Hi! I only started Tamox 10 days ago and requested a baseline ultrasound of the womb but was told “they only did that once problems arised”.
I would like to know if any of you has experienced thickening of the womb lining with this drug and how long after starting treatment did that happen. Also, has anybody been prescribed the Mirena coil?
Thanks!
Hi Nikiya,
I have been on Tamoxifen for 6 weeks now and all has been well at the moment. Periods stopped after first chemo and apart from a slight bleed there’s been nothing else. I had to have the mirena coil removed when I was diagnosed as I am Er+ and Pr+. So that would be a definate no no for me again should I have problem. I only had it put in in October last year and was diagnosed in Feb… not that I’m pointing the finger, but I get shivers when I hear about the coil. I asked my surgeon could that have caused my cancer and they couldn’t deny that maybe it had, but they told me to get it out ASAP.
My Friend who is 5 years post treatment was on Tamoxifen for 2 years when she started bleeding really heavily and was given a hysterectomy. They told her that due to her being Er+ that would be best so as to avoid and threat of womb cancer. She went on to have Arimadex for 3 years and has just finished. She hasn’t had any other significant problems.
Best Wishes
Fiona xxx
Thanks Feemac! I know the coil is given to counteract Tamox effects on your womb. The problem with aromatase inhibitors is that they accelerate calcium loss so they are not for everybody.
I had requested a bone density scan and it was cancelled because the put me on Tamoxifen.
On Wednesday I waited 3 hours for an appointment with an oncologist and forgot to discuss the coil!
hi nikiya, let me tell you my experience I was first diagnosed in 1990 at age of 39, was put on tamoxifen my periods got heavier and heavier to the point where I couldent go out. I usedto use about 4 pads at a time and still leaked everywhere. I was sent to gynae cos I was anaemic and had an ultra sound my womb lining was extrememly thick, I think they thought it was cancer I had a hysterscopy and it was fine, just the good old tamoxifen doing its job, I might add I had no problems with heavy periods before bc.I was advised to have mirena coil, which was brilliant virtually stopped periods, but hey ho after 4 years I had a reccurence after 18 years and had to have the coil removed straightaway. I am not making any assumptions but thats what happened. I am now on arimidex I do get painful joints but feel its better than tamoxifen as I used to get reccurent thrush when I was on it. Best wishes suzan
Thanks Suzan… for what I read a lot of women have had to undergo hysterectomy thanks to Tamoxifen. How long had you been on it when you started having heavy bleeding?
Hi nikiya the periods got heavier straight away and gradually got worse and worse I was on it for 8 years in all. Periods still heavy evenwhen I stopped as damage had been done by then, my gp spotted I was aneamic when I had a blood test, I am afraid I am one of those women who does what they are told and doesnt like to complain, but in hindsight I wish I had done what you are doing and requested a baseline scan, its such a quick procedure with ultra sound I think they should agree to it.Why wait till you get problems and are bleeding so heavy you cant go out.I think I had my hysterescopy done in 2003 so it was long time after I stopped tampoxifen but it doesnt just right itself when you stop, my womb lining was 21mm and should of been around 5, so you can see the difference. Its your body and dont be afraid to say what you want, I was misdiasgnosed the first time doc said I had a fibroadenoma and it was only cos of being persistent that they took any notice of me and now I would always say stand up for what you believe in after all if it gives you piece of mind why should they object.After all you have already been through enough best wishes suzan
hi nikiya
i was diagnosed with ER pos BC in april 2006 and started tamoxifen july 06 never had problem periods at but started getting prolonged, frequent periods and flooding.
was seen by my gyn in nov 06 who did exam and said it all felt fine but best to have hysteroscopy and d and c which was booked for jan 07.
i asked him to pop a mirena in at the same time so long as they thought it would be ok… im a family planning nurse so had read up on it myself and the beneficial effects of the mirena whilst on tamoxifen… it was great
light spotting daily for the first then started to reduce and by 6 months had no bleeding at all…
i did however get a new primary breast cancer in may 09 but my consultant said was such low amount of progesterone released… turns out this cancer was hormone negative anyway… and now im on chemo im not to get pregnant at the mo so the mirena is great.
i am to restart the tamoxifen after my current treatment ends for the 2nd BC.
lulu x
Thank you girls and I apologize for the delay in ack, but had serious problems with my connection (not completely sorted out) and with a rash I have been having on my operated breast and armpit since Oct 1st (which after visits, calls, tests, etc has NOT been diagnosed or treated).
So back to my question: from what I read it seems they would only take action ONCE you start with problems. My baseline ultrasound was DENIED so I did not get one… I have been on Tamox for 20 days now and so far it has only increased my fatigue. But it is worrying to know they’d rather deal with fully fledged problems than try to prevent them. I wonder who, if anybody, is responsible for this policy.
my mum got a rash on her boob on tamoxifen and it was stopped they couldnt rule out an allergic reaction to it… she was post menopausal though and went on to arimidex instead.
have you been seen by your cons about it? prob worthwhile to get it looked at by him.