Conflict of treatment

I am far from happy with MacMillan nurses.

I have had two operations within weeks of each other to remove a 1.7mm tumour, nipple, 13 lymph nodes.

surgeon gave me a prescription for Letrozole 2.5mg and referred me to the pharmacist on the hospital site and to start taking one per day for 5 years. Further test results to follow to determine if I’d need radiotherapy and chemotherapy or just radiotherapy.

MacMillan nurse straight after being told that, told me Not to get the prescription for Letrozole as I’d have to stop taking it when radio/chemo starts. I asked her why then had my surgeon given me the prescription and said to get it then? I decided to indeed get it dispensed but when I got home I was undecided if I should take it. A week went by and I decided to start taking it.

Another appointment followed with a consultant where I was told I’d have a scan then a 5 day course of radiotherapy and chemotherapy was not needed. Then I’d be prescribed Ibandric acid which I’d need to take over 3 years, but to see my dentist as it can lead to tooth loss and that I do not have to take it. I then asked him if it was ok for me to be taking the Letrozole and he said that of course I should be taking it….so that MacMillan nurse was basically Wrong.

So, I did see my dentist ( Private ) and he advised that it just doesn’t affect teeth, but bones as well and like my consultant he said that I do not have to take it.

Well…..Mac Millan nurse said that it was Nonsense and that I should take the Ibandric acid. I asked why two professionals said that I do not have to, that they had both pointed out the risks. I got nowhere with that MacMillan nurse and bearing in mind that they had told me not to get the prescription for Letrozole when my surgeon said to get it…..

I am now questioning the radiotherapy which will be arranged in a few weeks. I’m having enhanced problems with my joints since starting Letrozole and I discovered that there is an alternative. Again MacMillan nurse shot me down. No way…because I’m post menopausal it’s Letrozole full stop ! 

I have zero faith in MacMillan nurses and their Own opinions. It’s My Life, I want Quality of life not quantity, I’m 68 and I refuse to be pushed into a decision that I am not comfortable with. Why do these nurses think they are bone surgeons and consultants?