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Life-limiting illness

Breast Cancer and Tamoxifen

12 replies

Pr33t1 · 03/03/2021 07:45

Hi. I was diagnosed with HER negative and hormone positive breast cancer. Had lumpectomy now am waiting for radiotherapy and I not quite sure what to expect. Also waiting for gene results.

Can anyone share with me how tamoxifen affected you? Is anyone carrying on with normal busy working life on it? Thank you in advanced.

OP posts:
myhairygoat · 03/03/2021 07:49

Hi I was on Tamoxifen following a mastectomy for Her2+ and hormone positive breast cancer. My periods became irregular and then stopped for a while and I had a few hot flushes. However after 2 years on it, it was discovered that it was making the lining of my womb very thick. I had my ovaries taken out and have been on Letrozole since then. I've not really had many problems on it - I'm stiff and tired. I work part time.

MissyB1 · 03/03/2021 07:55

Hi I’ve been on Tamoxifen for 5 years now. I had Her negative and strongly oestrogen positive cancer.
I went sleep bang straight into menopause as soon as I started Tamoxifen (but I was 47). It was rough for the first 12 months I won’t deny. My periods stopped completely and the hot flushes/ brain fog/ anxiety appeared very quickly. I think I would have coped far better if someone had warned me. No one talked me through the side effects of Tamoxifen and I didn’t understand what was happening to me. The lack of information and education makes me angry.

Anyway i hope you have a much easier time on it. If you do suffer any side effects please do talk to your GP or specialist nurse or breast surgeon. Don’t just suffer in silence and embarrassment like I did.

Martinisarebetterdirty · 03/03/2021 08:00

I had estrogen and progesterone positive breast cancer 12 years ago. After a lumpectomy, chemo and radio I went on to tamoxifen. I was late 20s and stayed on it for 18 months (came off as I really wanted to start a family). I honestly can’t remember If my periods stopped but the only side effectS I had were hot flushes which were manageable - a feeling of intense heat for a few minutes but no sweat. I was also quite up and down emotionally but I don’t know if this was the tamoxifen. I was signed off a few years ago but due to other health issues I am resigned in with a new specialist, who incidentally said that the most important part of my treatment for my specific cancer was the tamoxifen, so views and opinions change all the time.
I wish you all the best with your recovery Flowers

EmbarrassingAdmissions · 06/03/2021 22:02

Tamoxifen varies - some women report being able to carry on with work, others reduce their hours or stop work altogether, depending on their overall response and their circumstances. Others have a rough start but then it smooths out for them.

My sister had a rough time but worked on the timing and splitting the dosage with her Specialist Nurse and along with other changes this has worked so much better for her.

xmaskitkat1967 · 08/03/2021 17:10

I started on Tamoxifen when I was 46 and it has been horrific - I'd say 20 to 30 hot flushes a day, and at least half a dozen of them resulting in sweat pouring down my face, chest and back and ringing wet hair. Rarely slept for more than 2 to 3 hours at a time.
Now 7 years on it has been managed much better - i take slow release venlaflaxine which has been a game changer for me. Also have a new wardrobe of thin clothes - short sleeves for winter and sleeveless for summer!!! Sleep without a duvet all year round. I have also learnt to avoid situations that will create a problem - or at least to be prepared.
My bones felt like I had become 80 overnight I have so many aches - have now learnt that exercise is essential to keep going.
I think (maybe wishfully???) that it's getting better - anyway only another 3 years to go. Fortunately my consultant is very pro-quality of life and has provided advice and options to help as he is really keen for me to do the full 10 years due to being 8/8 OE+.

LostArcher · 14/05/2021 20:11

I was post menopause. Letrozole made me very tired although I kept working. Now on tamoxofen because it is better for bones. Feel ok. Very busy, super stressful fill time job.

Englishrosegarden · 28/05/2021 20:45

I had a lumpectomy and radiotherapy 3 years ago. Started on the Tamoxifen but like a previous poster the side effects were horrific. The flushes were so bad I couldn't work or sleep and I felt like shit all the time. I read the common side effects - cataracts, anemia, fatty liver, dvt, depression, fatigue, hair loss, nausea, headaches etc and decided to stop taking it if things didn't improve. I stuck it out for about 3 months but nothing changed so I decided to take my chances without it. I figured my quality of life was so bad on it (and the long term side effects so severe) that I would rather take the chance of the cancer returning and live a normal life while I could. I feel absolutely normal now and don't regret my decision whatever happens in the future.

LemonRoses · 28/05/2021 20:51

I did ten years on Tamoxifen. It stoped my periods after about three months but didn’t actually tip me into menopause, on blood testing at five year point.
I had a couple of weeks of hormonal change symptoms- a bit of flushing. Nothing major.
Over time my skin became drier (but ageing ten years it would happen anyway).
Barely noticed it really.

SleepingLikeALog · 28/05/2021 20:54

@LemonRoses may I ask when you finished taking it and have you been given anything else since finishing?

I am due to finish in July after 10 years. I'm 48.

LemonRoses · 28/05/2021 21:14

I was tested for transfer to Arimadex at five years. I wasn’t menopausal at that point (but had assumed I was....). I stayed on Tamoxifen until ten year point and then stopped all treatment. That was December 2019. I also then return to the usual screening programme, rather than annual mammograms.
It’s good to feel cured.

purpleme12 · 28/05/2021 21:21

I am going to ring my doctor about possibly going on tamixifen as a preventative measure because of family history
I've got a letter from my mum's consultant
But I had no idea about all the horrible things mentioned above!
I'm a bit worried now

HenryHorse1 · 24/08/2021 21:01

Hi, how have you found tamoxifen OP? I am 5 years in, did really struggle with hot flushes but found sage leaf helped

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