What happens next ??

Hi deebee60, I had my second zoledronic acid infusion yesterday and it was administered in the chemo unit. I am now in remission,  but asked a couple other questions about a scan I was due. The chemo nurse went of to make enquiries with my oncologist. So I would think if you are due to have zoledronic acid, you will still be under the oncology team. I was told I needed a blood test before my zoledronic acid infusion. I think you can still keep in touch with breast care nurse or macmillan nurse as well. I hope you manage to get some support sorted out. Xx

Hi

My situation is similar but different if that makes sense! When I had finished all active treatment after my fist diagnosis in 2021/2022 I felt a little left to my own devices. I didn't receive any further contact from breast surgeon or the breast care nurses in that team. I had already been cared for by the oncoloy team during chemo but radiotherapy was done at a different hospital so I was just sent on my way with a follow up telephone call from oncologist to see how i was. 

I was put on tamofen then changed to lerozole at the end of 2022 and if I'm honest I don't really know why this was I was told in a phone call.

I was having bloods every three months and would usually be told about these at the appointment every three months. 

I had to ask if I should be having a mama gram as be nurse said I would oncologist said no due to regular 6 monthly scan, I was however called for so went.

I was old about zolendronic aci infusion but needed to complete some dental work. I had mentioned in the summer of 23 some pain in my back so oncologist sent m for a ct and I was very shocked to be told secondary bone mets.

It's a bit of a blur after that as the whole cancer machine started rolling again. I don't like to be negative but I didn't really find the nurses helpful, if I rang it was always an answer machine and they would need to speak to someone before getting back to me which could take days....not helpful when I had an infection. My named nurse retired and I wasn't given another.

The oncologist and her team have been much better. After the secondary diagnosis I had bloods monthly sans 3 monthly and an appointment usually monthly.

I was never given the zolendronic acid and with everything that went on I didn't chase it I think I assumed they had changed the plan but a recent appointment with orthopedic surgeon has highlighted I should have had it.

I hope you get sorted and don't be scared to ring and ask questions xx

Hi I am under Guy's hospital and I have immediate access with the breast care team for 5 years from diagnosis.  However it does vary depending on where you live.  Check this out with the BCN team.

I see my breast surgeon once a year which has been supportive.  As I had a double mastectomy I don't have mammograms but I am aware that friends who do have them.  I also was on zoledronic acid infusions for 3 years.  Whilst these were booked by the oncology team  I had to ensure a blood test prior to the infusion.

It can feel that you are on your own.  However I have been able to access support via the Dimbleby centre at Guy's.  I have also contacted Maggies at Bart's Hospital.

If you have a question keep asking until you get an answer.

I hope this helps

Hi deebee60

I have a yearly mammogram and once the results are in I have a meeting with my breast surgeon to discuss the results.  As far as I'm aware I'll also have a yearly meeting with my oncologist as I'm on hormone therapy.

Best wishes

Daisy53