Melanoma stage 1a - worried about symptoms I've been having since declining the WLE

Hi everyone x

so I was diagnosed in May with melanoma stage 1a. 0.2mm. On my right leg. Just at the side of my knee. 
To my surprise … did not expect that!! 

I was offered the WLE- but declined this due to my derm and the plastic surgeon saying this was a very small melanoma and the chance of return is very very slim. 
I’m not the best around needles and blood … the thought of another procedure was causing me nightmares and countless sleepless nights. My cancer nurse called me almost immediately when she found out I’d declined this … which of course gave me second thoughts as to whether I’d made the right decision. We have another appointment booked in a few weeks - she said this is to make sure I know how to check my lymph nodes etc. perhaps a bit of a telling off too for declining the WLE? 

I am writing this post for some advice. 

over the last few weeks I have had some very strange feelings. Random bursts of sweating. Without feeling too hot? Intense itchy skin… feels like ants are crawling over my bones. All worse at night time which is driving my partner crazy because I’m fidgeting most of the night! Random sharp pains over my torso that make me jump. Rashes over my tummy ( not itchy) 

I have researched and researched these symptoms. With the melanoma diagnosis. I just have a horrible feeling that this isn’t over for me. They say when you know , you know ? 

I am very much looking forward to my appointment in a couple of weeks to hopefully put my mind at ease but in the meantime. Has anyone experienced these things with the same diagnosis ? I’d be so grateful to any replies. 

many thanks to whoever has read all of this. I wish you all a wonderful day. 
Godbless 

  • Hi Kate,

    I haven't experienced any of these symptoms & I don't know any other patient who has, although it definitely needs checking out at your appointment. In fact, the usual symptoms for a progression (spread) of melanoma would be a painless, hard lump in one of the lymph node areas (in your case, either behind the knee or in the groin). Spread further than that would produce symptoms of pain in a specific area rather than across the torso. Sweating, rashes, itching aren't a usual symptom of melanoma but may be something totally unconnected.

    Hopefully the nurse can put your mind at rest & I'm sure she's not going to tell you off about refusing a WLE - she will just want to ensure that you know what to check for in the future. Try not to Google, it's not up to date and it tends to focus on worse case scenarios! Good luck and please let us know how you get on,

    Angie (Stage 3 melanoma patient since 2009)

  • Hi Angie. Thanks so much for your reply. It really means a lot to me. I have read through so many of your responses to people and realise how many people you have helped with such kind wise words of reassurance and knowledge. 

    It’s great to hear that these symptoms aren’t common with melanoma. Phew! After watching many videos of melanoma survivors, and hearing about how their stage 1 diagnosis quickly turned into stage 3/4 has really worried me. Although the doctors/nurses have been very supportive. It’s such a long process. The waiting game between appointments is hell on earth. I’m sure you can understand that along with many others. 

    I don’t seem to have any swollen lymph nodes thankfully. I do try and check every 4 weeks as per the derms instructions. I do have a new funny looking mole on top of my foot that has appeared within the last few months. I used the boots free online mole checker to check to see if it was anything to be concerned about. It actually caught my last mole that was melanoma after my GP telling me it was nothing so I am really quite impressed with the free service. It caught mine very early. The mole on my foot is being flagged as melanoma too so I’ll be sure to get that checked out at my next appt. 

    I will update as soon as I can. Thank you so much again, Angie for your time to reply to me. I really do very much appreciate it. 

  • Hi Kate, I have just recently joined this group and saw your post. How are you doing now? 
    I too have just recently had a stage 1a superficial melanoma removed from my inner lower leg. It was 0.3mm so super early and only just broken through the skin similar to yours. I have been so an us like yourself, I research things too which to be honest makes it so much worse it’s like we are looking for negatively ♀️I was offered a WLE as a pre caution my margins were already clear I was thinking I couldn’t do it too but then I just did it as I thought I would be over thinking it if I didn’t. I feel quite good now and will receive two more follow ups over the next 12 months. I had zero mitosis and no ulceration either so all good results. 
    as someone who has been diagnosed with melanoma that gives you the access to dermatology for life so any further worries you shoudnt need to go to the GP or the boots service either. I’m not sure if you were informed of that.

    Hope you are doing ok 

  • Hiya. Thank you so much for your message. It’s lovely to read similar experiences. Makes you feel so comforted. 
    im so sorry to hear about your diagnosis. It’s truly devastating. No matter what the stage. It really wakes you up. 
    I recently went for another check. My lymph nodes appear fine but they want to do some blood work. So I have that next Wednesday. I think if they come back ok I’m really going to try and forget about it and start living my life like I would before the diagnosis. 
    No more looking things up and worrying about every small pain I have. It really takes over your life and I miss having that care free attitude. 
    I didn’t realise you have access to dermatology for life. That’s very reassuring as going through the GP takes such a long time and in my experience was quite difficult getting the referral as my GP told me my mole was NOT cancerous and if I wanted it removed cosmetically. Would cost me a lot of money. I didn’t even ask for that as it was on the side of my leg so didn’t really care what it looked like as it was mostly always covered up. So glad I trusted my gut as he was wrong. 
    thank you for replying, and I really hope all is well with you too. 
    may I ask how you are in general ? Have you had any other symptoms with your melanoma? 

    hope you have the best day. 

  • Hi Blondie83,

    I'm sorry to hear about your diagnosis but it's good that it was caught very early & that your recovery is going well.

    I just wanted to ask you about the information you were given regarding lifetime access to dermatology for any future problems. I've never heard of this before and I'm wondering if it's something that your particular Hospital Trust is doing. My trust gives an 'open door' policy after discharge but it's only for 12 months - after that the patient must be referred through their GP. 

    The forum T & Cs say that hospital names mustn't be mentioned in posts. I will send you a friend request - if you accept it we can chat by private message & we can discuss our hospitals. I hope you don't mind but I want to find out what different hospitals are doing so that we don't give incorrect information to discharged patients. If it turns out to be individual Trusts doing this, it will then be up to patents to enquire as to their Trusts rules. Thank you,

    Angie (Stage 3 melanoma patient since 2009)