Subject: MILLIONS of People living/suffering with lymphedema need YOUR HELP!!!
Dear Dr. Madara and Dr. Collins,
My name is Dr. Sheri Prentiss and I was a successful practicing physician, overseeing the Occupational Medicine and Employee Health Departments of the largest healthcare system in Illinois when a diagnosis of lymphedema completely disrupted my entire life. Breast cancer treatment left me disabled from lymphedema in my right upper extremity, stripping me of my life-long dream of being a practicing physician. I was subsequently terminated from my executive management position, while on FMLA during physical therapy for the treatment of my lymphedema and I had to completely reinvent myself after 16 years of clinical practice.
I went on to become a best-selling author and highly sought after physician leader, but my journey was not without its challenges. Lymphedema was a secondary blow to my physical and emotional well-being. I wondered if I would never be able to get on with my life. I experienced high levels of psychological, social, sexual, and functional morbidity. Witnessing the disparity among African American women with this disease, I created a 501c3 nonprofit organization, the LIVE Today Foundation, Inc. which provides free compression garments to under-resourced cancer survivors living with lymphedema and I support other grassroots organizations, like LERN that are making an impact in the lives of individuals with this disease.
We need your help, your voice, and your commitment. With the proper safeguards, testing, and monitoring we can make secondary chronic debilitating lymphedema related to cancer treatment a condition of the past but the healthcare industry needs to be fully aware of the consequences of this disease and fully educated on the costs--both direct and indirect, the associated morbidity, and the implications of nontreatment.
Dr. Sheri Y. Prentiss, MD, MPH, CPS/A, CPE, FACPE. CSP® (Certified Speaking Professional™
LIVE-Today Foundation, Inc.
Founder & President
Response from the NIH
Dear Dr. Prentiss:
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 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 of your breast cancer diagnosis and your long history with secondary lymphedema. We understand your desire to advocate for all patients afflicted with this painful condition, and 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 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 been 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, allowing them 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 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.
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.
The 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.
In your email, you mentioned the mission and work of your non-profit organization, the LIVE Today Foundation, and your support for other grass-roots organizations. You may be interested in the NCI’s Office of Advocacy Relations (OAR). OAR is the NCI’s principal conduit for engaging the cancer advocacy community. OAR works with the entire cancer advocacy community—from individual research advocates to national advocacy organizations and foundations—to create a culture of advocate engagement at the NCI. As part of the Office of the Director, OAR facilitates meaningful engagements between the community and the NCI that improve understanding, opportunity, and progress in cancer research.
We realize that the public expects the NCI and the Nation’s biomedical research community to make progress against primary and secondary lymphedema. Please be assured that we have an unwavering commitment to developing effective prevention and therapy approaches for this condition
Thank you for writing. We extend our best wishes for your health.
Office of Communications and Public Liaison