Thanks for this.
To be honest i just feel like i've been left to it.
I saw my surgeon who gave me the news that he had taken clear margins and i'm sure he said he would sign me off. Not had any oncologist follow-ups, had rads for 3 weeks and got a call from them a week after.
I have been given a list of appointments for yearly mamograms but apart from that nothing really.
The hospital have been really good with the treatments i am not complaining on that front, just the follow up care plan i feel is lacking.
Some hospitals have switched to "Open Access" following the end of treatment , so instead of having follow up appointments at regular intervals with your surgeon/oncologist, you can contact your breast care nurse if you have any worries which may be related to your treatment.
I finished my treatment a year before you, in July 2020, and saw my oncologist in October 2020 and expected to see him for reviews annually thereafter (with annual mammograms in May, the anniversary of finishing my surgery and an appointment with my surgeon at that time).I saw my oncologist again in October 2021 and all change! He explained they had switched to this system which apparently patient groups had lobbied for , and the idea is if you have any concerns relating to your treatment, medication, or possible symptoms of recurrence, you can bypass your GP and go straight to the Breast Unit via your BCN. You will still receive annual mammograms, although at my hospital, I will just see the radiographers until year 5 when I will see my surgeon again.
I admit I had quite a wobble as it wasn't what I had expected from my original understanding and felt my arm bands and lifebelt had been removed and was being left to float on my own! It's a security blanket to know you are being checked up on and can discuss any concerns, particularly as ongoing medication can cause different side effects as time goes on.However, I have (slowly) got my head round it and can sort of see the logic-although I really would like to see him every year for reassurance!-and have already had reason to contact my BCN about something and she was very helpful. I'm on Letrozole for 10 years and my oncologist assured me I remain his patient during that time, and we discussed the sort of situations when I would contact my BCN and when I would go to the GP.
I agree with Evie that it would seem sensible in the first instance to contact your BCN, particularly as you have so recently finished treatment.If nothing else, I think NICE guidelines state you should be given a written care plan when you finish treatment and it's not unreasonable to ask who your main contact should be and what sort of follow up you will have.
Hi Jo - I would definitely give them a call, it isn’t long since you finished and reasonable to expect that you might have questions. Alternatively you could call the nurses on here if it’s a medical question they might be able to answer. The number is at the top right of the page - 08088006000.
I hope you are recovering well. I hope you manage to get an answer. Evie xx
Hi @Jojo1447 - I don’t know if there is any official guidance, but I contacted my BCN team about 3 years after treatment and they were happy to talk to me. It wouldn’t seem fair if we weren’t supposed to call them as we never know when a question or issue might come up. When was your treatment? Evie xx