Stage 1b Melanoma

Hi, I’ve just been diagnosed with a stage 1B melanoma, which  was on my upper arm.  I’ve read around the subject, and I have an appointment to see a consultant next week with a view to discussing wider local decision and sentinel node biopsy. I don’t know whether to feel alarmed the speed at which things are happening or reassured that I am “ In the system” and tackling the problem promptly.  At the back of my mind is the thought that they are rushing me through because it’s urgent. Until now, the process has been relatively slow. I went to my local surgery in late June and only received the local excision in October. Four weeks then until the result came through this week.

Is anybody else In a similar situation to me?

Parents
  • Caroline, I know exactly how you feel, especially with the time lapse between getting a GP appointment to refer you and the excisional biopsy of your melanoma. I personally have found the entire process very slow, so I understand your concerns. I too have a stage 1 Melanoma [1A] invasive. Original biopsy 11 October, 16 weeks after seeking help. My wide excisional procedure required is not until 3 January 2025. Like you, this worries me, well the entire situation worries me, with so many of us being diagnosed with cancer. I am pleased you have an appointment next week to discuss your treatment plan in more detail. Try to think about what you want to ask, I didn't do this, and am having to do this now. Have you seen your pathology report? Not sure if you were seen at a specific cancer hospital. Did they check your lymph nodes at your first consultation to begin the diagnosis journey? I asked to see my pathology report, and although I did not understand all of it, margins, numbers, clark level etc, what I did gleam from it, was a better understanding to ask more questions, invasive remarks, prompted questions I would not have thought of. I don't know about you, but I was so focused on the fact I had cancer and terrified of what I may be told, I couldn't think of questions to ask at the time, I was simply nodding and in shock. So please, before you go to see your consultant this week think about what you want to know, ask and IF it helps write them down. This is very frightening time which does not help us to be as clear headed as we would like. Keep me posted and all the very best to you. 

  • Thank you so much for your reply.  It does help to know that someone else is in the same situation.
     I actually had three suspicious looking moles, and of the three, the doctor was convinced that one was a basal cell carcinoma, as it was flesh coloured.  That was the one that turned out to be the melanoma.  So far, I’ve only seen a dermatologist, but on Thursday, I am seeing a plastic surgeon.  I live in N Wales, and my nearest major hospital is 40 miles away.  The consultant I am seeing on Thursday is in N W England, although he is holding a clinic in my local hospital in Wales.  I will have to travel 80 miles for the surgery though.
    The specialist nurse who gave me the results this week did give me quite a thorough examination, including the lymph nodes.
    i haven’t seen my pathology report, but it’s a good idea to request a copy.  At the moment, I almost don’t want to know, but there’s no hiding from the facts, and as you say, it gives you a good basis for asking for clarification.  
    i will keep in touch to let you know how I get on.  Good luck with your procedure in January.  The waiting is almost unbearable, but it will be December tomorrow, which makes it feel closer.

    Do keep me posted about your own treatment too.  All the very best for 3 January.

  • Thanks Angie.  I'm happy to communicate by private message, but not sure how it works, as I'm new to this forum.  Where do I see your request?   ️

  • Great advice, GrannyRose.  I actually joined Zoe Nutrition 2 years ago, and have changed a lot of things about the way I eat.  Radically cut down on Ultra Processed Foods, loads more fibre, and I eat many more nuts, seeds and plant-based meals, although I still eat fish and meat, just not as often. Also lots of fermented foods to help the gut.  Hopefully that has put me in a good place health-wise, although Christmas is always difficult to navigate healthily!

    Thanks also for the website references.  I'll definitely have a good look at those.

    Caroline ️

  • Hi Caroline,

    In the top right corner of your screen you will see a bell icon. That should have a number against it to tell you that there is a notification waiting for you. Click on the bell & you can open the request & click to accept it.

  • Sorry, Angie, I can’t see a bell icon on my screen. I’m not ignoring your request, but I’ll keep trying.  

  • Right, I’ve found the bell icon in the drop-down menu, but it says there are no notifications, so maybe it takes a while to filter through.  

  • Hit "view all" as it sometimes seems to mark things as read when you've only accidentally hovered over it.

  • Tried that and it’s just bringing me back to this thread.

  • Unfortunately, I’m  getting nowhere trying to find your request to me, so I’ve tried to reverse the process by sending a friend request to you. Let’s hope that works!

  • No worries, I've accepted your request & sent you a message x

  • Time has passed and I’m wondering how you are and how you coped with your surgery. My surgery was late June 2024 and today I saw a Lymphoedema physio   My upper leg retains fluid down to my knee but I find that walking has helped.   Anyway, we discussed a compression garment and in fact he was able to give me a pair of cropped pants. Such a laugh getting them on!!  Not easy but eventually managed to pour myself into them. Been on me for 3 or 4 hours now and find them extremely comfortable. Big plus is I look slimmer!!  
    Forgive me, moving on too quickly!  How is your leg?  Please let me know and if I can offer any advice or help you only have to ask. 
    look forward to hearing from you. R

Reply
  • Time has passed and I’m wondering how you are and how you coped with your surgery. My surgery was late June 2024 and today I saw a Lymphoedema physio   My upper leg retains fluid down to my knee but I find that walking has helped.   Anyway, we discussed a compression garment and in fact he was able to give me a pair of cropped pants. Such a laugh getting them on!!  Not easy but eventually managed to pour myself into them. Been on me for 3 or 4 hours now and find them extremely comfortable. Big plus is I look slimmer!!  
    Forgive me, moving on too quickly!  How is your leg?  Please let me know and if I can offer any advice or help you only have to ask. 
    look forward to hearing from you. R

Children
  • Hi Grannyrose.  Lovely to hear from you.

    Sorry to hear that you’re still having trouble with your leg even after all this time. I hope that the compression shorts work.  It can’t be much fun having Lymphoedema for so long.  

    My surgery went very well. The scars on my right arm where the melanoma was and the SLNB scar  are both healing well.  They felt very tender for quite a few weeks but I’ve got a lot of mobility back in my arm now and have just started going back to Pilates classes.  I have found that over the weeks,  because of not moving as much, my shoulders and back have become quite stiff.

    The left leg, where I had a dysplastic naevus Is another story altogether. Although this was also a WLE, it was nothing like as deep as the one on my arm. However, because it’s just above my knee and in such a stretchy place, the stitches gave way after two weeks. I ended up in the local minor injuries unit, where they patched it up with Steri-Strips, and since then I’ve been under the care of the local District Nurses, who immediately removed the strips and insisted that I let it heal itself.    Between us, we’ve tried all sorts of remedies, dressings and ointments, but it’s not healing much and it’s basically still an open wound.  

    Still, the good news is that I saw the consultant 10 days ago, and there is no evidence of spread in either the melanoma site or the 3 lymph nodes they removed.  I know that I can’t afford to relax completely, and that I still have to be really vigilant , but I was so relieved to hear her saying those words.  Putting up with my leg is a minor inconvenience in comparison!

    Thanks once again for getting in touch and the best of luck with your own treatment.

  • Caroline, that is absolute terrific news and I’m so happy for you, you must be a very happy lady. 
    Be careful with the open wound as you do not want it to become infected   Is it beginning to show signs of healing over after it split?  I’d go back to the dressing clinic as they are there to support you. They may put something onto it to help it to heal.  Rather than cause it to open again,  I would try to put my leg up as often as possible. Did they not suggest using paper stitches or something like that?

    please let me know how you get on. X

  • That's great news that it hasn't appeared to have spread. Examine your lymph nodes regularly and keep up with your check ups. Sorry that your wound is struggling to heal though. Hoping that will sort soon.

  • Thank you.  Yes, I’m seeing the district nurses twice a eweek.  Trouble is I see a different one every time I go, and they all have their own ideas on the best way forward. For the past week, they’ve been packing the wound with silver impregnated tape and covering with a dressing, which seems to be working a bit better.  I’m going to see them in a couple of hours so .

    Caroline x

  • Thank you Lyns21.  We tend to think of the skin, but the lymph nodes are really important too.  I feel as though I’ve been very lucky this time, especially as I delayed a bit before seeing the doctor, not realising how dangerous a flesh coloured lump could be.  I now consider myself to have learnt probably the most important lesson of my life, and will definitely be more vigilant from now on.

    Caroline xx 

  • That sounds good to me. So glad that you’re being well cared for. Another week or two will make a big difference. It’s like a struggle now but before long, it’ll just be a memory   All the very best. 

  • So pleased your results are clear and that you are healing slowly. Take care & keep checking yourself!

  • I'm glad you're coping with the lycra crop pants - they are much easier to negotiate than the tights. After 15 years of wearing the tights I've become a whizz at putting them on & taking them off in record time - my consultant laughed when he realised I didn't need 10 minutes to put them back on! Hopefully your lymphoedema will be kept mild like mine is.

  • Will do!  There’s no time for complacency in our situation!