Can’t access my open access for new Lesion

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Hello lovely Nurses,

I went to my GP about my Fibroadenoma being painful every day and growing and told her I’ve had past breast cancer treatment at the Royal Free. She was mentioning UCLH, and i said I prefer to go back to my team at the Royal Free. (Did not know I had Open Access and thought I need to see GP with new pain).

She ended up booking me an appointment at UCLH. As I wanted to be seen, I didn’t hesitate to go. They were very nice, but did urge me to keep using my Open Access at the Royal Free. They felt the lump and did an ultrasound and found that its a new lesion. They wouldn’t biopsy until they see my scans from the Royal Free.

I left a voicemail on my open access Extension number for my past breast cancer nurse at RF. And I had a different nurse, obviously tired and annoyed with me call me back, telling my my surgeon has retired and I need to choose another one if I actually want to stay with the Royal Free. I was given two other extension numbers that ring out.

Does this mean i no longer have Open Access if my Consultant retired?

Should I give up with RF and make sure UCLH follow up for now with this? They told me in the future I need to go back to RF in the future. It’s been 6 days. Ive got a number to call if i don’t hear anything/forgotten about. I’m taking sleeping pills atm as im worried with the pain, it could be the cancer back. :cry:

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Hi, I would get in touch with PALS at the Royal Free and explain your situation. PALS are in every hospital and it stands for Patients something Liaison Service. They should sort this out. As you have a potential new cancer it should be treated urgently.

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It shouldn’t matter that your surgeon has retired - as for choosing another one I don’t know about you but I don’t remember choosing the first time so if that’s an issue tell them to just to allocate someone or explain the situation to your GP and that UCLH have urged you to go back to the Royal Free and ask him to contact them on your behalf. Alternatively did you keep any of your letters / emails from first time around ? If so check for name and phone numbers / email addresses of medical secretaries as you could mKe contact that way . There may be a default consultant who has taken on cases from your retired consultant . It won’t be much comfort until you know for sure that you’re clear but if UCLH thought this was a recurrence thing think they would have taken further action xx

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Hello lauralondon88,

This sounds like a confusing time for you.

You do not say how long ago you were treated for breast cancer, but if it was within the last five years you should still have the open access service available to you at The Royal Free where you were initially treated. This should not be affected by your surgeon’s retirement. As @JoanneN says you would not usually choose your own surgeon, and another breast surgeon would take over your care.

If UCLH are going to continue to see you, it is understandable that they would want to see your previous scans. However, as this has not been confirmed with you and you have a number for UCLH, it might help to contact them and ask them to clarify if they or The Royal Free will be delivering any further investigations, care or treatment you might need. We would also suggest you let them know that you are in pain and taking sleeping pills because you are worried.

@Shade suggestion of contacting PALS (patient advice and liaison service) is a good one. As she said, they could help support you and prevent any unnecessary delays in accessing the correct services at the appropriate hospital.

We offer a range of free supportive services which you may be interested in. They include face to face and online courses and events.

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Best wishes,

Angela

Breast Care Nurse

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