Hi, probably a thread out there on this but couldn’t see it. Can someone clarify how Tamoxifen works? I was under the impression that it doesn’t stop your body producing hormones but blocks it from absorbing them. Is this completely wrong? I guess it must be because I am being told I should have my Mirena coil taken out because of the small amount of Progesterone it gives out. I am not impressed. If Tam blocks the hormones surely it doesn’t matter that the coil is giving a small amount out.Having the Mirena was one of the best things I ever did, Cancer really thinks of everything doesn’t it.
Hi there
As far as I’m aware from all the literature I’ve read, tamoxifen only blocks oestrogen. If you’re cancer is progesterone receptive too (PR+) then it makes sense to not have the mirena coil.
However, as someone who had the mirena coil in the past, I can understand why you don’t want to get rid of it. I have a feeling that some women have continued with the mirena coil but I might be wrong. I think it would be a good idea to speak to someone on the helpline for clarification. Elinda x
Here’s a link to a Macmillan info page on tamoxifen. It’s quite basic but will give you a better idea of how it works:
Hi I have just a mastectomey on 1st Aug. I am still very sore but the op went really well. I have had a dermal sling reconstruction!0/3 negative (meaning 3 nodes were negative) Thye said I~ had DCIS but I am now classed as having IDC Grade 1. It had become invasive but for only 9mm. I had the Mirena Coil in too and was told to get it removed straight away, which I did the following day. Luckly I didnt need Chemo or any other but to go on Tamaxifen tablets for five years. I’m worried about it coming back as I keep hearing stories about it coming back. Just been Doctors he s put me on Antidepressants. I cant stop crying! Anyone else feel the same?
Hi Loopyles,
I just wanted to reply to you so you know there’s someone here. As someone who had a mx nearly 3 years ago I understand the total emotional turmoil and shock you’re probably going through. My best advice would be to give the BCC helpline a ring in the morning and talk it through with their experts, they will be able to advise you best and give you the emotional support you don’t think you need!
All the best for your recovery and look after yourself,
Bella x
Loopyles, I can’t help with the mastectomy stuff but would like to give you a big soft fluffy hug, sounds like you could do with it. This disease, and the drugs we take, messes with the insides of our heads. I’m glad you’ve been able to get some help from your doc. I know from personal experience a few years ago that depression can be a total bitch, so I really hope you begin to feel the benefit soon.
I second what Bella suggests. Do give the helpline a ring, they are terrific. Can you also see if your hospital has a cancer support centre associated with it whether you can get some counselling, as when I was suffering from depression a few years ago the counselling helped as much as the anti-ds.
Best of luck, and in the middle of the night know that you are not alone.
CM
x
As I understand it, Tamoxifen blocks oestrogen from binding to the oestrogen receptive cancer cells which you have if you are er+. The Mirena coil releases progesterone, not oestrogen, so that is a different problem. I was er+ and pr+ so was advised to have my Mirena coil removed immediately, which I did although I was unhappy to have to do so. Not worth keeping something which might be feeding the BC.
Thank you Elinda - just followed your link to the MacMillan site. Very helpful. But, I note that the SEs do not mention fatigue/tiredness with Tamox. It ain’t included, either, in the little note you get with each packet. Many people on this site have mentioned it (ie fatigue/tirednes) - personally, I need to go to bed most afternoons for a 2 hour kip!!! And this is someone who never before (BC) could ever sleep anytime other than night in bed (ie not on aeroplanes,never siestas etc…)
On Wednesday, I had my 6 month check, told the Doctor (yet a different one, but super) and she said “yes, I have other patients with this problem on Tamoxifen”. This is the first time someone has admitted it causes excessive tiredness. Allellujah!!!
hi
Special thanks to CM and just loving the soft fluffy hug (bow very nice) and much needed, thank you!. And Bella, thank you too. I went to Hosp Friday to get my dressing taken off (ended up with another one on but at least I can now have a shower)I askedd my BCN about counselling, was very disapointed to hear she thought I didn’t need it! She said it was natural to feel this way and it was earlydays yet! But I have had 2 friends one I know and one someone eles knows had died! This year and was only DX last yr with BC, they had had breast cancer had a MX then it had come back in their bones stage 4 terminal cancer! SO as you can imagine especially after I have know someone a friend who had died I am so very firghtened. I feel I need to be convinced by a professionalist that I am thnking all the wrong things. Sorry to be a pain.
Loopy,
You are most definitely not being a pain! From what you’ve said so far I’d definitely strongly recommend calling the helpline as soon as possible as they’ll be able to guide you best. From those of us who have “got the T-shirt” and are several years ahead of you, we know that it’s the emotional support that’s almost more important than the clinical medical care.
My other source of support over the years has been the Breast Cancer Havens. There are 3: London, Leeds and Hereford. If you live near one you can obviously go along to see them but they all also do free telephone counselling plus they have a marvellous free DVD “Haven at Home” which they’ll send you if you give them a call. Google their website for loads more information.
Hope this helps, take care,
Bella x
how dare the nurse say you do not need counselling. Most hospitals have a macmillan center or other cancer charity. Try googling you hospital to see what it says on line, or ring the switch board. You can arrange to see them yourself you dont need the nurses permission.
The helpline might know what services are available in your area.BC plays around with your head so much and there are a lot of support networks in place.
Grrrr, I want to go and slap that nurse on the wrist.
There has been some research in the last few years about the benefits of a mirena when on tamoxifen as it helps reduce the tamoxifen effects on the lining of the uterus and it’s thought to protect against the endo ca which is higher incidence in people who have taken tamox.
I got my mirena inserted after I had Er 8/8 breast cancer help reduce the bleeding side effects I was having on tamox. I’d still have it now if I hadn’t had a hysterectomy last year.
Ask to speak to your oncologist and also see advice from a specialist gynaecologist.
But it’s your body and if you don’t want it out they can’t remove it without your consent.
Lxx
Loopyles, I’m not sure whereabouts you are but my local Helen Rollason cancer charity offers counselling, you don’t have to be referred just phone up and book it yourself. I have had one session so far but you book in sessions of 6. Might be worth looking into some of the local cancer charities near you to see if they offer similar.
Linky - yes, tamoxifen can definitely cause ‘excessive tiredness’ please see under list of side effects on this link.
I have suffered from terrible fatigue since my treatment which finished 18 months ago. When I saw the Oncologist last time he said he thought it was the tamoxifen.
Very interesting. Lulu, I have definitely not heard that about the mirena helping! I have 8/8 so Progesterone sensitive too. I was not advised to have it removed immediately just that they said it prob should go. Hope I haven’t put it off too much as it hasn’t gone yet! Had results 21st July and having coil out 9th Sept! Ooops. Might give them another ring.
Loopy, I have hope you find the support you need. It is out there, have faith 
Hi,
I am in the anti - mirena camp so be warned this will be a one sided view. I was originally told that medical advice is that the mirena is ok. I was suspicious as it seemed to be the only factor that had changed in my life. I quizzed the consultant again because he had said the tamoxifen stops the oestrogen but mine like most Bc is er+ and pr+ . When asked what happens about the progesterone it gives out if tam only sorts the Er+ part out he totally changed his opinion and said get it out as soon as possible.I reported this back to my 2 friends who were dx within 2 months of me and they were shocked as they both announced that they had mirenas too. One had bc at an earlier date and then had another mirena put in as told it was ok but despite the bc being at the earliest possible stage, she got bc for a second time.I know all of this could easily be coincidental but it was one thing I could do/change and getting rid of the doubt was good for me. They had theirs taken out too. You have to remember that it is made by a large company that makes a fortune from it and they are not likely to let any adverse publicity out because then we would all sue the pants off them. I think the jury is still out on this one but will it ever get a fair hearing when it makes that company so many millions? I just felt that it was giving my tumour breakfast each day. There have been a lot of posts on here from people for and against, with good reasons on both sides so whatever your decision be happy with it and don’t look back.
Good luck to you all
Lily x