Living with aftermath of Vuvlar Cancer & Lymth node removal

Just over afew weeks, I underwent a posterior vulvectomy and bilateral groin lymph node excision (just my sentinel ones) after cancer was discovered following the removal of a small lump on my perineum. was diagnosed with Vulvar cancer/ Squamous Cell Carcinoma. A biopsy had previously indicated VIN 2-3, and since the margins weren't clear, this was deemed the best path forward.

The recovery process has been incredibly tough, and I feel like no one around me truly understands what I'm going through. I often find myself crying at night due to the pain, compounded by the unsettling reality that my body may never feel the same again. Being in my 30s, it has been difficult to come to terms with the impact of the surgery, which has been far greater than I ever anticipated. To make matters worse,

I've been dealing with infections, significant swelling, and I've lost all feeling in my right thigh, which I fear I may never regain. my groin is so swollen and being told could take long time to go down- or may need to be drained and even physio. I am adamant I have and can see signed of lymphoedema already :( Any suggestions to help prevent or limit? 

Sometimes I feel guilty for expressing my struggles, knowing there are so many others who face greater challenges including chemo and radiation. I recognise how fortunate I am to have only undergone surgery thus far. I pray for positive results, as I’m not sure how I would cope with anymore bad news. The anxiety over potential recurrence is always lingering. Given my track record, I know that rare things often happen to me, so I remain cautious.

I am waiting on my results and scared incase cancer has spread. I’m also scared if no further cancer has been found, how I’m going to cope without the fear of worrying it’ll come back because it does have a recurrence rate and most people I see has come back :( 

I don’t know really what I’m writing or what I’m asking as my heads a little all over. 

  • Hello

    I was diagnosed with stage 3 vulva cancer at the age of 36 and like you I had a total vulvectomy and sentinel lymph node removal. I eventually had to have all my groin lymph nodes removed because it had spread. I had a lot of swelling in my groin after this and I had to have some fluid drained in the end.

    If you want to chat about it or if you have any questions feel free to message me on here or privately.

    X

  • Oh gosh it sounds like you’ve been through a lot to face all that. How are you doing now?

    I was told mine was 1b provisionally but they cannot grade or confirm till my pathology report comes back from this surgery to confirm. My scans prior looked ok so praying it hasn’t spread but I don’t know I can’t help but have bad feeling it has. Did you have scans etc before your surgery? 

  • I had some biopsies taken before my first surgery which confirmed it was a mix of cancer and VIN 3 but the scans came after the surgery before I started treatment.

    I'm okay now.... nearly 3 years on from the end of treatment but I'm just dealing with the side effects of that now so menopause, bladder problems etc..

    It's totally normal to feel anxious whilst waiting for results.... it's just hard waiting.

    Xx

  • I had a shock diagnosis last year as what I thought was the labia fusing was actually a 4 cm tumour.Had total anterior vulvectomy and bilingual lymph node removal and spent 3 weeks in hospital- had wonderful care before and since.

    Luckily my results came back clear and just been for my 2nd 3 monthly check up. Have had lymphodaema in my legs and been to a clinic. I wear compression stockings now.

    There is a wonderful Facebook site Vulval Cancer Support group which was and still is, my lifeline. It nay help whilst you are waiting.

  • Hi

    Thanks for the Facebook tip.... I'll have a look. I'm at risk of lymphoedema...if you don't mind me asking how soon after your operation did you start suffering with it?

  • I’m a teacher so had the whole of the autumn term off with my feet up a lot of the time. I noticed in January after being on my feet for long periods. Contacted the Drs who put me in touch with our local clinic and I’ve managed really well with the compression garments. It comes and goes. 
    I find wearing underwear is uncomfortable at times so invested in lots of long dresses which hide the stockings.

    Hope you find the site helpful. It really helps.