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.

Just seen this Heather, I so feel your pain. I don't feel life is worth living on Tamoxifen. I've ditched it twice already and my lumpectomy was only in August last year! have some rib pain, which is either referred pain from cording post lymph-node extraction (I have some shoulder impingement, which is also related) or metastasis (my mind leaps to the worst) but I'll know on Friday. I feel so unsupported and don't know where to turn. Hope you're feeling better now, either on or off the supposed lifesaver (which is often far from the truth). 
Fran 

Just seen this Heather, I so feel your pain. I don't feel life is worth living on Tamoxifen. I've ditched it twice already and my lumpectomy was only in August last year! have some rib pain, which is either referred pain from cording post lymph-node extraction (I have some shoulder impingement, which is also related) or metastasis (my mind leaps to the worst) but I'll know on Friday. I feel so unsupported and don't know where to turn. Hope you're feeling better now, either on or off the supposed lifesaver (which is often far from the truth). 
Fran 

Hi Fran,

A very warm welcome to our forum. I am so sorry to hear that you are suffering with Tamoxifen. I have had 2 bouts of breast cancer and had cording after my lymph node extraction. The nurse specialist at the Haven used the myofascial release technique on this area and it improved dramatically. I was also prescribed Venlafaxine (an anti-depressant), as I was told that this reduced some of the night sweats. This helped too. 

I discovered my second bout exactly a year after my first diagnosis and changed over to Letroxole. This caused much more joint pain and eye problems, but was better for my emotional state. I stuck it out to the end and finished taking Letrozole in July 2017, after taking it for 6½ years. I found it easier to discuss my problems with hormone therapy with my breast care nurse, rather than my consultant and she was really helpful. They are always busy, so you may have to leave a message, but they have always got back to me quite quickly.

I am sorry to hear that you feel so unsupported. Now that you've found this forum, you need never feel that way again, as we are always here for you and, know first hand exactly what you are going through. Please keep in touch and let us know what you decide to do.

Kind regards,

Jolamine xx

Dear Jolamine,

Well done with your hormone treatment! That's really interesting advice. It's the emotional/mental effects of the big T that I couldn't stand. Maybe L would suit me better.  And yes the BC nurse has been a huge support in the past - I should give her a call. 

Talk about between a rock & a hard place! Did you have chemo and radio or non-Her2 so surgery and radio only? And both twice?! Well done with your journey. Keep you posted with mine.

x

Hi Franfran,

I was advised to have radiotherapy, but, due to various delays, I wasn't offered it until I was 11 months post surgery. At that point my oncologist still wanted to go ahead, but my surgeon referred me to two research specialists in radiotherapy. One gentleman thought that I might as well try it, but the other was quite sure that it would do me no good. He claimed that I should have had it within 3 months of surgery to be of any use. His arguments were much more supportive and I went with his advice. 

There are still some emotional effects with Letrozole, but I felt that they were better than with Tamoxifen. However, the joint pain was far more severe with Letrozole. I ended up having 2 knee replacements and 7 eye operations while I was taking this. Having said this, we all respond differently to these drugs, so you might be fine with Letrozole. Can I ask your age, as this can influence what treatments you can have? 

Give your breast care nurse a call and see what she suggests. Please keep us posted as to how you get on.

Kind regards,

Jolamine xx