post chemo/RPLND Lymphedema

[Owen]

I did 3X BEP from Dec '06 - Feb 2007, but b-hcg markers still high after chemo, so ended up doing RPLND on April 24.

Surgery went fine, removed 22 nodes from left side, a week in the hospital, but after I got home, my left leg swelled and is quite painful.

Surgeon did the ultrasound to rule out Thrombosis (clotting) then referred me back to my PCP, who suggests it may be lymphedema. Surgeon says it is just post surgery swelling that should go down once the lymphatic system learns news ways to drain the leg.

I am now seeing a Certified Lympedema Therapist (CLT), who is doing Manual Lymph Drainage (MLD), and who has shown me how to wrap my foot and leg. I am wearing a compression stocking during the day.

Is this a common occurance after RPLND, and do we think it is really lymphedema, just some swelling or something else?

Sign me: no meat for over 60 days on my low-fat diet, with 44 pounds lost since start of treatment.

[Scott]

Lymphedema is a known risk of RPLND, so that does seem likely. As your surgeon said, it should improve as your body adjusts.

You're still on a low-fat diet? Is that on doctor's orders? Are you getting enough protein? Supplementing with medium-chain triglycerides? Working with a nutritionist?

I believe my problem with swelling in my feet, ankles, and legs was more in response to my diet while trying to recover from chylous ascites than from my surgery directly.

[Owen]

No doctors orders as far as diet. I lived with a vegetarian for years, so am familiar with getting a complete protein diet.

Mostly working with my naturalpath, who does supplements as well as overall food recommendations, but not a specific diet.

The MCT are a great way to go, unfortunately I have Hepatitis C, and they just don't mix well (I avoid A&K as well).

I wass assuming the lymphedema was from the RPLND since it was only the left leg.

What I am looking more for is a second opinion of whether it really is lymphedema, or whether my PCP simply "assumed" it based on my recent surgical history.

My CLT is saying compresion stockings for life, and I just don't want to go there unless I have to, but as she pointed out "at least I am alive".

[Karen]

Owen,
Related info is that lymphedema in the arm is not unusual in women who have nodes removed due to breast cancer, and the compression sleeve does help. A friend who experienced this did see an inprovement but still wears a compression sleeve. I would suggest a second opinion to ease your mind if nothing else.