What is the proposed ongoing treatment going to comprise? Chemo? Radiotherapy? Did any scans/imaging show any suspect nodes in the groin/pelvis?

Thats exactly the same as wat i had. They took out all my lymph nodes from my groin.

I had no idea about lymphodemia.

I wont lie its not been easy as i have had celulitis etc but the cancer has gone.

Things have settled down now and i know the triggers for my legs now so its not so bad.

U just gotta think about the risks. Im just glad the cancer has gone.

Good luck xx

I was diagnosed with Vulval Cancer in 2013 after removal of benign Bartholins Cyst and gland and Squamous Cell Carcinoma found underneath,plan was for WLE and Sentinel Node Biopsy however infection and swollen nodes followed,Fine Needle Aspiration showed malignant cells hence WLE turned into Partial Vulvectomy,Lymphodenectomy involved removal of a cluster of nodes,4 out of 7 malignant. This was followed by 5 weeks Radiotherapy. I pushed for referral to Lymphoedema Clinic beforehand,after recovering from Radiotherapy went into class 1 compression having been found to have mild lymphoedema and now after 3years religiously wearing compression,meticulous skin care etc my leg is just 3% larger than my unaffected leg. I do have some sensations such as burning,tingling etc but all very mild and manageable and easy enough to live with.

I would recommend having the Sentinel Node Biopsy rather than heading straight for full removal if possible,of course there is always a possibility of Lymphoedema after that but it seems to me that Radiotherapy does the most damage.

Hi Juliajane it was interesting reading your story. I do not know why they not try sentinel nodes first. Want to take the lot. Maybe it is an aggressive type? I will ask this at my appointment in January. Yeah if all lymph nodes out then radiotherapy it would be worse...been reading that too.

Was this your first cancer there. Any problems before? How often are you attending follow up? If you do not mind me asking.

Think as mine in middle at back of perineum .. Need both groins out.

Hi Juliajane it was good to read more on your condition. I would request you not to end the checkups. If I was you, I would continue. I was checked up by gyn/oncology for five years after a borderline ovarian cyst in 2007. I was transferred to gync for ongoing checkups as I was diagnosed in 2010 with lichen scelrosus. I would stay under gncy/oncology now as gync took longer to spot this lesion growing during my six monthly check. So it was deeper, than should be.

I am going to request to be checked by gncy/oncology for all my future years.

Hi Monica,

I had all my groin lymph nodes removed nearly 20 years ago after cervical cancer. It was aggressive cancer so they felt it was wise to remove them all. I got a lot of chemo and radiotherapy and certainly the cancer has never returned. However I do have quite serious Lymphoedema and regularly get attacks of cellulitis. I was not told that this would happen but even if I had I would have chosen removal. Put simply I would rather be alive with Lymphoedema than dead with cancer.

However things have moved on nowadays and I think you are right to ask questions about it rather than just accept it. I would definitely advise you to investage further first.

Good luck,

Marianne