Has anyone had problems with their post surgery /chemo/radiotherapy follow up? I finished my radiotherapy in September 2023 after my chemo which was july/August time and my surgery was first back in March '23. I already had a number for the breast care nurses which i continued to ring if I had any problems. I had started abemaciclib around Christmas 2023 and had regular phone appointments with a nurse, so could also ask her questions if need be or report new symptoms. I finally had a meeting with a nurse who works with my surgeon and introduced to the stratified follow up January of this year! Over a year late in my opinion. This aside, I felt relieved I finally had the right numeber to call and a nurse assigned to me. I have used the number a few times. The first time my nurse answered and things dealt with quickly. The second time, I left a message- had a call back from a different nurse, saying I should talk to someone else. I had to insist that this number is the number I’ve been given and that my nurse is my point of contact. The third time, this morning I sent an email saying I thought I’d found a lump. I had a call back, which I missed. The message left was I had 2 options either pop to the Royal Free or if that was too far to ring my surgeons team to arrange an appointment. Now am I not ringing my surgeons team? I Have called back to say I thought thats what I was doing and could they let me know how to go about making this appointment. I haven’t heard anything back as of yet. Sorry for the long post and thankyou if you’ve made it this far! I really feel like I’m not being given the support I should have and I still feel like I haven’t got the right contact number or email. It takes a lot for me to contact them and I’m not finding it easy to get hold of the people I need too.
That’s very frustrating . I don’t know why they wouldn’t give you the proper contact details for your BCN - I can contact mine easily enough .
However i had no routine follow up appointments with my BCN after radiotherapy - and from what others have said I think that’s standard . Our BCN service runs a local support group that meets 4 times a year and there’s always a BCN present there so that is another way that we can access the service - not sure if there’s anything like that near you ? I think I’m quite lucky with the service we have here.
As you have had a message saying to get in touch with your Surgeons team you could ring the hospital switch board / operator and ask to be put through to the secretary for your Consultant or it may be one for all of the Breast Consultants . You could also ask if there’s another number for the BCN or if they have a mobile number or pager as sometimes they’re only in the office to pick up messages once a day . Make sure if you get an automated answer that you ask to speak to the operator - the automated system at our Trust is hopeless. At our Hospital sometimes one number when it’s not in use seems to be given to another Dept. - I wonder if that’s happened here and that’s why you were told to ring a different number .
Some Hospital websites have email addresses for Consultant secretaries as well .
If you’re still having problems explain it to your GP and get them to fast track you back to breast clinic but hopefully it won’t come to that.
Very scary when you think you’ve found another lump which also happened to me and turned out to be an oil cyst . Hope you are able to get it sorted soon . Xx
Thankyou, we don’t have regular meetings either and I don’t think we have a local support group but honestly it’s not something I would attend or be able to attend anyway. Most of these things happen when I’m at work. I may have another number on the front of my chemo diary. If I don’t hear back tomorrow, I will give that a go or look on the website. Thanks for your reply, some helpful tips x
It’s a shame that it has to be such hard work when you’re just looking to get help and I hope you are able to find some. Xx