre-menstrual symptoms and then on 10th January... period starts.  At the time of writing it is ongoing.  4-days of severe (30mins with super+ tampons + towels) flooding (sorry, tmi) over the first weekend.  Thought I was done yesterday - cue more flooding - tomorrow will see me start week 4.

 

Now more than a little concerned as this seems excessive, and was the calculation of my low risk of not continuing tamoxifen on the assumption that the menopause tamoxifen had put me into was permanent?  I was extremely hormone positive at dx, so do wonder if my risk has now shot back up to a higher level.

 

Cannot imagine enduring another month like this one on a regular basis, as I'm working and travelling.

 

Should have called gp and bc nurse before now - but will crack on and do that on Monday.

 

Once I've got more info, will report back to see if it helps anyone else experiencing periods post-tamoxifen.

Lizzy_BCC
Member

Re: 6 yrs on

Hi Lics_lady, 

 

I am sorry you are going through this anxious time. I have moved your post to this busy thread and I am sure our users will be showing their support very soon and answering your questions about coming off tamoxifen.

 

In the meantime if you would like to talk you can always call our support line at 0808 800 6000  who will be able to talk to you about not being on tamoxifen and offer a friendly ear.

 

Best wishes, 

 

Lizzy 

 

Digital Community Assistant 

lincs_lady
Member

6 yrs on

Hi all
I didn't know where to post lol
I finished tamoxifen last yr having not had a period since 2nd chemo in 2009. I'm now 49 and for the last 3 months have suffered with bad cramps and a little spotting once a month sore boobs the works . This week I had a full on period not v heavy but bad cramps for a week
I got conflicting advice last summer when taken off tam
Consultant said the risks of more tam were worse than stopping for me and any bleeding might mean still too much oestrogen I was in a grey area as menopause cos of tam but bloods said not really into it
Bc nurse said many ladies my age go back to periods until normal menopause time
I don't understand how they spend 5 yrs blocking my hormones cos cancer feeds on it and then it dosn't matter??
am ringing bc nurse again on Monday
Thankyou xx

Gillian22
Member

Re: return of periods after 5yrs of tamoxifen

Hi Lainey,

I am 46 next month.

Diagnosis was Dec 2009, op was Jan 2010 (lumpectomy), then chemotherapy,  radiotherapy and five years on tamoxifen which I finished in July last year. I had my first period in approx 5 yrs just a couple of weeks ago. This was a bit crampy..more so than I remembered,  but then I guess that would be typical after not gaving a period for so long. It was possibly a bit heavier than before, but it was tailing off after 2-3 days and finished after 4 days.  I'd say this was within range of normal.  I don't know at this stage whether I will have any more, just the occasional one or even whether there are implications and further risks if the oestrogen is regulating things again...I was told by a gynaecologist a couple of yrs ago that the periods may return and it was nothing to worry about providing it wasn't spotting or excessively heavy or continuous. I just wonder now my periods have returned whether I'm as protected from any recurrence. I don't want a hysterectomy that's for sure. Any advice?

 

Gillian. 

Maxine
Member

Re: return of periods after 5yrs of tamoxifen

I've had exactly the same, finished tamoxifen in February and in September had a hideous period and 4 weeks later started another one, as if my monthly cycle has come back. 

I am concerned as no period since chemo in 2008. I have had a womb scan and biopsy, awaiting results although they did say I have thickening of the womb and its 50/50 if it's cancerous cells. 

 

Guest user
Not applicable

Re: return of periods after 5yrs of tamoxifen

I had periods throughout the time I took tamoxifen and I am still having them aged 52. I had a mirena coil fitted which has lightened the flow but I am finding that my periods are extremely irregular now so I may go down the hysterectomy route. I will have to have the latest mirena removed as like the last one the strings have disappeared. I have a strange uterus which is backward facing so I think this is to blame. Otherwise I'd recommend the mirena as a way of reducing heavy periods. I used to use the most super plus plus lillets and still had problems

Mole

Guest user
Not applicable

Re: return of periods after 5yrs of tamoxifen

Hi Bottychelly
do you mean you periods were 14,21 and 28 days apart or do you mean that they lasted for 14,21, and 28 days at a time?
I have been bleeding soildly for 12 full days and it was heavy, super plus tampax and a nightime always ultra pad.
I went back to see my "female" doc this tues after work.
She was much better than than male doc.
She gave me Norethisterone tablets 5mg three times a day to take to stop the bleeding. and hey it has stopped . can't believe it. But I'm a bit worried about what is going on with the blood now as my stomach feels tender and as if its going to explode. Taking strong painkillers
She is going to examine me tomorrow after work to see if she can feel anything abnormal
Getting bloods done next wed by nurse
Hopefully i might be referred for a scan
If any of you have been therewit this situation I would appreciate any comments
The thing I have been panicking about is if i have womb cancer
MY mother had fibroids in her 30's and had hysterectomy but I used to have light 5 day periods until I got breast cancer just over 5 yrs ago
Stressed out Lainey

Guest user
Not applicable

Re: return of periods after 5yrs of tamoxifen

Hi Lainey

When I stopped taking tamoxifen (admitedly after only 1 year - I was the b*tch from hell!) I had the heaviest periods I've ever known. They were at odd times too. sometimes 21 days, sometimes 14 once 28 days over a period of about 4 months and then all of a sudden, they went back to what they'd been like pre-cancer.

Keep checking in with your doc, or your onc team, or your bc nurse, for support, peace of mind and to make sure they keep an eye on you!

Hang in there, it does get better - honest.

Bottychelly (a 'new girl' to the forums)

vezza
Member

Re: return of periods after 5yrs of tamoxifen

Girls, I am 37yrs and my periods stopped during chemo (havent had one since Xmas). I though that period could return up until a year later and after that time it would probably mean you were infertile. I am really confused now - do I have to be on 'stand by' forever ? my onc told me to let him know if periods did return, then it is Zoladex for me.

Vez xx

Guest user
Not applicable

Re: return of periods after 5yrs of tamoxifen

Thanks Joe for your commens and advice. I know I have been going on about the period but it was a shock to me after all this time and it is the length of time of the period that was concerning me.
I am very grateful that yo asked your nursing team and that they think it sounds normal.
In this situation it is the best advice that I am getting
I feel very comforted
Thank you so much
Lainey xx

Moderator
Community Manager

Re: return of periods after 5yrs of tamoxifen

Hi lainey

I'm sorry to hear you are having such a miserable time. I have asked our nursing team who say that what is happening to you is not unusual. They tell me you are correct to go to the GP, as making sure you are monitored in this situation is the best thing to do.

Best wishes
Joe
Moderator
Breast Cancer Care

Guest user
Not applicable

Re: return of periods after 5yrs of tamoxifen

Hi alison and rowena
went to docs today . He looked confused and referred to his book to read up om tamoxifen . Said it was probably normal but would write to my breast cancer consultant about my situation then changed his mind and said he would ring the breast care nurse as she wold have seen a lot of similar cases. He said he will ring me at work next week, But said if I hear nothing by end of week ring him and remind him. MY mother keeps telling me to move to her docs surgery where there is a lot of good docs. I think i will now. There was only one decent doc at my surgery but they got rid of him because he was very thorough and cost the practice too much money.
He is the doc that saved my life 5yrs ago with an early referral for bc
I am eternally grateful to him but he works in another practice out of my area
Will be glad when bleeding stops . Its been 8 full days now. I am taking iron tablets to help me as i feel washed out.
I am looking after my 5yr old grand daughter tonight so that takes my mind off things.
lainey x x x

Guest user
Not applicable

Re: return of periods after 5yrs of tamoxifen

Hi Rowena, were your periods regular before you started taking tamoxifen?

Alison xxx

Guest user
Not applicable

Re: return of periods after 5yrs of tamoxifen

Hi Lainey,
Sorry, I wasn't very clear. I have just taken Tamoxifen for 2 yrs and I have another 3 yrs to go. I haven't had a period since I started it.
Good luck with your GP appt.
Rowena

Guest user
Not applicable

Re: return of periods after 5yrs of tamoxifen

Hi Lainey, my surgery took 9 hours, but that included the masectomy as well as the muscle being taken from my back, and only the one surgeon working on me, yes you do have to be careful with lifting, but whats a few months when it can make a real difference to how you feel as a woman for the rest of your life? as for work, well not sure if i will return or not, i'm just trying to keep myself on an even keel at the moment (was only diagnosed on the 6th of june this year) but i really do feel that i made the right choice. mine was all done on the nhs, as i put, diagnosed on the 6th of june, lymphs taken out on the 15th of june, masectomy and recon on the 29th of june, then some skin removal on the 10th of july, so all very quick, and yes, like you i am scared of them finding anything else, and i don't imagine that fear ever really goes away. we go through so much don't we?

lots of love

Alison xxxxxx

Guest user
Not applicable

Re: return of periods after 5yrs of tamoxifen

Hi alison
glad your recon went well . Do you know how long you were in theatre. Did you go private or nhs.
How long will it be till you can be back to normal, work etc I've heard you have to be careful lifting things for a while .
Will visit docs tomorrow. I hate going because i'm always scared they will find something bad again. I had bowel and womb examinations at hospital while taking tamoxifen . Both were ok . Just hope still ok .
Will kepp you posted tomorrow.
Love lainey xxx

Guest user
Not applicable

Re: return of periods after 5yrs of tamoxifen

Hi Lainey, i think if you really want a recon go for it, i met up with a lady who had a masectomy and immediate back flap recon then lost the lot due to complications, that was just over two weeks before i had exactly the same op, ok, its only just over five weeks ago, but i am so glad i had it done, still have to have a nipple made and some tattooing, also, cos i've been a smoker i lost some skin, but they sorted that out. at the end of the day, we have to do whats best for ourselves and thats what i've done, do see your onc about the periods coming back, its really not fair to have to go through the menopause twice. will let you know when i get to see the gyni, should be soon i hope, me and tamoxifen don't get along too well!!!!! (and i've only been on it for a month, and am having the period from hell!!!!

lots of love

Alison xxx

Guest user
Not applicable

Re: return of periods after 5yrs of tamoxifen

Hi rowena
thanks for your advice but
do you mean you have been taking tamoxifen for 2 years and are still taking tamoxifen or do you mean that you took it for five years, and 2 years later you have never had a period?
Thanks
Lainey xxx

Guest user
Not applicable

Re: return of periods after 5yrs of tamoxifen

Hi alison . yes my treatment was finished in april after i took the tamoxifen for 5 years.
I did have hot sweats at first but that eased off. My main problen was that i put on ust over 2 stone in weight. However about 18 months ago I started eating more healthy and calorie counting and doing Rosemary Conley salsa dvd. I am down to 8stone 8lbs insted of 10 stone. I feel much better and it has given me more confidence. I do feel fitter as I am only 5"4" . My only problem now is the worry of a long heavy period. I think I will ask my gp's opinion tomorrow. I would like to have breast recon in the future . I have had lots of appointments with the consultant for this but i keep bottling out and postponing it as I am scared of re-opening the wound that healed and going through all the pain again. Also I am very woried about getting mrsa or the op going wrong. I wear tops that don't shoe your cleavage.
I wish I could be brave and get it done but i have read some bad expriences of things going wrong.
Please let me know what your gyni says about your ovary removal op.
Lainey x x x

Guest user
Not applicable

Re: return of periods after 5yrs of tamoxifen

Hi Lainey,
I think you should make an appt to see your GP. It might well be your periods coming back after stopping Tamoxifen - but I think if you haven't had a period for such a long time they might want to do some tests.
I've been on Tamoxifen and period free for 2 years (I'm 40). I think if I started to bleed now I would definetely get it checked out.
Best wishes,
Rowena

Guest user
Not applicable

Re: return of periods after 5yrs of tamoxifen

Hi Lainey, like you i am on tamoxifen, but i only started it a month ago, i am nearly 45yrs old, i was not happy about the prospect of having this drug and the possibility of going through the menopause twice, i voiced my concerns to my onc, and am now waiting to see a gyni about having my ovaries removed, is that the end of your treatment Lainey?

Alison xx

Guest user
Not applicable

return of periods after 5yrs of tamoxifen

Hi everyone, this is my first post.
I was diagnosed with breast cancer in apr 2002 and had a mastectomy and have just finished 5 years of tamoxifen .
I finished the tamoxifen this april just gone.
I have felt ok but while i was on holiday last week in Scarborough I have restarted my periods. It is Thursday today and I have been bleeding since last Thursday night. The period is still heavy and I am worried.
I am 48 now
I rang the breast care nurse at the hospital who said i am still relatively young and that it was normal to get periods again and not to worry. I was still having regular periods when i was diagnosed in 2002 but the periods stopped for the 5 years that i took the tamoxifen
Can anyone who has experienced similar let me know what you did about it
Thanks
Lainey