UK Skin Cancer and Melanoma Patients

[Elgar]

Going for my follow-up appointment and biopsy results for my initial excision on Monday, and I want to make sure I ask all the relevant questions. I've looked at cancer researched list.

Here's mine:

How thick was my melanoma?
Was is ulcerated?
What margin of surrounding tissue did you take?
I take it I'll need a Wider Local Excision - how soon can I have it done?
Are you going to biopsy any lymph nodes?
Can/will you do a sentinel-node biopsy?
Can you check my lymph nodes?
Are there any scans I can have that will help show up any abnormal nodes?
I've got a cough, that I've had for about 5 weeks. Can I get a chest x-ray?
Would an x-ray increase the chances of melanoma returning (it was on my upper back)?
If I want to get one done quicker and pay for it privately, is that OK?
Do I need blood tests?

Does anyone have anything to add to those, or think that I shouldn't ask any of the questions above? This is all assuming that the biopsy does show melanoma - everyone who saw it seemed to think it was likely.

[kath1974]

Sounds good - they are all things I would have/ have had asked
The only one I might omit is the one about asking about having the WLE/ further treatment done privately. This is only because I think that going off my own experience once you are in the NHS system you are better off seeing through the treatment on that basis. Also if you go down the private route presumably you will have to fund that care yourself and if treatment such a SNB/ scans were necessary I could see the costs totalling up rather rapidly. I think for continuity of care at least I would stick to the NHS route for now.
And of course best wishes for Monday fingers crossed for you!

[jaqlyn]

Hi Elgar

Good luck on Monday! it seems like a good list of questions to me, very comprehensive
Remember to write them down and take them with you because you may find your mind going blank the minute you go in the room. Also take someone with you if you can for moral support . Seems like you are well aware of the procedure if it is melanoma which is half the battle because when I went for my results I was a little stunned at the news and had all sorts of information thrown at me, none of which sunk in.

For me now, I find being prepared for anything helps me cope and able to ask questions in the consultation room, so if I was back in your situation now i would have questions ready for all outcomes ie not melanoma, a thin melanoma or thick melanoma, I would ask if it was ulcerated and if possible what type of melanoma, what stage it was at and then I would ask about treatment.

Best wishes for Monday please let us know how you go on
Jacqui x

[Elgar]

Cheers girls.

Apparently according to everyone who's seen it, it looks like a superficial spreading melanoma, and didn't appear to be ulcerated. God knows how long it's been there (I've got dysplastic moles left right and centre), but it's never itched, bled or hurt, so that's a plus. Incidentally, they also removed a nearby dysplastic mole, but no-one seemed too worried about that.

Kath, the advice I've had from the doctors I know is to get all treatment and surgery plus any invasive diagnostics done on the NHS, but to pay for other diagnostics if you really feel you need it, want it quickly and can afford it. Saying that, they know that I've got savings that are supposed to be the deposit for a flat, I kind of think I'd rather be a living, breathing tenant than a dying homeowner!

I'll let everyone know how things go.

Hope you've all had good days x

[kath1974]

Best wishes hope it all goes well and make sure you let us know how you go on.
I was much the same with my melanoma the doctors kept asking me how long it had been there and the answer was I couldn't say! it might have been on my face but I didn't notice it particularly! That turned out to be superficial spreading melanoma
You sound really clued up before hand which is good but take all your questions with you to remind yourself of what you need and want to know
Crossed fingers for you!

[Janet2]

Hi Elgar,

I think your list seems comprehensive and covers most things. You mention you have had a cough for about five weeks and I personally would agree with you that it is worth asking about a chest x-ray or a CT scan.

I hope you get on well when you go for your follow-up appointment.
Janet

[Annie]

I think you've covered most bases, one invaluable item I used was the recording device on my husbands cell phone. I asked all the doctors beforehand if they minded if I'd record the sessions and they agreed. I can't count how many number of times I've gone back to the transcribed copy and read over some of the points the doctors had mentioned. I wish you all the best for your results on Monday.

[danensis]

We negotiated for recorded interviews of all consultations at our regional cancer centre, but it was done on casette tape, and many people complained that they no longer had casette recorders. The modern equivalent is the MP3 player, but a lot of the (mainly older) people who used to have casette recorders, don't seem to have MP3. Perhaps the answer is to record the sessions digitally and then send them as an email attachment? Could be rather large though after some of the consultations I've sat in on.

John

[Elgar]

So relieved.

Many thanks for all your kind posts. Thankfully it seems that they were both severely dysplastic nevi, and they didn't find any cancer cells. The doc has given me another follow-up for 8 months, and suggested that I see my GP and request an urgent referral in 3 or 4 months, on the grounds that I could justify it for any one of a number of moles. I've had the mole mapping thing done, and she said that she didn't want to leave it 8 months to see if they were changing.

Apparently NHS bureaucracy works on the principle that every problem either needs to be dealt with ASAP, or at some time in the next century, with nothing falling in between the two. It also seems that the professionals are perfectly adept at side-stepping those constraints.

Anyway, given the enormous number of atypical nevi that I have, my chances of developing melanoma at some point are many, many times higher than average, so I'm going to keep a close eye on both myself and news about melanoma. I've gone from being extremely blasé about my health to incredibly paranoid in the last couple of months. Hopefully, I can level out at cautious and vigilant.

I hope that everyone's had a good day, and my thoughts are with everyone who didn't get the news I did. Reading everyone's stories, I'm now acutely aware of how easy it is for this little b*gger to slip through the net. If there are any plusses to this whole saga, it's that at least two of my friends have been prompted to go and get dodgy moles checked out. They, and I, had the typical 20s male mentality that doesn't seek medical help unless acutely ill.

[gilly]

Great news for you Edgar - hopefully this has just given you enough of a shock to keep an eye on those other moles but not too much of one that it keeps you fretful - if you have lots of moles you just have to be vigiant - all the best.

[jaqlyn]

Hi Elgar!

So pleased your results were clear
and I admire your attitude to be positive but vigilant.

Keep well and take care
Love Jacqui x

[kath1974]

so pleased it was good news! fantastic
You're right to be vigilant which is "half the battle" but really pleased all has gone well for you