Adamantinoma- feeling alone with decisions to make

Hi everyone,
As my last post said, I have a rare type of bone cancer that is similar to synovial sarcoma. It’s known as adamantinoma. I wanted to make a post today because I am facing a lot of tough decisions, and I feel like if I write it out and maybe get some support I can feel more comfortable. The good news I got was that it has not spread anywhere else in my body, the bad news is that if it does, chemo and radiation does not work for this type of cancer, and the prognosis is very poor.
Another main characteristic of this disease is that its slow growing and rarely metastasizes, usually around 10-15% of the time.
I initially had a orif to correct a fracture, they originally thought it was benign dysplasia and used screws and rods to strengthen the bone. This, in hindsight, may have spread the cancer cells to the surrounding tissue.
I have seen 3 doctors that have all given me 3 options.

  1. is to watch and wait. It has such a low likelihood of spreading that it could be 40 years before it spreads anywhere. (I’m 29). the risk of this is that local recurrence is high and it may result in another fracture, pain, etc. I am also taking a greater chance of mets. This is the only option in which I will have full functionality of my leg.
  2. is a tibia replacement, either complete metal or complete cadaver bone, or a mixture of both. The con with this is that there is a higher rate of infection/ rejection, around 20%. This can occur up to years after the surgery, and this places a higher incidence of fracture of the cadaver bone, lower functionality, and sometimes more surgery is needed to correct. Also the patellar tendon is less likely to attach, meaning I would have a limp and be unable to extend my leg completely. This is the preferred method to treat among most studies/doctors.
  3. Amputation- probably above the knee. Although this seems to remove the cancerous area, I have read several studies where metastasis occurs after the amputation, and really doesn’t lessen the chance of metastasis in general.
    All 3 of the doctors I’ve seen have leaned toward a different one of the three options.
    I am so uncertain of which way to go with this. I don’t want to regret my decision. Has anyone else had to face these decisions? What helped you through? I feel like any decision I make might be wrong.

Also, if anyone has had to apply for disability, how did you go about it? I know it takes a while to be approved, and I have no idea how to apply. I lost my job as a nurse because I couldn’t walk and i wasn’t employed long enough to get short term disability.

I know this is a long post, and I know that there isn’t any adamantinoma survivors here, but I am hoping someone can give me some experience to help me feel less alone. I am so young and I just want some semblance of a normal life. Please comment and help me out. Thanks.

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Hi Disco, If you read my reply to your last post you will know that I have been through something slightly similar. I had Synovial Cell Sarcoma, a 2 for 1. They talked about removing my leg but I didn’t want them to. They saved it, did some experimental chemo, 31 special rad treatments and a year later I was somewhat back to myself. Life went on for 10 years whereas the site fractured in an uneven line. I’m not gonna kid you the pain was excruiating. The first 2 attempts at saving my leg were bone grafts, a metal rod and screws. Neither one worked. They talked about cadaver transplants but like you said bigger risk of infection. They finally decided to use my fibula bone for the transplant along with the metal and the rod. Maybe they could do that for you? I don’t miss the fibula and it doesn’t seem to cause any problems being gone. Even with all that I walk with a limp and choose to use a crutch rather than a cane. I cannot do a lot of things that I could do before but have found new skills and things to learn and do. It took quite a while to get back to feeling like I am fully living but I never gave up or got depressed. And yes losing who you are is hard. I was a physical education teacher and into a lot of sports and that is all gone but I can still play a mean game of pool! lol
As far as disability goes, go to your local Social Security office or online to fill out the paperwork. Keep a copy because they will have you do it again and again and again. Be honest. Don’t put short answers, explain what you are going through and how you feel. And when you do get your disability don’t think that means you have to sit on your butt all day, get out there and still enjoy life and do what you can. I am a big advocate of volunteering, there is always something you can do.
By the way I am a 35-year survivor and was almost 22 when I started.
I hope this helps you some.

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Hi Pepsi! I did see your last reply. That definitely gives me some hope, can I ask how big your lesion was? The reason I ask is because mine is about 3/4 of my tibia and I’m wondering if the fibula would be enough to cover it. I can imagine the pain, I initially fractured mine and it was the worst pain I’ve felt in my life, and had to stay like that for 2 weeks. I was barely conscious most of the time. But yeah I feel like I don’t want any of the options, I just don’t know what to do. I actually found a girl on Facebook that had the cadaver bone transplant and she did really well with it. What I’m hoping too is that if I got that I would have less chance of infection because I won’t be on chemo. I can imagine chemo and radiation is no happy ride, but I wish I had the option at least.
Also I am wondering if I initially apply with a lawyer on my case or would push the disability through. Did you end up having to get a lawyer?
Thanks for taking the time to talk to me, it really does help. To think of another 35 years sounds like a miracle! At most I was hoping for 10-15.

I actually got to see my tumor and it was about the size of a Navel orange. It actually reminded me of an oversized M&M. lol They didn’t tell you the size though back then like they do now so that is the only way I can reference it. I didn’t do really all that bad with the Chemo and rad, they actually said I did better than most, my problems started 10 years later with the break that they said was due to the radiation making by bones weak. So this is where we are different.
I can tell you if you go with a transplant be prepared to stop anything with caffeine in it and if you smoke stop that also, it inhibits the healing. They said that was the problem with the bone grafts and I guess they were right because I stopped for 6 months before the transplant and a year after and it was able to heal.
As far as disability I did it myself, maybe it was different back then? I just know I filled the paperwork out maybe 3 times and then they called me in for an interview. I was in a private room with a woman and she was trying to understand and the easiest way I could do that was dropping my drawers. lol Because of my situation I have no muscle or fat covering my hip and my thigh doesn’t have as much as it should either, so the bones are more prominent. As soon as she saw my leg for herself, I was approved. I do know of other people who have had to get lawyers, but they tried by themselves for a while first.
Please don’t give yourself a limit, I’m looking for at least another 30! lol

Pepsi! I see you’re at 32 years survival and counting! What an inspiration: and it sounds like you’re looking forward to another 30.

More power to you!

Seenie from ModSupport