Vaginal melanoma

  • 5 replies
  • 5 subscribers
  • 687 views

Hey there. I am looking for some advice as I dont know where to turn. I am 58 years old.This time last year I found a black lump covering my clitoris when showering. GP appointment referred me to gynae for check. Biopsy arranged. 2 biopsies taken (infection and antibiotics needed) then phone call 2 weeks later "its not good news, is cancer." Chemo, radiation and treatment discussed briefly. 20 minutes later another phonecall to say "better news...is still cancer but can possibly be treated by surgery alone" Specialist cancer nurse arranged. Told to wait for appointment with surgeon through post. 1st app with surgeon, looked and said I can take that away today, but wasnt able to so booked for local anaesthetic removal 2 weeks later. An hour and half in stirrups and couldnt get it all away with margins. Booked me in for general 2 weeks later to open and remove remaining melanoma. Arrived 8am as instructed. Put in a side room till 3pm. No bed for me. Changed for theatre in a store room. Taken to theatre and over an hour again with a spinal block as no bed for recovery from general. On coming round was told by surgeon had to dig a lot deeper than thought and couldnt save much clitoris. Had to sort myself and get home 2 hours later, no support or conversations about what had occurred or aftercare. 3 month check clear. 6 month check I had found another lump, labial fold. Same surgeon told me just a blood clot probably but organised another biopsy. Waited for date, went in to hosp, different surgeon. Looked and said had this grown in past 4 weeks? I will just take it all away to be checked instead of just a biopsy. Results given by original surgeon over phone again, told that cancerous cells had formed and would have developed into another melanoma if hadnt been removed. She was concerned at the rate of recurrance so would pass my case to dermatology as she was gynae, it was in my system and they could do a full body check. She would still see me every 3 months. So. Now when I chased up for my dermatology appointment with my GP, the surgeon rang me and said to me"its not cancer. You havnt had cancer. I will ask dermatology to see you but it may not be before our next 3 month check (31st Aug) and maybe not even before the end of the year, if you see them before your next 3 month check with me then you dont need to see me.  I was spoken to like a scolded overimaginative child. Yesterday. My life has changed dramatically this past year. I have no clitoris. I have been cut open and sown up 4 times. I have now been told it wasnt, nor is it now, cancer. I have NO idea how to deal with all this. Could non surgery treatment have been an option? Melanoma and cancerous cells NOT cancer? I am distraught. Lost. Numb, and VERY angry. Please advise if anyone has any thoughts how I can deal with this. Thank you.Heart

  • Hey sweetie -

    Omg, you've been through hell!

    I am no expert, but from ladies who I have spoken to, if it's removable via surgery with minimal impact on your life, they will, so yes, if it had been cancer, this would have been a path they'd have taken.

    My advice, find a PI solicitor, the physical, emotional and mental trauma is huge..this is negligence, you had biopsies to determine if you had cancerous cells, someone cocked up somewhere along the line...

    Shelley

  • Hey Shelley....thanks for posting and confirming if proceeded with surgeries then MUST have been cancer, and so recurrance should be monitored closely. I dont know if I can be referred by my GP to dermatology to have a full check? The wait for months from surgeon route could be too late. I dont want to go down the solicitor route. I have enough to deal with right now, holding on by my fingertips here. Macmillan are my only support. This forum and the helpline. Thank goodness for them....and I appreciate your comments..thank you.

  • Hi fieryfifer

    I feel for you, no wonder you are up the wall. I would make a log of everything as above with dates etc and contact PALS for this hospital (patient advisory liaison service). The care you have received is not acceptable and needs reporting. PALS will help you to get answers. Don't think of it as complaining, think of it as improving standards for the patients that come after you.

    Have you any patient letters from consultants? If not ring gynae secretaries and request these to be posted out. 

    I wish you all the best and hope you get sorted.

    Amanda x

    What is a Community Champion?

    I am a Macmillan volunteer. 

    Macmillan Support Helpline

    0808 808 00 00 

    7 days a week between 8am -8pm

  • Thank you so much for your response and advice. I will take up with PALS as suggested, and will also ring for copies of correspondance from surgical secretaries. I did contact the CNS last week but no response from her. Saw my GP Friday, no referral from surgeon to dermatology still, so she is taking over, along with the marvellous Macmillan team. I have hope that I may be seen soon and am looking forward, not into an abyss. Thank you again for your advice. I shall proceed with PALS and hopefully no other patient is treated so atrociously in the future. D.

  • Hi fieryfifer,

    No problem, I'm just pleased that you are getting somewhere now.

    Amanda x

    What is a Community Champion?

    I am a Macmillan volunteer. 

    Macmillan Support Helpline

    0808 808 00 00 

    7 days a week between 8am -8pm