Recently diagnosed with nodular melanoma

Hi Paul G1 and a very warm welcome to the online community

It's natural to think about the worse-case scenario when we're given a cancer diagnosis and I'm sure everyone in this group has done it. I was diagnosed nearly 5 years ago now and remember thinking "will this be the last Christmas I see?" but I'm still here.

Like you I had a WLE and SLNB and I'm happy to talk through those procedures with you if there's anything you want to know.

I can see from your profile that you've had a CT scan which has come back clear and your lymph nodes feel okay so that all seems positive news. I was wondering what was so negative about your last hospital visit that has caused you to struggle since?

As for how I coped, I just took one day at a time and tried not to think too far ahead. I kept myself busy with hobbies and as we were in the middle of a house move that also kept me distracted.

Lots of people find mindfulness really helpful and if that's something that you'd like to explore clicking here will take you to the NHS page with links to various apps, some of which are free.

One thing I've learnt over these last 5 years is that worrying doesn't change the outcome but it can have a massive affect on your mental well being. Hopefully the WLE will be all the follow-up treatment you'll need so try to concentrate on that and try not to worry about things that might never happen, easier said than done I know.

x

Hi latchbrook - thanks so much for the reply.

I was seen by a Plastic Surgeon and Skin Cancer nurse to discuss a WLE and whether I should also have the SLNB.I just found it all quite negative - they were really apologetic that I had been diagnosed with nodular melanoma & then went over that this hadn't been caught early & with a Breslow of 7mm there was the likelyhood of spread either via the lymphatic system or via the bloodstream. Then said it was unlikely I would be cured & I would be living with this for my lifetime.

They then mentioned immunotherapy as the option if my SLNB didn't go in my favour. Then spent a bit of time going over all of the side effects that this can cause & again this sounded all very negative.

I just couldn't take any positives from any of it - what they told me wasn't incorrect - but I guess I was looking for hope & positivity & they didn't give me any.

I'm trying to distract myself as best I can - I'm confirmed for the WLE/SLNB for 26 Oct and am back seeing (a different) plastic surgeon this Friday.

Would be good to know how long the WLE/SLNB would usually take before I can go to the football & the shops again !

I can see why you came away from your appointment feeling despondent Paul G1 but unfortunately in these days of litigation they have to tell you all the downsides of your diagnosis as well as any likely side effects of treatment.

I think that the hope and positivity that you should concentrate on is that:

• the melanoma has been removed
• your CT scan came back clear
• there is no sign of swelling in your lymph nodes

The SLNB will tell you if any melanoma cells have spread to your lymph nodes and until you're told the results it hasn't, if you see what I mean.

As for the possibility of it having spread in your blood stream, well unfortunately we're all in that boat as it doesn't need to be thick to have spread. Mine was ulcerated so I know that there's always a risk that some cells have been carried off to distant parts of my body. However, the way I cope with that knowledge is to assume that it hasn't spread until I'm told otherwise. 

You will be monitored every 3 months for 3 years, followed by six-monthly for 2 years and if at any time in between you are worried about anything you notice then a quick phone call to your SCNS should have you in front of your consultant within a few days.

I'm naturally a glass half-full person and I think that has helped me to cope. However, if you think that talking to a specialist counsellor might help you, you might not be aware that Macmillan have teamed up with Bupa to offer up to 6 free counselling sessions for people who are struggling emotionally because of cancer. Clicking on the link I've created will take you to more detailed information.

As for how long before you can go to the shops and footie after your WLE and SLNB, well I think that depends on what your pain threshold is like and how quickly you heel.

You will probably be told to take it very easy for the first week and then start doing things again the following week. I had an appointment 2 weeks after the ops to get my results and for my wounds to be checked and at that point I was perfectly capable of going out and about, although I was careful to try and avoid bumping the arm where I'd had my WLE.

Let us know how your appointment with the plastic surgeon goes on Friday.

x

Hi,

So I saw the plastic surgeon who will do my WLE & SLNB op. He had a video to show what happens & talked through the various bits of the procedure. As my lesion was in the middle of the chest he was trying to work out whether it would be a skin flap or skin graft that would be needed & he took some photos to try to ascertain how we would do this.

Lymph nodes in neck & arms appear to still be ok.

He advised me to not go the gig I had booked 10 days after the op as it is probably a bit early for that !

He talked through that around 20% of SLNB aren't good news & that also given the 7mm thickness and ulceration I'm at a higher risk. But that he had seen thicker lesions in the past that had come back ok. Then explained that with good news I would move to 3 month scans - bad news & it would likely be Immunotherapy but I would need to talk this through with an oncologist.

My op is 26 Oct - biopsy results would likely be around 6 weeks after - so I have a few more weeks of uncertainty.

I'm finding ways to distract myself & am trying to keep myself positive.....sometimes this is tough though....

Glad to hear things went well yesterday Paul G1. Sounds like things have moved on a bit since I was diagnosed as my surgeon certainly didn't have a video to show me what happens! That must have been interesting.

Of course they have to talk about worse case-scenarios but remember if 1 in 5 SLNBs aren't good that means that 4 out of 5 are!

If you end up having immunotherapy there are others on here who will be able to discuss this with you but hopefully that won't be necessary. 

I know that distracting yourself can be difficult so if you feel like having a bit of a rant anytime then that is what this space is for as well.

x

Hi Paul G1,

Sorry to hear about your diagnosis.

You can see from my profile my time line but shortly I had my stitches removed on day 10 and results came back on 14th day after WLE and SLNB. I had gone out for brunch(no alcohol sadly) on the 14th day after I got good news, but not much going out apart from that and short walks in the park. 

My WLE was on my knee, so was told to take it easy and it'll take up to 6 weeks to go back to completely normal, but I am feeling Ok at the moment apart from tenderness in the wound areas. 

I agree, CT scan negave is EXCELLENT news and watching a video on WLE, SLNB- WOW, that tells me your hospital is on it.

As healthcare professional myself, I know that they have to tell you all possible negative outcome/side effects to give you all the info possible. My surgent told me, that my scar will be ugly and painful and she said sorry for being frank but you have to be prepared. And than, it was not ugly or painful at all or maybe I was well prepared for it.

I agree with previous posts as to try not to dwell into negatives and also don't forget that there are many advanced treatments for melanoma nowadays, so more reason to be optimistic. 

Hi Elmyra - thanks for the reply & really pleased to hear that you got good news !

I can't help but dwell on the fact that when I first saw my GP my mole/lesion was small and not ulcerated - but it wasn't thought to be a melanoma. Then a couple of months later I had ulceration & a 7mm thickness. Things are more risky as a result - but I can't turn back the clock unfortunately. 

I've just got to try my best to not get too negative, go and have the op and then keep my fingers crossed.

Six weeks does seem to be a long wait for the biopsy - I had originally been told two to three weeks - but all of that is outside my control.

The video was pretty amazing to see - although not one for the squeamish !