Hi I am so sorry to hear your results. It’s a hard time of the year to get bad news. I felt the same 11 years ago and my results came in early January but I was expecting them at anytime so I know what you are going through.
However I am writing this because mine is a mostly positive story. I had the choice after that of having a groin dissection or watch and wait. There was no other treatment at the time. I went ahead with the groin dissection but on hind site I wish I hadn’t. The doctors didn’t find any cancer in the lymph nodes they took out and it left me with lymphodema in one leg.
Now you are often offered immunotherapy or targeted tablets for a year.
Eleven years on I am now on immunotherapy and have been for over 2 years My cancer spread 4 years ago and I had a large tumour burden . With immunotherapy most of my tumours have disappeared . I have very little side effects and can live as before the melanoma.
I do like most people become anxious around scan results time but that is perfectly normal.
I just wanted to say things will get better and it is an awful shock to be given the results. Over Christmas look after yourself and give yourself a bit of me time. Do the things you like to do. This site has helped me a lot. So has talking to my friends and husband. You will be given a specialist nurse who will help you with any questions. I do wish you well and you are not alone .
Hi K8 1980s….just wanted to check in with you and say Hi….your news has come at a bad time…there’s never an easy time but I think around Christmas is always worse for some reason…..I must admit when I found myself with a diagnosis in Summer I was absolutely devastated…. my backstory is in my profile if you want to look….but I have learned a heck of a lot since then…joining this forum and connecting with others in a similar position to me, hearing from others who have been here a long time like Igrgdgo90 and getting good info from the skin cancer team and Macmillan has all given me confidence to see this very differently than I originally did….time has moved on so much in this field and treatments are advanced….I’ve just started immunotherapy treatment after a 3B diagnosis and I’ve had so much support from this community as you will too…..best advice given to me is don’t google as stuff can be out of date or not relevant…keep focussed on all the things that you love doing in your life….if you have any questions ask them, don’t leave them in your head….and connect on here on any days you don’t feel great…please let us know how you are getting on…take care x
Just wanted to check in too. It’s utterly devastating and hearing the news it’s on the lymph nodes absolutely floored me in the summer x I am only slightly older than you and I also have two children xx sending best wishes xx
Back in 2017, I refused an SNLB when my original melanoma was removed -due to the lymphoma worries.. Not so long later I found a lump in my groin and the surgeons then removed just the two lymphnodes that were cancerous.
No doubt these are tough times you are going through, but like lgrgdg90, I want to tell you that everything is not hopeless. Various treatments and one dose of immuno therapy has -for now- stopped my stage IV cancer in it tracks. I m living a full & normal life, doing an outdoor, very physical job and I certainly don't have your youth to assist me.
Your NHS team will do everything possible to help you, and I recommend reading others experiences so you have an idea of what could lay ahead. Of course we are all different and the treatments affect us all differently; but it really reassured me to have some knowledge and enabled me to know what questions to ask the doctors and nurses. You can click on anyone's user name to read their journey (if they've written one).
I wish you all the very best, and if you want to ask any questions at all don't hesitate to post here or feel free to send me a message.
Take care
J
Don't wait for your ship to come in, swim out and find it!
Hello, I just wanted to add my sympathies to your new diagnosis. It's a harder time of year too when we're all supposed to be full of Christmas cheer. I was in your position in April this year. It does feel like your whole world as you know it has stopped turning. Devasting news to receive.
I found myself worrying about everything from the songs at my funeral to how I was going to tell my 21 yr old daughter to being angry as at 58 I'm too young to die. When the next stages kicked in (September) for me this is three weekly doses of Pembro I started to settle a little and it stopped ruling my life but fitted in to it.
I have of course chosen two songs for my wake anyhow but that needed organising anyway!
I've learnt so much on here and certainly these new immunology drugs seem to be achieving incredible results. Hang on in there hon, the shock takes time to adjust to. Of course I still have tearful times when I think about the treatment not working but on the whole most days are good just filled with my normal activities. You've got this and all of us here will support you throughout the journey. I hope you've got loved ones to talk to and cry with and to hug. Take care xx
