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,

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

Thanks for the welcome Jolamine! It's so refreshing to be able to talk with other women fed up with the status quo in in BC treatment. While I'm grateful that modern medicine has kept me alive, we have to keep pushing for better quality of life. I'm wondering if anyone in this group has heard of or has any experience with subcutaneous injections of anastozole, an aromatase inhibitor, combined with testosterone to counteract the nasty AI side effects? Testosterone has also been shown to provide additional protection against BC recurrence. I found out about it when I was googling alternatives to stupid, stupid tamoxifen. Here's one reference to it: 

www.ncbi.nlm.nih.gov/.../

I asked my oncologist for it. She was impressed by the study data but said it wasn't commercially available. I found out that the oncologist who did the research does prescribe it to thousands of her patients in the US - Ohio to be specific. I'm going to reach out and see if she knows of any practice closer that might prescribe it. Honestly, I would pay out of pocket to try it.

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