Hi,

It's so good when someone else with melanoma comes on here & tells it like it is. Our stories are very alike except for the timeline.

I too was a Police Officer when I was diagnosed Stage 1 melanoma at the age of 39. That was 23 years ago when there was nothing other then surgery available and the Internet, let alone Google, wasn't invented. My dermatologist was new, only 2 for our city - the 5th largest in the country - yet from looking at my mole she knew straight away & it was confirmed by her only colleague. No SLN biopsies in those days & mine was only 0.7mm so it wouldn't have been offered anyway. Five years of checks after removal & I was good to go.

Shortly after discharge my brother, niece & nephew all has dysplastic moles removed & our dermatologist asked us to be part of her familial melanoma research so, 6 years after discharge, I resumed 6 monthly checks for her research. 

Two years later I was faced with bad & good luck in equal easure. A check up revealed a lump in my groin that, after a quick fine needle biopsy, showed the melanoma had returned & I was now Stage 3. So I was in the 5% of Stage 1 patients that has a recurrence & spread - bad luck. However, I was also still under the excellent care of my dermatologist who arranged for a full node clearance in my groin. My stroke of luck then occurred - the head surgeon decided to postpone his holiday by a day so he could do my surgery instead of it being his deputy. On a hunch he also took out my pelvic nodes & this saved my life as a micro amount of melanoma was found in one of these nodes (it hadn't shown on the CT). Again, surgery was the only option for Stage 3 patients in 2009 so, as a Stage 3b patient, I started the endless round of regular checks with my surgeon (my dermatologist now only does research work). The upshot is that I am still No Evidence of Disease 10 years after my Stage 3 diagnosis . I receive wonderful care & my consultant allowed me to carry on with check ups until the 10 year mark (next month). My old dermatologist has then arranged for me to continue with checks under dermatology because of my history.

In the 23 years of living (on & off) with melanoma there have been so many changes - in treatment (adjuvant drug treatment was brought in for Stage 3 patients last year) - but also in the size of the melanoma problem. The 2 dermatologists at my hospital (now a centre of melanoma excellence) has grown to two departments as the numbers of patients being referred & diagnosed is rising beyond control. The Internet is a wonderful tool, Google especially if used correctly, but it also brings it's problems as you so rightly point out. Melanoma research & treatments are moving so quickly that the internet can't keep up so I always tell people to only look at the respected websites - this one, Macmillan and the British Association of Dermatologists. It is brilliant though for those who need to reach out and find support - 10 years ago my only support was the tiny Macmillan room at my hospital & then these forums started. 

I totally agree that everyone deals with their diagnosis differently - some want to talk & find out as much as they can whilst others don't - some put their treatment solely in the hands of their clinicians whilst others try to bolster it with alternative therapies or even shun the medical route & concentrate only on alternative medicines. The latter is something I have never agreed with - there are too many 'snake oil' sellers out there that prey on cancer patients. Having spoken to many melanoma patients over the years my advice is - accept everything your clinician says & offers but also, if you want to know more, learn everything you can about the disease & the treatment options by speaking to your peers. This has helped many I know as they have used this information to ask for a second opinion which has brought them a drug trial they weren't aware of. One of my melanoma patient friends now runs an annual patient conference where consultants give presentations to the patients about the state of research & treatments - it is invaluable. My dermatologist speaks at these conferences (she is now the chair of NICE for melanoma) and there are two things she said to me that I will always remember (and I live by) - when being told I was Stage 3, 13 years after first being diagnosed, she said 'It's not the end of the world' and she was so right - it's not. At one of the conferences I asked her if she & her fellow consultants dislike the patients getting 'clued up' & questioning their care & treatment, she replied 'Patient empowerment is very important - it's your health & I'm all for it.' So never be afraid to ask about something that hasn't been offered!

I truly believe that our (Police) occupation has a bearing on how we deal with our own personal trauma. Live life to the full, don't waste time on the 'what if's' and don't worry about reaching out to your clinician if you have a worry, they are there for you! Keep well & keep positive,

Angie

PS I will send you a friend request in case you are interested in the annual melanoma patient conference.

Wow Stephen, that's a long way to travel & it not even be a melanoma specialist!  I know it's so hard to miss out on the adjuvant treatment if diagnosed before it started last autumn. It's obviously early days yet to know if it's helping Stage 3 patients but the stats for it's success in Stage 4 patients is showing good results so far. You may possibly be able to pay for it privately - I don't know if anywhere offers it. Because I've lasted so long without any drug treatment (I know of 2 other Stage 3 patients the same as me) I think my immune system must be strong enough to keep it at bay - that's why my dermatologist thinks it took 13 years to return as Stage 3 with me! If I (or you) should have any further problem we will be offered it at that point though.

Thanks for accepting my friend request. I'm having trouble sending you a message - could you try sending me a message please,

Angie x