Tamoxifen

I have no experience or knowledge of Tamoxifen but I couldn't pass by on you post without wishing you well Lucyloo12

Hopefully, a GNetter with experience will comment very soon.
Stay strong and positive, your GNet family are right behind you x

Just remember that they are obliged to mention all possible side effects. Most patients will not suffer from any of them. If you recall , I am at the same stage as you, starting RT on 30/12, but my hormone medication is Anastrozole and has been prescribed for 10 years. So far I have had no symptoms, so am not worried. The alternative is far more risky without.
Good luck with your RT, soon you can put it all to the back of your mind, and live your life without worry.

Thank you Astitchintime, that's lovely. 😀

I don't have any experience of Tamoxifen, but I do have experience of another oestrogen blocker called Exemestane, which I've been taking for over two years after breast cancer. At first I was prescribed Letrozole, which didn't suit me, as I felt very nauseous.

The only side effect I've had with Exemestane is hair thinning and a slight loss of bone density. There's not much I can do about the hair thinning. I've now had two DEXA scans, which I expect you'll also have and have been diagnosed with osteopenia, for which I've been advised to ensure adequate intake of calcium and Vitamin D and to do regular weight bearing exercises (mainly walking).

Research shows that drugs like Tamoxifen do work in helping to prevent breast cancer from returning. Quite honestly, I'm more scared of that happening than any side effects from the drug. At least you can stop taking the drug if you have severe side effects and can try another one, which is much better than dealing with a recurrence of cancer.

Thank you Shysal, I remember you. I try to stay positive but have a scary moment now and again I.e. at 3 in the morning lol!! Hope all goes well with you too.... we will get through this. Good to feel supported. X

Hi growstuff, that makes perfect sense. Thank you. My interpretation of the leaflet was off the scale.... wish I hadn't read it. Fear of the unknown gets me every time. Will try to concentrate on diet and exercise to make the best of life rather than wobble at the cracking of dawn so to speak! X

Lucyloo12

Hi growstuff, that makes perfect sense. Thank you. My interpretation of the leaflet was off the scale.... wish I hadn't read it. Fear of the unknown gets me every time. Will try to concentrate on diet and exercise to make the best of life rather than wobble at the cracking of dawn so to speak! X

You wouldn't be human if you didn't have a wobble now and then! Take care .

My 75y sister in law has been taking Tamoxifen now for 4 years since her mastectomy. She looks and feels well.

All the best to you Lucyloo for good health going forward.

No personal experience but my friend who is 7 years past her breast cancer is still taking it, as her Consultant wants her to do 10 years on it. As she says, it’s better than the alternative!
She also has RA which has caused some problems.
Like growstuff she walks more, and looks after her diet, ensuring she gets plenty of calcium and Vitamin C and D.

I too take Exemestane and have been for 5 years. My consultant wants me to take it for at least another two years. It has made my hair quite fine and I have thinning of the bones. It is not yet osteoporosis and my last Dexa scan did not show any signs of deterioration.
However, if it prevents the cancer returning I am happy to put up with these.
I wish you well. I had chemo as well for 6 months.

Friedgreentomatos and Georgesgran thank you both, it's good to hear of others experiences to put it all in context. Those leaflets equals panic for me. Hope both ladies are keeping well. X

I have 2 friends who are taking Tamoxifen following breast cancer. One in 60s and one in 40s. Both have no side effects. I hope you feel a bit more reassured. Wishing you well xx

Hi Lucyloo
I had a mastectomy and took Tamoxifen, Toremefine and Arimidex at various times over 5 years. I was 50 and the drugs triggered the menopause so I did have menopausal symptoms of hot flushes and night sweats, and I gained a few pounds, so my drugs were swapped around to see if that would help. The information leaflets are terrifying, I know, but we wouldn't even take an aspirin if we anticipated all the side effects.

I have been clear of cancer for nearly 27 years so treatment worked. I wish you all the very best.

Lucyloo12, my MIL was diagnosed when she was in her early/mid 60's. Had a lumpectomy and radiotherapy, I think it was daily for 6 weeks. She was also prescribed Tamoxifen to take for 5 years, which she did without any issues.
Im a bit vague re the details as she was diagnosed in the mid 1990's-she's now 93, hale and hearty and seemed to sail through with no side effects nor recurrence.
Wishing you all the best and a similar experience as my MIL. x

I was prescribed Arimidex (anastrozole) for five years, perhaps it is dependent on your age. It was fine and they should follow you up for five years anyway so if Tamoxifen doesn't suit you, they can offer an alternative.

Best wishes, hope all goes well.

Lucyloo12.
My mom was on Tamoxifen for 5 years after her first mastectomy had no side effects.

A friend is in her mid 40's is on it for 10 years not side effects .

Remember to use Simple products when having radiotherapy. And use Aqueous cream to protect your skin. My mom used it and only had very pale sun burn rash. She had 15 doses of radiotherapy. It's cheap for a 500g tub from Boots.

I was first prescribed Tamoxifen but after a few side effects changed to Arimidex with no side effects at all.
It is so long ago that I truly can’t remember what the side effects were.
I took the combination for about 7 years altogether.
It is certainly better than the cancer coming back.

My dd was on tamoxifen for 7 years, it should have been 10 but she had started to feel unwell with it.
It’s universally used to prevent reoccurrence so best take it. If it doesn’t suit you there will be other options.
Try not to worry.

The benefit of tamoxifen if you're post menopausal is that it actually aids bone health. I was on Letrazole for 3 years which made me go into osteopenia, and they were considering treatment, but as I was about to switch onto tamoxifen for another 5 years they didn't bother. I've never been called for another DEXA scan who knows what's happening. The Letrazole caused further hair loss to the already patchy regrowth after chemo, but that's life. I don't remember any obvious side effects from tamoxifen. Do take care of your skin with the radiotherapy. I had 30 sessions and did suffer burns.

My Mum took tamoxifen for 5 years. She did not have a recurrence of cancer and lived to 84.

Thank you all so much for your positive feedback. I hope to sleep better tonight. X

As I understand it, Tamoxifen doesn't stop oestrogen production (unlike Arimidex) but it mimics oestrogen and by blocking the oestrogen receptors on the tumour, it starves it of what it needs. My wife had both T and Arimidex (and its similars such as Letrozole) and it was less life affecting than the ones that actually stop production. Tamoxifen didn't work for her and she's been running the gamut of different treatments ever since - more than 25 years!