I was diagnosed with cervical cancer in 1979. My ob/gyn, who also happened to be a surgeon and cancer specialist, recommended a radical hysterectomy–lymph nodes, uterus, ovaries, and 1/3 of my cervix. I was 37, a single mother with a 10 year old daughter, with no intention of having more children so it seemed like the right choice. Little did I know the emotional ordeal that would come.
Perhaps 10 years later I went to a new primary care physician who noticed that my left leg, from ankle to knee, was larger than my right. He thought it was curious, but brushed it off. Over the next 15 years, every time I would see a new physician and point it out, the response would be “hmmm…Interesting” but no one appeared concerned, so I ignored it.
Twenty-five years after cervical cancer, I was diagnosed with breast cancer—no connection, just bad luck (and/or perhaps as a result of HRT.) A group of us formed a support group and invited an OT to speak to us. It was then that I learned about Lymphedema, went to a Physical Medicine doc, and got the diagnosis. Altho’ I live in a Philly area, with some of the finest hospitals in the nation, little was known about lower limb Lymphedema. This was 2003-4. After much searching, I found a rehab group which claimed to have experience with lower limb Lymphedema. Long story short, they did not, and all the misinformation and lack of information caused my Lymphedema to spread to my upper thigh. By the time I found Penn Therapy and Fitness, my left leg was 25% larger that my right.. Before 65, my private health insurance paid 80% of everything. Now covered by Medicare, almost nothing was covered for the past 6 years.
I don’t understand Medicare’s logic, if there is any.
I am 71, with more energy than most women my age, and a very busy life, and I hope I can use some of that energy so that others don’t have to spend 28 years watching their extremities swell, not being able to find help or hope, and then turning 65 and being punished by government procedures.
