Post # 31 –Lymphedema

Dear Family and Friends

I have told you about my second surgery when they had to take my cancerous breast, well, at that time they had to take out all of my lymph nodes on that side as well. When they did the surgery, they had told me afterwards that there was a possibility that I would develop lymphedema. 

I had my surgery in December of 2015 and I did well until 2017, that’s when I developed lymphedema and I began physical therapy. Part of the initial therapy is to wrap your fingers -each individually, your hand, wrist and entire arm. The therapist rubs different parts of your body, trying to create another avenue for the lymphatic fluids to leave your body.

What Is Cancer-related Lymphedema?

Lymphedema (limf-uh-DEE-muh) is a build-up of lymph fluid in the fatty tissues just under your skin. This build-up causes swelling, most often in the arms or legs. Lymphedema can also affect the face, neck, abdomen (belly), and genitals – depending on the part of the body that was treated.

If you are being or have been treated for cancer, talk to someone on your cancer care team about your risk of lymphedema and what you can do to help lower it. Once chronic lymphedema has started, it cannot be cured. But early and careful management can reduce symptoms and help keep it from getting worse.

 I was seeing my oncologist at the time the lymphedema was noticed by me, so he referred me to our lymphedema specialist at the hospital. I believe I went two or three ties a week for several weeks. My hand throbbed and hurt, so I asked questions at my next doctor visit.  I have learned so much about my body and its different systems since my diagnosis than I ever knew beforehand. It has been very interesting learning along the way😊

 

What is the lymph system?

Our bodies have a network of lymph nodes and lymph vessels that collect and carry watery, clear lymph fluid, much like veins collect blood from distant parts of the body (like the hands and arms) and carry it back to the heart.

Lymph fluid contains proteins, salts, and water, as well as white blood cells, which help fight infection. In the lymph vessels, one-way valves work with body muscles to help move the fluid through the body and control the flow.

Lymph nodes are small collections of tissue along the lymph vessels that work as filters for harmful substances and help fight infection.

The lymph system

What causes cancer-related lymphedema?

Any change in the structure of the lymph system puts a person at risk for lymphedema.

Surgery

During surgery for cancer the doctor may take out lymph nodes near the tumor to see if the cancer has spread. When lymph nodes are removed, lymph vessels that carry fluid from that area to the rest of the body are taken out, too, because they go through and are wrapped around the nodes.

Taking out lymph nodes and vessels makes it harder for the lymph fluid in the arms, legs, or other body parts to flow to the chest where it can get back into the bloodstream. If the remaining lymph vessels cannot remove enough of the fluid in the area, the fluid builds up and causes swelling, or lymphedema.

So, I have learned that there are other ways that a person can develop lymphedema other than having breast cancer and radiation you can find out more information about this here: https://www.mayoclinic.org/diseases-conditions/lymphedema

I have secondary lymphedema as it was a side-effect from the surgery to remove the lymph nodes that were cancerous from my body. From what I understand having to have radiation treatments also adds to developing lymphedema.

Radiation --  Radiation treatment can affect the flow of lymph fluid by scarring and damaging the lymph nodes and vessels. This increases the risk for lymphedema.

Cancer -- Sometimes, a tumor itself can block part of the lymph system and cause lymphedema.

Infection -- Infections that restrict lymph flow can cause lymphedema.

Can lymphedema be prevented?

There is no sure way to prevent all cases of lymphedema, but there are ways to lower the risk of it developing. For example, when lymph nodes need to be removed, some modern surgery techniques might be helpful:

• Sentinel lymph node biopsy (SLNB) is a major advance in cancer surgery. It’s used to find the lymph nodes the tumor drains into so they can be checked for cancer. If cancer is not found in these nodes, it allows the surgeon to remove fewer lymph nodes. SLNB has shown to help reduce the risk of lymphedema.

They had to take all of my lymph nodes when they removed my breast after I healed up they did radiation treatments.

• Axillary reverse mapping (ARM) is a technique that uses a blue dye put in the upper arm to help find the lymph nodes that drain the arm. The surgeon can then try to not alter these lymph nodes. Results are not clear that ARM helps reduce lymphedema.

There might be things you can do to lower your risk as well. Talk to your health care team about your risk of lymphedema. If you are at risk, it’s important to know what to watch for (see below), and to take the steps to help reduce your risk part of your daily routine for the rest of your life.

When does lymphedema develop?

Just after surgery: Temporary lymphedema

Lymphedema can start right after surgery. This is called temporary (or short-term) lymphedema. It’s usually mild and goes away in the next month or so. It can also start later, about 6 to 8 weeks after surgery or radiation.

I didn’t notice my lymphedema early on because of my having neuropathy in my hands- this makes them tingle and have a sort of burning sensation all the time, the lymphedema makes these feelings feel like ten times worse I think.

Even though this type of lymphedema usually goes away on its own over time, you should tell your doctor about it right away. The swollen area may look red and feel hot, which could also be a sign of blood clot, infection, or other problem that needs to be checked.

If there are no other problems causing the swelling, temporary lymphedema might be treated by raising the arm or leg and taking medicines to help reduce inflammation.

Months or years after cancer treatment: Chronic lymphedema

This form of lymphedema develops slowly over time. It may show up many months or even years after cancer treatment. The swelling can range from mild to severe. The lymph fluid that collects in the skin and underlying tissues can be very uncomfortable. It can keep nutrients from reaching the cells, interfere with wound healing, and lead to infections.

Lymphedema can be a long-term problem, but there are ways to manage it. The key is to get help right away. Lymphedema is easier to treat and more likely to respond to treatment if it’s treated early.

Signs of lymphedema

If lymphedema does develop, it’s important to recognize it early so you can start treatment right away.

Common signs and symptoms you should watch for include:

• Swelling
• Part of your body (like your arm, leg, belly, or genitals) feeling full or heavy
• Skin changing texture, feeling tight or hard, or looking red
• New aching, tingling, numbness, or other discomfort in the area
• Less movement or flexibility in nearby joints (like your hand, wrist, or ankle) or your eyelid(s), throat, or lips
• Trouble fitting into clothes in one area, such as a sleeve, pant leg, or shoe being tight
• Collars, rings, watches, and/or bracelets feeling tight even though you haven’t gained weight

At first, the skin usually stays soft, and raising the affected body part might relieve the swelling. But over time, the swollen area may become hot and red and the skin hard and stiff. If untreated, movement and use of the affected part may become limited.

When to get help

Call your doctor, nurse, physical therapist, or lymphedema therapist if you notice any of the signs of lymphedema listed above or any of these changes:

• If any part of the affected area, such as an arm or a leg, feels hot, looks red, or swells suddenly. These could be a sign of infection or a blood clot, and you might need treatment right away.
• If you have a temperature of 100.5°F or higher (taken by mouth) that’s not related to a cold or flu
• If you have any new pain in the affected area with no known cause

Know what’s normal for you

If you’ve had lymph nodes removed or radiation treatment, look closely at your body in front of a mirror. Compare both sides of your body and look for changes in size, shape, or skin color. Get to know your body and what’s normal for you. This way you can spot changes and get treatment right away. Let your doctor or nurse know if you notice any of the signs listed above.

Some doctors measure the affected body part (like a leg or arm) before surgery, then re-measure afterward so that swelling can be detected and treated before it becomes obvious. You can ask your doctor to take these measurements or refer you to a physical therapist to have this done. If possible, ask to be referred to a certified lymphedema therapist (CLT).

The American Cancer Society medical and editorial content team

https://lymphaticnetwork.org/living-with-lymphedema/lymphedema

https://www.cancercenter.com/treatments/lymphedema-management

https://www.breastcancer.org/treatment/lymphedema

https://medlineplus.gov/ency/patientinstructions/000045.htm

https://ww5.komen.org/BreastCancer/Lymphedema.html

Lymphedema and Your Job

Take special care if you’re in a job that puts your arm or hand at risk of cuts or exposure to harsh substances. Examples include chef, gardener, doctor or surgeon, chemist or researcher, and florist. Protect your hands with gloves and minimize your risk of injury.

You’ll also need to take precautions if your job requires heavy use of your arm, hand, and/or upper body — including repetitive or intense lifting, reaching, pushing, or pulling. Some examples include daycare teacher, nurse’s aide, cleaner, mail or package delivery person, assembly line worker, construction worker, and waitress. These are professions where you’re not sitting at a desk or computer, but actively using your limb all day.

I am a preschool teacher, so I am usually pretty busy, though these past few years I have slowed down due to the damage in my knees and then the breast cancer diagnosis and all that has come with it, then the surgeries on my knees --- but I am bouncing back little by little😊 Though I will still need to be careful with my lymphedema side and remember not to carry my heavy bag on that shoulder or in that hand.

It’s critical to work with an experienced lymphedema therapist to strengthen the arm gradually and condition it for work-related tasks. Try not to go right back to heavy arm and upper body use within a few weeks after surgery. Every woman is different, but it can take anywhere from 6 weeks to 2 months to get the arm and upper body back in condition, says Nicole Stout, MPT, CLT-LANA, Senior Rehabilitative Services Practice Leader at Kaiser Permanente, Mid Atlantic Region.

In order to have that time, you may need to:

·         Educate your employer about lymphedema and ask for a temporary change in role. Many people have never heard of lymphedema as a complication of breast cancer treatment. You may need to educate your employer about this, perhaps supported by a note from your doctor or therapist. Ask for temporary adjustments in your role until your therapist says it’s OK to return to your previous tasks. For example, if you’re a mail carrier, you might be able to take a desk job for a while. If you’re a daycare teacher working with babies or toddlers, ask the other teachers if they can handle all of the lifting for now — or try switching to a room with older children who don’t need to be carried.

I have been very blessed to have a wonderful work family – they are all so caring about one another and have been very supportive for me and so helpful whenever I have needed it. I had to go through many sessions of bandage wrappings before my arm and hand got down to the right size before my physical therapist could order my glove and sleeve.

·         Investigate whether a work leave may be possible thanks to short-term disability insurance, if you have it or your employer provides it, or the Family Medical Leave Act. Either may be an option for taking time off so you can focus on conditioning your arm and upper body.

When you return to work, your therapist might recommend wearing a compression sleeve or garment as a precaution. He or she will consider your daily work tasks in addition to other risk factors you have for developing lymphedema. If you do start wearing a sleeve to work, you may find that your colleagues are curious about it. You might want to prepare a set answer you can use to respond to their questions.

After my lymphedema therapy, when my hand and arm was down to a more normal size my therapist fitted me for a glove and sleeve that I wear every day now. I put on my glove and sleeve with the rest of my clothing each morning. 😊 I sure am glad that I do not to have to be wrapped in bandages anymore, they were very cumbersome.

To learn more about employment and treatment issues, visit our section on Breast Cancer and Your Job. This section also will be helpful if you already have lymphedema and need to take time off from work for treatment. At least initially, treatment for lymphedema can be time-consuming, requiring frequent visits to your lymphedema therapist to bring symptoms under control. Talk to your employer and co-workers about your condition and why you need to take time off during the day. You’ll need to ease up on tasks that involve the arm and upper body until you get your symptoms under control. Your therapist can help you figure out what’s safe.

I know that this post is a little long, but I wanted to show you this next section from the following site: https://www.cancerresearchuk.org/what-is-cancer/body-systems-and-cancer/the-lymphatic-system-and-cancer

Because it shows great pictures of the lymphatic system throughout your whole body, especially in regards to the lymphatic system and cancer.

The lymphatic system and cancer 

What the lymphatic system is

The lymphatic system is a system of thin tubes and lymph nodes that run throughout the body. These tubes are called lymph vessels or lymphatic vessels. The lymph system is an important part of our immune system. It plays a role in:

• fighting bacteria and other infections
• destroying old or abnormal cells, such as cancer cells

You can read detailed information about the immune system and cancer.

The lymphatic system

The diagram shows the lymph vessels, lymph nodes and the other organs that make up the lymphatic system.

diagram-of-the-lymphatic-system.jpg

How it works

The lymphatic system is similar to the blood circulation. The lymph vessels branch through all parts of the body like the arteries and veins that carry blood. But the lymphatic system tubes are much finer and carry a colourless liquid called lymph.

The lymph contains a high number of a type of white blood cells called lymphocytes. These cells fight infection and destroy damaged or abnormal cells.

As the blood circulates around the body, fluid leaks out from the blood vessels into the body tissues. This fluid carries food to the cells and bathes the body tissues to form tissue fluid. The fluid then collects waste products, bacteria, and damaged cells. It also collects any cancer cells if these are present. This fluid then drains into the lymph vessels.

diagram-of-a-lymphatic-capillary.jpg

The lymph then flows through the lymph vessels into the lymph glands, which filter out any bacteria and damaged cells.

From the lymph glands, the lymph moves into larger lymphatic vessels that join up. These eventually reach a very large lymph vessel at the base of the neck called the thoracic duct. The thoracic duct then empties the lymph back into the blood circulation.

Lymph nodes (lymph glands)

The lymph glands are small bean shaped structures, also called lymph nodes.

diagram-of-a-lymph-node.jpg

There are lymph nodes in many parts of the body including:

• under your arms, in your armpits
• in each groin (at the top of your legs)
• in your neck
• in your tummy (abdomen), pelvis  and chest

You may be able to feel some of them, such as the lymph nodes in your neck.

The lymph nodes filter the lymph fluid as it passes through them. White blood cells, such as B cells and T cells, attack any bacteria or viruses they find in the lymph.

When cancer cells break away from a tumour, they may become stuck in one or more of the nearest lymph nodes. So doctors check the lymph nodes first when they are working out how far a cancer has grown or spread.

When the lymph nodes are swollen, doctors call it lymphadenopathy. The most common cause is infection but lymph nodes can also become swollen because of cancer.

Other lymphatic system organs

The lymphatic system includes other organs, such as the spleen, thymus, tonsils and adenoids.

The spleen

The spleen is under your ribs, on the left side of your body. It has 2 main different types of tissue, red pulp and white pulp.

The red pulp filters worn out and damaged red blood cells from the blood and recycles them.

The white pulp contains many B lymphocytes and T lymphocytes. These are white blood cells that are very important for fighting infection. As blood passes through the spleen, these blood cells pick up on any sign of infection or illness and begin to fight it.

The thymus

The thymus is a small gland under your breast bone. It helps to produce white blood cells to fight infection. It is usually most active in teenagers and shrinks in adulthood.

diagram-showing-the-position-of-the-thymus.jpg

The tonsils and adenoids

The tonsils are 2 glands in the back of your throat.

The adenoids are glands at the back of your nose, where it meets the back of your throat. The adenoids are also called the nasopharyngeal tonsils.

The tonsils and adenoids help to protect the entrance to the digestive system and the lungs from bacteria and viruses.

diagram-showing-the-adenoids-and-tonsils.jpg

Well, Family and Friends, I do so hope that this has been as helpful for each of you as it has been for me. Like I said before, this journey has taught me so much about my body and how it works. Especially those parts that I was not very familiar with at all. I mean I never would have thought to ask what a lymph node was before I began this latest journey of my life. I would not have been able to tell you where my lymph nodes were located in my body either or what they were used for – and shoot, they are very important vessels in the body😊 everyone have a good week! Keep smiling and remember that your Heavenly Father loves each of you so very much. He is there waiting for you with His outstretched hands – always reaching down, waiting for you to reach up!