Patience isn't my biggest virtue!

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I had VIN 3 about 12 years ago which was successfully excised and the addition of CIN which was caught in routine colposcopy's.  Although I regularly check for abnormalities life went back to normal until about three or four months ago when a small lump on my outer labia started to persistently itch.  Some routine pre-holiday topiary and I could see that the small lump was discoloured and whilst not as dark in colour as my previous VIN, looked suspiciously similar.  Perhaps psychosomatically at about the same time I was also getting increased itching around my perineum although no amount of athletic mirror gymnastics in the 'right light' shows any discolouration.  Both have become problematic in recent weeks so.....

After successfully battling the NHS app and the Dr's receptionist I finally got to see a Junior Doctor and whilst I do not mean to disrespect she didn't remind me of a scared rabbit when I explained my history and was navigating her around my affected areas and previous battle scars.  After rather gingerly taking some external swabs and insisting on repeating a smear test, she has thankfully made an 'urgent referral' to the Suspected Cancer Gynaecology Assessment Service, which is now where my lack of patience is apparent with the level of frustration I am currently feeling.  The referral was made over a week ago and on the magic NHS app now shows as being 'overdue' and still not been reviewed.  I contacted the hospital directly today to be informed that the referral has been received, but they currently do not have clinic capacity to give me an appointment.

I am scared, nervous and feeling totally out of control and whilst I absolutely understand the pressures that the NHS are under right now (I work in social care) am I out of order or being unreasonable in my desire to want an appointment as soon as possible?

  • Hi Grannym, I was at this stage end of February, mine was squamous cell carcinoma.  I was shocked and upset and floundered for a few days.  In March I saw the Oncologist,  the Surgeon and the specialist cancer nurse and my operation to remove the cancer and 2 lymph nodes was arranged for end of March.  I would advise you to take a friend to any appointments you have, because you don't take everything in and she will remember what you don't.  I took a friend who went through similar cancer with the same team last year and she's been a tremendous help.  Also, I've found it comforting to join a local cancer group and another one arranged by the hospital.  You will always find someone in this group too who can help, I also belong to a Facebook UK vulval cancer group if you're on FB.  

    I don't think anyone expects this awful diagnosis, I'm 74 and it was the last thing I expected!  mine started through having erosive lichen Planus.  My then partner decided he couldn't cope and ended the relationship.  That was hard but not entirely unexpected.  Surround yourself with positive people, allow yourself a good cry now and again. I dissolved in tears at one of my appointments but they expect this and cancer teams are brilliant!  I'm here to listen and share my experience so keep in touch.