Hi there. I've made the decision just last week to come off tamoxifen after surgery, rad treatment and 2 yrs of taking tamoxifen. My risk is 32% - to me that is low enough to get some quality of life back. I have seen a tiny improvement but it's still early days. Back to see consultant in 5 weeks. He's meant to be country's leading expert and when I told him of my symptoms (very similar to all) he said tamoxifen isn't cause. Yeah right. 

There's a new tool out now designed by an American doctor which when all medical info is inputted it tells you the risk over 5 years then 10 years. They've also discovered breast cancer is as unique as a person's DNA- that's simply put. You have to read whole article

scienceblog.cancerresearchuk.org/.../

I am happy with my decision but you have to decide what's best for you and your body/situation.

Hope it goes ok and wish you well.

Gosh, using predict, my Risk/benefit is 1% with tamoxifen and I would still take it. 32% is really high, why would you risk it?

To me 32% isn't high. If it was above 40% then I would not do it. I have vision issues, dizziness, fatigue and my periods have come back very painful pls and now digestive issues. My quality of life is not what i want - I can't work full time either as I'm getting severe fatigue so I don't want to be on tamoxifen for 10 years and then be put on an aromatose inhibitor. Many studies have been done about Er+PR+ HER2 negative cancer and tamoxifen so I am satisfied doing the trial 6 weeks of not taking it. It's a personal choice and like I said you have  to do what is right for you. That's why I made the choice as I know my body and I've done my research and spoken with my consultant (who is country's expert). To me, a benefit of 32% isn't worth taking it with all the aide effects.

Please let me know how you get on, any withdrawal effects, how long it takes for you to feel more like you.  I’d really appreciate it.  I’ve decided to start taking my tablet at night to minimise night sweats and so get a good nights sleep to help with fatigue which is my main issue.  Next mammogram due in July.  If that’s all clear and I’m still not feeling good I coming off it.  Your right quality of life is so important.

Hey Usedtothefiht. I have been on tamoxifen for 2 years and am back to the consultant in 5 weeks to discuss further. I'll gladly let you know how I get on but fatigue and dizziness a tiny bit better. Still have digestive issues. I took mine at night too but didn't help with fatigue. I also have added joy of pain and swelling at surgery site and ribs. My list is long but trial and error for all I'm doing. I've always said that ones cancer is unique to them as their DNA and we all react differently to every stage of this journey both physically and mentally.

Thank you, good luck with the rest of your journey.  

After seven months my symptoms have got much worse... namely tiredness and headaches. It is seriously impacting on my quality of life. I am currently on a break and seeing Oncology to discuss. After 5 days I already feel so much better... less tired, no headaches and emotionally so much better.  
It is tricky but quality of life is important to me. Hadn't realised how much the side effects were getting me down until recently. So I totally get where you are coming from.

Hi Flowersorcakes,

Welcome to Cancer Chat. I am sorrry to hear of the problems you are having with Tamoxifen.

I have had 2 bouts of breast cancer within the past 10 years. I took Tamoxifen for the first year and had a lot of side effects. After my second bout was diagnosed , I had a double mastectomy followed by Letrozole for 6 years. I stopped taking this in July 2017.

The side-effects of Letrozole were different, but impacted on my life even more than Tamoxifen. We all react differently to cancer treatments, so I can understand where you are coming from.

Have you discussed this with your oncologist or surgeon? I certainly agree that quality of life is important, but is it better than no life at all? It is worth discussing this with your care team. There are alternative medications that can be given and, they will be able to give you some idea of survival with and without further treatment.

Please keep in touch and let us know how you get on. We are always here for you.

Kind regards,

Jolamine xx

I will be seeing my oncologist in a few weeks so we can discuss it. I had two breast cancers in the past two years, the first was not hormone receptive. I think I realised this week how much the side effects are impacting on me. I am trying to complete my Masters and want to return to work next year. Frankly, I am not able to live life the way I want to ...it has Ileft me feeling low and that is not how I want to be. I have felt so much better just 5 days into the Tamoxifen holiday, more energy, no headaches and feel brighter. I shall see how it goes and see what options are available. On NHS predict it is less than 3% ... that is not a lot. 

Hi Flowersorcakes,

I have great admiration for you still trying to complete your Masters, whilst going through all the Cancer related hubub. I was so tired at the time that I know that there is no way that I could have done this. Fortunately, I did a post-grad degree in my early fifties and didn't get diagnosed until I turned 60.

Do you know what grade or type of breast cancer you have? This will also impact on the success of treatment. The less than 3% figure that you quote from NHS Predict is close to the figure that I was quoted 10 years ago. I agree that this is not a lot.

Do please let us know how you get on when you see your oncologist and, remember that we are always here for you in the meantime.

Kind regards,

Jolamine xx

Hi Flowersorcakes,

I have great admiration for you still trying to complete your Masters, whilst going through all the Cancer related hubub. I was so tired at the time that I know that there is no way that I could have done this. Fortunately, I did a post-grad degree in my early fifties and didn't get diagnosed until I turned 60.

Do you know what grade or type of breast cancer you have? This will also impact on the success of treatment. The less than 3% figure that you quote from NHS Predict is close to the figure that I was quoted 10 years ago. I agree that this is not a lot.

Do please let us know how you get on when you see your oncologist and, remember that we are always here for you in the meantime.

Kind regards,

Jolamine xx

I was a grade 2 invasive ductal cancer ER + PR positive HER2 negative, 33mm I had a lumpectomy x 2 and 3 weeks of radiotherapy. 
 

Will keep you posted 

Hi flowersorcakes How are you getting on ? I'm just settling on the awful Tamoxifen I started in February, it's been a slow exhausting journey. I'm happy to say after trying venlafaxine and being changed to a slow release Venlasov XL it has improved my life dramatically. I went back to work 3 weeks ago, I'm a painter and decorator and doing anything as physical as going up stairs I was soaking and exhausted . I'm feeling very positive being on this new med it's helped so much, I'm swinging from staircases now like my good old days. I'm still 2 stone heavier but it's a small price. Wishing you well.