Newly diagnosed vulva cancer

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Hi, new to posting and new to having a vulva cancer diagnosis. I’ve had a lump for 2 years that wasn’t taken seriously by GP practice. They only referred me 18 months after I first went to them with it. I first went in July 22 and they said although they could feel a small lump it was nothing more than and lump related to age. I was 51 at the time. They didn’t refer me.  I went back in Feb 24 because it seemed bigger and GP referred me on cancer pathway. Despite that the gynaecologist department kept saying it won’t be cancer it will be a cyst etc. after MRI MDT recommended extraction as could only biopsy when removed. I underwent excision of 2cm lump on July 15 and on Aug 21 gynaecologist informed me it is very rare cancer. MLAV which is mammary type cancer in vulva area. Only around 30 cases ever. I feel totally let down by health services, why were they not more curious and conscientious, arrogant that they knew this would be just a cyst when it was so serious. 2 years exactly from first going to GP to receiving diagnosis. I’m devastated and waiting for PET scan results to see if it’s spread. I’m just so sad and scared. If it’s not spread I’m going back for WLE on 18th sept. 

  • Hello Storm, I was diagnosed in 2022 with vulva cancer after being told on 3 occasions I had a water infection! On the 3 time I was examined by a practicing paramedic who told me I had a burn the size of you thumb so issued with barrier cream and another lot of antibiotics. Cleared up and a month later same symptoms so saw a gp at my surgery and was referred to the 2 week pathway.  When I saw the consultant at the hospital he told me straight away that it was cancer and I would need biopsies, cameras, chemo, radiotherapy and reconstruction surgery! After the MDT meeting my case was taken over by the Royal London as this cancer was very rare as it was growing outside the body.  Have a look at my profile which explains in more detail. I had a WLE. As they thought the tumour was under 1mm, but when it was removed it was 2.8mm and although they had clear margins I had to have a2nd op to remove the lymph nodes to check it had not spread.  I was very lucky it had not spread and I am now 2 years on and now have 6 monthly check ups.

    what I found very helpful for all the anxiety and stress was an inhaler from the complementary medicine team at Bart's trust.  When you feel stressed you use it and it calms you down. It is only herbal but very effective. Speak to your cancer nurse they can refer you . They also offer other treatments all of which help whilst waiting for the surgery.  Wishing you all the best with your scan and operation. X