Not a big online community person but thought I’d brave it as I have been reading a lot of the posts and found it really helpful and positive.
So I had a mole on my face since as long as I can remember in my mid twenties I started becoming more aware of it being so exposed and went to see a Derm unit and it was all ok. Roll onto 2021, I noticed it changed in colour/size and had been itchy. Went to see my GP and was sent away feeling that my concerns were not heard and I was there due to a cosmetic issue. I was aware of the risks of skin cancer but not like I am now. Due to everyday life and working in emergency services it just got put on the “back burner” and I had another health scare through a work related injury. I was thinking of looking privately to have it removed but did not have the money, I knew something was not right and believed the GP it was ok but decided it had to go.
Roll onto Summer of 2025, the mole had really started to change in shape it had gone slimmer in width but more raised, dark and hurt when out in sun for too long, it also bled twice. I decided that I had to go back to GP and had to put my foot down. I literally sat in the seat and within a minute the new GP had made an urgent referral.
Went to Derm in December 24, a consultant agreed it had to go but believed it to be a Seb K.
It was removed and in Jan25 had the dreaded call to say it was melanoma. The consultant that removed it actually called in her day off at home on WhatsApp. She explained it was a rarer type and they had issues measuring it.
Finally had the official Derm diagnosis consultation with another consultant who said it was a PT2A superficial spreading melanoma with Mitotic count 5m2.
I was assigned my cancer nurse and looking back I was a dear in headlights as was my wife. Hindsight is a wonderful thing, but I my mental health had taken a slide and anxiety of the roof. My GP surgery despite knowing my mental health issues and what I did for a living were somewhat unhelpful with getting signed off to decompress. My cancer nurse, explained it all and looking back downplayed it all, prob in hope of not causing unnecessary stress but I would have preferred a better understanding. She went through WLE and the option to have SLNB. I had the usual freak out about going under GA as I had never been under.
After receiving paperwork sent to MaxFax Consultant saw no mention of SNLB and on calling the CNS she said “oh no, you are having it, we feel in your case it is really needed”. I thought well that’s not what you said earlier.
Whilst waiting for surgery I had a new lesion on arm that came out of nowhere, not huge but it bled like a mole does and on telling my CNS team, I basically got the message that your coming the end of the year, wait till then. I had sent an image and they said oh it might be a Seb K, not that it looks anything like one.
Surgery was completed April 16th and the actual care I got whilst in was second to none. I look like a WW1 fighter ace with my scar on cheek but healing really well and two lymph nodes removed on neck.
This is when things started to take a dive. I was initially told 2/3 weeks at diagnosis for SLNB biopsy results. The 4 after surgery. I had an appointment come through for June, I called my CNS specialist and she said that she had seen on MaxFax consultants notes results in four weeks for results and thought that’s unlikely it would be more like 9 weeks at earliest. My head struggled to get round the prospect of a wait that long, again I took a mental health nosedive. About 2 weeks later I got another notification saying that my results appointment had been brought forward to May 16th. I was relieved it was so much quicker but was concerned why it suddenly had been brought forward. Attended the appointment and the consultant opened my record to get the results and they were not there. He clearly was embarrassed and was politely ushered out. Before leaving he had stated a phone appointment was to be made so I could at least speak to him in 2 weeks, plus when the results were in he would call me.
So phone appointment came through and it was mid July! My wife called up his secretary and managed to get one in June and was told that the was no system in place or ability for me to be called prior to any appointment with the results.
Basically I have no idea when the results are in or even if they have them now. Now I fully understand why people say you need to be an advocate for yourself. At every step of my diagnosis I have had to chase/ push and left questioning everything. I know the NHS is struggling and there are some amazing people that work for them but the way I’ve been treated has shocked me and my friends/family. Apologies for the long post. X
