Hello all!
I'm grateful to have found this forum and be able to connect with others going through the same process. I was diagnosed with a basal cell carcinoma on my ear a few weeks ago, which I've had now for 6 months. A week and half ago I had an appointment with a consultant at Northwick Park hospital in NW London after the original dermatologist gave their diagnosis and asked for it to be excised urgently. Up until this point everything had gone incredible quickly, I'd be contacted within a few days for appointments each time and was kept on the 2 week wait pathway. I'd receive letters with correspondence between GP and dermatologist, it would show up on my medical record in the NHS app and so on.
However after seeing this latest consultant I haven't received anything. He said that the wait time for the surgery was 4-8 weeks and the nurse said that I'd be contacted for an appointment and that I would get a MyPreOp questionnaire and gave me a piece of paper about that. Unfortunately nothing has happened since, no link for the questionnaire, no letters, no call for an appointment, nothing even showing that I visited Northwick Park in my medical record, no correspondence from this consultant to the dermatologist or GP.
What are everyone's experiences with waiting for a surgery date on the NHS? Is it normal to just wait an unknown amount of time without anything before they call you up and offer you a surgery date? It feels a bit strange after everything happening so quickly previously and the complete lack of communication is a bit worrying. I understand it's not as urgent as other cancers but still :/ I had considered going private to get it sorted out quickly but I know I wouldn't be able to comfortably afford Mohs surgery and I'm unsure if that would be offered to me on the NHS so I'm not sure what to do now. I've been in touch with the PALS team for the hospital to see if they can find out how long it will take to get a surgery date and I just have to wait to hear back.
Welp one of my stitches ripped through D: had to get an emergency appointment and they actually just removed all of them this morning lol. A few days earlier than scheduled. Hopefully it still heals ok!
Hey all, little update from me. Histology came back and sadly there is still some cancer left :( Going back in for surgery round 2 in 3 or 4 weeks. My wound actually came apart after the stitches got taken out but was healing nicely, so I'm pretty sad that was all for nothing and they'll have to take even more out and stitch it even tighter than before. It's just tough because I was really satisfied with how it was looking, just a bit of a mangy scar but now it's back to the unknown of how it will look and feel afterwards again.
Sorry to read that you need a second operation FreshFromTheGrave, that must have been very upsetting to hear.
((hugs))
Hi so sorry you have to have more surgery. It is very stressful for you to have to go through it again. Hoping all will go well for you.
Thank you all! Just gotta get through round 2 and then hopefully it's all ok. Getting a new surgeon this time too and he seems very experienced and senior.
Welp I think the NHS has forgotten about me again somehow. During the follow up the doctor told me I'd have surgery in 4 weeks and that it would be on a Monday (which meant 18th September) and to expect a letter. Same as the first time nothing came and I have had radio silence since :D Not really sure what's happening at this hospital but I really don't like that it seems to be up to patients to hassle random admin staff to be given the treatment they need and were told they were going to get :/
Not sure what to do now. I could hassle for the second surgery which is going to be worse than the first or I could leave it, maybe it comes back, maybe it doesn't :/
Please Please do NOT leave it. Get on to that hospital tomorrow, Yes these bcc's are not major issues but they need dealing with as soon as possible, the longer they are left the bigger the procedure and scarring is. Let me know how it goes. xx
I'm back in business, got my surgery date for next Monday :D Had to hassle them again and it's like a month and a half after I was originally supposed to have the surgery but better late than never I suppose! Being bounced around between teams like crazy too, the team that was going to do the surgery is no longer doing it and I'm back to my original team o.O which is great, I just don't understand why they say one thing and a totally different thing ends up happening
Anyways just gotta prep for recovery round 2!
My story is similar one of initial poor appointment management from my GP centre and slow response from the NHS to get into the treatment system to finally treatment at the wonderful Guys cancer centre and current follow up reconstuction and ongoing treatment at the also wonderful Broomfield plastics department in Essex.
Timeline:
June 2022 1st GP Appointment
Nov 2022 Dermatology Appoint
Jan 2023 Dermatology biopsy
Feb 2023 Results Infiltrating BCC
May 2023 1st Plastic surgeon Appointment, MoHs surgery required.
July 2023 1st scheduled surgery cancelled (unknown reason)
Sept 2023 2nd scheduled surgery date cancelled (industrial action)
October 23rd 2023 mohs surgery
October 24th 2023 Full layer skin Graft to repair 22mm x 8mm wound on nose.
Recovery : ongoing
My Observation of the process, Front line medical staff are dedicated caring professionals.
Clerical staff organising appointments and communication, mostly overwhelmed non professionals.
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