You get the diagnosis of cancer.
You get treatment. Surgery. Chemo. Radiation.
Then you wait to find out if it worked.
You try to go back to life as normal.
But life is far from what it was before.
“Ninety-five percent of cancer survivors have at least one residual effect of that treatment, but only 5 percent get treated for it,” said Tracy Bender, occupational therapist specializing in cancer rehabilitation and lymphedema at Southeast Nebraska Cancer Center. “Eighty percent of cancer patients develop some form of post traumatic stress. And, if it is not addressed it can cause fears and complications with cancer.
“Rehabilitation is not the standard of care with cancer.”
But it should be, Bender said.
This past April, Bender, along with Cortney Driewer, began offering specialized cancer rehabilitation services for patients through the cancer center. Next week, they will be joined by a third assistant and lymphedema specialist, Michaela Bidrowsky, to work with a growing number of cancer patients taking proactive steps to stop the residual side effects before they take hold.
After cancer and treatment, patients experience a variety of lingering effects -- weakness, numbness and pain from nerve damage, swelling (lymphedema), physical constraints and psychosocial/emotional changes, Bender said.
Many cancer survivors believe they “just have to live with” the effects.
But Bender says rehab programs -- particularly those begun before surgery and treatment -- actually helps patients prepare and recognize early signs of residual effects, resulting in shorter rehab and improved success.
That is especially true with lymphedema, a chronic and frequently debilitating swelling of the limbs and other body parts resulting from changes in the lymphatic system.
Lymphedema is an abnormal collection of high-protein fluid just beneath the skin. Normally, the body’s lymph system moves this fluid out of the body. But when lymph vessels are damaged or lymph nodes are removed, as with cancer treatment, the fluid collects and continues to build in an affected area, triggering inflammation, and scar tissue (fibrosis), which makes it even more difficult to eliminate the excess fluid, according to the National Lymphedema Network.
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The fluid build-up is more than unsightly and uncomfortable, it actually delays healing of wounds and creates a prime environment for infections.
“Being educated about lymphedema is important because patients who go through cancer treatment are at greater risk of its development,” Bender said. “Since lymphedema is easier to treat in its early stages, a patient’s knowledge of what to look for -- in terms of the onset of the condition -- is vital in order for patients to receive the most effective care.
“There are also ways to prevent the onset of lymphedema in many cases, so this education is crucial,” she added. "Cancer survivors need to know that they do not ‘just have to live with’ lymphedema.”
Recently, the Southeast Cancer Center’s occupational therapy department purchased a device called the L-Dex. The machine measures the circumference of arms and legs and can detect minute signs of lymphatic swelling. Whereas fluid build up is visible to the naked eye at 200 milliliters (roughly 6.8 ounces of fluid), the L-Dex can find it at 35 mL (1.2 ounces), Bender said. That’s early enough to prevent lymphedema from developing, Bender said.
Breast cancer is the number one cause of lymphedema in the United States, Bender said. While most lymphedema is in arms and legs, it also can occur in the breast, trunk, head, neck and genitalia, according to the National Lymphedema Network.
Bender, Driewer and Bidrowsky are certified master fitters of post mastectomy bras. And in April will begin offering custom prosthesis for mastectomy patients. The right bra, with the right type of compression in the right spot, helps keep the lymph system operating.
“A lot of times recurrence of cancer occurs in scar lines, so we want to catch it early,” Bender said. “We want to ... prevent things from happening. If patients know what to look for they can get treatment right away and not allow it to persist.”
They also work with patients whose cancer treatment has resulted in sexual dysfunction.
“A lot of people don’t discuss this with their physicians,” Bender said. “It’s considered taboo. But it shouldn’t be. It has to be addressed.”
It’s a quality of life issue. A social and emotional issue.
All are crucial for a good recovery. Restorative yoga helps patients deal with the stress and fears of life after a cancer diagnosis.
Educational programs addressing nutrition, exercise, pain management and anxiety, help patients become more involved in their care.
“We teach them how to keep in tune with their bodies, and know how to self monitor,” Bender said.