Hi, my name is Disco (anonymous). I was recently diagnosed with adamantinoma of the right proximal tibia. I found out because it fractured while I was playing volleyball. I know this is not a group for adamantinoma, but I could not find any because it is so rare. Since bone cancer accounts for 1% of all cancers, and adamantinoma accounts for less than 1% of that 1%… I didn’t know where to turn. I was scared and found this group through calling a suicide hotline. I just felt like giving up, and although it has a good survival rate on the studies I’ve read, I’ve basically lost my entire life. Just 4 months before this I graduated nursing school after struggling to support myself for 5 years as a nurse aid. I thought I had made it through and could finally be happy and have a family. But now I can’t walk without crutches or a wheelchair, I can’t work in my profession that I dreamed of for so long. I had an orif for the fracture because they thought it was fibrous dysplasia, but biopsy was positive for Adamantinoma. I am trying to work with the mayo clinic to figure out a course of action. They said my options are wait and watch since it is so slow growing, have a risky titanium tibia implant (infection etc), or amputate. Most studies say amputation does not prevent metastasis. And I can’t imagine having to lose my leg at 29 years old, or any age really. I feel like my dreams have crumbled in front of me. No one can really understand because I can’t seem to find anyone with the same disease. So I came here to find support. Some kind of hope shot. Please reach out to me if you can think of anything.
Hi Disco,
I understand some of where you are coming from. My cancer was Synovial Cell Sarcoma and I can never find much on that either.
I think Mayo is a teaching hospital, correct? If so you need to pick 1 or 2 doctors from there that you can trust and question everything, then go with your gut and heart.
Shands is a teaching hospital and my doctor said they had a huge conference of about 30 doctors that got together and decided an action for me when I first got my cancer in 1987.
I made it to 1997 when my leg broke just by stubbing my toe.
It was an uneven pathological fracture of the right femur. I also felt that the world was lost. I was a physical education teacher, loved sports, riding my skateboard, anything outside.
It took 4 years, 3 surgeries to get me to where I am today. The first 2 surgeries a rod was put in and a bone graft taken from my body. They didn’t work. My last surgery they changed the rod but they took my fibula bone and moved it up onto my femur.
It did heal to a degree though I can’t do all the things I used to do, I still do quite a bit. I do walk with 1 crutch; I find I like it better than a cane. It did take a while to work me up to just 1 crutch but I got there.
Don’t ever give up they are constantly find new ways for helping us. And you never know this might be opening a new world for you in other ways.
Keep your chin up and tell that cancer you are going to kick its ass!
I’ll be praying for you.
Pepsi, a powerfully wonderful message! Not only for Disco, but for every single person with a rare disease. And Ben’s Friends has over 70K of those!
Disco, visualize yourself after having kicked that Adamantinoma’s ass. That’s where you’re going, right? And then think of what kind of nurse that will make you, after having learned so much about what it’s like to have to cope with something like this.
Congratulations on your graduation from nursing school (doing it while supporting yourself as a nurse’s aid means you were in the “enriched” program, right?). And here you are on a very special “enrichment” journey. Not a pleasant one, to be sure, but one which opens some different doors than you were expecting.
We’re glad you found us.
Seenie from ModSupport