Refusing tamoxifen

Tamoxifen/hormone therapy side effects may be minimal for some, but not for others.  The same as chemo and radiation. 
There are no guarantees either way.  I did pretty good with chemo, and radiation I found was just a nuisance driving there. 

Tamoxifen is the thing that has given me grief to the point of ready to throw it in the bin.

Constant bone pain that does not respond to pain killers. I take, fish oil, calcium, magnesium, glucosamine and a ton of vitamin b, c and d it hasn't done one thing to help. My skin is ridiculously dry all of a sudden and age spots starting to appear rapidly. 

 The worst part is brain fog, blurred vision, poor memory, my sentences come out backwards half the time, poor recollection for words, disorientation in places that I don't know very well and pretty much total brain shutdown in high stress situations.  Makes working very interesting to say the least. 

I'v had two brain MRI's to make sure it's not mets which are all clear

Honestly, if someone said to me "Go do another 6 months of chemo and you will never have to take this stuff" I would be there in a heartbeat.

I took three weeks off Tamoxifen over xmas and all but the bone pain disappeared.  It did back off a lot but I don't think I was off the tablets long enough for it to go completely.  My brain was clear from day four and vision improved as well.

I had a chat with my onc the other day and was very politely reminded about the amount of lymph nodes involved and that the ER/PR stats were at 90%.

So, to live for 10 years feeling like crap for a maybe, or, 10 years feeling normal for a maybe? That is the question nobody knows the answer to.  Very sad to be scared of your own hormones. 

Thanks for your kind words, Afraser. Yes, it is the question that will never be answered. I didn't say that I was taking alternative aromotase inhibitors, prescribed by a naturopath. Yet another false sense of security that I was doing enough. 
It is a difficult decision because I know of women who took that path without any reoccurence so far. Being HER2 positive probably goes against me as well as I've been told that that makes it more aggressive. Such a maze of decisions we have to make. 

Dear nelliejs
So sorry you are in this position but you have just articulated the clincher argument. Whether Arimidex would have helped or not is of course unknowable but thar doesn't help much. Thank you for sharing this information, it's an important aspect of the difficult choices we may have to make. 

I had chemo, double mastectomy, radiation and Herceptin after original diagnoses in 2012. I refused to take Arimidex as I was so sure I had got rid of that cancer forever. Got diagnosed with bone metastases in 2016. I wish, now, I had taken Arimidex. I think it would have helped as my tumour was oestrogen triggered. As said before, doesn't matter if your ovaries don't work anymore, your body will make it in other ways. There are supplements you can take to help with the side effects of the aromotase inhibitor. 

I am sticking with Tamoxifen even though I am just post menopause. It is the lesser of the two evils in bone degradation and since my dad has metastasized bone cancer, I might need all the help I can get with Tamoxifen not being so hard on bones. I no longer entertain statistics since it was a 12% chance of getting breast cancer and a 0.46% chance of getting Tinnitus while on Tamoxifen and I scored both.
http://www.cancerresearchuk.org/about-cancer/cancer-in-general/treatment/hormone-therapy/osteoporosis

My cancer was estrogen positive 30% progesterone negative and Her2 positive. I have had double mastectomy, chemo, rads and am still having herceptin. I am only 38 and was pre menopausal before cancer so am opting to get my ovaries out. This will change what tablets I will need to take after so it's worth talking to your oncologist about options. 

I'm on Tamoxifen, I take it at night and have barely any problems :) 

Take the Tamoxifen. The side effects are minimal and easily managed.

Hi @Jailbirdstreet have you received a copy of the BCNA My journey kit as I think it is covered in there as well as a BCNA online information sheet about why we need hormone therapy . I found the My Journey kit  really useful to help me think of questions I should ask my medical team. PS Many people on here I have read swear by Powdered Magnesium for muscle aches.

I have been on hormone therapy 6 months - an aromatase inhibitor called Letrozole- yes there have been side effects but manageable thus far.I too was very worried about this aspect of treatment .I did not have chemo just radiotherapy.The members on this site have helped me a great deal with managing side effects and will pitch in if you decide to go ahead and have concerns including me.