Has anyone else had the same problem.
After WLE, chemo & rads last year.I’m 42, periods stopped after chemo. Been on tamoxifen for a year. No problems. Suddenly I’m getting pelvic pain, similar to period pain and a feeling of numbness/pins and needles in my legs and a general lethargy.
Do you think this is a side effect of the tamoxifen or just the delights of the menopause?
Has anyone else suffered similar? Any advice gratefully received!
it doesnt sound like either… normally if you were having side effects they would develop within a year of taking them usually within a few weeks.
the menopause doesnt normally cause tingling or numbness in the legs… i would recommend seeing your Gp or family planning clinic and perhaps a gynae referral if they felt it was warranted.
its always best to get any new symptoms checked out.
best wishes Lxx
Hi
I began Tamoxifen last Monday and yesterday and today have quite bad pelvic pain as if I am due to start a period - but here’s the thing!! I don’t have a uterus - had hysterectomy 5 years ago!!! My legs are OK but I am having all sorts of new symptoms and I feel stupid mentioning them all the time. Scared now that it is ovarian problems but I am sure it is hormonal due to the timing. Take care.
Finn x
I have been taking Tamoxifen since June 2005, following lumpectomy, at that time the leaflet enclosed with the tablets advised that any adverse effects should occur within the first few weeks. Therefore, when I, like Jax77, suddenly developed pelvic pain and many other symptoms last October, (08), I did not suspect Tamoxifen could be the cause. As I am still going downhill, I recently searched the Internet and was dismayed to find numerous postings suggesting many new problems had been found with Tamoxifen since 2005; some that can cause permanent damage or be fatal. I checked the leaflet with last months supply of tablets and found advice had been revised since March 2007 toinclude: ‘Also, because of the way this medicine acts on the body, there is a chance that it might cause unwanted effects that may not occur until months or years after the medicine is used’. (Not emphasised in anyway). And, ’TO STOP TAKING the tablets and contact your doctor IMMEDIATELY’ if one of a long list of symptoms occurred. I believe, there needs to a system put in place to insure users hear about changes more rapidly than one year. I am told the time depends on the stocks of the drugs in the supply chain when revised warnings are published. I have written to my MP.
Hi Jax …I have been on Tamoxifen for 18 mths I am experiencing similar to you but I also have browny discharge and today the pain behind my belly button was horrendous I have already had a scan and the uterus wall has thickened ,i am having a internal scan and biopsy next thurs as Tam can cause Endometriosis…as my mum died of ovarian cancer I am a bit stressed to say the least .
Go to your GP its best to be on the safe side xxxxxxx
its prob nothing just this vile medication I have also turned into a she -devil bitch woman from hell !!!
Maz x
Evening
I’m an advocate of having your ovaries removed, day surgery, keyhole job, quick and simple, speedy recovery.
When your ovaries have been removed you can stop taking toxic Tamoxifen (which by the way raises your risk of uterine cancer by something like 10% and also raises the risk of strokes) and start taking an Aromatase Inhibitor once you are confirmed post menopausal.
Mind you A.I.s also have side effects like bone thinning, joint creaking etc. but I think they may be the lesser of the two evils.
Having your ovaries out also reduces the risk of BC! Bit late but it will still reduce the risk of another BC.
You will then have a residual risk of Ovarian Cancer which will be less than that of the general female population.
Worth considering …
D
Hi
Thot my own experience might help in making decisions. I had a year of Tam and didnt like it one bit, so had ovaries out 6 months ago. Had a couple of weeks “off” from all drugs before starting Arimidex, those few weeks were wonderful, even with ovaries gone, I was at last feeling better, more normal. Now its all gone downhill. Changed from Arimidex to Femara in hope chronic pain and stomach upset would subside, but its not one bit better. I’m now seriously considering stopping the inhibitors altogether to get back quality of life. Dont think my onc will be too happy when I tell him this on Monday. Hoping he’ll say 18mths of hormone therapy I’ve had with both Tam and inhibitors is enough. I feel like I’ve had enough, oh dear.
Jan
Thanks everyone,
Conforting that I’m not the only one. I think I will contact my GP just to be on the safe side. Don’t care anymore if he thinks I am a hypochondriac! Peace of mind is worth so much.
xxx
Jax
Hi Jax77,
Please post the result of your visit to your GP. Mine has kept me on Tam. and is treating the symptoms one by one.
Best wishes,
Kit50
Hi Jax
How did you get on with your GP?
I had to see mine as me period type pain has not let up for a week. I stopped taking the Tamoxifen last Friday which I had only been taking a week when the pain began. It hasn’t made any difference - the pain is awful and relentless. My GP said I could have had undiagnosed endometriosis before I had the hysterectomy which has been dormant until I started hormone therapy. This may have triggered it off. It’s only a theory and he has contacted my Consultant, but I have heard nothing. I am demented with pain and frustration that no-one is helping me. My BCN, bless her, said have a hot bath and a glass of wine!!!
It can’t be a normal side effect or I would have been reassured by now. Naturally worried about ovarian cancer now. Can’t be surely!!
If anyone can reassure me it is the tamoxifen I would be grateful. Thank you.
Finn xx
Phew - I thought I was imagining things.
Lost my periods during the chemo which ended in March and then went onto tamoxifen in April didn’t have a period until July when I had the period from hell - the week before was horrible, I actually thought I may have swine flu!!! I was in agony in my stomach and ached all over and was the bitch from hell and as for the hot flushes - don’t get me started. The period itself was so heavy that I couldn’t really go very far from a loo. Then the same again happened in August only this time I didn’t think I had swine flu :)and recognised that it was the same feeling as I had had in July.
I am constantly irritable with my husband and my 4 year old girl, my bones ache (I already have rheumatoid arthritis so don’t need any more pain), I have permanent hot flushes - in short I hate it and really don’t think I can stand it for 5 years.
Nobody had told me that removing my overies could be an option - I think I will have that discussion with hubby and the oncologist!! Thanks guys for opening my eyes a bit.
Keep smiling everyone - we will all get there in the end xx
Hi all, I start taking Tamoxifen in 2 weeks and am getting a bit anxious - is anyone having an ok time on it?? I guess we are all different and I just have to see how I go - at least I have an idea of what SE’s might arise so thanks for the heads up! I’ll enjoy the lull while I can - best wishes to all debbie x
Hi Guys
Been to see my GP and have been booked in for an ovarian scan as I have had very slight bleeding too. Feel happy that they are checking this out. Still on the tamoxifen. I’ll keep you updated on the results of the scan. Off on holiday tomorrow. So a bit of sun and relaxation will hopefully ease all my aches and pains!
Thanks for your support xxx
Hi Ladies,
Just to let you know I’m in a similar situation, I’m 44 and pre-men. Started Nolvadex in Feb this year. Periods stopped during chemo last Dec and hot flushes took over. They continued once chemo stopped, into radio and for the 1st 4 months of taking nolvadex, then suddenly they stopped only to be replaced by a horrid dark brown discharge which I’ve had now constantly for 5 weeks.
After 2 weeks of this I went to my GP, who examined me and said it’s old blood, I’ll refer you to gynae. I’m going 7 Sep (the days the kids go back to school - deep joy!) for a diagnostic hysteroscopy (camera up the uterus - great!!). I’ve had pelvic period-like pain on and off, some days the discharge is heavier and redder, like a period, some it’s not. My GP thinks it’s the nolvadex but wants them to check my endometrium just to be on the safe side.
I’ve had plenty of time to google endometrial thickening and it is a very common problem on tamoxifen. Whether there’s a solution or not I don’t know, but I don’t want to stop taking it because my C was grade 3 invasive and huge and I’m terrified of it spreading.
HTH, Bella x
I too am am taking tamoxifen and have been experiencing many of the side effects that have been mentioned here.
I do have concerns about some of the more worrying effects of it, but as with any drug, you have to weigh up the the positives against the negatives. With a high grade, strongly oestrogen receptive tumour, I think that the risks are outweighed by the benefits.
Even with ovary removal, the body still produces some oestrogen in the fat cells (and I’ve got plenty of them!).
There is a lot of scary stuff on the internet about the bad effects of tamoxifen, but these sites don’t offer any alternative treatment so I just have to put myself in the hands of my oncologist and hope that this is the best treatment for me.
Hi there
Me too. My periods stopped at the end of chemo but seem to have started again. Also have had pelvic/period pain type cramps since starting Tamoxifen some six weeks ago. I had an ultrasound of uterus and ovaries in July and all was fine so I’m not too worried - but going to mention the discomfort etc at my next check up in a couple of weeks.
Bright
Hi ladies, thank you, your comments are very useful - I only started Tamoxifen on Tuesday after 6 lots of chemo (FEC)following removal of a 1.7mm grade 3 lump - also got secondaries to the bones in 5 “hotspots”. My periods stopped in June during chemo so will be very interested to see how I get on - some 11 years ago I had treatment for pre cancereous cells in the utuerus so will be keen to follow up on any adverse side effects - dont see GP for a month and ONC in early November - just going to keep everything crossed - I agree that the benefits outweigh the probs and it has been prescribed for many years. Best wishes to all, Debbie x
Bella i had irregular heavy bleeding within the first few months of starting tamoxifen 3 years ago and needed a hysteroscopy and d and c… i asked them to pop in a mirena coil while they were at it (i had grade 1 100% ER pos IDC with no nodes). speak to your gyn when your having your hysteroscopy about whether it would maybe be something you would consider.
Lulu
Thanks Lulu but too late!
I had the hysteroscopy and endometrial biopsy done yesterday (with no aneasthetic - what a brave girl I am!). The gynae (lady) was lovely and said she sees a lot of irregular bleeding on Tx. Initially she wanted me to go back for a D&C under GA, but I said I wanted to avoid GA as I reacted so badly for the one for my mx last year, so she suggested ‘having a go’ (ha ha!!) at taking a biopsy there and then providing I understood I might still need the D&C if not enough was collected.
The ‘best bit’ (if such a thing exists!) was seeing inside my uterus - it was incredible. The gynae couldn’t see anything nasty but noticed that my endometrium had a lot of white fluffy bits like clouds. She got the nurse to have a look and said ‘we get a lot of this on Tx’. I could see it on the screen too.
So…I wait for the results. She didn’t seem too concerned and told me the risk from cancer was minimal, but I’d still like to find out what’s causing the bleeding, so hopefully will get an answer.
HTH
Bella (walking like John Wayne today!)
Hi
Well back from holiday. Amazingly I felt fine while I was away! I’ve had my ultrasound and apart from some thickening everything was fine. The pelvic pain comes and goes but my mind has been put at ease.
Thanks for your insights. Its great to be able to talk about these things without people thinking you are a hypochondriac. x