Assessing Risk of not taking Letrozole - NHS Predict and Oncotype Test?

I had a mastectomy and reconstruction in May.  The cancer was found through screening and the tumours found were grade 1 (seven very small) and there was no movement into my lymph nodes.  My cancer was oestrogen positive.  I was told that there was a low risk of reaccurance.  I am 54 years of age.

In June I was prescribed Letrozole.  I have found the symptoms pretty awful with sweating, crying, anxiety and difficulty sleeping.  My oncologist has been helpful and added Gapapentin to the mix.  Whilst this has helped to some degree I am left being very tired and still pretty sweaty.  

Whilst I am prepared to keep on the drugs for the time being I want to explore whether I might come off the drugs altogether.  My risk of reaccurance is low from the NHS predict tool and my bone density scan showed that my bones are not great (on the low normal). I wondered whether anyone else has thought about assessing risk beyond the NHS tool.  I had thought that the oncotype test might be of use as it specifically analysises your breast tissue but this is unclear as it mostly seems to be used to assess the need for chemotherapy.  Anyone else explored about looking at risk of reaccurance against their current drug treatment and if so what tools did you use?


Hi Bella, i am on letrozole too and really struggled at first. I still have aching feet and knees but find keeping active helps. I also take a loratadine antihistamine each day and buy high5zero tablets which mix into a rehydration drink with 750mls of water. I read about both of these things on this forum and they do seem to help. I am 51 and although i know recurrence figures do fluctuate i have 3 children so feel i will persevere as long as i can with the tablets. I had my first day back at work today and i am trying to stay positive. Ask for all the help and advice you need and also there are other types of tablets you can take apart from letrozole. Also check the brand that you are taking as it can make a difference. I request the ACCORD brand from my chemist as that is the one that lots of people on here say causes the least side effects. Good luck and i hope things improve soon for you xx

Hi Bella, i would be really interested to hear what the other oncologist says. Would ypu let me know please xx

Hello Ladies, I thought I’d add my experience on here. I had a single mx and immediate diep recon on July 4th. I had a 7mm grade 1 stage 1 cancer and a tiny area of DCIS. At my 3 week post op appointment last week I was prescribed Letrozole and when I heard about the side effects and read about people’s experiences on here, I was very sure I didn’t want to take it!! The benefits didn’t, for me, seem to be great enough to risk the side effects. I used the NHS predict tool which showed a very low risk of recurrence and so I discussed my fears with my oncologist today and asked her to give me a more personal risk profile rather than just following a standard treatment protocol. She thankfully agreed that my risk was very low and that I didn’t need to take the letrozole. I am very relieved indeed and have asked for a referral to the oncology dietician to see what changes I can make to my diet to help keep my oestragen levels in check. I realise that it’s not the right approach for everyone, but its a question worth asking .