I got diagnosed on march 20th and got discharged from hospital on 24th March. I have Necrobiosis Lipodocia in my right lower leg, which I've been suffering with for 13 years.
They finally did a biopsy after begging for investigation for years as lost faith in Dermatology in Cornwall. it took going in with Kidney issue to a&e, being admitted for treatment. They had put a vacuumed pump on my leg to help with healing, yet 3 days later, when on even more pain, discovered they had not put on the base dressing to wound and just out the foam straight on. It had then fused to my wound. A surgeon just came in and ripped it off. Crating explanenional damage. This triggered Dermo to finally do a biopsy.
1 week later I was sprung with the news, just left on my own and Discharged, saying they would arrange plastic Surgeon appointment. I had appointment 2 weeks later, in Plymouth, they then said it look deep, CT scan shows it had not metastasised to main body. MRI taken a week later in Cornwall at last.
1 week later after no news, I chased Skin Cancer nurses at hospital and they said has been some kind of mix up and they were unaware of me, then upon investigation another hospital have results and they are unaware of me too. I then got a call thr next day from Skin Cancer nurse saying MRI shows is deep than thought, has spread to muscle and bone and that Dr is on holiday.
I have been assured now, there be a plan now. But I just feel I was ignored for so long, left in absolute agony for years while my leg became cancerous. I am probably having amputation but I'm so scared as left with no info in pain and just want to be back in hospital for care before.
I'm homebound and can't walk, a nurse comes everyday to bandage my leg. But how can I admit myself back in?
Any advice about this type of cancer and what stage I am, has anyone else experienced leg amputation and what to expect?
Thank you for reading, Em
Hi EmmyGremlin and a very warm welcome to the group which I hope you'll find is both an informative and supportive place to be.
I'm sorry to read that you've recently been diagnosed with SCC which has spread to your bone and muscle. I don't have any experience with this type of skin cancer but clicking here will tell you more about it, including how it's usually treated.
Do you have an appointment yet to see your consultant to find out what the treatment plan will be?
It would be great if you could put something about your diagnosis and into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
let us know what happens when you see your consultant.
"Never regret a day in your life, good days give you happiness, bad days give you experience"
