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?

  • You are not being unreasonable in the slightest. I completely understand how you’re feeling as I’m in a similar situation myself right now. I don’t know your financial circumstances but have you considered calling your local private hospital? They too are busy right now but it’s worth a try. Other than that, I’d check your lump regularly and any changes you need to speak in your GP about as they may be able to help/advise. Do you have a gynaecologist dept you can speak to too?

    I do feel for you as anxiety doesn’t help in the slightest. My current mantra is ‘stay calm and positive’.

    I’ve previously had 2 WLE’s for VIN3, clear for 5 years and after  a smear test 1 month ago, I how have high grade dyskaryosis combined with the dreaded itch down there. I’m waiting for a colposcopy appointment, but as we know it’s easy to focus on a worse case scenario.

    Sending good vibes to you,

    Good luck Fingers crossed tone1 

    Supersare 

  • Bless you & thank you Supersare, I guess it just helps to know I'm not alone.  My husband has also now been waiting over a year for a staghorn kidney stone operation and a bladder stone blast.  I contacted all the private hospitals in a 100 mile radius (we live in Cornwall) for his procedures and they all stated that they are still supporting the NHS and have limited capacity to take on private patients.  I guess I'll have to practice the patience thing and give it at least the initial two weeks, before I go down that route.

    Unfortunately my previous VIN3 was treated up in Sheffield and Grimsby before we relocated my only regret of moving to Cornwall is the woeful healthcare system down here.

    I am glad to have an amazingly supportive husband, who in addition to my own mirror gymnastics is also eagle eyed on monitoring for any changes.

    So positive pants on and accept that I things will happen as they happen

    Thank you again & sending good vibes back to you

    Leeleebelle

  • So I chased my referral and was seen last Friday.  Biopsies taken there and then of a legion on my left labium majus and perineum.  He also noted an area of concern on my clitoral hood.  The consultant said that due to the lesions on my perineum he may have to involve his colorectal colleagues for a high resolution anoscopy.  It's the gift that just keeps giving!

    Again with the patience thing and I know there is nothing I can do, but I would wish I could fast forward to the biopsy results so I know what we are dealing with.  

  • Hello Leeleebelle,  I was wondering how you've got on?  I'm living in Devon and have just been diagnosed with vulva cancer.  I saw a dermatologist at the RD&E hospital in Exeter on 28 January, she diagnosed Erosive Lichen Planus and ? Squamous cell carcinoma.  I was referred for biopsy and my Consultant rang me last Thursday to tell me she had referred me onto The multidisciplinary team to look at removing it.   It's good to chat to people who live fairly close by and have similar problems.

  • Hi Sandyann,

    Your message is well timed, my diagnosis came through as VIN3 and an area with squamous cell carcinoma and am having a partial vulvectomy on Friday. They hope to get good margins with the operation, but as I am sure you understand it doesn't take away the anxiety. I'm grateful that there is no AIN and seems to be affecting both labia majus, so the vain part of me hopes the end result is at least even (is that wrong?).  

    Please keep me updated how you get on, I agree it would be good to chat

  • Thank you Leeleebelle, will definitely keep in touch.  I'm seeing my Dermatologist on Friday to see how I've progressed with the Lichen Planus and for a chat.

    Good luck with the partial vulvectomy.  I'm hoping this will be my end result too.  Will definitely keep in touch.

  • Hi Leeleebelle, How did you get on with your surgery?  

    I saw the Consultant Onco!ogist and my Cancer nurse specialist last Thursday, also had a CT scan with contrast on the same day.  I am to see the surgeon and have a pre-op assessment on Friday 1 April before I go in for surgery few days later.  I found everyone so very kind and helpful.  I had a friend with me who went through similar experience last year for Bartholin gland cancer, she's been wonderfully helpful and supportive.  The oncologist told me that, providing CT scan doesn't show any abnormalities, the surgeon will, just before my operation, inject around the cancer with some sort of radioactive material.  This will travel to my lymph nodes and, with the aid of a device that reacts to the radioactive material, show whether the cancer has spread to the lymph nodes and they will be removed.  I'm guessing this is something similar to what you've had.  He also told me that, because of my age and living alone, to prepare for an overnight stay.  I'm going to have all of this done at the Women's hospital part of the Royal Devon and Exeter hospital.  Sandy x

  • Hi i think o maybe at the same stage as uou a y ad is yhanx 

  • Hi Grannym.  Not quite sure what stage you're at.  I had a partial vulvectomy and removal of 2 lymph nodes.  Unfortunately, traces of cancer were found in these, so I'm going back unto hospital next Thursday for the removal of another 18-20 more lymph nodes.  I've bern told to prepare for a stay of 14 days.  If you have any questions about my treatment please feel free to ask xx

  • Hi sandyann got a call today to say biopsy shows it’s cancer but will need op to remove tumour have a meeting on Thursday with them where they will tell me all the steps going forward..not looking forward to that didn’t expect it really x