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.  

I'm in a similar situation. I've been on tamoxifen for three years after a mastectomy & rads. On tamoxifen I suffer from fatigue, depression and chronic insomnia. Three or four days a week I would wake up around 2 or 3 am and not go back to sleep. I run a business, I have kids. Try functioning like that for three years. My oncologist has put me on a variety of different medications to help including antidepressants, gabapentin, etc. The gabapentin worked for about six months then it stopped working and made me really anxious and depressed and getting of of it was bad. Now they want to move me over to an aromatase inhibitor (even worse for insomnia) and put me on some tricyclic antidepressants that sound really nasty and have all sorts of warnings that go with them. So I decided to take a break from tamoxifen for a few weeks and so far - two weeks in - I'm feeling like a new person. Using that PREDICT calculator, staying on tamoxifen improves my chances of not dying from BC over the next 15 years by 7%. I'm really seriously questioning whether it's worth it. My oncologist is not happy with me and has warned me that if I think my quality of life is bad on Tamoxifen, try it on the chemo I'll need if the cancer recurs and metastasizes. I'm just so frustrated that there's not something out there that allows me to be a happy, functioning person and prevent a recurrence. And that my oncologist doesn't seem to recognize how bleak life is on this drug.

Hi Heather,

Welcome to the forum. I am sorry to hear about the problems that you're having with Tamoxifen.

I have had 2 bouts of breast cancer. The first was 10 years ago, when I had a lumpectomy, followed by Tamoxifen. The following year I developed another primary in the same breast and had a double mastectomy followed by Letrozole. If you think that Tamoxifen is bad wait until you try an Aromatase inhibitor. I had tremendous night sweats on both and joint pain. I had to stop taking Gabapentin, because of a host of side-effects, the main two of which were lack of concentration  and loss of memory.

When I went on to Letrozole, my joint pain increased to the extent that I had to have 2 replacement knees. I stopped taking Letrozole after I had been on it for 6 years (in 2017) and still have pain in all of my joints. Fatigue, depression, weight gain, skin and eyesight problems, and insomnia are symptoms that I still have. Early on my breast care nurse advised me to try taking Venlafaxine (a mild anti-depressant) to reduce the sweats and it did help a little. At one stage I did try to come off the Venlafaxine on my own, but this was disasterous. As with any anti-depressant you have to come off them gradually.

This is a horrible situation to find yourself in. You are doing the right thing by consulting the PREDICT calculator and weighing up both the pros and cons. I am sure that your consultant does realise just how much these drugs impinge upon our lives, but at present, there doesn't seem to be any better solution for trying to prevent recurrence.

Sadly, this is a decision that only you can reach. Whatever you decide upon, I hope that it is the best choice for you.

Please keep in touch and let us know what you decide to do. We are always here for you.

Kind regards,

Jolamine xx

Hi Heather,

I personally haven't heard anything about Anastozole injections combined with Testosterone, but this sounds interesting. You will find that a number of tresatments carried out in the USA are not available here in the UK.

Please let us know if you get anywhere with this.

Kind regards,

Jolamine xx

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