Radiation and LE

etherize

I STILL don't know if I really have LE or not.  I've taken 2 LE classes and seen a PT (who said I do have it).  My arm aches daily, in different places but usually just above the back of the elbow where the PTs say it's most common ... I still haven't found a compression sleeve that fits (doesn't cause deep, painful indentations) and I'm about to try my 3rd brand.

Aside from all that complaining ;-) ... I'll be starting radiation in a couple of weeks, and I just saw the RO the other day.  He told me they want to irradiate the supraclavicular lymph nodes (in addition to the axillary nodes).  I do manual lymph drainage as taught by the PTs, but I'm wondering if the radiation to the lymph nodes at my clavicle will essentially destroy them, making MLD on that area pointless.  This RO doesn't think I have LE, by the way.   It's not visible, but it seems to be measurable (although it's very early if it is there), at least the PT thought it was.

So ... I can ask the RO about the radiation but I wanted to come to the source, where people REALLY know what they're talking about. ;-)  Any advice, info on MLD of that area?  Did any of you get LE after radiation?  I'm a bit worried about it.  

kira66715

Etherize, radiation does damage the lymphatics, and there is a higher risk when they radiate the axilla and the supraclavicular area. It will make your MLD patterns different, as you'll want to avoid the neck and go to the inguinal area.

My RO denied my LE. Go with the PT's assessment--at the very least you have latency stage.

The best thing to do, IMO, is to keep in touch with your LE PT during and after rads.

There was a LBBC webnar on LE by Andrea Cheville and she addressed this issue:

http://www.lbbc.org/Event-Archive/2009-02-20-Lymphedema
We placed the most emphasis on lymphedema
in the arm because that's the most common site
oflymphedema. It's the most challenging area for
the body to drain lymph from, since it's quite far
one ofthe strongest predictors of
whether that lymphedema will progress is
irradiation to the nodes abovethe clavicle, above
the collar bone. Radiation-induced damage can
continue to progress over time, and we think this
maybe whysome patients develop lymphedema
years after their treatment because ofprogressive
radiation injurythat onlyinjures the lymphatic
system sufficiently five years after initial treatment.

The lymphatics in the armpit are
compromised through surgery and radiation, which
makes it challenging [...] for the lymphatic system
to remove fluid and solid waste from the arm. We
don't have a good explanation for why it takes a
year, two years, three years. Most women will
develop some suggestion. They'll have an episode
of swelling within three years of their primary
breast cancer treatment, so the vast majority of
women who will ultimately develop lymphedema.

But, Etherize, I work for radiation oncologists, and see a lot of women who have supraclavicular radiation and don't get LE.

The fact that you have questionable/possible LE now, and are facing a treatment that could worsen it, IMO, a good LE therapist could help get you through this.

Kira 

etherize

Wow, Kira, that's pretty scary but very informative, thanks!  

I'm really glad to hear that you do see some women who don't get LE even with supraclavicular radiation.  If I could keep mine at this level, it would be great.

I have to go with the Kaiser PT since I can't afford to pay anybody else.  But hopefully that will be enough.