Melanoma Stage 1A diagnosis

Hello , I think you have just summed up how most of us have felt at one time or another, lucky that it could be much worse, and stressed because there’s that uncertainty with cancer incase things at some point do get worse. Most of the time the thinking about it, the emotional side, is worse than the practical dealing with each day at a time side. 

You've hit me on an emotional day, tomorrow I’ll hopefully have my positive head on, as thats how I prefer to feel, it’s just somedays it’s hard. I find if I’m stuck emotionally it’s good to talk or right down how I’m feeling to try and make sense of it all. 

When you say you don’t know how to feel, do you mean, that you’re having many emotions, talking positively sometimes and other times just feeling uncertain but not sure what your uncertain of? 

Hi KT, thanks for the response. Yes I think my emotions are all over the place but when I feel down and scared I feel a bit of a fraud because I don’t feel I have the right to be because my melanoma isn’t that bad. I’ll probably feel better when I’ve had a proper chat with my CNS next week. I’ve only seen her once, last week at diagnosis which was a bit of a blur, then a follow up phone call two days later after the MDT to confirm treatment plan, then I see her fir a proper chat on 17th. I also feel a bit of a fraud being signed off work as I don’t feel unwell, I just have to rest with my leg elevated because the biopsy site is struggling to heal. Not sure whether I’d be better at work, or not, but I am a bit thankful I’m not having to deal with the stresses of my job as it can be a bit full on. What’s your story? I hope you are doing ok and having a better day today.

Hi and a second welcome to the online community.

Please don't ever feel that you're a fraud because you're "melanoma isn't that bad". It doesn't matter what stage it is it's still melanoma and you're bound to feel low.

I was diagnosed 3 years ago with melanoma on my arm and I can still remember how numb and shocked I felt. However, after talking to my SCNS, and being able to ask all the questions I hadn't thought of when told I had cancer, I felt a lot better and hopefully you will do too.

I had the follow up wide local excision (WLE) and optional sentinel lymph node biopsy (SLNB) and I'm happy to answer any questions you may have.

x

Hi you know I remember struggling in to work many many years ago and trying to keep my leg elevated, I’d had keyhole surgery on my knee, not melanoma related. I think I would have been better not to struggle in, and it actually made me more sedentary than if I’d been at home. 

What your saying I think is though that it would give you something else to think about, but work isn’t the only answer to that, have you written all your Xmas cards out yet or watched all the box sets you want to or have a hobby you can start or continue. Have you found out all about melanoma that you want to? 

My melanoma story? Well I have a long profile with it in if you want to click on user name it will take you to it, I also took to writing a blog to clear some of my thoughts away. Briefly I had no primary found, so I haven’t had any skin or moles removed, my diagnosis was when it had enlarged many lymph nodes in my pelvic and abdominal area so surgery was not an option. I had targeted therapy drugs and immunotherapy drugs and became no evidence of disease but I’ve had a recurrence in one rogue node which has been surgically removed and I’m currently awaiting biopsy results for a nearby lymph node that is currently enlarged, but I’m still on immunotherapy Pembrolizumab. It is only one node not any major organs so I understand that “it’s not as bad as it could be” feeling, but as I felt really ill when I was diagnosed and I was told it was incurable I also understand the scary side, and as I am currently feeling better than I was when I was diagnosed in 2015, I have no wish to be back there and as I became clear and off all treatment for a year, I long to get back to that stage again. But my experience isn’t what your looking for really you will want to reach out to other stage 1 people I can imagine. 

I think we probably all have little things that melanoma impacts on that in the grand scheme of things can seem unimportant but can irritate the heck out of us as we are not yet comfortable with. Like one day my brother commented how silly my sun hat was, and that particular day I let rip that if I was a breast cancer patient wearing a wig would he make the same comment, and that I have to wear a sun hat due to my cancer. My bug bear at the moment is Christmas and hospital appointments but it’s the emotion attached to things that makes things difficult I find, well enough waffling from me.

The nurses at my hospital are good, so I hope you have a good chat if there’s any person experience that your after I’m sure if you ask someone will be along to say how it was for them. There’s lots of info in the Macmillan information and support pages as well about treatment, diagnosis, coping etc. There’s also a Macmillan pod at my hospital right by oncology so if I’ve had bad news when talking to my docs sometimes I pop in there to get things straight in my head. There’s also a Maggies centre at my hospital that has emotional support help, either chats or therapy sessions, I haven’t tapped into that as it’s a distance from home, but many others in other groups here rave about them.

Best wishes and if I can be of any help with any links give me a shout. latchbrook and many others have had a wide local excision and a sentinel lymph node biopsy if you want to ask any questions I’m sure they will pop in.

[edited - oh look there you are she has]

Best wishes

Really appreciate your support KTatHome and Latchbrook. I guess I just need to give myself a break and wait until I can have a proper chat with my CNS and get some answers to my many questions (I’m writing a list of them!) And Latchbrook I will definitely take you up on your offer of your experience of the WLE surgery and more specifically the recovery. I’ve been told mine will take a long time to heal as it’s on my lower leg. Thanks again and take care all x

I'm more than happy to tell you about my experience. It would probably be a good idea to wait until you've spoken to your SCNS as she may well have lots of information to give you about it. 

Mine was on my arm, so was quite easy to deal with, but there are quite a lot of others in the group who had one on their leg and I'm sure they'll let you know how that affected them.

x

Hi

My WLE was on my lower leg a year ago on the 12th!I then had to have mine re-done because the margins of what they removed weren’t clear. Anyway, feel free to ask away...

For the first WLE, I was signed off work for 3-weeks and told not to drive. The second time, which was 2-months later, it was only 2-weeks because they didn’t go as deep, just wider.I’ve got rather fleshy calves though, so there was plenty going spare to easily close the wound, and I had absolutely no problems healing. If you’re struggling with your biopsy wound though, it might take longer for you.

It is very worrying, and I think we all understand that ‘fraud’ feeling, but you are not, and you have every right to be scared.

Best wishes, Kate x 

Thanks Kate, and thanks for getting in touch and helping reassure me I’m not going mad. I hope you are doing ok with your treatment. I may pick your brains again once I’ve got more clarity on my situation, if I may?

take care x

Thanks again, yes I’ll wait and see what the full plan is. My melanoma is apparently 0.59mm so I’m expecting a 1cm WLE and there was question of a skin graft as my biopsy scar didn’t hold, but I’ll wait till I’ve more clarity and pick your brains more then, if that’s ok?

thanks and take care x

Hi WJaney

I was diagnosed on 27 November with Stage 1 also and have had the same feelings as yourself! My mole was on my jawline and the excision lesion healed really well thankfully!  Because of where it was I heard everything - so just not looking forward to the noises again! 

I’m hoping to have my WLE done before Christmas but can’t see it happening at this stage as the NHS are striking where I live! My nurse had said she would call for a catch-up but still haven’t heard anything from her so feeling a little neglected! 

Hoping your wound starts to heal and you get your WLE soon! 

xx