November is National Family Caregiver Month.
Lymphedema occurs when a watery fluid called lymph builds up in your body, causing chronic swelling, usually in an arm or leg. Lymph, which supports your overall health and immune system function, flows from your tissues into the lymphatic vessels and then through a collection of nodes (lymph nodes) that filter out bacteria and other unwanted substances.
If one of the lymph nodes is removed or damaged as part of cancer treatment, the remaining nodes have to work harder to filter the lymph. They can then become inflamed or even blocked, causing lymph to build up in the tissue.
There is no cure for lymphedema, but if you are actively involved in your partner’s medical care, it is helpful to know what you can do to help them manage the condition. There are steps you can take to reduce your partner’s swelling, prevent infections, reduce discomfort, and improve their mobility.
“We want to make sure that [caregiver] is also aware of what’s going on so they can either help massage and support the spouse or arrange routes to care,” said Pragnan Kancharla, MD, medical oncologist and hematologist at MedStar Franklin Square Medical Center in Maryland.
It is helpful to speak to a dedicated lymphedema specialist. But not everyone has access to it.
If your partner develops lymphedema, it’s important to understand how you can help.
Lymphedema in prostate cancer
Where lymphedema occurs depends on where the affected lymph nodes are located. In people with prostate cancer, lymphedema can affect the legs, penis, scrotum, or the entire lower body.
Symptoms of lymphedema may include:
- swelling
- Tight, sore skin
- Scaly and thickened skin, called hyperkeratosis
- Small blisters and bumps on the skin
- Fluid (lymph) emerging from the skin.
Is your partner at risk for lymphedema?
A radical prostatectomy, in which the prostate and pelvic lymph nodes are removed, is the most common cause of lymphedema in people with prostate cancer. Radiation also sometimes damages the nodes. Men who undergo both surgery and radiation therapy are at higher risk of lymphedema, and the more lymph nodes affected, the higher the risk.
Lymphedema can also be caused by:
- Infection or other complications at the lymph node surgery site
- A collection of fluid near the wound, called a seroma
- Advanced cancer
Diagnosing and beginning treatment for early-stage lymphedema can slow its progression. Moderate to severe swelling can make it difficult to walk and perform everyday activities.
Caring for someone with lymphedema at home
Simply lifting the affected leg can be very helpful, Kancharla said. And a few simple exercises can also help. Exercises move the lymph and promote good mobility in the joint area – which can be difficult if the swelling is too severe.
A health care provider, physical therapist, or lymphedema specialist can show you and your partner the best exercises. A lot of things can even be done while sitting.
Some exercises that are good for lymphedema are:
- Marching in place or sitting
- Sitting knee extension, lifting the leg and extending the knee
- Toe extensions, including while sitting, lifting the toes as far as possible and then relaxing them
Here are some other tips to help your partner reduce swelling caused by lymphedema:
- Manage weight: Being overweight or obese can worsen lymphedema in the legs. It may also increase your risk of a skin infection called cellulitis. You or your partner could talk to a nutritionist if you need help developing a healthier eating plan or if your partner could use help achieving a healthy weight.
- Reduce salt intake: Salt causes your body to retain fluid, which is something you should avoid if you have lymphedema. If you value flavor when preparing your partner’s food, many dishes taste good when you add fresh herbs instead of salt.
- Drink plenty of water: The goal of lymphedema treatment is to reduce the amount of fluid. Still, it’s important that your partner drinks at least eight 8-ounce glasses of water every day. This helps flush out unwanted fluids.
- Wear loose clothing: Encourage your partner to avoid tight pants and socks (especially on the band). Well-fitting shoes are also important to prevent blisters or sores that could lead to infections.
- Protect skin: Remind your partner to keep their skin clean and dry to prevent infections. When you help him trim his toenails, be careful not to cut his cuticles. Also recommend long pants for gardening, walking, or other activities that could cause scratches on the legs. Use sunscreen (SPF 30 or higher) and insect repellent to prevent insect bites.
- Don’t ignore skin injuries: Treat skin injuries immediately by cleaning, applying an antibiotic ointment, and covering. Keep an eye on the area and look for signs of infection, such as redness or warmth. This will help reduce the risk of infections, cellulitis and a serious complication called sepsis
.
If your partner needs further help
If the first steps at home don’t work, there are other options. Your partner’s HCP may also refer them to other healthcare professionals, such as an occupational therapist or physical therapist.
- Compression stockings: According to Kancharla, sometimes in addition to elevating the leg, patients also need to wear compression stockings or have a massage for relief. Compression stockings are specially adapted to the leg to prevent fluid accumulation in the tissue. A prescription is required and the stockings must be fitted by a professional. Since putting these stockings on can be difficult, ask the provider to show you the best way to do it and any tips or tricks to make it easier. Compression stockings should not be borrowed from someone else as improper stockings could worsen lymphedema.
- Lymphatic drainage massage: Your partner’s HCP may recommend a special type of massage called manual lymphatic drainage. This is not the type of massage most of us are used to. During a lymphatic drainage massage, the lymph fluid is transported from the tissue towards the lymph nodes through gentle pressure. Physiotherapists and specially trained masseurs as well as other medical professionals can carry out these massages. They can also be done at home by you or your partner, but it is important to learn the technique from a qualified person.
- Intermittent pneumatic compression: If lymphedema is more severe, your partner’s doctor may prescribe intermittent pneumatic compression, which is performed using a pump. A compression sleeve is wrapped around the leg and then inflated and deflated, stimulating blood circulation. How long each session lasts depends on the HCP’s recommendations.
Manage costs
Exercising, getting lymphatic massages, and eating healthy are things that most people can do at home, but not everyone can afford lymphatic massages in a clinic or practice, compression stockings, or pumps. However, Medicare covers the cost of compression treatments for lymphedema, as do some private insurance companies. Private insurance can also cover massages. It is important that your partner seeks support if needed.
When you and your partner work together as a team, you can reduce anxiety and stress for both of you. Understanding your partner’s condition and treatment will also allow you to act as their advocate if necessary. “Lymphedema [with prostate cancer] is extremely rare these days, something we don’t see as much anymore,” Kancharla said. “But if someone has lymphedema, particularly related to the tumor or cancer itself or after surgery, we have a lot of resources.”
This educational resource was created with support from Bayer and Merck.
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