The Right to Refuse Tamoxifen

Yes I can chat about this but not just yet. I'm on Tamoxifen. Tried Letrozole which was worse. I am in agony with my back, blood test done to day. I'm going to have an MRI. I feel terrible at times because of Tamoxifen. They are playing God in a way. They are all powerful. Expect us to read up everything ourselves and then tell us not to believe it. 

I’m taking letrozole as part of my plan. I’ve been on it a year now and because I’m also on abemaciclib it’s difficult to know which drug causes my side effects. Having said that, I don’t consider the side effects to be severe and I cope very well.   My oncologist told me that the Letrozole is doing most of the work in helping avoid recurrence.  I was told Letrozole gives 70% protection and abemaciclib up to 30%.  I’m high risk of lobular cancer returning so I’m taking all I can to help prevent that happening.  

Everyone has a right to choose what to put in their body, or not as the case may be. However, I’m putting my trust in my oncology team who are giving me the best chance of survival. 

And I would like to add that to be bullied into taking medicine is unacceptable.  When I was first hesitant, I was left to make my own choice but if you feel you were bullied, you could take it up with pals.  I wish you well. X

I agree with you, if it's working why tamper with it. The difference for me is that the first oncologist told me I don't have osteoporosis because it's only in my wrists. I showed him the dexa scan and he still wouldn't believe it. 

I took Letrozole on his advice, thought well he's the expert, 3 mths later I switched to Tamoxifen because my knee was seizing up. Now my back is the problem. 

I've just had a blood test, to rule out some potential causes. I'm going to have an MRI. If it's degenerative or osteoporosis that will be better than what I'm really hoping it isn't. Tamoxifen really doesn't suit me. If my results are ok I am going to enquire into taking a reduced dose. 

I already have osteoporosis and hormone blockers are not good for this. Our reactions are individual. Hormone blockers and the stress of cancer do affect memory and cognitive function. For me it's less important having a woolly head but for those who are still working it prob is an issue. Hope for adapting well to our issues and finding ways to thrive. 

I was on Letrazole for 4 months but side effects were awful - my back got so bad I had an mri to check it hadn’t spread as I couldn’t get in out of car or tie shoe laces etc.) mri said just degenerative disc disease so tablets caused problems. Oncologist told me to come off it.. I said I was scared to do that and he said surgery and radiotherapy meant I was 97-98% clear reoccurrence and that Letrozole only gave me another 1% . I have been off it a month and feel brilliant again! 
oncologist said he’d call and discuss in 2 months.. really not sure I want to take any of them if my quality of life is that bad on them.. xx

Hi Sabrina22 and JulesD. I’m sorry to hear you have had your struggles with letrozole. I agree with what you say. It’s all relevant and we are all different.   I’m lucky that my dexa scan came back with no sign of osteoporosis and I’m fortunate that I can tolerate letrozole.  But I do understand how awful it must be for you both to suffer back pain and of course it’s a matter of quality of life, so difficult decisions have to be made.  I wish you both well and send my  best wishes. Xx

Hi Angrylady and Sabrina22, sorry you are both having issues. I agree that everyone has a choice whether they wish to have treatment or not for their cancer and it is a very personal choice. No patient should feel bullied into making the choice. Things should be explained in a proper manner and yes drs etc should have a good bedside manner and support the decision you have made. 
There have been various studies and papers on chemos, radiotherapy and hormone blockers and non of these would be suggested or used if there were better options. Our medicine for cancer treatment has come a long way. 
I had the whole hog, surgery, chemo, radiotherapy and now I’m on tamoxifen. The predict tool I looked at and decided it didn’t work for me giving such vague percentages. Whilst surgery can remove the tumour and the surgeon can say all the cancer has been removed, he/she has absolutely no idea for certain that none of the cancerous cells have broken away and travelled around your body. Hence the offer of chemo to kill the cells that maybe floating around. One doesn’t have to take it if one doesn’t want it. Radiotherapy just focuses on the area where the tumour was. Again no guarantee it will kill off all the cells but the probability is that it will. Again one doesn’t have to take it if one doesn’t want to. Hormone blockers they are offered to try and prevent reoccurrence. No guarantee that they will. 
There is no guarantee in any cancer treatment that it will work and get rid of or prevent reoccurrence. The medical world are still working through things and studies are constantly going on in the background. These studies take years in order to get a good picture of how treatments are working. 
Yes all cancer treatments have side effects some serious some not so serious. We are all different and no one knows who will or won’t react, but we are made aware. Even paracetamol and ibuprofen have serious side effects but people take them and don’t think twice. 
I wouldn’t say my treatment was / is a breeze but  I would rather be giving it a dam good go in order to help prevent reoccurrence. Maybe 5 years down the line I will be saying - well that was a waste of time or maybe I will be saying well all good so far. Who knows - absolutely no-one. Cancer picks on anyone it doesn’t care and all we can do is our best to try and eliminate it in any way we can. Perhaps in the futuristic world there will be amazing cures without side effects but it certainly won’t be in ours. 

I wasn't offered chemo. I agree there is no guarantee of anything just best options based on research. I read a study about halving the dose of Tamoxifen. I am going to ask about that in Feb at my follow up. I have to be able to function but also stay alive as long as possible. 

Thanks it all helps to think it through. X

Definitely a personal choice, I am on letrozole, barely tried tamoxifen and switched back to letrozole.  My legs ache and I now have a frozen shoulder, I wonder if that’s related.  
the only thing I would say about predict is that it is life expectancy rather than recurrence.  The recurrence stats I saw were scarily high, so I take my pills every day.  

It’s frustrating that stats predict to 5  or 10 years. I would really like to see beyond that! 

I know, that's why I keep going with the pills. The research just wasn't funded for longer. I have friends who have had breast cancer, one twice and are still here 18 yes later. 

I hope to see at around for my son and family and myself I should say. 

Hope and prayers.