Dear Dr. Madara and Dr. Collins:
I first encountered the disease of lower-limb lymphedema in my father, who complained of “this damn leg” as it swelled to twice its normal size from prostate cancer treatments. He was a professor of surgery at Yale. He died of his cancer before I was diagnosed with mine, ovarian cancer, at age 45. Eight years later, my LLL was diagnosed. I want to share my story—one of huge privilege.
It was a hot summer day when my foot swelled up like I’d stepped on a bee. I came to realize the tightness I’d been feeling in my thigh was not due to my new hobby, horseback-riding, but to something else. The whole leg was swollen, but especially the thigh. I was appalled that I hadn’t known to be looking for it, to be expecting it as a possibility. When I expressed this frustration to my primary care doc, she said, “Well, so you start wearing the compression garments now, or you would’ve started wearing them then.” As if there’s no difference. As if this isn’t a progressive disease. As if the bulk and fibrotic tissue changes happening in my thigh over time of untreated lymphedema meant nothing.
I’ve been wearing custom compression garments day and night for 4 years now and doing all I can to manage this chronic disease. My BMI is 21.6. I walk, bike, kayak, swim, and do yoga. I do self-Manual Lymph Drainage and also use a pneumatic pump for 60 minutes most nights on my leg and abdomen. I practice yoga, deep breathing, and meditation to try to improve my deep lymphatic flow and to calm my fears. (I wrote about this in the Winter 2020 issue of Pathways, the lymphedema journal of Canada.) I travel 2.5 hours to see a lymphedema specialist once a year in Minneapolis.
And still this disease progresses. This spring I started to have more swelling in my foot and in my genitals. I developed ‘lymph leakage’ which I first thought was urinary incontinence. My lymph doc, Dr. Nancy Hutchison, suggested I add more compression and more pump time. This has helped. She also referred me to one of the few ‘super micro’ surgeons working on lymphedema, Dr. Wei Chen at Cleveland Clinic. My husband and I did the 14-hour drive to consult with him. Through ICG (indocyanine green) lymphography testing, I learned that the tissue of my thigh is now Campisi stage III, “properly called ‘elephantiasis.’”
How does one ‘come to terms’ with the deforming, disabling nightmare of elephantiasis?
I am pursuing LVA (lymphaticovenous anastomosis) surgery. I have hope that the surgery might set the clock back on this disease, buy me some more time to be mobile, active, my 58-year-old self.
But even our ‘good’ insurance balks at covering the surgeries Dr. Chen recommends. We are in the process of appealing. Months slip by. The progressive disease progresses. I try to breathe away my panic.
And mine is a best-case scenario. I have everything going for me: my ‘ins’ with the medical system; good health insurance; excellent health; a college education; time for follow-up and self-care; a supportive spouse; money to pay for the copays, the travel, the hotels.
Most do not. Did you know that once people are 65 and on Medicare, custom compression garments—a basic necessity—are not even covered?
As more of us thankfully survive our cancers, much more research needs to be done on this terrible side-effect from surgeries and radiation. I know of a man whose genital lymphedema (which can swell testicles to the size of grapefruits) caused him to kill himself. This is no joke.
Please use your positions at the American Medical Association and at the National Institutes for Health to help support and fund the research so sorely needed to better understand, prevent and treat lymphedema.
Sincerely, Lisa McKhann
Reply from NIH:
Dear Ms. McKhann:
Thank you for your email to Dr. Francis S. Collins, Director of the National Institutes of Health (NIH). Dr. Collins’s office has asked the National Cancer Institute (NCI), a component of the NIH, to respond directly to you.
In your email, you related your father’s and your history of living with lower limb lymphedema following treatment for cancer. We are sorry to learn of the loss of your father to cancer and lymphedema’s impact on your health and wellbeing over the years. We appreciate you taking the time to share your experience with us.
The NCI is the Federal Government’s lead agency for cancer research. We recognize that the aftereffects of cancer diagnostic procedures and treatment can impose serious physical, emotional and financial burdens. The NCI actively supports research efforts to ease these burdens for all people affected by cancer testing and treatment. We are including some information about such efforts that may be of interest to you.
The NCI cancer research portfolio includes support for studies to evaluate the incidence and risk factors for lymphedema associated with surgery. One such study, completed Lymphedema and Gynecologic cancer (LEG) study, determined the incidence of lower-extremity lymphedema and risk factors for lymphedema development, as well as associated impacts on the quality of life in newly diagnosed patients undergoing surgery. Results from this study found that lower-extremity lymphedema occurred in more than 30% of gynecologic cancer participants and was not associated with radiation or other risk factors. Swelling in the leg decreased with patients older than age 65 but increased with a lymph node count greater than 8 in the endometrial cancer group. Links to all the published findings from this study may be found on the page linked above.
Another example is the Prospective evaluation of a surgical solution for breast cancer-associated lymphedema project, which will conduct a clinical trial with a new interventional device that has shown in large animal studies to promote new lymphatic vessel formation. If successful, this device will innovate the treatment approaches for patients suffering from lymphedema by providing the means to restore lymphatic function.
As well as promoting research, the NIH and NCI are dedicated to presenting scientifically accurate and up-to-date information to the public. The National Library of Medicine, an NIH component, offers links to educational resources on primary and secondary lymphedema through its MedlinePlus website. Additionally, the NCI summary “Lymphedema (PDQ®) – Patient Version” provides information in lay terms about the anatomy, pathophysiology, clinical manifestations, diagnosis, and treatment of cancer-related lymphedema. Information in technical language may be found in the health professional version of this summary.
The NIH is also funding 9 clinical trials studying the prevention and management of lymphedema that are recruiting patients. We invite lymphedema patients interested in participating in a clinical trial to call the NCI's Cancer Information Service (CIS) for assistance in finding one. The CIS is the source for the latest, most accurate cancer information for patients, families, and the general public. CIS clinical trial specialists can conduct tailored searches for clinical trials in a patient’s area, as well as share treatment information and support resources. The CIS is available Monday through Friday, 9 a.m. to 9 p.m. Eastern time, by calling 1–800–4–CANCER (1–800–422–6237) and pressing 2 to speak with a clinical trial specialist. CIS information specialists also offer online assistance through the LiveHelp link.
We recognize that the public expects the NIH and the Nation’s biomedical research community to make progress against lymphedema. Please be assured that we have an unwavering commitment to developing effective prevention and therapy approaches for this condition.
Thank you again for writing. We extend our best wishes for your health.
Deborah Pearson, R.N., M.P.H.
Office of Communications and Public Liaison
National Cancer Institute