When you hear the words “you have cancer,” your world tilts on its axis. I know because I’ve heard them twice. I am grateful to be a breast and ovarian cancer survivor, but surviving cancer did not mean my fight was over. In the aftermath of my treatments, I developed a chronic and often misunderstood disease that I will live with for the rest of my life.
I was no stranger to lymphedema. My mother had suffered from it, as had a close friend, so I knew the toll it could take. Before my own surgery, I warned my doctor not to remove any lymph nodes that weren’t absolutely necessary. But despite those warnings, I still developed lymphedema.
That’s why I am encouraging every patient to have candid conversations with their doctors before, during and after treatment. The truth is, there are a few key things every cancer patient needs to know.
Today, more than 10 million Americans live with this disease. That’s more people than those living with multiple sclerosis, muscular dystrophy, ALS, Parkinson’s disease and AIDS combined. For breast cancer patients, the risk is especially high. Up to one in five will develop lymphedema after surgery or radiation. Behind every pink ribbon this October, there are millions silently struggling with swelling, pain, and disability that rarely make the headlines.
Lymphedema occurs when the body’s lymphatic system is damaged, often as a side effect of cancer treatment. The lymphatic system is not something most of us think about, but it’s essential to immune function and fluid balance. When it is disrupted, lymph fluid builds up, leading to swelling, heaviness, discomfort and a lifelong need for careful management. There is no known cure. But with early awareness and intervention, lymphedema can be better managed, and sometimes even prevented.
One of the greatest challenges we face is silence. Lymphedema is often overshadowed by the larger story of cancer survival. After doctors removed 19 lymph nodes from my left armpit and three from my right, I was cured of cancer. But the cost of that cure is a lifelong, incurable disease. There are no approved drug therapies, no cure on the horizon and far too few treatment options.
Since the disease is so often misunderstood or misdiagnosed, many patients suffer for years without even knowing what afflicts them. Part of the problem is a lack of provider education. One report found that in U.S. medical schools, the lymphatic system receives less than 30 minutes of attention over four years of training.
In 2019, I took my story to Capitol Hill, urging lawmakers to fund research into this neglected disease. Those efforts helped establish the first-ever National Commission on Lymphatic Diseases, tasked with advancing our understanding and improving care for people living with these diseases. We have begun to see progress as a result. Yet the fight is far from over. Funding for lymphedema research still lags far behind other conditions despite its prevalence.
As we push for systemic solutions, the public deserves to understand the risks and the steps they can take right now.
First, ask your doctor about your personal risk. The type of surgery, the number of lymph nodes removed, even your body mass index. The more you understand your risk profile, the more empowered you are to protect your health. This may include bioimpedance measurements to track changes in lymphatic flow, along with physical therapy, gentle exercises, and healthy lifestyle choices such as regular activity and a balanced diet.
Second, have a frank conversation about lymph node removal. Too often this step in treatment is discussed in technical terms, but for the patient, it has real consequences. The more nodes taken out, the higher the chance of developing lymphedema. Knowing that ahead of time helps you weigh your options and plan for follow-up care.
Third, think about prevention not as an afterthought but as part of your treatment plan. Gentle exercise, physical therapy and healthy lifestyle choices can reduce risk. I encourage women to talk to their care team about what they can do before and after surgery to give their bodies the best chance at avoiding complications.
Fourth, don’t ignore the early warning signs. Lymphedema doesn’t appear overnight. It starts with subtle feelings of heaviness, tightness, tingling or swelling. Too many patients are told to brush these symptoms aside. Don’t. Early intervention can make all the difference.
And finally, insist on access to expertise. Lymphedema specialists and certified therapists can help screen, educate and provide personalized strategies. The right specialist can be a lifeline.
These are lessons learned from experience. They are the things I wish I had known before I joined the millions living with lymphedema today.
This October, when you see the sea of pink, I hope you will remember the women behind those ribbons who may be fighting an invisible battle with lymphedema. Ask the right questions, share the resources and stand with us in demanding greater awareness and action.
Kathy Bates is an Academy Award–winning actress, a two-time cancer survivor and the global spokesperson for the Lymphatic Education & Research Network.
The post Contributor: When surviving cancer isn’t the end of the fight appeared first on Los Angeles Times.
