She was especially pleased with the changes in colour and texture on my affected breast: it's no longer an angry red colour, the tissue can be moved from side to side and is no longer "stuck" to the chest all, and the skin is less bumpy in texture. I guess the changes that I thought were just the morphea were actually from lymphedema caused by the morphea. The morphea made the skin much less elastic which meant that the lymph fluid couldn't move as easily. Eventually the lymph fluid just built up in the breast and backed up into the arm.
I wish I'd known more about lymphedema because then I'd have asked to see the physiotherapist early on. She could have worked on the skin and possibly prevented this whole lymphedema mess. Unfortunately, it occurred to no one that the morphea could cause lymphedema problems because morphea is rare and lymphedema is not well-understood. The lesson here is that if you've had radiation to a body part and you develop any kind of skin condition on that part, look out for lymphedema.
My oncologist is also sending me to Princess Margaret Hospital in Toronto where they're doing this COMPACT (Community Oncology Molecular Profiling in Advanced Cancer Trial) clinical trial which is based on this IMPACT trial. From what I understand, they're looking for genetic mutations in specific cancer types so that they can eventually develop therapies targeted at the effects those mutations cause. The advantage to targeted therapies or treatments is that they're much less toxic to healthy cells and they're very effective.
This clinical trial doesn't require much of anything from me (just a visit to Toronto - everything else happens behind the scenes) and my participation will help in the future. I know that targeted therapies based on this trial are many years or decades away but if the information isn't collected now, those therapies will be even longer in coming. So I'll be participating.
I also asked for a referral to the dietitian on staff - my psychologist had suggested this in my last appointment - and they're setting that up.
I think that's it for yesterday's appointment. In other news, someone had asked about what my arm and hand wrapping looked like so I took a few pictures with my phone with Gozer in the background. Enjoy!
|My outer forearm and hand on Gozer. The thing you see at the very top of the picture is a purple hippo squeaky that Gozer is holding in her mouth while she sleeps.|
|My palm and hand. My fingers are coming to get you!|