Perianal Lump

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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  , 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 

  • Hello John

    I am relieved to hear your results but am sorry about the manner in which you found out.  In my case on the patient portal at my treating hospital, there are never any letters discussing results/treatment plans but there are results of blood tests and appointment letters.  When I have any scans, exactly a week later I have a face-to-face with the oncologist who gives me the results, and then within a couple of days, on my GP's patient portal, I can see the resulting letter that my oncologist has written.  I outline this because it isn't exactly difficult to do things in a certain order,  But what has been totally omitted in your case is you weren't given a follow-up appointment after your scans which I find incredible, given how serious it might be, never mind completely nerve-wracking for the patient.

    Hopefully you will hear something very soon and be moving forward with your treatment plan.

    Irene x

  • Hi Nicola 

    Thanks for replying and I hope you’re feeling ok.

    I received a phone call yesterday from the hospital and I have a F2F appointment next week on 27th Dec.

    When I spoke to the colorectal nurse she explained that the margins were clear albeit less than 1 millimetre so the Consultant is considering  a wider excision to take more healthy tissue. Less than 1 millimetre doesn’t sound that clear to me.

    It will mean another operation and probable Chemo /Radiation to make sure no cancer cells are hiding.  Does that sound about right?.

    Kind regards

    John

  • Hi again John ( ),

    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