Hello

Oh, I'm just curious Saltmarsh ... I get inquisitive about one thing one day and another thing the next.  I go through phases, reading nothing for weeks, months or even years, then getting into a flurry.  There have been so many exciting developments in the last 5-10 years for the treatment of melanoma.  At last, there is hope for everyone. C xxx

Hello ,I'm sorry to hear about the result Idg559 but you did suspect it wasn't right.  I'm glad my info helped you prepare some questions.  It's a positive step to help you feel you are in control.  Stage 1 is early which is good news.  I too had a superficial spreading diagnosis but mine was already ulcerated so I was staged at stage 3. The Breslow depth of mine was about 3.4 so the risk of lymph spread obviously increases the deeper the mole has grown down.  Not all the melanomas are caused by sun damage but this one is.  You don't have to have been burnt to get it, I wasn't but I know I was remiss in applying sun cream. 

So I'm very pleased it's a low staging for you and fingers crossed for clear results after the surgery. Any questions don't hesitate to ask us on here hon. Meanwhile try and keep as busy as possible to avoid dwelling on it if you can. The waiting is so hard.

It is a shock for sure and yes we're all too young but it is such an indescriminate disease it doesn't care who it attacks.  You'll come across much younger people than yourself on here. The general public really don't even know how serious it is!

Take care xx

Hi all, 

Really quick question for anyone in the know...

I see a lot of reference to speaking with "your SCNS" (which I presume is skin cancer nurse) about any questions/concerns in various threads. Out of interest, at/after positive confirmation of melanoma, at what point is a SCNS assigned to you normally and is it usually dependent on staging?

I've had several appointments, including the one with a doctor that confirmed the diagnosis. In that meeting, I was not given much information aside from confirmation of superficial spreading melanoma and a big information pack to go away and read which contained a leaflet about stage 1a Melanoma. I happened to ask about breslow depth based on my own knowledge from here at the time and the doctor answered that (1.0mm) and then basically packed me off out the door. On reading the leaflet, i already knew I couldn't be 1a as in that it defined 1a as being >0.8mm and mine was over that. It was only when I read the leaflet that the questions started to form but I had no way to contact, nor anyone assigned to me to put those questions to. Last weekend I had a telephone consultation with a surgeon to walk me through the SLNB/WLE, the risks and ensure I wanted to go ahead, which I've agreed to. I was lucky as he was actually really good and when I asked him my additional questions, gave me much more information about my original biopsy than was shared with me by the original doctor. Information I wish I'd been given proactively or else been able to ask about previously such as confirmation of my actual stage (which he confirmed was 1b not 1a), ulceration (which there was none), miotic rate (which was apparently 0), confirmation that there was no satellite nodes and a few other bits I forget that were either "not present" or else 0.

Currently I've no one specific assigned and my only contact with anyone from the healthcare side is when I'm summonsed to an appointment at the hospital. I'm just curious on whether its because of my low current staging, or whether typically i'd normally have a SCNS to contact already by this point. Interestingly in my original excision, the nurse that performed that (who was brought in from another hospital) seemed surprised I didn't already have an assigned contact even at that very early stage. Some of the threads here seem to indicate being assigned a SCNS at diagnosis confirmation, so I'd love to know what normally happens.

Hi ldg559

I was assigned a skin cancer nurse specialist (SCNS) at the same time as I was told I had melanoma. 

I think it might depend on whether the hospital you're under has SCNSs as sometimes staffing levels can be an issue. As far as I know anyone from Stage 1 upwards would have a SCNS allocated to them.

I would suggest you give your consultant's secretary a call and ask if there are SCNSs at your hospital and, if there are, ask for their details.

x

Hmm that’s interesting, thank you for that. I actually don’t have a consultant either as far as I can tell, unless that would be the plastic surgeon I spoke with at the weekend. Every appointment has been with someone different. All of my appointments have been at the weekend and one thing the nurse that performed my excision told me was that she and anyone I see at the weekend in dermatology in this particular hospital was almost certainly a contractor, brought in from other hospitals to help get waiting lists down post covid. I wonder if that is the reason I’m bouncing about between different healthcare professionals. It kind of leaves me at a loss as to who to speak to though to find out who my SCNS would be in that case. I know my WLE and SLNB will take place at a different hospital than the one I’ve been attending up to now though

Okay, if you don't have a named consultant then ring the hospital and ask who your consultant is and then take it from there. Even if you have seen someone different every time there should still be someone who is in overall charge of your care. 

x

Ok thanks Latchbrook, I’ll try that and see where I get to. 

Hiya Idg559,

Hope you are okay, good to hear you have a follow up planned with a consultant.  

 It was 3 months before I learnt about the Clinical Nurse Specialist (CNS).  I think they say Skin Clinical Nurse Specialist and leave out the 'cancer'. 

You should be able to get put through to their telephone extension via switchboard.  You may have to leave your name and telephone number as sometimes they are in clinic with patients.

If you get stuck, have a look for the Patient Advice and Liaison Service (PALS) and drop them an email with your query.  Also provide Date of Birth, Hospital Number as I think they like to know this too.

If you get really stuck, I recommend Melanoma Focus Helpline on 0808 801 0777. 

1-2 and 7-9 Mon to Fri.

7-9 on Sunday.

They have Skin Clinical Nurse Specialists who I found very helpful and reassuring.  It is just for persons with melanoma and their family.

xxxxx