Hello everyone. I would think that as long as the endometrium is checked regularly, it is fine. I didn't have my ovaries removed in the end, I have occasionally periods or period pains, but my endometrium is less thick than it was when I had my first bleeding last April. I have no medical knowledge, so really cannot say what causes this. I can only repeat what the gynae told me, which is that the tamoxifen interacts with the hormones produced by my body causing changes in the endometrium. I too thought I had had menopause, as my periods stopped during chemo and I had hot flushes, but I noticed that I have all the hormones back. Bad I guess as my bc was hormone-fed...
I don't think ther eis a universal answer, as every medical history will determine the risks and benefits of tamoxifen etc. Just be positive, and get checked regularly! It is scary, but better than leaving it until too late. xxx
thanks danielafedric and revcat.... it's difficult to know what to do for the best sometimes when the experts give conflicting advice, at least now with your information i can discuss what options i might have whereas before it was just accepting what i was told i'm armed with a bit more knowledge now. thanks ladies x
hello ladies, as I started this thread a way back when, I still have my acocunt set up to get notifications even though I hardly ever drop here nowadays.
I am sorry you've had to join in with me, and I hope that you soon get some resolution. It really does seem to vary a lot from person to person what the consultants think is the best path and why. I am still waiting for local gynae lot to get their act together (long and boring story I won't waste time on here) but I do trust my breast surgeon who oversees my care.
Options he laid out were:
He did not mention surgical options though I know from other conversations they can include:
Most people affected in this will, so I am told, only have one episode of bleeding and a benign cause. I've had two episodes with polyps removed, and have had one and a half (some spotting) more whilst waiting for my gynae lot to get organised following breast team referral last October (back on blower today!)
Hope you find a solution that works for you and that you stay healthy and well. I probably won't be back on here for a while but will get notifications of updates or your can always PM me if you think I might have anyhting useful to add.
shazza bazza, I made up my mind due to family history, but perhaps you should follow the gynaecologist's advice? There seems to be a lot going on for you... my gynaecologist said that if I have my ovaries removed, then no more hormones produced by them, no more ingeraction with tamoxifen and therefore the womb will be safe, although, she added, it doesn't mean she can exclude I'd get endometrial cancer further down the line... (that's the way they say things, I suppose to prevent people from suing them?), and this is a private consultant...
But then again, she wanted me to have a ct scan, when ultrasound would be the first thing to do, and everyone else has had ultrasound to begin with ...
i had a hysteroscopy in sept due to the thickening of the lining of the womb,they removed 2 polyps but were unable to remove 2 more at that time ( i think there must be some sort of party going on down there) so i'm due to go again in june, The advice given to me was that the benefits of tamoxifen outway the negatives but they will continue to monitor it, should i be thinking more about other options?
Anyone decided to have the womb removed? My gynaecologist suggested I had my ovaries removed as I got a period, I went for an ultrasound and my endometrium is thicker and "ondulated" (?) - but I do not want to be prodded and poked any more, I didn't even know I was going to get periods again and do not want to live with the fear of endometrial cancer (which was what my mother died of)...
Not sure anyone other than Lulu is reading this thread anymore, but just to note I had an excellent conversation with my BCN and breast surgeon today about all this and we have a 'plan' to help me make an informed decision on what next.
The ideal is to stay on Tamoxifen but surgeon would be happy for gynae people to use a mirena coil to protect my uterus (kinda makes me laugh as contraception has never been necessary given my nunnish lifestyle!) so he is going to get them to come up with thoughts in that regard. Apparently guidelines would be tend to suggest staying with Tamoxifen until age 55 (if the move to ten years rather than five becomes guidelines, otherwise I'd continue with it to 53 which is the end of five years) which would be a long time to live with this.
The alternative would be to switch to an AI and have zoladex with the option of reverting to Tamoxifen if that proved unbearable. Nurse hinted strongly that this was not a path she would advocate as the combined SEs of the two could be a whole lot worse than Tamoxifen.
Am happy that steps are being taken to help me make an informed choice, and there seems to be consensus that a third bleed, should it happen would signal the need to do something else.
Thanks Lulu, always good to get your expert knowledge. 🙂
I was told by the gynae Dr if I hadn't heard after three weeks to phone them - so I did.
Overall the news is good, but it raises questions for me.
The two polyps were benign so that is good news. However they were 'consistent with Tamoxifen induced effects' which I think means some form of conversation needs to be had
The endometrial sample was 'insufficient' which presumably means it will need to be repeated
I am due to see my BCN next week about my lymphoedema, so I will raise this with her then. I do not want to stop taking Tamoxifen but I do want someone to do something about this recurrent side effect.
Bless you Lulu, for being the amazing person you are.
I don't know if family history counts on this? My Mum had a hysterectomy (cervical cancer) at 54 and was not yet meno and my grandmother (her mother) reached meno at 59! Don't know about my Dad's side. Gynae man was a big vague when I asked him saying 'possibly' when I asked if late meno tended to run in families. Anyway, will speak to my breast team as and when.
Sending you hugs m'dear xx
So quick report after hysteroscopy and biopsoeis today -
Two polyps one about 1.5 cm and one about 1cm I think (he showed me with finger and thumb but didn't have my glasses on so couldn't see properly!) both smooth and he is "not expecting anything sinister" results in about three weeks. When I asked if I just have to put up with this if it happens again he basically said 'yes' unless it is sinister and then said Tamox benefits outweigh risks... my question wasn't 'should I keep taking Tamox' that's a no-brainer with my stats, it was 'can't you fix the bleeding'. So when I next see my breast team I will ask them what options there are. If they want to keep me on Tamox for 10 years rather than 5 do not want to be doing this every 9-12 months!
Will update when I know more
Letter with date for gynae arrived this morning - 17th Sept. Three years to the date from my first chemo... some kind of appropriate circularity there!
i'm 49. ive had irregular periods all my life until this mirena coil and always had problems. I had zoladex and it stopped everything but simulates the menopause ie. hot flushes and mood swings. I asked my onc about the coil and tbh she didnt really commit, she didnt seem that sure what to do with it, its only because my macmillan nurse assured me that a lot of ladies keep it in that i didnt worry too much.
Maybe the tamoxifen will be ok, i can only wait and find out cant I ?
Hi Angiepops, sounds like have well and truly been through the mill one way and another.
I don't know about endometriosis so I can't answer any questions about how Tamoxifen might or might not effect it. My understanding is that often if you have ER+ and PR+ breast cancer they don't like you have mirena coils (but could be wrong, I've never had any kind of coil) so may be worth checking with your oncologist when you start on the Tamoxifen.
Most women will not have issues with Tamoxifen causing the wall of their womb to thicken (which it maybe would also do to endometrial cells outside the uterus?) so most likely you wouldn't have any problems. I'm not sure how old you are, but before chemo my periods were more-or-less text-book regular (albeit not at 28 days) and chemo stopped them after the second cycle. I was told by my oncologist that at my age (47 at diagnosis) it was very unlikely they'd start again, and that I should report any bleeding or spotting to my GP. Over the three years since dx, I have had bits and bobs of period-like pain and mid-cycle-type pain which I am told is 'nothing unusual' but no periods; just these two bouts of bleeding.
As far as I can ascertain, there are a number of options that may be open to you...
Some younger/pre-menopausal women are given zoladex to 'put their ovaries to sleep', which may well be suitable for you. Some have Tamoxifen, others may have Aromatase Inhibitors, but I don't know exactly how they decide which.
Some higher risk women, or women with repeated episodes of bleeding, have a hysterectomy and bilateral salpingoopherectomy (BSO) where they take out ovaries and tubes as well as the womb. This is major surgery, so not an option to pursue 'lightly.'
Probably the best thing to do is speak to your oncologist and your gynaecologist, if you have one, and try to get them to work together a bit. Sometimes it seems that it is up to us to ensure these 'less common' interfaces get covered as well as possible.
That's a very long reply which may not help at all - hopefully your Tamoxifen experience will be trouble free and really successful.
how interesting this thread is.
i'll give you a bit of my story - about 5 years of endymetriosis and i think 3 laparoscopies, had mefenemic acid which was ok for a while, had leisions cut out one time, the endimitrium was latching onto various parts of my innards (was very painful), they did an ultrasound another time which showed two 'lumps' on my ovaries that they did not investigate even though it worried me sick - i was convinced i had ovarian cancer and i was going to die. Then i had zoladex for four months which helped a lot to slow down the flow and ease the pain. Then i had the mirena coil put in under anaesthetic which was still giving me grief when i was diagmosed with BC this feb. (its ok now though, seems to have settled in - or maybe its the chemo? who knows?) So because the coil is progesterone they let it stay, i'm oestrogen + and due to go on tamoxifen after rads in a few weeks i expect.
Shall i expect the endymetriosis to pick up again?
I had ct scan for BC and they told me i had 2 cysts on my ovaries (the 'lumps' no doubt)
Since end of chemo 4 weeks ago ive started to get the twinges that i used to get before signalling an episode, same left side but as of yet no bleeding.
After all this treatment for BC, i dont want to start getting prodded and poked again, what am i looking for in your opinion? Its like waiting for a bus! Tamoxifen, will it make me bleed heavy again?
Thanks in advance, you all seem very knowledgable
I had a D&C last Nov (2012) when they also removed a polyp, so pretty much know what to expect. At the time was no atypia so they didn't do any follow-up. This time have asked them to copy in breast team with results as don't want to be doing this every year!!
Lulu know things tough for you just now, so sending catkin hugs your way xxx
AllyP hope things are going well for you xx
Update for anyone who might be reading this old thread!
Gynae clinic today - TVU showed thickening of endometrium and three white spots which are 'something' that needs to be looked at. Attempts at taking biopsies failed (three goes before she gave up) so am now referred for urgent day case under GA for hysteroscopy, biopsies and D&C.
Will update when there is anything to report.
A quick update in case anyone is following this thread... I have an urgent referral to a 'one stop' gynae clinic for 28th August 2013 from which I should leave with an explanation/diagnosis and/or treatment plan.
Anyone who has bleeding or spotting on Tamoxifen or AIs do get it checked out - it's probably nothing but it is defintely something.