Saturday 4/6/19 - new info & resources from The James

I've finally shifted my care fully to The James Cancer Center here in Columbus and I'm very pleased with the quality of care from my new oncologist, surgeon, and all the staff. I've received some mixed news during my recent appointments but I feel at least that I'm getting a more thorough education about my condition and what I can still improve and what I can't.

First, on the oncology side, they printed out some articles for us on osteosarcoma survival rates and walked us through it (finally, data!) For young osteosarcoma patients with poor response to chemo (as I had--only a 35% necrosis rate, compared to >90% that's considered "good"), the overall chance of recurrence in a 5-year span was close to 50%. This suggests worse chances than we had thought... which is of course disconcerting... but, it's also a good sign that I haven't had a recurrence yet. My hip and lung scans of the past month were clear. This is especially important because the first few years are the most common time to have recurrence, so being now almost a year out is a big deal. In addition, they're arranging to do genomic testing on my tumor, which will let us know if there are more targeted treatments (e.g., immunotherapy) that might help if the cancer returns.

In general, having now shifted my care, I realize I should have done this MUCH earlier. I won't have to deal with all the complications of coordinating prescriptions and information between the hospitals-- and there's just so many resources once you're officially in the system: more information about what signs to look out for with recurrence, an online forum to reach out with any questions or concerns, and lots of free programming for survivors and caregivers through James Care for Life. I'm on a big kick with this: I joined a tai chi class, made a new friend in a support group, and signed up for lessons on healthy eating, which also includes access to a community garden!! Pretty exciting.

Also, very importantly, I found out about a small group of physical therapists at The James who are part of the sarcoma team and have even worked with multiple hemipelvectomy patients in the past (which is very rare, even among cancer survivors). I have only positive things to say about my previous PTs, but even from my first meeting with this new group, I can tell it's going to be way different. They just understand my new joint better and can finally--finally--answer my questions. For example:

• I have very limited range of motion in certain ways (e.g., leaning forward or crossing my left leg over the right)--which makes it difficult to do simple things like putting on shoes. Can this still improve?
• No, and based on the way the joint had to be reconstructed, pushing this would actually be a risk of popping the hip out of socket-- avoid!
• Many of the normal muscle groups in and around my left hip are still non-existent or very weak, which means I have a strong limp and need a crutch when walking more than a block or two. Can this still improve?
• Yes, patients with my kind of surgery usually continue improving for about two years. She was also encouraged because (as limited as it may seem to me) she said I'm already one the highest functioning cases she's encountered. So we'll see! The plan is that I'll come in for PT once a week, go to the pool on my own twice a week, and do slightly-adjusted land exercises the remaining days. 
• Do I still have any specific precautions exercise-wise?
• As expected, she took a strong stance that I should avoid high-impact activities like running (now and forever). I should also avoid anything that causes sharp pain, but otherwise, I'm pretty much free. So that means I finally have the official okay to go out biking! Though it's a bit tricky when having to stop frequently, this is very exciting and has made my commute to school the past couple days much quicker. 

So yes, in sum, I'm very impressed with The James and I'm inching along in the right direction. I may not have gotten ALL the answers I'd like to hear-- but the news has been mostly positive and moreover a big relief to have those answers at all. I'm feeling well-supported.