Vaginal melanoma

Hey there. I am looking for some advice as I dont know where to turn. 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. Then 20 minutes later, rang me back and said "its still cancer but better news is it can probably be treated just with surgery" 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. And VERY angry. Please advise if anyone has any thought how I can deal with this. Thank you.Heart

  • Hi and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

    I'm sorry to read how much you've been through over the last year and it's no wonder that it's left you feeling lost and angry. 

    I noticed that you said you were assigned a specialist cancer nurse and they are usually great at being able to answer questions. I hope you don't mind me suggesting that you give her a call to find out exactly what your diagnoses were as she should be able to see from your records. 

    Like you I'm confused by what you've been told but hopefully your CNS (cancer nurse specialist) should be able to tell you exactly what you were diagnosed with. From what you've written it sounds like you were told that the first lesion you had removed was melanoma, which is cancer, but that the second lesion was removed with pre-cancerous cells in it, so it hadn't had chance to develop into cancer.

    Do come back and let us know how you get on speaking to your CNS.

    x

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  • Hey Latchbrook......this time last year I was given CNS number by surgeons secretary. I rang 3 times(was one if those ring, leave a message and we will get back to you jobs) and asked questions which she helped with. However, I lost her number when things quietened down and have no way to contact her unless I ring surgeons secretary again, and ask for her, and the whole point is the news yesterday that no cancer ever or now, so why would they issue her number to me again? Can you see the quandry? That would cause more problems. I have no idea of the type of melanoma, depth, size etc. And the latest leision was confirmed as "cancerous cells which would have formed another melanoma" so is that classed as pre cancer catagory? Which sounds more managable but formed fast so needs watched closely? Thank you for your help and advice here...Any suggestions for contacting a CNS to catch up?

  • Hiya Fiery Fifer,

    I am very sorry to hear about your situation. it is understandably a worrying time for you.  

    I was under the impression that all cancer patients were entitled to psychosocial support via a cancer nurse specialist (CNS) and that it was possible to have a holistic needs assessment (HNA) and that this might lead to referral to further emotional support.  

    My suggestions would be:

    1) can you call hospital switchboard and either get their email or ask to be put through to them, most CNS work 9-5 but will be in clinics or meetings for a good deal of the time, but if you leave a message, they will call you back;  

    2) could you arrange a GP appointment to discuss the impact of the surgery on your emmotional health (my GPs were wonderful and supported me when I was diagnosed first time)?

    3) does your GP surgery have a nurse who you could talk to (again in the past, I have leant on the nurse at my GP practice,  temporarily, they were also wonderful))?  

    4) I thought that the hospital had to send a letter to the GP within a week advising of the treatment/ surgery, have you checked that you have ticked the box to receive a copy of these letters, as might help with your queries about outcomes of surgery and confirm what was said verbally on the telephone, if you receive copies?

    Keep chasing for support!

  • Hey Chamomile...thank you for taking time to respond. Firstly, re offering holistic and emotional support from CNS, had no idea of this and wasnt mentioned. Lockdown and covid obviously had paramaters but still, had no idea. 

    I will ring hospital switchboard and ask for a number. Did not know that was possible. Thought was cinnected to surgeons secretary only. Thank you. 

    I will also contact my GP Friday, cant face it today or tomorrow. Need to gather myself before letting her know this development. I also did not know we can request copies of letters which would set out all procedures, findings and results. No box ticked, again did not know and was not informed. Thank you. This has been a great help to step forwards. I shall query when asking for a referral to dermatology from my GP on Friday. Thanks again. 

  • You are welcome!

    I hear you ... navigating the system can be emotionally draining!

    Just to clarify that CNS may refer on to emotional support they can provide or access on your behalf.  

    The GP can refer on to 'Talking Therapies' which the general emotional support and seems to be CBT nowadays. I've did this and waited a year to access the service, in fact I forgot and they rang out to the blue one day!  But, in a way, that didn't matter, as I accessed different services at different times and everyone was very lovely.  

    It's a marathon and not a sprint.

    Be kind to yourself!

    Take Good Care.

    C

  • Hi 

    It sounds like you haven't been discharged yet, as you're seeing a dermatologist, so you'll still be on the books for the CNS. If you've lost her number just ring the hospital switchboard and ask to be put through to the CNS who works with whoever your consultant is. 

    If your latest lesion was confirmed as "cancerous cells which would have formed another melanoma" then yes, that sounds like pre-cancerous condition. However as melanoma is cancer, and you've been told that your first lesion was a melanoma, then there is no problem speaking to the cancer nurse specialist (CNS).

    x

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  • Hi Fieryfifer, I’m so sorry to read what you’ve been through; it’s no wonder you’re feeling lost and angry. I would recommend looking up your hospital’s PALS (Patient Advice & Liaison Service) and explain to them what’s happened and ask for advice on how best to deal with it:

    https://www.nhs.uk/nhs-services/hospitals/what-is-pals-patient-advice-and-liaison-service/

    Also know that your medical records are your data, so you can ask to see what they hold on you, and hopefully that will shed some further light on the situation. It sounds like some poor communication has happened at a very stressful time for you when it already would have been difficult to absorb. I hope you’re able to reach a sense of understanding soon.