I have come to the end of treatment at the 5 year point and stupidly thought that meant I would have an appt with the consultant to discuss finishing the Anastrozole and any other questions I may have about moving forward. I’ve had my final mammogram then called the team to find out when my appt would be to see the cancer care team and was told that there won’t be one, I’m all done, that’s it finished. I asked when I should stop taking the Anastrozole and if I need to wean myself off it (I have a couple of packets left) and the answer was that it is up to me. I feel a bit lost to be honest. So, for those of you who have also been through this point, did you just stop? Any side effects from doing so? No appts available with the GP unless urgent. Any advice gratefully received, thank you xx
Should also say WLE, Radiotherapy and Anastrozole, ER+ no chemo
I have been on tamoxifen, I can not have letrozole or the like because of my osteoporosis, and I was told I would be on it for 10 years, been on it for about 20 months now.
Can you give your breast care nurse a call and have a word with her to see what she says, or is that who you spoke to?
Thanks for coming back Helena. Yes, I spoke to the breast care nurse. I was told at the beginning that meds would be for 5 years but that I would see the consultant and they would reassess at the end of that time to decide whether it will be extended to 10. Of all the emotions I’ve been through over the last 5 years, you wouldn’t think this little moment of confusion would feel so stressful, but it does ?
Thanks Helena, that’s a great shout (don’t know why my brain didn’t think of that!) I’ll give that a try tomorrow
Hi both, I managed to get an appointment with my GP to discuss my concerns and she was not happy with the advice I had been given. She looked at my records and said she has a letter clearly stating that I will have an appointment with the oncologist at the end of 5 years to discuss meds and that it is not for the GP to decide. She will write a letter to the oncologist and make an appointment for me. She was very understanding and supportive but a bit cross that I was left to feel so helpless.
The general advice these days is that hormone therapy is for 10 years. I would echo Helena’s advice and contact the secretary of the oncologist and book an appointment.
I have only been taking anastrozole for 8 months but I too have been told it will definitely be for 10 years if not longer!! This seems to be the norm now due to new medical research results. I’m happy to continue as long it’s proven to keep working!!!??
Hi Flint, thank you for sharing your feedback, trouble is I have had no final appointment to have this sort of conversation. The 5 year point came and went so I chased to find out when I would be seeing someone and was told that I had no further appointments. The GP has been a star and arranged for me to see the breast care team, likely the oncologist, and I will get some understanding of next steps then. Just waiting for the appointment now. I don’t mind what the decision is as long as someone tells me ‘what next and why’. xx
I hope it gets sorted for you and your mind is put at rest. We all need to have an idea about where we are in our treatment and strangly enough I find it a comfort to know when my next appointment is.
I guess after 5 years you don’t want to be left high and dry all of a sudden so its good to either find closure or know you have had your prescription extended for a few more years.
I’ve only just started on Tamoxifen and have been told to take it for 10 years. So my journey still has a long way to go!!
Hope you have piece of mind soon xx