Hiya i was diagnosed at 32 and now over a year later I am still having regular periods. I had WLE, chemo and rads. They never stopped through chemo and i have been on tamoxifen for 7mths.
Now is this somethin as an oestrogen postive lady be worried about? I have no side effects at all from tamox and only got brief hot flushes during chemo.
My ONC said my periods will stop but so far they are bang on time every month.
thanks!!
S
hi there, I have been on tamoxifen for over a year and my periods are more regular than they have ever been!!!
Carol xx
Perhaps its worth pushing your onc for zoladex. I was automatically put on zoladex and tamox when i was dx age 34. I know all hosps are different but with periods comes oestrogen…
I am no expert at all, but this does sound concerning. I know many ladies here seem to have had their ovaries removed if the chemo didn’t put them into menopause - maybe this is something you could ask about?
Hi evie,
This is a bit tricky. My own experience: Last year on chemo, period stopped after the 2nd session. When chemo finished, was put on Tamoxifen and period came back, also had new lumps to indicate things wasn’t quite right. Onc sent me for scans and found progression, so Tamoxifen didn’t work for me. I’m now on another chemo (just finished No. 4) and period hasn’t stopped. Onc said it should, but it’s been coming every 3 weeks!!! Tumour Marker test does indicate chemo is likely to be working, but not sure, so will have a scan to double check.
Onc said period alone won’t decide whether it’s working or not, so my advice is get it checked if you are not sure. Maybe we’re worried about nothing, but good to put our mind at rest.
I’m 25 and strongly ER+ and PR+. Have secondaries, so a little bit different with your situation.
xx
Oestrogen production from the ovaries is only an issue if you are on AIs.
Tamoxifen does NOT stop you producing oestrogen. It is a SERM - a selective oestrogen receptor modulator. It is a drug that acts like oestrogen on some tissues but blocks the effect of oestrogen on other tissues. It acts against oestrogen in breast tisue but not in other areas of the body.
Having regular periods is no indication that Tamoxifen is not working. Nor is “chemo-pause” a compulsory part of cancer treatment.
I thought that having periods meant oestrogen was coming from your ovaries, yes hopefully the tamox will block it, but surely better to stop the main source of oestrogen in the first place, by zoladex or oophorectomy?
Yes if you are having periods it means you are producing oestrogen. But oestrogen is only a problem if it is connecting with the breast cancer cells - and that is what Tamoxifen prevents happening.
Oestrogen is not just produced by ovaries - it comes from adipose tissue (fat) and major organs like the kidneys. Switching off the ovaries won’t stop oestrogen being produced in your body - that is where Aromatase Inhibitors like Arimidex come in.
Tamoxifen is an amazing drug precisely because you don’t have to shut down the ovaries in order for it to work - it isn’t necessary to shunt women into menopause unnecessarily which can cause other problems like osteoporosis.
Tamoxifen works by attaching itself to the oestrogen receptors on cancer cells. These cells need the oestrogen in order to function - the Tamoxifen stops them getting it and they can no longer divide and will ultimately die.
I think some oncs are a bit “belt and braces” and will use Zoladex for a while if they feel they need to be more aggressive with treatment. But in a nutshell having periods is not a sign that Tamoxifen isn’t working.
So then i dont see why some oncs give zoladex with tamox?
Thankyou ladies
My ONC said that the rise and fall of oestrogen levels is what can contribute to reoccurance so this worries me. She felt that my periods would peter out over time but i honestly dont think my body at 33 is interested in stopping trying to reproduce!
I am not sure why some ONC’s with young women instantly put them on zolodex if their periods return or recommend an oophrectomy. Mine said Tamoxifen was better than an ooph because it is so good at moping up the oestrogen.
I only worry reading posts on here of women my age having all sorts thrown at them.
X
Ms Molly is absolutely right. If you are still having periods then the very best thing you can do is have tamoxifen. My periods stopped for a long while during chemo but have come back. There is another drug that is more effective once your periods have definitely stopped (arimidex maybe?) but if there’s any doubt you are better off on tamox. Having an oophorectomy can bring dramatic menopausal changes which can be quite difficult to live with, and as Molly says, you will still be producing oestrogen in your fat cells anyway, so it’s not a simple matter of ‘switching it off’.
I don’t know much about zoladex…
Hope this helps
Jx
As I said some oncs are “belt and braces” about it - they want to be more aggressive with the treatment - perhaps in women whose prognosis is not great. All oncs are different in how they tackle things. I had my ovaries removed because at the time of diagnosis I was having problems with pain. My onc was actually very displeased that they had been removed because it has now exacerbated my osteoporosis problem and also has removed one weapon from the armoury should I get a recurrence.
Evie
your periods would maybe have petered out on chemo but think they’re less inclined to do so on tamox so if the chemo didnt wipe them out i really doubt anything would.
women whos periods stop from chemo may take a while to come back if at all but this usually affects older women.
if your onc or surgeon are overly worried about your periods continuing they can offer zoladex injections which basically put your ovaries to sleep.
but having periods doesnt mean your more likely to get cancer, although for some strongly Er receptive tumours some cons would prefer your ovaries to stop producing oestrogen hence they give the zoladex.
at 32 i doubt any gynaecologist would be in a hurray to remove your ovaries… this is something they would normally do around 40 if they were going to offer it and like the other girls say that can bring its own side effects and risks.
you can request to speak to a gynaecologist for more info without proceeding to have anything serious carried out.
Lxx
Hi Evie
Mine did stop on chemotherapy, (I was 36) but have just started again 2 years later. I’m on tamoxifen too, 100% ER+, and PR+.
It was mentioned to me that if this happened I may be given zoladex as well, so I was expecting this, but I had a discussion recently with the onc who leads the clinic- she said she was perfectly happy for me to stay on tamoxifen, said this was the best course of action and that there were no proven benefits to having both, and wouldn’t consider zoladex or an ooph until the 5 years is up.
I know other women have had different advice and onc’s have different opinions,and I was concerned prior to the appointment, but she did reassure me.
Lulu-can I just ask in your experience when an onc would be more likely to think that zoladex in addition to tamox was the best option for ER+ tumours? Is it just down to different experience and opinions or is there a set of circumstances that would prompt that action? Sorry if this is too much to ask, its just I’ve tried asking before at apppointments, but come away realising I didn’t quite ask the right questions!
thanks
C x
Not everyone metabolises Tamoxifen well - it is a grey area and oncs know it which is why they sometimes feel the need to knock out the ovaries with Zoaldex too if risk of recurrence is regarded as being significant.
The Americans routinely test to see if women can metabolise Tamoxifen well (and therefore get maximum benefit from it) - it is the CYP2D6 test. We don’t do it here.
Thanks for that msmolly-that explains the coded answers at times and the lack of consensus. I have faith in my team, but do like to know what the decisions are based on.
The scary truth is that so much of this treatment is guesswork - and trial and error. They just chuck everything at it and hope that something sticks.
was just reading this post and just wanted to thank msmolly for explaining the actions of tamoxifen so much better than any of my treatment providers!
i too am on tamoxifen, have been since dec 09. no side effects, no problems, and periods regular as clockwork…
Hi all!
No, you’re not alone evie! Chemo didn’t stop my periods and am still as regular as ever on Tamoxifen. No-one seems worried, and as Mrs Molly says, tamoxifen should just mop up the oestrogen!
Al
xxx
i think its maybe not so simple as treatment being guesswork as all treatment should be research based, however some doctors arent as up to date as others with the research… some research isnt well written and dependable but other docs may just believe in every written word (most dont as they are taught how to read research as are nurses) but some health professionals seem to ‘forget’ what the evidence actually is.
eg when i was having rads i was told no creams… no aqueous cream nothing… when i asked why i was told it may increasing burning… but i questioned them as i knew research had taken place at my hosp and it proved that there was no difference between using aqueous cream or no cream… but psychologically some women do prefer to use aqueous cream… what the research was trying to do was emphasise that oil based creams could increase the intensity of rads… so instead of say no oil based creams they just said no creams.
i do think there needs to be more nationalised guidelines so that everybody is using the best most up to date, research based evidence so we all get treated fairly and equally regardless of which unit you attend.
also research is ongoing and new treatments are always being developed too so things are always changing in healthcare… and what may seem an unlikely treatment or investigation today may be the norm in 5 or 10 years.
but some treatments are just profoundly brilliant like tamoxifen and herceptin which are both certainly wonder drugs of the last century.
sorry for going off topic Lxx 