All the information I had when i was first diagnosed was well this will turn you menopausal, so I hadn't really bargained on not being! Before my periods came back I had occasional spotting and ended up having an ultrasound and D&C, which showed I had ovarian cysts but everything else was ok.
I really hope you get some answers today and you can put your mind at rest.
Hi, Susan, thanks for that, really nice to hear from someone who has been through it, too - it's just good to know I'm not the only one out there in this inbetween stage. I thought "post-menopausal" meant that I'm done, and no one told me the hormone level tests could be inconclusive, so I just assumed... It feels just like periods to me (what I can remember of them!), but of course on Tamoxifen, you worry about the side effects, and abnormal bleeding, like endometrial cancer. I have to say, I feel fine (just normal period crabby, mood swings, tired, etc) and don't even have the cramps I used to get. Well, I have an appointment with a gyn tomorrow to get the confirmation on the results of the ultrasound scan from a few weeks ago, so I can ask her some questions. I will be seriously angry if I am not menopausal now, and the oncologist hadn't indicated that it could change from time to time - grrr... I cancelled an appointment with the fertility clinic because of the devastating menopause news (I wasn't referred to a clinic when I was dx - guess they thought I was too old already at 40).
Sorry to hear about your migraines (I've had them - nasty, 6 hour things, nausea, etc, but never to do with periods). Wasn't it nice finally not having periods anymore??? Now to just deal with the sleeplessness and weight gain... I hope things get better for you. I can resign myself to having periods again every whenever, but I'd just like to know conclusively that I am okay. I have 2 more years on Tamoxifen, then who knows what will happen?
I'm 42, also was diagnosed just past 40 and had masectomy, chemo and rads and am now on tamoxifen. My periods stopped for about a year and then came back with a couple of very very heavy bleeds. They are now all over the place: 2 week cycle and 9 week cycle, sometimes light, sometimes normal. When I had the first period I had some hormonal tests done that showed I wasn't properly in menopause, but my oncologist was very dismissive of these: he said all it showed was what was happening at that point and when you're on tamoxifen one minute you could be classified as menopausal and the next, not. I have to say I was pretty fed up as I actually felt a lot better when I wasn't having periods and was fine with the whole menopausal thing (but then I'm weird as I'd been looking forward to it for years as I get menstrual migraines!!). I hope this helps.
Hi, Twinky, I wish I had an oncologist who could be a bit reassuring! Just wondering if anyone has been told that bleeding after menopause is "normal" or "just one of those things?" I've been waiting for someone to tell me this, but nothing so far. I was dx at just over 40, chemo, surgery, radiotherapy, and have just passed my 3-year mark on Tamoxifen (now 44). Had all the hormone tests in August 2011 to test my fertility levels, and oncologist said I am post-menopausal ("ovaries have shut down"). So, hard decisions, move on with my life, no kids ever, etc. Hadn't had a period since Dec. 2010, then, suddenly, bleeding in Feb. 2012, and now again yesterday. My recent smear test was fine. Had a ultrasound scan few weeks ago - shows nothing unusual. But everyone is treating this very seriously, and I would just like to know if this happens sometimes. Can I still have my period if I am menopausal? Or am I not menopausal and did the oncologist get it wrong? very very confused - and fed up. I thought I was done with all this, now it seems I'm back on the treadmill. Anyway, this is my first posting (hopefully not my last!) - I am struggling to find women my age to discuss this with (not 30 and still considering fertility treatment and how I might do this, and not 55-60 and have perhaps come to terms with menopause/gotten through it). Any other 40 somethings out there who have had similar experiences?
Don't panic Captain Mannering.....
Tamoxifen causes thickening of the womb and also messes up smear test results. Whilst it can cause cancer in long term use, they generally restrict our use of it to a max of 5 years to reduce this threat. I had sudden bleeding early last year. Turned out I had started (after 4 years) to react to the tamoxifen & had a womb lining 3x normal thickness & a polyp on my cervix. I also had a cyst on my left ovary but had one of those previous before I started chemo of tamoxifen ( they found one when I had eggs collected). Anyway, had an op to remove polyp, cyst & reduce womb thickening. All test results came back clear so try not to worry about sudden bleeding! I saw a gynaecologist privately & she worked closely with my oncologist & surgeon so she knew what she was dealing with & I have full confidence with her so am reassured by her findings.
Hope this helps you if you're worried
Hi all, LP here. i am 14 months post DX and have been on Tamx for 13 months, i have not had a period since just before starting it. On Weds this week out of the blue i was bleeding, it has got heavier over time. I phoned Dr for advice & she wasn't sure whether i should be having periods or not.I then called bcn & she told me it is normal to have bleeding, but when i told her i have pain very low down & also in my coccyx.
The Dr seems to think they might want to check the lining of my womb, i know i have a fibroid but my smear end of last year was clear.
I am so worried it may be cancer again as it seemed to be contained in my spine.
ANY ADVICE PLEASE from more brave ladies.I see my Oncologist on Weds 28th March.Sending much love x x
Just wondering if it is normal for your periods to return after only 3 weeks of stopping Tamoxifen.
I was 44 when diagnosed and my periods stopped completely after my 1st round of Chemo.That was almost 2yrs ago now.Came off Tamoxifen last year for a months break and my periods didn't come back.
I am due surgery next Wednesday and was told to stop taking the Tamoxifen 3wks ago, but I started my period this morning.Is this normal and has it happened to anyone else?
Hi - Reassuring to read all the posts! I decided to come off Tamoxifen last Sept. after 3 years. I'm 53 was peri-menopausal pre-treatment, then had just 2 periods 11 months apart after surgery, last one in 2010, so effectively menopausal now. Was surprised to be bleeding this morning and felt daft going to the doctor for what appears to be just a period (although I've had no pain). Have had a routine urgent referral for a scan and shall be happy if its just a one-off (please!).
I'm 46 and have been on tamoxifen for over a year. My periods stopped after my second chemo but returned again in August - light at first so I wasn't worried.
However, in December I had a much heavier one, then 3 weeks later another one. I mentioned this on my routine follow up appointment and have been referred to see a gynaecologist- (not got the appointment through yet). 2 weeks after my last period finished I have started again and this time it is really heavy. I can't keep up with the amount of blood coming out. Clearly something is not right- I am going to make an appointment at my GP to see if they can speed up the referral, but I'm really worried. I couldn't take the kids swimming this morning for fear of turning the swimming pool red!
I was 38 three days after my first chemo. My periods continued throughout treatment ( definitely not post menopausal as I had eggs harvested before I started chemo) although they told me that the chemo might put me through a menopause. They said the same when I started Tamoxifen but my periods continued. They only finally stopped in 2007 when I was fitted with a mirena coil. No periods from then until last Feb when I started bleeding again. Ended up seeing a gynaecologist and she found my womb lining 3 times the normal
thickness (due to Tamoxifen). At this point I had been on it for 4.5 years. Had a multi op to remove polyp from my uterus, cyst from my left ovary and clear out the womb lining. All the tests came back clear and she fitted a new coil. I then finished Tamoxifen at the end of Sept and found that my body became very hormonal again, moodiness and period pains and felt like body was trying to start periods again. I wish I was still on Tamoxifen...lol...don't get many posts on here saying that! Not sure what the plan is for me now but was DX with a recurrence in my reconstructed breast in Dec ( lump that was biopsied I found much earlier In the year so it wasn't my withdrawal from Tamoxifen that started it back off). Until I have had my MX and all the tissue is tested I remain in the dark about my treatment this time. Am sad as I was considering trying for a baby this summer after giving my body enough time to get over the Tamoxifen invasion).
Thanks Lily, saw GP yesterday and was examined and had smear. Got a call this morning that I had been urgently referred for scan which I'm having tomorrow, also meant to be seen in Oncology tomorrow. To say I'm scared is an understatement now 😞 Will let you know how I get on X.
Haven't been on here for ages but was interested to read this thread. I'm 3yrs post dx and at 47 was peri menopausal at dx, chemo stopped periods althogether then I had a year of Zoladex. Now 3yrs on I have had one day of bleeding with bad back cramps and more spots on my face than i had as a teenager! I am on Letrozole so know I need to check it out as I understand not effective if you are having periods. It was a schock to see blood after all this time, I had abnormal smears several years ago which was treated by loop wire and have been fine since. Now waiting for results of smear, a scan and oncology appointment....yep I'm worried all over again, it never ends!
just wanted to say i posted dec about tmmoxifen and bleeding and that i had to go and have a colposopy test . well i went this morning to new cross and had the colposcopy plus biopsy done i have results in three weeks.thanks lulu34 for the advice you gave me it did stop me worrying so much .the doctor said today that tamoxifen can do this to to the cells and that i would probaley need just monitoring and that the cells could go back normal themselves but i will know more when results come back thanks again missmessy
thank you so much for your reply you have put my mind at ease i have never had a bad smear test result before so i paniced.thanks i got a bit frightened i think we have all been through so much we think the worst,thank you lulu 34 missmessy
I switched from tamoxifen to Aromasin about a year ago after an ultrasound I had as part of the UKFOCSS study showed thickening of the endometrial lining. I didn't have any physical symptoms but felt happier switching. My GP then warned me that I might get some bleeding as a result of the switch, although as it turned out I didn't. She just wanted to warn me so that I didn't immediately assume the worst!
They do not normally refer you for colposcopy for borderline smear unless you have three borderline in a row. I'd imagine somebody is being a tad overcautious and you may find they don't actually do the biopsy if it all looks normal under the colposcope. Try not to worry about a borderline smear. This isn't cancer but the would normally want to do 6 monthly smears to keep an eye on it. It often resolves on it's own and more likely to have abnormal smears if your a smoker. There are 4 stages of pre cancerous changes the cervix and borderline is the mildest changes.
For borderline and cin1 also called mild dyskariosis you would normally only be monitored with six monthly smears. Its only if three were abnormal in a row that you are normally referred to colposcopy.
For cin 2 and 3 also called moderate or severe dyskariosis you are usually referred to colposcopy and may or may not need treatment and usually monitored by the colp unit for a few years.
They cannot tell you it was borderline if it was more serious so try not think they sent being honest as I can imagine this may be what your worrying about after a referral. And in a worse case scenario 95% of cervical cancers treated early are curable. I know there's no point saying don't worry but try not to worry too much as borderline smears are pretty common.
hi havent posted for a while but would like some info.i am on tamoxifen for 2 years which stopped my periods,had a bleed in october went to see nurse had a smear test results came back this week.results read abnormal cells in cervix borderline i have an appointment for january at the colposcopy clinic for tests and punch biopsy i am feeling anxious.iam 53 had right mx 2years ago followed by seromas i have lymphoedema in right arm.i have just had my 2year all clear breast screening but now have this worry has anybody gone through simalar problem.thanks missmessy
Hormone levels aren't a good indicator of hormonal function especially without a cycle.... They fluctuate on a daily basis and even with full periods certain days in your cycle would be consistent with ovarian failure... Always best to get it checked out however you should only be on AIs if you are def post menopausal or having zoladex to prevent your ovaries from working.
AIs rid your body of hormones so the ovaries work very hard trying to produce more if post menopausal unlikely to have bleeding but if pre or perimenopausal can meek them produce high levels of hormones and cause bleeding... They have been used as fertility treatment in premeno ladies.
I too ad bleeding on tamox.... Needed a hysteroscopy and d and c and got a mirena put in which helped loads. Some places are not too keen to use mirena but evidence suggests it can protect the uterus from tamox effects.
This is an interesting and very relevant post for me. I have just come off Tamoxifen after 3 1/2 years and moved onto Aromasin. I was definitely Peri-menopausal before chemo and after Chemo have not had a sniff of a bleed. A month ago I was having a strange clear ‘discharge’ nothing like I had experienced before and then a week ago I started having a bleed. I informed my BC nurse and have an appointment with the oncologist next week….but bizarrely I also have the results of the hormone test that I had been told to do with my GP ‘as routine’ from coming off Tamoxifen and the results have come back saying my hormone levels are in line with ‘ovarian failure’…which I take it means post-menopausal. I’m a bit freaked out and confused by what appears to me to a conflict! Has anyone else experienced this?
Hi Sussex Girl,
I'm in the same boat. I'm 46, this is yr3 on tx for me and I've an appt for my 2nd hysteroscopy next month after 2 more bleeds in Aug and Oct this year. One was horrendous, the other really light. Having mentioned it to my onc at my annual checkup last month he immediately referred me to gynae.
I had my 1st hysteroscopy exactly 2 years ago in my 1st yr on tx for exacly the same reason and it was fine, everything benign and no lumps or anything ammiss.
I think, as others have said, it's routine to refer you to gynae if you bleed on tx because it can (apparently) cause all sorts of problems and they like to check them out as soon as possible.
I don't think you say how old you are, but apparently (again - I'm no expert)if you're pre-men then it's possible to still have cycles but they're 'silent'. Occasionally hormonal wobbles cause break-through bleeding which materialises itself as a period. (I think this is what my onc said...)
So, try not to worry, they seem to do this as a matter of course, and hopefully everything will be OK.
Hi After 18 months on Tamoxifin the ongologist decided to change me to Arimadex and after a few months, I had a period my first for a year.I was sent for a scan internal and external and the arimidex were stopped straight away and I was put back on Tamoxifin. The results were ok, thank goodness,but it was a very worrying time. I am still on Tamoxifin with no further bleeding at present.I hope all keeps well with you.
hi, I had exactly the same thing, in fact the polyps was so large it had started to push out through the cervix (sounds horrendous!) but they removed it and biopsied it, and it was totally benign. `I think they can happen quite often.
Thanks for your posts. I saw a gynaecologist on Friday and the bleeding is due to a big polyp (4cm) in my uterus, caused by the tamoxifen. I'm glad I know what is going on. I'm having an op on 28th November to have the polyp removed, and a cyst and the ovary to which it is attached.
After they've biopsied it all they'll decide if going back on tamoxifen is advised or not.
I didn't know tamoxifen could cause polyps, but now I do!
Thanks for your support,
Hi Susie I did continue taking Tamoxifen..my periods stopped after my second round of chemo also RoadRunner..it was a total surprise when I did bleed again..but all is ok xx
My periods stopped in Aug 2007 on chemo. I started tamoxifen Oct 2007. Then out of the blue I had a period in Aug 2009. I was really worried about it, the GP gave me an urgent referral to investigate it which scared me even more, but now I know that this is standard procedure with any post menopausal bleeding. Nothing sinister was found, the bleeding was put down to the tamoxifen (as it can cause bleeding) but it has never happened again. I was never told to stop taking it.
Thanks for the reassurance scottdolly. I've been looking around the internet (as you do!) and am hopeful that it will be nothing serious. Did you continue taking the tamoxifen after the investigations?
Hi there I had some abnormal bleeding, it wasn't heavy but was investigated ..I was given a hysteroscopy and the results came back fine. I was told any abnormal bleeding is always checked out. I think they always air on the side of caution ESP when Tamoxifen is involved as it can cause some side effects. Try not to worry too much easy to say I know as I was worried sick. Take Care xxx
I've not been on the forum for months and months, but I've just had a visit to my oncologist today and I'm looking for more info - I wondered if any one on here could help?
I've been on tamoxifen for 14 months. Since then I've had a couple of light periods, but nothing much. 3 weeks ago a had another one after months of nothing, but it has carried on. It's really light, but the onc says as it's persistent he wants me to see a gynaecologist who will check to see if the lining of my uterus is swollen and if I've got polyps or anything else that might casue bleeding.
He's told me to stop taking tamox straight away.
Has anyone else had this? Is it a sign of something sinister? He said they may take me off tamox altogether, but as I had DCIS there is no alternative to take. This must have implications for the possibility of cancer returning?
Any comments welcome - reassuring or honestly blunt are fine!
Thank in advance