News & Events

A letter to the NIH and the AMA from L.W.

Dear Drs. Collins and Madara:

I write to lend my voice in support of those thousands of men, women and children, including myself, suffering from lymphedema.

My story is simple. I had a wide axillary excision for breast cancer in Sept. 2014. I was proactive about the risk of lymphedema following such surgery and had some preventative physical therapy, including arm wrapping, early on, but 3 years later I started experiencing lymphedema symptoms in the affected extremity. I had pain and swelling in the entire arm. I asked my HCPs and researched lymphedema treatment options and facilities or HCPs locally and much to my surprise, in a pretty major metropolitan area (Princeton, NJ) there were very few.

I found a Certified Lymphedema massage specialist and physical therapist. I followed each from then until today, to several new locations, driving as much as 50 min each way for their care. When the PT changed her practice, I found another PT associated with our local hospital and have been going to her, as needed for a few years now. Three times, when the pain and swelling have gotten to be too much to bear and to avoid taking pain killers for extended periods of time, I have had my arm wrapped. This is a technique where the affected extremity, in my case, the left arm, is literally mummified with special elasticized bandages from finger tips to armpit for 24 hours a day, 7 days a week, with several dressing changes weekly for as long as needed, for me, 1- 3 months per episode.

I have endured several courses (each lasting 1-3 times/week for several months) of Complete Decongestive Therapy and Manual Lymph Drainage (massage techniques). These measures have kept the swelling down to mostly a tolerable level from a pain and function point of view. I have pain in my arm and axillary area all day every day. It is worse with heat and humidity. To control the pain and swelling and, hopefully prevent progression, I wear an arm compression garment 24/7. Two, actually as I require one for daytime and one for nighttime compression. They are prescribed by my physical therapist, are custom made, and need to be periodically replaced. They are quite expensive - the daytime one is about $180 and the nighttime one was over $900. Medicare does not cover them. The compression sleeve makes the pain bearable and enables me to function most times without pain killers although I must be careful not to overstress it with too much weight or excessive exercise. I no longer carry luggage on a plane. On the rare occasions that I travel, I check even a small weekend bag on wheels.

I am not a scientist, mathematician or doctor, but several articles I have read have pegged the incidence of breast cancer related lymphedema at as many as 1 in 3 patients who have had axillary lymph node dissection. https://www.nature.com/articles/s41523-021-00276-y That computes to a very large number of people affected and does not even include those with lymphedema secondary to other surgeries or those having primary lymphedema. https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0114597

The need for recognition, treatment and cure is great. From a commercial perspective, the market is huge.

So I write for a few reasons:
1. To put lymphedema on your radar screen
2. To encourage the Investment in clinical trials and other resources to research and improve treatments, especially non-surgical options, for this debilitating condition
3. To fund/encourage the development of tools/devices to detect and measure lymphedema both to assist in prevention and aid in treatment. (My therapist uses a tape measure to gauge progression!)
4. To educate the health care community about this condition, especially prevention strategies
5. And to shine a bright public light on Lymphedema through symposiums, research, clinical studies, scholarships, publications, presentations at medical conferences and other ways to get the word out that this is a real condition that impacts the health and quality of life of thousands of people every single day.

We can send people to the moon, drones to Mars, transplant hearts and other organs, develop and market a vaccine for Covid 19 in about a year. We can accomplish amazing things with the drive and resources to tackle them. Why not put lymphedema on this list, improve the lives of so many people and end their suffering?

LW


Response to Lisa from the NIH

Thank you for your email to Dr. Francis S. Collins, Director of the National Institutes of Health (NIH) and Dr. James Madara, CEO and Executive Vice President of the American Medical Association.  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 commented on the need for greater awareness of lymphedema among health care professionals and more investment in developing effective treatments for this disease.  We are sorry to learn about your diagnosis and understand your desire to advocate for cancer patients afflicted with this painful condition.  We hope our reply will be helpful.

The NCI is the Federal Government’s lead agency for cancer research.  We recognize that cancer and the aftereffects of its treatment can impose serious physical, emotional and financial burdens on survivors.  The NCI actively supports research efforts to ease these burdens for cancer patients and all people affected by cancer and its treatments.

The NCI cancer research portfolio includes support for studies to evaluate the incidence and risk factors for lymphedema associated with surgery treatment for breast and gynecologic malignancies, including the completed Lymphedema and Gynecologic cancer (LEG) study.  This 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 for endometrial, cervical, or vulvar cancer.  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 can be found on the above link. 

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.

In addition, the Ergonomic fluorescence-guided surgery imaging platform for intraoperative assessment of blood and lymphatic vasculature study will enable breast surgeons to see small lymphatic and blood vessels during surgery to avoid vessels and check to see how well they are repaired.  This intraoperative imaging device could improve the health and quality of life for breast cancer survivors.

The NIH is also funding 10 clinical trials involving the prevention and management of lymphedema that are recruiting patients.  If you are interested in participating in a clinical trial, you are welcome to contact 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.   

In addition, the NCI Office of Cancer Survivorship (OCS) conducts and supports research that both examines and addresses the long- and short-term physical, psychological, social, and economic effects of cancer and its treatment among survivors and their families.  You can learn more about OCS’s research by visiting their website, linked above.

NCI also provides up-to-date and scientifically accurate information on cancer treatment side effects through its website, Cancer.gov, and through PDQ® cancer information summaries.  The 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.

You also mentioned that Medicare does not cover the costs associated with lymphedema.  Although as a Federal research agency, the NCI does not offer direct financial assistance to patients and survivors, many national and community nonprofit and private-sector organizations do offer support and assistance.

The National Lymphedema Network (NLN) provides education and guidance to lymphedema patients, health care professionals, and the general public.  The NLN also makes referrals to lymphedema treatment centers, health care professionals, training programs, and support groups, and may also be able to help with specialized garments for eligible patients.

Other national nonprofit organizations such as the American Cancer Society, Susan G. Komen, and Sisters Network Inc. may also be able to offer assistance.  Contact information for these and over 100 more cancer support organizations may be found through the NCI’s online Support Services Locator.

Thank you for writing.  We extend our best wishes for your health. 

Sincerely yours,

Bill Robinson

Office of Communications and Public Liaison

National Cancer Institute