Survivor’s Guide to Lymphedema

Yesterday I spent the morning filling planter boxes with soil and repotting seedlings to get my summer vegetable garden started. About an hour after I was done, my right armpit, arm and shoulder blade were swollen and aching… hello, lymphedema.

In early 2020, at age 47, I was diagnosed with breast cancer and underwent a bilateral mastectomy with reconstruction. I had a total of fourteen lymph nodes removed, four on my left side and eleven on my right. I was warned by doctors about a condition called lymphedema as a possible side-effect of surgery, but was not given much information about what that meant, or that it could become a lifelong health issue.

Once I was healed from treatment and getting back to my daily activities, I started to notice painful swelling in my arms, hands, upper-back and armpit areas, especially when I did anything slightly physical (like walking, gardening, laundry, even working at my computer!) After a brief discussion with my oncologist, and plenty of internet research, I understood that what I was experiencing was lymphedema.

I was (and am still working back into it!) a very active person. I’ve never been one to go to the gym or “work out,” but I’ve remained healthy and fit due to my lifestyle. I garden, walk, cook, love to dance and DIY stuff around my house. I’m also a musician, and spend plenty of time playing shows, playing guitar, carrying gear and singing for hours, which requires plenty of physical stamina. Initially, I felt like I couldn’t do anything; the smallest chores, even using the computer made my arm swell up. And the pain. And Advil. And having to lay or sit with my arm elevated constantly. And like all of the cancer treatments and side-effects, it made me depressed.

Lymphedema, even mild cases, raises your risk of developing infections and symptoms can worsen, becoming permanent. It's a chronic condition that has no cure.

It was recommended that I treat it immediately so that it wouldn’t worsen. That wasn’t a problem since I was ready to do whatever I needed in order to be active again and relieve the pain. I didn’t get much treatment guidance from my medical team other than Advil and elevation, so I dug deep into finding ways to lessen and improve my lymphedema.

I’m not a doctor. Everyone’s body is different. Listening to my body, consulting doctors, and creating the quality of life that I want has been essential to “surviving.”

This “Survivor’s Guide” is my personal experience with treatments and self-care adjustments that help me physically and mentally cope with lymphedema.

WHAT IS LYMPHEDEMA?

Lymphedema is swelling and discomfort caused by a build-up of lymph fluid in the fatty tissues just under your skin. It often develops after breast cancer treatment, especially if you have a lymphadenectomy (lymph nodes removed) or radiation treatment. For breast cancer patients, it usually affects the arm(s) closest to the surgery, but can also affect the breast, chest and underarm areas or other parts of the body. Sometimes it develops quickly, but it can also develop slowly over several months. (1)

WHAT IS THE LYMPHATIC SYSTEM?

The lymphatic system is part of your body’s immune system. It's a network of lymph nodes, vessels and organs that work together to collect and carry lymph fluid through your body. Lymphedema can occur when the lymph system is damaged, which can prevent the lymph fluid from returning to the blood. 2

Lymph fluid circulates through the body and contains proteins, salts, and water, as well as white blood cells, which help fight infection.
Lymph vessels or ducts have one-way valves that work with body muscles to help move the fluid through the body and control the flow.
Lymph nodes are small, bean-sized glands along the lymph vessels that work to help filter foreign substances, such as tumor cells and infections. Lymph nodes are in many parts of the body, including the neck, armpit, chest, abdomen (belly), and groin.
The tonsils, adenoids, spleen, and thymus are also parts of the lymph system. (2)

LYMPHEDEMA SIGNS AND SYMPTOMS:

Swelling in part of the body (such as your breast, chest, shoulder, or arm)
Skin feeling tight or hard, changing in texture, looking red, or feeling hot
New aching, tingling, numbness, or other discomfort in the area. The area might also feel full or heavy.
Less movement or flexibility in nearby joints (such as your hand, wrist, or shoulder)
Trouble fitting your arm into a jacket or sleeve
Collars, rings, watches, and/or bracelets feeling tight even though you haven’t gained weight (2)

STAGES OF LYMPHEDEMA:

Stage 1: Abnormal flow in the lymphatic system. No signs or symptoms
Stage 2: Accumulation of fluid with swelling. Swelling resolves with elevation. Pressing on the area may leave a dent
Stage 3: Permanent swelling that does not resolve with elevation. Pressing on the area no longer leaves a dent. Changes in the skin with scarring and thickening
Stage 4: Elephantiasis (large deformed limb), skin thickening with “wart-like” growth and extensive scarring (3)

LYMPHEDEMA TREATMENTS & MY EXPERIENCE

A few of my favorite compression/sports bras from Year of Ours, Joy Lab, and All in Motion.

COMPRESSION FOR BREAST CANCER-RELATED LYMPHEDEMA

Compression sleeves, gauntlets, bandages, bras, and tops can help improve lymph circulation and push lymph fluid flow out. Compression garments should fit snugly, but not so tight that they are painful.

My Take: Compression is very effective for me, although not always easy to find garments to fit well. It’s even tougher to find garments that don’t make you look like a patient! I wear compression sleeves and a compression bra whenever I exercise or anytime I’m experiencing swelling. I also wear them when I travel by air (airplane cabin pressure can increase swelling.) There are a lot of products out there…I’ve had success with sleeves from Lymphdivas and Amazon. For compression bras, there are hospital grade compression garments, but I’ve found that medium to firm compression sports bras work great too. If you need that extra support across your shoulder blades, try sleeves that wrap across your upper back, like a shrug with compression…it’s my go-to for long flights.

Extra Note: All compression sleeves are not the same! (4) It took me a bit of trial and error with purchasing sleeves to realize that there is a class system to indicate how much graduated compression the garment has. Not all garments out there use this or are labeled. Ask your doctor how much compression is best for you.

Mild compression provides pressure of 8-15 mmHg and most often used for aching joints and soreness and only occasionally to treat lymphedema.

Medium compression provides pressure of 15-20 mmHg for more severe aches and pains in joints or muscles and is occasionally used for lymphedema.
Firm compression (Class 1) provides pressure of 20-30 mmHg and usually serves as the starting point for increasing the circulation of lymphatic fluids and blood to prevent or treat lymphedema.
Extra-firm (Class 2) provides pressure of 30-40 mmHg for more severe symptoms of lymphedema and to increase circulation and relieve hypertension.
Medical compression (Classes 3 and 4) provides pressure of 40-50 mmHg (class 3) or 50-60 mmHg (class 4) for custom prescriptions. (4)

LYMPHEDEMA AND EXERCISE
Exercise improves circulation and helps lymph flow. It can help you maintain a healthy weight, which can also reduce lymphedema swelling. Intense workouts can make swelling worse. Exercise should be low intensity, pain free, fun, and within guidelines based on your treatment/surgeries. Rebounding, stretching, and walking are all low impact ways to get your body moving and activate your lymph system.

My Take: While I’ve resumed my active lifestyle, I am careful to not do too much exercise in a day. If I do too much, my lymphedema flares up and I spend the evening sleeping in compression sleeves. Pace yourself and figure out how much activity works for you. For me, I mostly garden and walk for exercise, with occasional jump roping if I’m feeling sluggish. If you enjoy the outdoors like I do, wear plenty of sunscreen and clothes: sunburn puts additional stress on your lymph system. If you enjoy gardening like I do, it’s essential to wear gloves and long sleeves to help prevent infection (more about that below).

ELEVATION
Keeping the arm raised above the level of the heart, whenever possible, allows gravity to help drain the accumulated fluid.

My Take: Elevation feels good! I’ve gotten in the habit of resting my arms extended whenever I’m sitting on the couch or anywhere it doesn’t look too awkward. When lymphedema flares, I also sleep with pillows under my arms to elevate them. I sleep better and I wake up with less or no swelling.

MASSAGE THERAPY
Manual lymphatic drainage (MLD) is a specialized type of skin massage that can help push the lymph fluid out of the swollen part of your body.

My Take: I’ve had great success with MLD, but it took some trial and error. Many massage therapists offer lymphatic drainage service, but techniques and skill vary a lot. I had the best results with a specialist (Up Your Body Spa, Del Mar CA) that used gentle massage to direct lymph flow away from my chest and into my groin nodes to lessen the lymph fluid buildup in my arms. She also combined that with massage to help break up my scar tissue and tightness under my arms from reconstruction, also helping to increase my lymph flow. Finding a massage therapist who understands your needs and is sensitive to your condition can really be a game-changer! I trust her expertise and the massage helps me reset. Remember to drink plenty of water before and after the massage to help your body flush out toxins.

DRY BRUSHING
Dry brushing, a self-massage technique that utilizes a natural bristle brush, helps move and eliminate lymph fluid towards the core. Not only does it reduce swelling, but it enhances circulation and detoxification, and exfoliates skin, increasing circulation to the skin's surface. (5)

My Take: I do this about twice a week. Dry Brushing for Lymphatic Drainage I’m not sure how much it helps, but it makes my skin feel great.

DIET & NUTRITION
Try avoiding processed foods (full of sodium, sugar, pesticides, preservatives, and artificial ingredients.) The harder your body has to work, the more strain it puts on your lymph system. Try adding to your diet foods that can boost your lymphatic system, including water, cranberries, leafy greens, citrus, nuts and seeds, garlic, turmeric, ginger, seaweed and adaptogens like mushrooms. (6)

My Take: I love food. Shifting to an anti-inflammatory diet (indulging in an occasional burger or glass of wine is ok!) has helped me feel more energetic without feeling like I gave up on eating all the stuff I enjoy. I consulted a Chinese herbalist (Natural Medicine Institute, Inc., Encinitas CA) as part of my treatment for side-effects of breast cancer, and it has worked well for me. I drink a prescribed tea potion of herbs and have mostly cut out dairy, meat/poultry, and processed sugar. I thought it would be difficult to stick to at first, but I’ve found that dairy alternatives are everywhere and delicious. I’ve become more careful in sourcing organic meats, and use monk fruit sweeteners and honey at home. While turmeric, spices, and ginger do help boost circulation, I limit consumption since they make early menopause hot-flashes (caused by hormone suppressing meds) worse! FightLyphedema.com is a good resource with tips for fighting lymphedema naturally.

PNEUMATIC PUMP
A machine inflates a sleeve that you place on your swollen arm helping lymph fluid flow out.

SURGICAL OPTIONS
In extreme situations, your doctor may suggest surgical options for treating your lymphedema. (7)

My Take: I’m doing everything I can to keep my lymphedema under control so that I don’t have to try these last two options. I included my full list of tips below for your information.

SURVIVOR TIPS

Wear Compression sleeves while traveling by air, exercising or feeling discomfort

Stay away from tight clothing or clothing with elastic cuffs or tight bands
Carry your handbag or heavy packages with the unaffected arm
Limit strenuous activities, keep exercises low-impact
Dry Brush daily
Seek alternative treatments like Acupuncture, herbs, and massage
Avoid processed foods, add lymph-boosting foods to your diet
Check sunscreens, lotions and cosmetics for harmful ingredients
Ask for injections, blood draws and blood pressure tests to be done on the unaffected (or least affected) arm
Avoid extreme hot or cold temperatures on the affected arm, such as hot tubs, saunas, and heating pads or ice packs
Clean cuts and scrapes well with soap and water and use antibacterial ointment
Prevent Infection

Use a clean razor when shaving underarms to prevent cuts
Avoid sunburns and other burns to the affected arm
Wear gloves when gardening and when using strong household cleaners
Keep skin clean and moisturized

Notify your doctor immediately if you have any signs of infection, such as redness, pain, heat, increased swelling, or fever. 3

Do what’s right for you and your body. If you’re experiencing lymphedema or trying to prevent it, talk to your doctor. Try treatments that work with your lifestyle and start integrating them into your wellness routine. Not only will it improve your lymphedema symptoms, it will super-charge your lymph system, improve your energy and overall health!

NENA COTE

CONTRIBUTOR

Diagnosed with breast cancer in 2020, Nena Cote dedicates her time to advocating for breast cancer awareness and prevention as KAB’s creative director. Through her own struggles to get back her “normal life,” (as a professional musician and daily activities: cooking, gardening, being active!) she writes to share her experiences with the process of becoming a cancer survivor.

@nenaanderson

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Opinions expressed by the identified author in this blog post are their own and may not represent the views of the Keep A Breast Foundation or its management. Information found on the KAB website is for educational and informational purposes only and does not constitute medical advice. You are advised to consult a medical professional or healthcare provider if you are seeking medical advice, diagnoses, or treatment.

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