I am a cervical cancer survivor who at age 42 had a modified radical hysterectomy, BSO, and the unfortunate - but necessary-bilateral pelvic lymphadenectomies. My Gyn-Oncologist was one of the best, and very up-front about the very real possibility of developing lymphedema. However, I didn't flinch at the surgery - I had just lost a dear friend to the same disease, however her surgeon was not as aggressive as mine.
I did wonderfully - no mets, no problems, for a couple years. Then we went camping at the beach during a very unusual hot spell. My legs sunburned, and since then the right leg has developed lymphedema.
I work in healthcare - not in patient contact, but in Health Records and Information Services. 3 years ago I attempted to get HMO clearance to go to a lymphedema treatment program nearby. I was referred to the HMO oncologist, a great guy and good practitioner. He examined me and was very much in favor of the lymphedema treatment. However, the HMO reviewers did not concur and thus sent me to see...a surgeon. Now, this was a fellow who no longer practiced, but worked for the HMO as a physician reviewer. He said, yes, I did have lymphedema, but, actually, nothing really worked, so live with it. But I left the exam not really knowing if he was going to approve or disapprove, as he said the case had to go back to the full board. Weeks went by. I called daily, no one called back. They were right next door to the hospital, so I went and planted myself in the office, but no one was "available." Finally, the UR nurse couldn't hide from me anymore, and gave me the news that I had been declined, by physicians who should have known better.
So, I changed insurance at the new year and tried again. This time I was referred to yet a different oncologist for consultation. She reviewed all the previous work, did the measurements, listened to my complaints. She then ordered an IVP and CT of the abdomen to prove there were no other obstructions. The results were negative. She was very pro-treatment. I never heard another thing...
New year, new insurance, new attitude. My hospital was just starting a Lymphedema Treatment program, so I got a referral from my new PMD and was evaluated and accepted. I started 2 weeks ago and I am thrilled! My right leg has about 32% greater volume than the left, and was becoming fibrotic. At the end of the first week my foot and ankle were back to normal. (I haven't seen my ankle in years!) We are working on the rest of it. I find bandaging a big problem, but I will get the hang of it. Keeping the bandages up on thigh are a problem. So, any hints will be appreciated.
I believe whole-heatedly that education - for physicians, nurses, other health care practitioners and the general public, should be a major focus in the coming year. There are lots of us out there!