Hi Guys
Hope and pray you guys are feeling the best you can under these difficult times.
As a result of my excision/biopsy result for SCC in the Anal Margin I had a MRI and CT scan on 8th December.
I don’t know if this is good advice but I hadn’t heard anything from the hospital and on the 13th December and I went onto the NHS app and somehow I was able to access by GP’s medical record. I scrolled down and there were different headings one of which was documents.
I clicked on that and noticed that my GP surgery had received and scanned 2 letters on there from the hospital dated 13th December detailing my Cancer Diagnosis and the staging and also the results of the MRI scan and CT scans which thankfully were ok.
The last paragraph on the letters stated that Wide Local Excision will be considered and if not amiable I will be referred to Oncology for Radiotherapy.
The point I’m trying to make is I wasn’t told about the results of the MRI or CT scans or about possible further treatment.I knew about the SCC diagnosis but not the staging or type etc. I’m glad I did look as I was able to ring the hospital and got some information I was looking for.
I know the staff at hospital are under a lot of pressure and I would never criticise the NHS but I do feel we should be given results as soon as possible.
John
Hi JayC , I’m sorry that you had to learn of the update on your results this way, it’s really not good enough! The failure to deliver results to patients is an ever increasing problem it seems! I also had a local resection as first line treatment although because of a narrow clear margin on a tiny portion of my tumour so I went on to be entered into a clinical trial (PLATO) which involved a reduced course of radiotherapy (23 opposed to 28 days) & the standard chemo (day 1 infusion of mitomycin followed by oral capecitabine twice a day each day of radiotherapy thereafter). I really hope you get a face to face appointment soon so that you can discuss you treatment plan in full.
Nicola
Hi again John (JayC ),
I’m well thank you, I’m a little over 5 years post treatment & was discharged back in June this year… The clear margins following my surgery were 4mm around the majority of my tumour & the area that lead to further treatment for me was 1mm, my surgeon referred me onto my oncologist who explained that the treatment for me was belt & braces, an insurance policy for a cancer free future for me, he then offered me into the PLATO clinical trial. The PLATO trial has several different legs, mine was reduced duration (23 sessions instead of 28) & the radiotherapy was of a slightly lower strength. It would be worth asking about clinical trials if you’re referred onto oncology following your surgery.
Wishing you all the very best of luck with your appointment on the 27th. Let me know how you get on.
Nicola
