From a mole to stage 3 melanoma in a matter of weeks

Hi there, so I've just found out I have stage 3 melanoma. I initially went to my gp early June as a new mole appeared within 6 months and grew to a 5p size and changed shape and colour. Immediately referred to dermatology who booked me in to have it removed. All done I assumed but then the news come back it was melanoma and 6wks ago i had wide local excision to remove 6cm tissue from around my left inner knee. The wound looks like a shark bite its horrific! They also did a lymph node biopsy. I had a very long 5wk wait for the results and then last week they confirmed it has already spread to my lymph nodes in my groin. I'm being fast tracked and yesterday had a PET-CT scan (the radioactive stuff going in wasn't pleasant) and tests are being done to determine if I'm BRAF positive. I'm waiting for an oncology appointment and I've been told I will be starting a course of immunotherapy.  Can anyone tell me about immunotherapy as I don't know anyone whose had this treatment.  I feel physically and emotionally wrecked as I'm still recovering from the operation and had no end of difficulties with the wound- opened up and then infection. Antibiotics then gave me thrush and now I've got seroma and the tight throbbing is unbearable. I start physio tomorrow and I've got a check up straight after. I just want this all to go away as I lost the whole summer and everything planned got cancelled. I have 2 young teenage kids. Everyones been supportive but I'm getting lots of unhelpful and unwanted advice. I know they mean well but they don't know just how this is affecting me.  Anyone been in the same situation who can offer reassuring advice right now would be great. 

  • Hi Sarahlou,

    Oh you are really being put through the mill. I'm Stage 3 but I was diagnosed before immunotherapy was made available. I do know many patients who have had or are currently having immunotherapy though and everyone has a different experience when it comes to side effects - some have none, some have mild ones whilst others have severe ones. There are also many types of side effects. The one thing though that most find is that it shows great results so it's balancing the possible side effects against the possible good response. Also, if you find you are BRAF positive, you will also have the option of targeted therapy which is bonus ammunition to have in your arsenal! Drop me a pm if I can help with any questions etc and I have everything crossed for you.

    Angie xx

  • Thanks angie, I think I just need reassurance as this is all unknown territory for me. My husband has MS (diagnosed in 2015) so we're used to hospitals, tests  scans, medication etc for him but now it's me I'm floored. It's all just been so quick and I cant get my head around the fact it was a mole. I don't feel ill in anyway. I think I need do some research on immunotherapy and targeted therapy to make me feel I'm in control again. I hope you are doing well in yourself. X

  • I'm good thanks - 12 years Stage 3, no drug treatment but still No Evidence of Disease so I feel very lucky thus far.

    You really have a lot on your hands and it's hard to prioritise caring for yourself but learning everything you can will help you feel in control a bit more. Start with this website - the charity Melanoma UK are brilliant and so helpful and good to chat to if you feel the need. Gillian & Diane are good friends of mine and do a lot for melanoma patients www.melanomauk.org.uk/.../treatment-options

    Similarly, Melanoma Focus are another charity that deal primarily with research (my consultant is on the board of this charity). It's great for information and they have a nurses helpline too https://melanomafocus.org/

    There is a lot of help out there for melanoma patients and these are only two suggestions - you are not alone.

    Angie x

  • Thankyou angie that's a great help and someone "sound" to look for advice. I know the Internet can throw up some real horror stories so good to get recommendations of websites to turn to for info. Will get on that and hopefully start feeling more positive   x