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Hi all,

I've been told this week that my vulval cancer has spread to my pelvis and there are suspicious nodes on my lungs.

I was diagnosed in June with HPV related squamous cell carcinoma, operated on in July where the biopsy showed a grade 2/3 tumour and positive lymph node. During treatment planning the original tumour grew back to a 3cm lump.

Radiotherapy started with a chemo sensitiser in September but was halted this week after 5 weeks when my scan showed the new spread. Its incredibly fast growing although it looks like it has responded well to treatment so far. Unfortunately the new areas weren't covered by the radiotherapy as they hadn't shown on my August PET scan.

I will start 6 sessions of chemo in the next week or so.

I'm trying to get my head around it and, although my situation is very rare, wondering if anyone else has any experience with SCC becoming metastatic? I'm 52.

Gilpat 6 hours ago

Hi MidlandsMama, I can't comment on the specifics of your cancer but I can tell you I responded well to squamous cell carcinoma in the neck with chemo and radiotherapy and, although they also found a second tumour in the lung, I am still stable and undergoing immunotherapy. I am on holiday in Thailand at the moment and enjoying it. There are so many treatment options nowadays that they will come up with something to help you. One thing I have learned on this journey: don't try and become an oncologist, those guys study for years but be aware if what's going in and seek advice if you are not happy with it. I wish you well

Patrick xx

MidlandsMamma 6 hours ago in reply to Gilpat

Thank you so much for your reply and so good to hear that you’re stable and having a lovely holiday abroad. Its something I hope so much to be able to do again xx

tvman 5 hours ago

Hi MidlandsMamma, so sorry you've had to join us here but on the plus side you couldn't find a better forum for support and an arm around your shoulders.

Hope your chemo goes well and has a positive effect on your tumour. Good luck ️

Tvman x

Love life and family.

MidlandsMamma 5 hours ago in reply to tvman

Thank you so much, the warm greetings are making me feel I've found a good place x