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Sudden heavy bleed on Tamoxifen
Sun, 01/01/2012 - 13:21
#1
Not the best start to the new year! My periods stopped after my second chemo almost two years ago and I haven't had even the slightest spotting since. I started bleeding last night and this morning it really is quite heavy and I've got some lower back pain. I don't want to bother my gp on new years day but I am a little worried. Could it simply be that after all this time my periods have just restarted? I would appreciate your thoughts xx
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Hello angel,
I'm not going to say 'try not to worry' - possibly the most annoying piece of advice we can hear.
I think the BCC helplines are back up just now?? If not have you thought about phoning up NHS direct just so you get a chance to talk about it. They can then set things in motion for you should they feel it needs checked out at hospital?
It certainly could be your periods returning. But you are obviously worrying and that's what needs dealt with.
Sorry I don't have much in the way of advice. Hopefully someone will come along who has a medical background or similar experience. I just didn't want to leave your post on its own.
Carolyn x
Hi,
cant help re your question about tamoxifen as havent started it yet but i am having the same thing on chemo.
was on the depo for a few years so didnt have any, then starty chemo and im having them every 10 days. strange and annoying xxx
Hi
It could be a case of things returning to normality, but you should ring up your Drs. When I started tamoxifen, i asked my onc if my periods would return and she said that if they did then i was to ring up and let them know so they could investigate the reasons why.
So just to err on the side of caution, if i was you, i would ring your Drs or your BC nurse giving them the facts.
xx
Hi JPAngel. My periods stopped after my 2nd chemo and like you I had a really heavy bleed whilst on tamoxifen. I had only got 3 months past chemo when my periods returned. I was advised to contact onc. Team of this happened. I am now having zoladex injections as well as tamoxifen. Zoladex to stop me producing oestrogen and am still taking tamoxifen . I was pre menopausal before chemo. I haven't had a period since I started zoladex in October. Give your onc team a call on Tues x x
Thanks ladies, it was a bit of a shock to say the least! At my last onc appointment we talked about switching to an aromatase inhibitor as I was "clearly post-menopausal now"! I will call them on Tuesday and in the meantime enjoy being "poorly" on the sofa with my books and chocolate! xx
My periods stopped after chemo number 5 abd 3 months after my final chemo I just got my period yesterday too!! Really heavy and painful - although am glad that it explains why I was feeling SO bloated and crampy. So Zoladex may be on the cards now, eh?! Alrighty... Was hoping 2012 would involve LESS needles and drugs! But hey, ho!
Must be something in the air at the moment. My periods stopped 2 years ago duting chemo and I have been on Tamoxifen for around 20 months now. Today I have started to bleed. It feels like a period and is very painful. I have been discharged from oncology so I guess I will have to get a GP appointment on Monday to get things checked. I kept saying that the best thing about chemo is the end of my periods - seems like I was wrong!!!!!
Hi Angel
I was pre meno at diagnosis in 2006. After 2nd chemo my periods stopped completely . I started Tamoxifen in June 2006 and then suddenly in 2009 I had a bleed! I was investigated and all OK. Since then I had bleesd about every 3 - 6 months. I have had 2 hysteroscopies and they sd it was either Tamoxifen or my periods back> I came off Tamoxifen in June 2011 after 5 years and I now have aperiod every 6 weeks so my Onc thinks the chemo stopped my ovaries for a few years but now they have restarted -albeit weakly as my blood hormone levels show me to be peri-menopausal.
Hope this help.
Love ALise
I have an appointment with my onc tomorrow. I got a second opinion who said I should be on Zoladex if my periods return which seems consistent with what some other ladies have said on other threads. My onc seems to think no additional benefit and potential for nasty SEs. Anyone else's onc not bothering with Zoladex...?
Sandytoes - I started Zoladex in December as my periods had continued while I was taking tamoxifen (I started tamoxifen back in June 2011). I still had a few during chemo, but when that was finished and I was on tamoxifen, i was having more than one a month. My oncologist basically left the decision on taking zoladex up to me - she said that if i was still having periods it would be advisable to take Zoladex as an extra precaution, but she realised that many people can't stand the side effects it has, so she would leave the final choice down to me.
I decided I'd give it a shot and if it was a nightmare at least I'd tried, and would still have tamoxifen to do its job. So far (only had 2), well, worse side effects than tamoxifen - major hot flushes and joint pain are the main ones. But I don't think that everyone will get that - and some people probably get those side effects from tamoxifen anyway (I didn't). There is quite a high risk of osteoporosis if you're on it long-term which is why you just do 2 years rather than 5. But I figure that risk is better than BC coming back. So far anyway!
Good luck with your appointment tomorrow.
Al x
Sandy toes,
I asked for the rationale to be explained to me twice as I couldn't get my head around why I needed zoladex to switch my ovaries off if the tamoxifen was blocking the effects of oestrogen anyway. My onc said there is some evidence to suggest that ladies whose periods did not return did better than those who periods did. She recommended I maximised the treatments in view of size of my cancer, LVI, node involvement. There is a trial ongoing where they are comparing the benefits of zoladex and tamoxifen versus tamoxifen only. However the results of the trial won't be available for 2 years so I'll find out in 2 years if the added zoladex has giving me any extra benefit. I started zoladex 2 months after I started tamoxifen so hard to know what se's are from what treatment. I was really disappointed when my periods returned as I felt like I was just getting back to normal and hated the thought of another treatment but it's not so bad. I have a few tropical moments in the day time and some night sweats but not as bad as the sweats I had on chemo. I think I will have some bone density tests at some point too as like Al said there's an increased risk of osteoporosis. Oh and my appetite is huge but that could be me being greedy. All the best for tomorrow xx
Totally agree! Had really bad hot flushes after chemo - DRIPPING with sweat (mmmmmm...nice!) but rather that than have this come back/spread. I've had no problems with Tamoxifen. It's just that my onc says there's no benefit. I know 2 other ladies being treated at my hospital by 2 other oncologists and they've been told the same by theirs. But then I got a second opinion from an onc on Harley ST who specialises in young women with breast cancer and he says there is a benefit. I might have to put my foot down with my onc (although find him a bit scary!) and say I want to try it. X
Hi Lisa,
Sorry - posted other message without seeing yours. Good to know you're not suffering TOO much from it but know what you mean about feeling back to normal and dreading adding extra side effects in.
Thanks so much for your Facebook messages too. Hope you're doing ok in general?
X
Hope your onc lets you do whichever option you want Sandytoes. Its your body after all. So I hope he isn't too scary tomorrow! Imagine he's sitting on the loo. Noone can be scary then! I've just realised you're on the fb page Lisa added me to as well. Hope you get some reassurance on that issue tomorrow too.
Al x
Hope you ladies don't mind me joining in here. I'm on Letrozole...3yrs post dx. Now 50 chemo and a year of Zoladex zapped periods, now have had a period with bad back cramping. It's not heavy, just there! Had a smear yesterday as had abnormal ones several years ago which were treated. Dr says neck of womb looks healthy to naked eye but need to have a scan to check thickness of womb and make sure nothing cancerous there..yikes!! Have Oncology appt tomorrow to see what they say and if I should be on Zoladex again. Trying to convince myself my body is hanging on to it's youth, but was schocked to see blood to be honest and now very worried. I hope that it is all turning out ok for you ladies with similar problems.
Hello Moonshine. I hope the oncologist was able to put your mind at ease.
Al and Lisa - had LOOOOONG appointment with onc going over all of these different trials, papers etc about Zoladex and Tamoxifen. He's still in the camp that it makes no difference to your prognosis and says it has a detrimental effect on your quality of life with the menopausal symptoms etc. However, he knows me well and knows that I want to do all I can to minimise my risk so agreed that I should try it as I would always wonder "what if" and curse myself if the cancer were to spread. So, hot flush central...here I come. I must say I wish that I could totally believe him re the long term prognosis as it's been SO nice not having hot flushes and feeling normal again BUT I've made choices such as a bilateral MX - so what are a few tropical moments compared to that... (remind me I said that when I'm back here in a couple of weeks having a right old moan...!).
Thanks girls. xx
Oh - and oncy wasn't concerned about the other thing. xx
That's good that he's letting you try it Sandytoes. Fingers crossed you don't get too many side effects. And I'm glad the other thing was ok too!
By the way, the injection is a lot easier with Emla cream beforehand, or at least that's what I found. I'm probably a bit of a wimp though! I've got my 1st annual mammo tomorrow and dreading that too!
Moonshine - I hope your oncology appointment went ok. Its hard not knowing what is causing bleeding - I thought my periods would stop on tamoxifen but they didn't. In fact, i've had one on Zoladex too, but I think that's just a wee blip at the beginning of treatment!
Al x
Hi,
Sandy toes- I think it's best to give it a go. Glad you got your onc to agree. Brilliant news about the other! So pleased for you. Scary though isn't it? I had a backache and onc said have a scan. It was at that point that I got really scared. I said I'd wait to see if it improved and like magic, it did. Must have been my hypochondria!
Al- I like the idea of imagining someone on the toilet. There's a certain someone II will apply that to.
Moonshine- good luck with your appointment today. I was upset when my periods returned.my boss said that she thought it was amazing and a sign of good health that after what my body had been through, it was returning to normal. I thought that was a nice way to look at it.
Am typing this on the tube so hope it sends when I get off.
Lisa xxxx
Ahh thank you all. Well Onc today thought it may be thickening of the womb lining but scan showed it to be normal and nothing else was picked up, so can only assume my body is trying to hang on to it's youth! They are putting me back on Zoladex so hopefully won't see any more of this. I do hope it all turns out well for everyone. Tracey x.
Moonshine,
this calls for a night out, don't you think? So so pleased for you
Lily x
Like we need an excuse to go out? haha Yes absoloutely just what I need lets do it and soon please. Back to docs today as thrush is driving me insane but as far as I know it won't kill me! See you soon x
Hi
Exactly the same thing happened to me. Had a really heavy period 18 months after chemo had stopped periods. That was 2 years ago and I havn't had a period since. Funny thing was that for that month I had no hot flushes, heaven!!
HI
I HAVE FINISHED TREATMENT BUT I HAVE HAD A COUPLE OF PERIODS AND THEY HAVE BEEN SO HEAVY I CAN BARELY LEAVE THE HOUSE,IS THERE ANYTHING THAT THE DOCTOR CAN DO TO RECTIFY THIS THANKS XXXX
BonnieLass,
My periods returned a year after they stopped during chemo. I have now had 3 since November and the first 2 were also so heavy I could not leave the house. The last one I had however was really light and I'm so hoping that will be it. I spoke to my neighbour, who's a doctor, and she said very definitely there are things you can do. I can't quite remember what she said, but do talk to someone about it. I also just wanted to say you might want to get your iron levels checked as I ended up quite anaemic (and I know I wasn't before).
Really hope you get something sorted,
Susanx
Hello girls,
Just caught back up with this thread. Funny how everyone's ONC is different. Zoladex has never been offered as part of my treatment, only on Tamoxifen! (I know I should be happy about that lol) just wondering why it is so different all other things being equal.
Bye Carolyn x
You can have my zoladex if you want Carolyn. Its cr*p! Al x
Hi all
I'm on Tamoxifen plus Zoladex which is not great in terms of SEs. After it was recommended by my onc I discovered that the NICE guidelines say that the T + Z combination should only be offered to women who've been offered chemo and turned it down, it's not offered as an option up front, which in my opinion stinks since it means that we don't get all the options explained in advance.
I went for a 2nd opinion on the oncologist and the other one said she wouldn't have even mentioned chemo and wouldn't have bothered with the Zoladex either, which illustrates just how much medical opinion can differ for the same patient.
Since I was 50 at Dx I was told I'd have to do 2 years of T + Z, then come off the Z and have blood tests to check if I'm post-meno, and only after I've had 2 or 3 consecutive ones that agree I'm post-meno then I'll be switched to aromatase inhibitors.
If those let me get a decent night's sleep I'll be delighted. I'm so fed up - and exhausted - with the broken sleep caused by my present treatment.