I have been on 20mg Tamoxifen for roughly eighteen months now, and in August had, what my GP called, a ‘post menopausal bleed’ as it was the first since chemo knocked everything out in October 2010. Prior to that I was nowhere near menopause, and my family history suggests late menopause anyway (I am now 49, was 47 when I began treatment).
This week I had an outpatient gynae appointment with transvaginal ultrasound which showed endometrial hyperplasia (thickening of the womb lining) which is ‘almost certainly caused by the Tamoxifen’. I am now on a waiting list for hysterscopy and biopsies (as a day procedure under general anaesthetic) to confim exactly what is going on.
Having read sensible websites, such as CRUK, MacMillan and the NHS one, there seem to be two treatment paths if this is confirmed… use of progestogen, either topically or with an IUD, or surgery, which is usually a bilateral salpingoopherectomy (i.e womb, tubes and ovaries all removed). Because my cancer was PR+ as well as ER+ I am a little apprehensive about putting more hormones into my body, and would want to discuss this with an oncologist rather than just the gynae team. At the same time the alternative is major surgery.
Obviously I don’t yet know what they will find or recommend, but I would be interested to hear from anyone who has been in a similar situation, and if you were given a choice, how you reached your decision.
Because of my reccurence risk, there is no way I will stop taking Tamoxifen unless the oncologists advise it. I understand that if I go the surgical route, I might be switched to Aromatase Inhibitors instead - does that echo anyone’s experience?
Hi Revcat,
Although I dont have the same challenges as you, I thought that hearing my experience might widen your knowledge of the management of post menopausal bleeds and their treatment. I am sure you have sent me some helpful and encouraging replies and want to return the favour.
I was diagnosed with triple negative b/c in 2009, BRCA1 mutation in 2011, further triple negative bc in 2012. My periosd stopped during my first lot of chemo. As I was 40, was told there was a slim chance of them returning. Had some spotting in the Autumn 0f 2010, but in 2011 suffered from the most terrible bleeding. To cut a long strory short suffered from what was mortifyingly described as flooding. I can honestly say it was awful and made my life a misery for about 5 months. I became anaemic and exhausted. Took anti-coagulants and they did nothing. Went down the route you are going down (ie hysteroscopy, biopsies and womb lining thickening). Even though I have a triple negative bc, no-one keen on hormonal treatments though in the end, did have oral progesterone for a bit… Finally, I had a mirena coil (which does have progesterone in it) which changed my life. It is wonderful.
So, essentially I suffered similar problem, but not related to tamoxifen. I cant offer anything helpful re. the dilemma of a coil with progesterone given your pr+, but in my case, was advised that it was localised, not systemic. I discussed this with gynae and onc at some length. All concerned were very careful in considering risks even though I had a triple negative b/c.
I know you are very knowledgeable, but question: if you were to have your ovaries out, could you not then stop taking tamoxifen? (brac1 women are being offered tamoxifen instead of having ovaries out to reduce risk of b/c- I know its complicated, but it is suspected that there is still a link-would this then stop the symptoms you are experiencing? I have a friend who did this as she needed to stop taking tamoxifen. She did not need a hysterectomy and just (!) had her ovaries out.
Anyway, know this is not exactly the kind of reply you were probably hoping for, but hope it helps a bit.
In the meantime, do hope you are not suffering too much.
Rattles x
Thank you Rattles, that is really helpful and thank you for taking the time to make such a detailed reply. It sounds like your experience was way, way worse than mine. It is very reassuring to hear that the oncs and gynae people consulted over treatment - I’m sure my lot are very experienced in all of this, it’s just the way cancer messes with our heads that’s the problem. I will check about the Tamoxifen vs ovaries thing… that’s something I didn’t know.
I hope that you are keeping well and that your own treatment is effective.
Hi i had breast cancer the first time at 47 my periods stopped as soon as i started tamoxifen,4 yrs on i had a period like you i had a transvaginal utrasoud and showed a thinkning,i had a general anasthetic to find out what was going on,i was realy worrid,the rusult that tamoxifen had caused this and every thing was ok,i finished my 5 yrs on tamoxifen and had one yr clear and may this yr have cancer in other breast,my aunty who had breast cancer took tamoxifen for 12 yrs, I would have like to stay on it as i felt safe and i wonder if this new cancer in my other breast would not happend,hope it all goes well for you,take care,sharon
Has Zoladex been mentioned at all? I am on it to induce menopause in the hope that I can be transferred from Tamoxifen onto AIs in a couple of years time. (I was 51 on dx and still pre-menopausal) Zoladex was only offered to me AFTER I refused chemo - others have reported the same. It acts on the pituitary gland and reduces the production of oestrogen - whereas, from my understanding, Tamoxifen just reacts with the oestrogen present to stop cancer cells developing.
[macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/Hormonaltherapies/Individualhormonaltherapies/GoserelinBreast.aspx
I know of zoladex, but as yet no-one has actually said anything one way or another… not least as I don’t have a definitive diagnosis yet (i.e. what kind of cells it is). They’ve just said that because it was more than 12 months since my last period the bleed counted as post menopausal. No doubt things will become clearer once they’ve done the biopsies etc. Maybe there are more options than the two treatment routes I read about?
hi Revcat, I had huge endometrial thickening, no bleed, but period like pain, after 2 years on tamox when I was 49. had the procedure you describe under general anaesthetic, but was found to be nothing but thickening, nothing unpleasant and all the onc did was take me off tamox and on to exemestane.The pain went away. However the exemestane did not work for me, but that is another story. So there may be no problem at all - hope so. xx
Thanks Moser, that’s really helpful. I get the period-like pain too, on and off, with peaks and troughs.
Really encouraging to know it was ‘something and nothing’ in that repsect, and that it might ‘just’ mean a drug change. Sorry the exemestane was unsuccessful for you, and hope your current regime is ‘doing hte business’.
Rev I’m a bit confused by the term Tamoxifen induced Endometrial Hyperplasia, as as far as I’m aware Tamoxifen doesn’t effect hormone production, so I don’t see how it could cause EH. I had EH myself a few years ago, and as far as I’m aware it is caused by un-opposed oestrogen (oestrogen that isn’t counter balanced by progesterone). As Tamoxifen works by preventing proteins on the cancer cell being stimulated by oestrogen, rather than preventing oestrogen production , I can’t understand how it could cause EH (my understanding is that hormone levels are not altered by Tam).
When I suffered with Endometrial Hyperplasia I had a DNC, and was given progesterone to counter balance the oestrogen in my body (which as I was post menopausal was probably being created in the fat around my waist). But obviously if you have / have had BC, the last thing you want to do is put more hormones into your body. Consequently, I just wonder if the best solution for you would be to go onto an Aromatase Inhibiter, such as Letrozole ?. Because this would prevent oestrogen production. Of course that would only work if you are definitely post-menopausal.
Hope this suggestion helps.
Hi RevCat
It’s really tough isn’t it, when another bc se comes up. I hope that your tests will come back negative - ie no nasties in the womb lining. Whilst I haven’t been through your experience, I thought sharing would help you puzzle together what you may decide when you have all the information available to you.
I have been on Tam for 21 months and do not suffer the se’s you describe. My cancer was strongly ER/PR positive and when I recognised monthly cycle symptoms 3 months post chemo, I panicked. My period had stopped after FEC1 and really, I did not want it back.
After a discussion with my onc, he referred me to the gynea and had a bilateral salpingo oophorectomy (only tubes and ovaries) in July 2011, so if you ever considered this and had questions, then send me a pm. I remained on Tam following this procedure, but will switch to an AI as strictly speaking I am post menopausal.
It’s never an easy decision to undergo radical surgery, my decision was made based on a number of factors such as size of lump, node involvement and a strong family history of both bc and ovarian cancer.
Hope you’ll get things sorted soon! xx
Hi Revcat i just wanted to share my mothers experiences although they are somewhat different because she was post menopausal at first diagnosis. She was diagnosed with a locally advanced breast cancer with a number of lymh nodes involved some 19 years ago and at the age of 71. she had a mastectomy and radiotherapy. She started tamoxifen but after about 4 years had a vaginal bleed. For investigation and treatemnt she had a D&C (Dilatation and curatage)possibly old fashioned now but essentially they scraped her wonb.) she was told the bleeding was secondary to the tamoxifen and to stop it. She had no other investigations or treatment.
Some 13 years after her primary she was diagnosed with a secondary in her pelvis…the lesion was biopsied so was definately a secondary although i don’t think it was actually causing the symptoms she was investigated for! She was recommenced on tamoxifen until she reminded them it caused bleeding earlier…incidently it was the same year I was diagnosed with a good prognosis breast tumour with no nodes! Since then she has been on arimidex (for 6 years) with no additional symptoms and no evidence of progression. We recently celebrated her 90th birthday. Unfortunately 18 months ago i was diagnosed with spinal mets but at present am doing ok on capecitabine…she may well outlive me!
Thank you all for your replies - it is SO helpful to hear what you have to say.
Lemongrove, you ask if this is Tamoxifen induced, the answer is actually yes. I don’t have all the correct science language, but essentially Tamoxifen blocks oestrogen in breasts and enocurages it in wombs. One of the less known uses of Tamoxifen is in relation to infertility… The possiblity of switching to AI if I am post menopausal (no-one has done an FSH blood test so who knows) is a good one, thank you for that.
NIM41 thank you for sharing your experience - I may well take you up on your offer of a PM if the surgical route looks likely (it has attractions for some of the reasons you mention).
Herbgarden, I am so sorry you have secondaries, but I am glad you and your Mum are both getting good treatment. Her story is very encouraging… It’s still basically a D&C procedure they just use a camera to have a good look around as well! I hope the capecitabine keeps those mets at bay and that you are able to emulate your Mum and live to a ‘ripe old age’.
Ragamuffin, thanks for the hugs - much appreciated. I’m not overly concerned, partly because I knew this could happen and also half expected it (if that makes sense). I am slowly filling up the boxes on the Tamoxifen side effects bingo card but still think it’s preferrable to the alternative.
Thank you all again, hope you are having a good Saturday, wherever you are and whatever you are up to.
Hi Rev Cat I had PV bleeding last year. My circumstances and experience are rather different - I had been on Arimidex for a year when my GP changed my meds to generic anastozole ( yes I know it is supposed to be the same thing ) I was completely floored by the severe and multiple side effects. These were dismissed by my female GP although she did take the PV bleeding seriously and off I went for transvaginal ultra sound which showed definite endometrial thickening. I had 3 separate trials with generic anastrozole and the same se kicked in and more transvaginal u/s showed thickening. I was eventually offered a hysterectomy after endometrial biopsies.I should add that i was post menopausal on Dx and strongly 8/8 ER and PR +ve.
Since then at my Oncs insistence I have been back on Arimidex no more bleeding and thankfully didn’t need a hysterectomy either can’t say my GP was happy about it though.
Perhaps AI maybe a consideration for you? Can you discuss this with your Onc?
XX
Golly Libby that sounds like a horrible experience - glad you onc took control. I was discharged by the oncs at the end of my rads, but am still seen by the surgery team, and they have an excellent MDT approach. Once I have some results from the gynae people, and assuming it is ‘typical’ rather than ‘atypical’ thickening, I will definitely ask to speak with someone in the team, ideally an onc, before making any final decisions. Thank you for sharing, that’s helpful to my mulling.
Thanks for clarifying that Rev. Hadn’t heard of Tamoxifen causing EH so was interested to learn about it. Apparently Tam doesn’t encourage Oestrogen in the womb, it acts as an agonist (it mimics the action of oestrogen, in the uterus). Maybe that’s why Tam is linked to an increased risk of uterine cancer.
Is it possible for your docs to test to see if you’re post menopausal? Would have thought AI’s were the simplest solution, and hope this is an option for you.
Hi RevCat, sorry to hear you are having difficulties.
I don’t have experience of these but have had experience of one of the proposed treatment options, the Mirena or progesterone coil. I am also strongly E+ p+ 8/8 on each. Although I had been told for years that the level of progresterone in the Mirena is very small and would be no risk, I know of several other women who used this over a period of years who also had bc. It could be entirely coincidental but my BS told me to get it removed as soon as possible. Other people have not had this advice or have been prescribed it in treatment of other SEs.
I can only reflect my own experiences and what I was told, and I would not wish to take the risk of using it if there is any chance that it can put me at greater risk of a recurrence. That said, the alternative surgery sounds like a significant op, so it is a difficult choice to make. Maybe I would see it differently if that was my choice xx
Hi revcat
Just hearing of your problems makes me grateful of the timing of my diagnosis (note just the timing not the actual diagnosis!)
I was diagnosed with BC one Monday in the beginning of August and two days later on the Wednesday was due to have a Left sided Oophectecomy as a day patient.
So I went along on the Wednesday morning for the Oophectomy and the surgeon asks if there had been any change since my pre-op. Well just the one but it maybe a big change and I told him of my BC diagnosis two days earlier.
Oh he says, well that could change what we do, obviously with your permission and your thoughts considered and he proceeded to give me a number of options and explained the major pro/con of each:-
Go home and have nothing done, you will continue to bleed and the pain you are experiencing which is the reason we were doing the operation in the first place and we will rearrange to do the surgery once the BC biopsy results are received by the BS
Have the op as planned - however following WLE and SNB the BS will want to give you some hormones, this hormone will produce a thickening of your womb lining and may even cause further bleeding and would make things difficult if you experience any further problems
Have a full hysterectomy. will take a bit longer in the operating theatre, will need to stay in hospital for a couple of days and recovery will be a little longer
I decided to go with the full hysterectomy, which he agreed was probably the best opton and the following week I saw the BS for the biopsy results. I explained what had happened the week before and he was happy that the Gyn surgeon had took away the womb as well because in his opinion and as I would be post menopausal the drug treatment would be straightforward in his opinion and I could blame the gyn surgeon for my hot flushes and not the BS
I am happy to say that I have now had the WLE and SNB (nearly three weeks ago) and feel as if I am recovering well, feel okay in myself etc. I know that I still have Radiotherapy to go but hoping that I might be able to return to work in between then and now, I am asking for a meeting with work to discuss this.
Hope you get something sorted to your satisfaction soon
