I was first diagnosed with breast cancer in 2000 and treated with a lumpectomy, radiotherapy and 5 years of tamoxifen. In 2016 I was diagnosed with metastatic breast cancer with pleural and nodal metastases. I was prescribed Letrozole and very much appreciate how fortunate I am that the treatment has proved very effective and I have been in remission for some time. However, I also understand that Letrozole is expected to eventually lose its effectiveness but have been unable to find information about how long it might remain effective; my oncologist has said the average is about 2 years but he does have patients who have used it for many more years. Has anyone taken it for longer than I have?
Additionally, my oncologist now wants my CT scans and reviews to be annual rather than every 6 months (this was raised pre-Covid). I do not feel comfortable with this given that I feel I will be getting nearer to the point at which Letrozole will become ineffective and it might be almost a year before this might be picked up but does anyone else have experience of review patterns at this stage of treatment?
Hi, I think there is a lot of conflicting ‘advice’ floating around. I was told 4 years when I was first diagnosed…an AVERAGE of. I have been on Letrozole since October 2017 and am still jogging along. ER+, HR-, 3cm tumour, full node cIearance, 25 rads. 4 mets in my lungs.
I have changed brands several times as side effects became problematic. My Onco has repeatedly told me that no one, NO-ONE, can guesstimate how long a person can stay on one treatment, despite averages, and if my mets decide to go walk about, or side effects become unbearable then he’s got a lot more tricks in his little black bag! ?. I have a friend who is now NED who took Letrozole for 10 years with no side effects whatsoever …I was very jealous! My take on it all is to keep plugging along, as best I can. Living each day as best I can, and leave the worrying up to my Onco. I receive 12 weekly scans with contrast , and am happy about this. If my Onco were to increase the length between the scans I think I may jump up and down for joy! That would mean my medical team had thoroughly reviewed and investigated my current status and were happy to allow me to go a bit longer. If you are unhappy then I think you need a frank discussion with your Onco as to why this has been suggested. Hopefully there are good positive reasons.It does seem to me to be a very big jump from 6 months to 12 months. Im on 3 monthly, so go figure? As you know, worry and stress adversely affects cancer, so best get it sorted so you are back on an even keel. You are entitled to a second opinion, and to change hospitals if you are dissatisfied with your treatment.