stopping tamoxifen after 6 years, some thoughts please

[Donnanh]

hello, I’m in the UK. Have been on tamoxifen for 6 years after mastectomy, chemo and radiotherapy. I've still not had my 5th year follow up with the oncologist, when I call them they just say “sorry no capacity”.

Anyway long story short i came off tamoxifen about 3 months ago as i didn't want to just carry on taking it, worried about risk of getting other cancers as well as risk of blood clots etc.

Since coming off tamoxifen i feel better in myself, less anxious, skin is better, belly has reduced and just feel a bit happier. My GP is sympathetic but says it’s recommended for 10 years “do you want to risk your cancer coming back?”. I don’t know what to do and feel let down by my oncologist, i know the NHS is stretched etc but feeling a bit lost, has anyone else had similar experience?

[Happyrosie]

hmmmm. Tough.

You can go to NICE (National Institute for Clinical Evidence) website and go through what they say. Not all that easy to follow but it might get you there.

I was in a similar situation but not tamoxifen. In my case after eight years of the ten I asked onco who said that the risk - statistically - of cancer recurring was the same with or without the drug . But only if my lump was 50 mm or less. Mine was almost 100 mm. There are no statistics on this.

We discussed. She would have preferred me to stay. I decided that quality of life was preferred over length. Also discussed with husband. So came off. Actually, life was not much improved

But I am 78 so this is not the same as you.

And I’m still here ten years after the mastectomy.

[Donnanh in reply to Happyrosie]

Thanks for replying and sharing your experience. Mine was 60mm and one node with cancer so I’m scared to just come off. I’ll have a look at NICE. xx

[Happyrosie in reply to Donnanh]

Ah. My nodes were clear. I’m horrified you can’t have a conversation with your onco. What about PALS at the hospital?

[mathematics]

Hi I took tamoxifen for 5 years then letrozole for the next 5 years they then took me off them all. They said they had done what they could to make sure the cancer did not come back as the cancer was a grade 3. I have to admit I'm glad I took them for the ten years but I am really happy I'm off them now as I've managed to get my weight back down my hair has thickened up, I'm not getting swollen feet etc no more side effects. So I understand how you feel. Take care

[Donnanh in reply to mathematics]

Thank you for sharing x

[dyevooshka]

It's so hard to keep track of our own treatment trying to do the right thing for ourselves. Would your Oncologist be willing to do a short phone visit if the office is just too busy?

[Donnanh in reply to dyevooshka]

Hi Thanks for replying. My last couple of annual follow up appointments has been via the phone anyway because of covid and then backlog of covid. Seems now they can’t even fit in a phone call. I’ve called them countless times and eventually they wrote to my GP to say “please do her bloods, if she is post menopause change her meds, if not we recommend carry on with tamoxifen”.

[dyevooshka in reply to Donnanh]

Just keep being the squeaky wheel. Such a pain!

[Redhill88]

Hi DonnanhSorry your going through a lot

But I never took tamoxifen and my cancer never came back and it's almost ten years ago

Doctors push people on these terrible drugs and expect you to be fine but these drugs are so hard on the body especially as the can give you another cancer

I would advise you to eat good and exercise and not to much stress and you will be fine..but only you can make this decision by

I mean they told me I would be dead the next year if I didn't take it and they kept ringing me and scaring me into it

But I was strong and walked away

I wish you the best of luck😊

[Donnanh in reply to Redhill88]

Thank you for sharing, hope you remain cancer free always x

[Runmash]

Hi Donnanh so sorry for the position you find yourself in. The original plan for me was to be on tamoxifen for 5 years then Letrozole for a further 5 years but after 2 years I started having side effects which meant I either needed to have a hysterectomy or change to letrozole- I moved onto letrozole but suffered with side effects with that and after about 18 months moved onto exemestane. I have been told that I will remain on that until 10 years post mastectomy (2028). Since I am post 5 years I will no longer see anyone specifically for my breast cancer - indeed I had a recent issue and needed to go to my GP first - so remaining on exemestane until 2028 seems like it is just up to me but I will continue with it. I don’t know if this will be of any help. It might be worth discussing your situation with an organisation like Breast Cancer now. Their specialist nurses may be able to help. Take care and best wishes.