Haven’t been on this site for long time. I was diagnosed in 2004 ,when i was 40 ,had lumpectomy and nodes removed. Tumour was 11mm and was in two nodes.Didn’t have chemo( had it as a 16 year old when i had leukaemia), had radiotherapy and was put on tamoxifen.
My periods stopped after i started taking the tamoxifen and didn’t really have any problems taking it(apart from the flushes!!) until last October when i had a period!!(Thought i was coming out in sympathy to my daughter who had just had her first period!!) Panicked and went to see my gp who referred me to gynae clinic. Had an ultra sound, blood tests and biopsy taken which showed nothing abnormal apart from a slight thickening of my lining. Then in February got a letter from my onc telling me that since i was post menopausal i should switch to taking Arimidex until October(5 years up then) and they will decide what will happen then.Was very shocked to learn this in a letter, so phoned breast care nurses to try and get an explanation- was result of hormone levels taken at gynae clinic. Didn’t understand , thought taking tamoxifen interfered with hormone levels. Anyway started taking Arimidex in April but then last month had another period, phoned breast cancer nurses again and they advised me to get my hormone levels checked asap(luckily i work in hospital so not a problem) When i phoned for results they now think i’m perimenopausal and have been told to stop taking Arimidex, get my hormones checked again in 3 months then they will decide what to do. I know i am nearly at 5 years and shouldn’t worry, but like my surgeon said its like my safety blanket has been taken away.Tried to get explanation from him what was happening to me but went whooosh way over my head!! Just wondering if anyone else had had this happen to them.
Just bumping this up…
Hey Gillsy,
Yes it’s totally confusing isn’t it? I was dx May 2007 at age 41, mx, chemo, rads, herceptin and currently on tamoxifen since November 2007.
I had a period just after starting chemo in July 2007, then nothing until November 2008 when a period appeared out of the blue. I had another one in December as well. No-one every offered me tests for hormone levels or anything. The general consensus was that it might mean my fertility had returned or it might mean nothing. Great. As we were trying for a second baby when I was diagnosed I found it very emotional to have a period again. But then nothing again until a few weeks ago when I had another period. Bonkers. My gut feeling is that this is the start of the menopause caused by all my treatment but I’m just not sure.
Sorry this probably doesn’t help you at all but I just wanted you to know that you’re not alone. I hope you get some answers.
Take care
Veggiebean
Hi veggiebean
Thanks for your post , it does help to know that i’m not alone. I’ll maybe try and get the bcn nurses to try and explain things to me in words i can understand!! Why does my brain seem to go to mush when talking to consultants!!
Hope things work out for you
Take care
Hi Girls,
I’ve been on tamoxifen since Jan 08, when i finished chemo. My periods stopped during chemo (I was 44) but I’ve had the odd few here and there since then. My onc said that under 40’s were likely to regain their periods, but over-40’s it was a bit less likely.
This is my understanding…The tamoxifen doesn’t affect your hormone levels. Instead it latches on to the cancer cells and blocks up the 'keyhole’where the oestrogen would attach itself (and thus make the tumour grow). You only go onto Arimidex once they are sure you’re past the menopause, as Tam is more effective before the menopause. I have a feeling Arimidex is a bit cheaper than Tam, so that’s why they switch you over post-menopause. My onc said that if there’s any chance I’m still having periods I must stay on the Tam.I think that Tam can affect the readings of hormone tests, too.
Hope this makes sense.
Jacquie x
Hi Jacksy
Thanks for your post.I thought that taking tamoxifen can affect hormone readings too thats why i couldn’t understand why they thought i was post menopausal and switched me to arimidex.Onc said last week it was difficult situation because i was a “young” woman.Hopefully will get things sorted out in next 3 months.
Just wondered if there was anyone else out there who had ALL as a child and has gone on to develop breast cancer?Been told bc probably result of treatment i had then.
Gillian