Advice to ladies on letrozole

Hi
After a disappointing consultation with the oncologist, I decided to have a check up with my GP. I found that the oncologist provided no support going forwards and was basically told to just go back to work! But we should be monitored, and there are things that should be checked.
My gp was very helpful and this is what she said:
You should have a bone density test at the start of going on letrozole and then be retested at a later date (about 2 years) see what effects it has on the bones.
You should have regular blood tests, to include a full blood count, vitamin B12, and liver function.
You should also have your blood pressure taken regularly.
All this was done for me today and i did find out that my blood pressure is high and will need to be monitored and will probably need medication.
Don’t allow the consultants to dismiss you so lightly and seek advice and support wherever possible.
Hope this helps other ladies moving forwards.
Sue x

Hi Sue,

I am sad to hear that you appear to have had an experience, which does not follow general protocol. I suppose it depends on the individual trusts and areas.

Post my mastectomy and receiving the histology report - Letrozole was already discussed then with me, as a follow on treatment. The bone density scan (DEXA scan) was done, before I started chemotherapy and will be repeated every two years. When I started on Letrozole post chemotherapy I was also prescribed calcium and vitamin D to support bone health and deal with the calcium depletion Letrozole can cause.

I have access to the Breast Care Nurses now and in the future  - no matter how long ago my active treatment was and willl be - for any questions I may have. They can and will book appointments with the treatment team as and when it might be necessary. Post my active treatment, which finished 26th October 2016, I have been seen by my oncologist 3 further times and am seeing him for the last time in 6 months. Then my GPs practice will take over, but the access to the Breast Care Nurses remains and is the support in place moving forward. 

They have not discussed regular blood tests with me, as I do not have any underying other health risks or issues. Having checked this - there does not appear to be a protocol, that regular blood tests are necessary. Regular blood pressure taking is being done routinely at my GPs surgery anyway and was done even before my diagnosis.

Things like blood tests, blood pressure taking and medication monitoring should be done by the GPs practice and not our oncologists to free up their time to deal with the ever increasing number of new diagnosis.

Sue x

My consultant did not arrange anything other than the letrozole prescription and vaguely mention a bone scan might be requested by my GP. It would not have been. I demanded a bone scan from my GP which disclosed established osteoporosis. It was my GP who then prescribed calcium vitamin D and bisphonates. This is a few years ago but I hope the situation has changed for the better in the meantime. I have never seen an oncologist although I can request via my BC nurse that something is discussed with the onc. and results relayed to me. I get repeat dexa scans every two years. I have to ask to get a liver test done and have not had a full blood count or vitamin count as far as I am aware. I am going to mention these things though when I next speak to my GP  so thank you very much Sue for posting this information.

 

My GP is usually very good and very thorough  so please do not read the above as a complaint - it’s just what happened.

 

Best wishes to everyone.