Saturday, April 06, 2013

Oncologist appointment and more lymphedema

I saw my oncologist yesterday and she is very, very pleased with the improvements she saw in the areas affected by the lymphedema. She's so pleased, in fact, that I don't need to go back for eight weeks.

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!

As much of my arm as I could get. The wrapping goes up to my armpit. The wrapping at the very top is a different colour because it's actually a different product with higher compression. We used leftovers to wrap my arm and since it's important to get the wrap good and snug at the top (or else it starts to slide down and that's very uncomfortable), using the higher compression wrap is ok there.

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 inner forearm and hand. The creases you see are from the edges of the inner comfort layer wrapping (and sometimes from the outer layer). Both wrappings spiral up my arm from my hand and when I rotate my arm or hand the edges of the wrappings deform a bit. 

My hand. There's a bit of bulk over the fleshy part of the thumb which makes it difficult to use the hand. There's extra bulk over the wrist, too, but I needed that to have even compression around the wrist. Because my wrist is narrow it was hard to get the comfort layer tight enough (but not too tight!) around the hand, wrist, and forearm to provide much-needed compression on the wrist. There's extra comfort layer around the wrist which makes wrapping the area sooooo much easier.

My palm and hand. My fingers are coming to get you!

1 comment:

manchester fat acceptance said...

thank you so much for posting the pictures - i appreciate seeing the wrappings. that looks hard to move in!!!

and Gozer looks so soft and floofy.... the Huntress appears so innocent when she is laying down and sleeping... ;)