Tors - Not great timing is it!
I was about to turn 46 when diagnosed and pre-menopausal. I'd had a hysterectomy so no periods but had had blood test prior to diagnosis for other health reasons to check hormone levels.
Post chemo I was definitely menopausal for a whole 18 months. My surgeon was convinced that was it and that I should be switched from tamoxifen to an aromotase inhibitor. My Mum didn't have menopause until late fifties so I had a sneaking suspicion that my ovaries might kick back in. My Onc also didn't see it as clear cut and so they agreed I could have bloods checked every 6 months.
Sure enough 18 months later showed that my ovaries had once again kicked in - oestrogen levels had risen and FSH etc not indicating menopause at all anymore.
Here I am now at 48 and still not in menopause and still on tamoxifen. My oestrogen levels aren't that high though now so probably more like peri menopausal which I think can go on for years before actual menopause.
My tumour was 8/8 ER+ and 8/8 PR+ and I did query the need for zoladex or oophrectomy and told that tamoxifen was sufficient.
Ha, that's so typical! Mine returned unexpectedly the morning I was going into my children's school to make 80 pancakes!
My oncologist said he doesn't want me to have zoladex injections now as I am just 2 years out from initial dx, plus only vaguely oestrogen positive at 4/8, so the risks would outweigh the benefits. I think it would have been more of a discussion and grey area if I'd have been more oestrogen positive or they had come back more quickly after my treatment.
I have a tip for getting periods to return - book a romantic weekend away!! My Periods stopped in July, mid chemo, no hint of one since. Got up last month to go on my first break away since diagnosis last April to discover my period had started- lasted 3 days , the duration of my romantic break then stopped - wonderful!!
I am also only vaguely hormone positive, 4/8 I think, and was expecting oncologist to suggest the zolidex but he was happy to leave them because I'm only a bit hormone positive and he didnt think it was worth the possible side effects of the zolidex. I was quite happy with that as didnt fancy taking anything else, already on the tamoxifen.
Oh this is useful. i don't post on here much now but stumbled in as 3 days ago I awoke to find I had a period and thought it really odd, given my situation.
I'm 47 and not had a period since first chemo in April 2010, so almost 2 years ago. I was pre-meno at dx, had 8 FEC-T (4+4) and a year of Herceptin infusions.
Am ER neg so no treatment implications.
Kinda odd, given my age. Plus have had several blood tests to check FSH etc, all showing I was producing less oestrogen than a man.
I know I'm a little late (excuse the pun!) in joining this thread - but just wanted to let some of the ladies know that there is hope.
I was 30 at dx (no fmaily but was/is def in my plans)- and periods stopped after 1st chemo treatment, they didn't return at all throughout chemo and 17 herceptin, or indeed months after I finished treatment. By 18 month post dx I was assuming the worst and preparing myself for no children.
Due to the side effects I was getting on tamoxifen, my onc agreed to let me have a break - and YAY - my periods returned after 8 weeks! I now remember what a pain periods are - but what a relief to know that BC did not take that away from me along with everything else!
To recap....my periods stopped mid chemo, during summer 2010, and i am coming up now to 2years post dx, I had assumed they had gone forever and my oncologist had said they were probably not going to return now. But today, 18 months after my periods stopped, I awoke to my first post chemo period!
I am pretty surprised. I'm not sure how I feel. Part of me is well chuffed as I hated thinking of myself as post menopausal at 38, and it's a plus towards fertility of course. The other bit of me is wondering what it means treatment wise, as I am 'vaguely' ER +ve at 4/8, and I don't fancy zoladex or ovaries being removed.
And I also had to make a mad dash to Tesco this morning as I was totally unprepared, and today has made me remember exactly why periods are such a pain!
Just thought I'd update the thread for people using it as a resource.
Anybody else who would like to share their experiences please do so as I think it's really useful to have a lot of experiences on a specific matter grouped together in one easy access place for ladies who follow after us.
Im stage 4- age 32 at dx. Had periods throughout fec + tax but missed a few cycles after my 2nd tax but came on just 3months after! Also regular through out a course of 6 carboplatin + now I'm bak on chemo again, they are still going strong! So after 14 chemos, no sign of chemically induced menopause 4me. Think I've got the most resiliant menstrual cycle on the planet. Lucky me...
Im 42, I've just had my 3rd FEC today and im still menstruating like clockwork every 28 days, in fact I came on just yesterday, bang on 28 days from the 1st day of my last one.
My periods are usually heavy as I have a copper IUD fitted and last month was no different except I had horrendous period pains (I rarely have pains) and my back was terribly painful and I had to take ibruprofen.
This month Im having a few twinges so far and Ive noted lots of little clots which is a bit different.
Just goes to show how different we all are really. I wouldnt mind my periods stopping. Im fully intending to speak to my onc about ovarian removal later down the line as im ER +.
I had 3 fec and 3 tax finishing in Oct 2010. I was 38 at dx.
Last period was August 2010 and they have just returned- so that is about 16 months. Did have a little bit of spotting a couple of months ago but it didnt turn into anything. Anyway this seems more like a normal period so far.
I did notice that my flushes had died off so maybe things were starting up again. Anyway am not er+ so will have to chat to onc re the future, but want my ovaries out anyway for genetic reasons.
What a delightful christmas pressie for myself... not
We have the worst of all worlds,period symptoms one week then menopausal ones the next!!!!
that bloody cancer has alot to answer for 😉
You're welcome Claire.
Mandy, your experience sounds really similar to mine, though I am on tamoxifen and had assumed that was causing it. I can feel really premenstrual at one stage then really menopausal at another. I've just started tracking it all to see if there's a discernible pattern. I expected my periods back as I was clockwork before and am pretty surprised they are still AWOL.
Thanks for bumping this Tors. Quite interesting reading, have a good idea what to expect or not expect now.
I was diagnosed jUNE 2nd 2009 aged 36,started chemo 25th June.I had 4 x FEC and then 4 x Taxotere and i still havent started my periods.My periods before were regular as clockwork. i get the symptoms every now and then of period pains and sudden low mood but no period. When i dont have period pains i have menopause symptoms of hot flushes and night sweats!
Not sure if they will ever start again but i live in hope as i have no children ;-(
Oh and i am triple negative so no hormone treatment.
I finished my chemo last January. After the first chemo I became pregnant. I did abort and continue ny treatment. During chemo my perids have been stoped. They come back with tamoxifen and zoladex.I am 8 months on zoladex and tamoxifen, but periods still are with me. What I can to say in our situation the best is to stop with periods at all. If we wanted to live longer with out recurrence. But every women wants to be mother and it is so hard for young womens...to decide between...
1. How old you were at dx?
2. Were your periods regular or not before?
Regular, every 28 days like clockwork!
3. What chemo you had, if any?
6 cycles FEC-T (3 of each, 3 weeks apart)
4. If/when your periods stopped?
First chemo as I was injected with Zoladex first to shut down my ovaries in the hope of protecting them from the chemo.
5. If you had hormone therapy and/or the injections to keep your periods away?
Not applicable - triple negative
6. If/ when your periods came back, and if they are regular now?
They came back 6 months after chemo and are approximately every 21 days but getting closer together sometimes which I'm not a fan of!
You must be very surprised Tina - understand why that could rattle you. I've been period free since 2nd chemo - at 48 now and don't expect them back - maybe the couple of years between us makes all the difference. I do remember one conversation with my oncologist who said he didn't expect them to come back but he wouldn't be the slightest bit concerned if they did.
Thanks Elinda! I am sure it's ok, just didn't expect it to kick back in after such an absence! Best Wishes to you.x
HI Tina, my understanding is that tamoxifen has no effect on ovulation or periods. I don't think its an indicator at all it isn't working. My Onc, surgeon and GP are all well aware I'm ovulating (seen via blood tests as I've had a hysterectomy). ER+ 8/8, PR+ 8/8
What it does mean is that tamoxifen is the right drug for you as opposed to an aromatase inhibitor which is only for postmenopausal women.
Hi Elinda, yes, same age as you at dx jan2010 (lobular as well) and onc said 50/50 chance periods would return. I thought that with chemo+tamoxifen they would have ceased permanently. Worried now that tamoxifen may not be working..... ER+ 4/8
Tina, in women who were premenopausal before starting treatment, chemo can put you just into a temporary menopause.
I was 45 when I started treatment and I was told that I would be put into permanent menopause becuase of my age. I wasn't. I started ovulating again 18 months later.
Presumably you are now on tamoxifen if you had an ER+ cancer? Elinda x
Extremely shocked to find that I have regular cycles again after they had stopped half way through chemo in June 2010. What is going on??
Oh, as an update, my periods seem to have taken a permanent leave of absence. Am now 14 months after chemo finished.
Yes, following chemo my periods did return becoming quite regular after some months all over the place and despite hormone treatment - I was only 40 and had had very regular periods up till then - but for me it was maybe not a good sign as I then had a recurrence - and now they have been stopped completely by a mixture of zoladex injections and letrazole tablets. Feel that's a bit grim to post - sorry!
My take though was fairly positive - glad that they did return and the gunk from the time of chemo wasn't sat in there but had flowed out... I thought it was my body doing its best to re-balance itself. Unfortunately in my case I wasn't able to find a happy medium with oestrogene but that's very individual.
I'd recommend seeing a Maya Abdominal therapist (arvigotheray.com) for these sorts of things - they specialise in massage for wombs/abdomens and are very caring and holistic... which makes for a good change after treatment full stop.
Thanks Jane, that's really interesting. My onc did say that some form of ovarian ablation was always considered the norm on er+ bc, but that lately the view had swung the other way, in as much as they now thought it didn't make much difference. However, she remains open minded on it, and made it clear that she was open to discussion about the options available - as before I'd even had chemo I'd said that I didn't want my periods to return - I'm lucky in that my family is complete (4 kids, it's actually kind of over complete!!), and I wasn't keen on the idea of continuing to pump out oestregen for the forseeable future - as I'm 42, so it could be a few years yet.
I don't actually have another onc. appointment until next July (!) - and won't see my consultant til January, but think I might just give the bcn a call - it could be that my gp could step in here.
It's one of those occasions where you realise how individualised treatment plans are, depending not only on your personal dx, but on your oncologist's personal view.. which is a little daunting sometimes! Hey ho, at least bc has taught me that life is too short to take prisoners... shy, retiring, moi? Nope, not any longer.. off to battle I go...oh damn. Bank holiday weekend... isn't that always the way!!!!
After my periods returned on tamoxifen, my onc said if I wanted to do everything I could to help prevent recurrence, I should go onto Zoladex (shuts down ovaries and can be taken for 2 years) and consider ovary removal in the long term.
I'm almost due my second injection. The last month has been difficult as I've been hormonally all over the place with two migranes and various headaches, but I'm really happy to be taking it. I have had one period since I started, but that's because my cycle was already halfway through with the first injection. I do feel a sense of protection - not only are my oestrogen levels now greatly reduced by the Zoladex, but any left over should be kept away from the cancer cells by Tamoxifen. I'd recommend giving it a go. If you don't like the first month, you don't have to go back for more.
Mine returned with a vengeance only a couple of months after finishing chemo - gutted! The first was appalling, but they have resumed normal service now, no different to before. I am 8/8 er+, so on tamoxifen, and I had a long chat with my onc about what to do if they should return. Interestingly, a lot of us believe that tamoxifen stops the body producing oestregen, hence the menopause, but it doesn't actually 'stop' it - it just prevents the oestregen binding to cells - so stopping periods is not actually a cert. My onc reckoned that if your periods stopped during chemo, that was a 'good thing'.. but had warned me all along that they may well return, and whether or not they disappeared again was a bit 'lap of the gods'.
She did also say that if I found it very distressing, then there were steps that could be taken to stop them - injections, or ultimately, having my ovaries removed. At the moment, though, I've had enough of hospitals, so I shall just persevere. If they'd stayed as heavy as the first one though.. that would be a different matter.. I'd have camped outside her office until she sorted me out!
Good luck with the radiotherapy Jo.
I mentioned my returning period to my GP, she wasn't overly concerned but is referring me for a pelvic ultrasound just to make sure everything looks okay. Anyone else had one of these?
I was diagnosed at 41, periods were normal beforehand, I have had 6 x EC chemo (last one 3 weeks ago), I'm triple neg so no further drugs for me to take. My last period was back in April (just after 1st chem) and I havent had any since. I'm not sure if they'll return or not. I have two children so count myself lucky to have them, a 6 year old and a 8 month old. To the lady who mentioned cancer with children, my god, it is hard my little one was 6 weeks old when I was diagnosed and our lives were thrown into utter turmoil. I didn't want anything to do with my baby for a day or two as I talked myself into thinking the more he loved me and the more I loved him it would be harder for him when I wasn't around - but thankfully the negative thoughts aren't as prominent now! you still get them, everyone must when they get this life changing diagnosis but you have to get on with life! Most days I feel absolutely knackered but I just look at my two kids and fight another day! start radiotherapy this week so expecting to feel even more tired! Jo x
I don't think having periods mean that tamoxifen is not working. I know my oncologist wanted me to stay period free for two years post diagnosis. I think there is a body of research which shows this can be beneficial as the ovaries do produce oestrogen. That said my surgeon consultant did not agree and would have been happy for my periods to return as and when after chemo. I decided to go with the oncologist and went on zoladex after I got a period 10 months post chemo. Now 7 months post zoladex and still no periods, just stomach and back aches on and off, would love to know what the he'll my body is doing!!
I have a almost 4 year old. Pre BC I always wanted two children but feel I should be grateful to have one and still be alive to see her grow up, so for now at least I am putting my efforts into her. Still, I am sad not to be having another baby, especially when all my friends are onto baby number 2.
I was diagnosed last year aged 32.
Chemo May-Oct (4xEC, 4xTax)
Herceptin started mid chemo and have just had my last one a couple of weeks ago.
Tamoxifen started Dec
I had my last period in Aug so a full year ago. I have to say I have not missed them at all! However this morning I have noticed a very small amount of bleeding and I am feeling what feels like mild period pains in my pelvis and lower back. I am wondering if this is going to turn into my periods returning, or if it is just a little random thing that will go away again.
Jane I am concerned that your onc said he hoped it wouldn't happen, does that mean that periods returning is a bad thing? I assume periods = oestrogen, so do periods mean the tamoxifen isn't doing its job? And if my periods do return, should I be telling someone at the hospital?
If it matters, I don't care about future fertility, I just want the best possible chance of no more BC!
This is my first post on here and just trying out how it all works really. Really nice to see this discussion taking place as its something I've been wondering about since finishing chemo and all I kept being told is evrything will return to normal don't worry and not been given anything more than that. I was diagnosed last August at 32 with grade 3 hormone neg tumour after having my baby in April. She was 17 weeks old. Complete devastation. Obviously one of the first questions we asked was about furture fertility and here as I said the general consensus was everything would return to normal and we would likely have no probs having more children. I'm now 7 months post chemo and wondering when this is likely to be. Have the hot flushes like a trooper and regularly could give my 15 month old a run for her money in the boo hoos.
Obviously I assumed in blind panic that my hot flushes meant I was going through menopause but have now eventually accepted that this may be a temporary state of affairs.
So not sure how helpful I'm being but definately feel better reading some of your stories and see I have a way to go yet.
Also generally how the hell is everyone else doing this with young children?? Its just not possible and my poor hubby is knackered with working then being thrown a baby as soon as he comes through the door so I can slope off to bed.
Anyhow looking forward to reading some more...
Don't know how much I can help really but wanted to sympathise. I've been on tamoxifen for 6 months and am 2 weeks into first Zoladex implant.
My periods came back after chemotherapy (which is why I'm now on Zoladex) and, like you feel, I knew it was coming. I've tracked ovulation both for contraception and conception so am very aware of all the signs too, and had an extremely painful ovulation just under two weeks before the period. It woke me up in the night it hurt so much, I had swollen lymphs in my groin etc. So I wasn't surprised when I came on.
The mood swings on Zoladex are AWFUL! Oh god, I'm a woman possessed and do I have any patience for a baby and a three year old?? NO!! I want to roar at everyone.
I hope your body starts itself out soon. xxx Jane
Hi is anyone who posted earlier in this thread still about?
I am 7 months post stopping Zoladex and still on tamoxifen. Had hormone levels checked last month. Showed Oestrogen still in post menopause range but LH and FSH also low, not consistent with being post menopausal. Have been told the brain hormones are trying to get the ovaries working but he expects the zoladex is still effecting me. I'm 32 years old.
For the last 4 months I have had terrible mood swings to the level that sometimes I feel I just want to book a flight out of here leaving my child and husband. I have pelvic discomfort like I am about to come on. Hot flushes are bad some days and not others, like wise the mood swings, some weeks I feel quite stable other weeks I feel like I will self destruct.It seems cyclical but with no noticeable pattern.
Recently in the last couple of weeks I have had what seem like the kind of stomach ache you get the day before you have a period. I also have noticed some stabbing like twinges in my surviving breast, I have lower back ache on and off with some twinges in my hips, and a feeling in my groin, like a throbbing. The only way I can describe it is like your knicker elastic is too tight. I swear the veins on the tops of my legs are more prominent. I feel like I need to have a period but still nothing happening! I am so frustrated as now I have this back ache/ hip ache I am worried that it could be secondaries, but at the same time I know low oestrogen can be responsible for lower back ache, like wise, if my periods are trying to come back and my ovaries are starting to work again all these symptoms could be the increased activity in this area.
I am very in touch with my body, especially now, but before breast cancer I always felt ovulation. My friends can't believe I have noticed all these symptoms, but then they have not had breast cancer.
Can anyone tell me if they had any similar or the same symptoms in the run up to their periods returning after they were on Zoladex or after chemo?
I am not desperate for my periods to return, just want to feel normal again. I can live with the PMT feelings but only when you know it is there for a reason.
Blimey you been through it and at such a young age (of course I'm so old at 32 years!).
I saw my consultant last week and my oestrogen levels were post menopausal and but my FSH and LH (the brain hormones) were not in the post menopausal range. He said they were difficult to decipher what was going on but he suspected the zoladex was still in my system and it would be a matter of time before a period of some sort returned. When I got home I looked up my blood test levels and it seems the oestrogen is very low but my FSH and LH are what would be expected for a 32 year old.
I do feel a little better that the tests have confirmed I am quite imbalanced at the moment. I am pretty sure my brain hormones are trying to get my ovaries to work but for either tamoxifen or zoladex reasons they have not got there yet. I am just trying to enjoy life without periods as I know they are not going to be pleasant or predictable when they come back.
Zee are you having treatment in Mauritius? Your first breast cancer was it hormone negative? I am wondering why you were not on tamoxifen after the first diagnosis? How often have you had mammograms or ultra sounds since the first diagnosis? Not that luck is a word I like to use but second time round they have caught it very early. I worry about my right breast and wonder if I should have it off.
Glad you have found the forums here, they are a great source of info and support. Don't know if you have posted elsewhere as I am replying to your post late, I have not been on here for a week or so as we have been on holiday.
I just joined and this is my first post on the forums, so please bear with me. 🙂 I'm Zee and I'm from Mauritius. I was looking for online resources (mostly for a book I'm writing) and came across this site.
So to answer Vickie's questions:
1. How old you were at dx?
First time in left breast (Stage 3 lump), I was 22 and had a radical mastectomy, no reconstruction, 6 cycles chemo and 5-weeks radiation.
Second time, last year (and 5 years after the first diagnosis), lump in right breast, Stage Zero. Went for a mastectomy again, no reconstruction (so now I'm really flat as an ironing board!) and 5 weeks radiation. Oestrogen-positive this second time so now I'm on Tamoxifen
2. Were your periods regular or not before?
My periods never stopped during chemo or after. But with the Tamoxifen, I started it in january, it's been a sort of hit and miss of every other month, and when I do get them I bleed all out and that's a total mess!
3. What chemo you had, if any?
I had very intensive ones. I know I had 5-FU and other drugs, one of them that red-orange one that the colour alone makes you want to puke your guts out! 🙂
4. If/when your periods stopped?
Not with chemo, but it did with Tamoxifen.
5. If you had hormone therapy and/or the injections to keep your periods away?
I wear a coil - had a Mirena before, but now I've gone for the copper-T.
6. If/ when your periods came back, and if they are regular now?
In hit and miss zone right now, beacuse of Tamoxifen.
And Boo - I feel the PMT too. It's like you're all cranky and waiting for something to happen but then it doesn't and you feel like you're going nuts (My poor husband has a lot on his plate with me atm!).
But those hot flushes! Awful. I feel like Ghostrider hallf the time, with my face on fire. Night sweats - don't mention, and the periodic insomnia too.
I haven't yet had a hormone test but meeting my consultant next week so she'll prolly send me for that then.
And FYI, I'm 28 now. 🙂
Hi everyone, further to my post at the start of this thread. My periods have not returned as yet since I came off Zoladex in January. I have to say I expected them to come back before now as I had a period 10 months after they stopped on chemo, despite being on tamoxifen. They then put me on Zoladex so I would be without periods for 2 years after treatment, hence why I came off the Zoladex. I have to say the hot flushes are far more bearable since I came off the Zoladex. What is strange is some weeks they are hardly noticable in the day and other weeks they come back with a vengence. I also feel really hormonal at times like I need to have a period. I also feel like my ovaries are trying to do something at times or I have a mild period like stomach ache. The intense PMT feeling goes for a while then comes back.
I am due to see my consultant next week and I am keen to know what my hormone levels are doing. I notice my blood test form is only to measure Oestradiol. I am wondering why he does not want to look at the other hormone levels like progesterone, FSH, LH, as surely this would give an indication as to whether my periods are trying to return or not.
I would like to know if anyone is in a similar position to me, and whether you feel like you have PMT on and off (without the periods!). I also would welcome any information/ advice on what other younger women have measured hormone wise in their routine blood tests.
Thanks Boo x
NIM41 - love the profile pic! Can't wait to hit the slopes again one day. Nothing like a snowy mountain to put the world into perspective. x
Hi Vickie and all
Funny you should ask - I'm about 5 months post last chemo, been taking Tamoxifen for 4 months and last night, period seems to be returning. This is the first one since before I got pregnant in March 2010.
Onc said he hoped it wouldn't happen but if it did, he'd consider Zoladex first and see how I coped with - effectively - no ovaries, then take them out.
Oh joy, looks like I have further delights to look forward to! I must say that I thought the menopause had been rather too easy - other than hot flushes for a couple of months I haven't had any SEs at all. Well, the odd dizzy-spell. Seems that my ovaries are being defiantly persistent.
Vickie, my onc told me that periods can return 12-18 months after chemo.
I haven't had a period since around April time last year, just before surgery in May. My chemo finished in October and I am 40. I am seeing my ONC next month but I have a feeling he will tell me the same, that they probably won't come back now. I do remember him saying that if you are under 40 they may still come back but if you are approaching 40 or over 40 then they probably won't.
Anybody else able to contribute? My periods still haven't returned, they stopped last june/july so nearly 12 months since last period. My oncologist told me they are unlikely to return after this long now, but that some do still.
Vickie, you know my story re periods... had coil removed when chemo finished and periods started almost immediately....
Just wanted to say that even if your periods stop, it does not mean that you are no longer fertile! Tamoxifen increases fertility!
Would recommend that anyone concerned speaks to their GP or Oncologist.
i havent even started my chemo yet but for me i carnt want for my periods to stop (painfull every month not fun ) but seeing as i want a break from them wots the betting mine wont stop
Mine continued as normal all throughout chemo (i was 30), it was only about 4 months after starting Tamoxifen that they stopped for a while, but they are back now.
ive not had a period since starting FEC in Nov 2009. I am on tamox, was er + and am 43 now.