Lymphedema is more common than people know. It is an painful swelling of the extremities. There are number of causes and this is a safe place to ask questions, offer experiences, or just read what others are saying. Each day here at Vascular Medical Equipment (VME) we talk with our patients about how “they” deal with lymphedema. We thought that it would be helpful to offer an open discussion on the subject. We do not give medical advice only technical expertise on the use of our equipment. Always talk with your doctor to before trying any treatment.
3 Responses
A shared story
I am a Stage 1A breast cancer patient. Lumpectomy with the removal of 6 auxiliary lymph nodes occurred in September of 2023. The surgery went well. The underarm incision for the lymph nodes was the most painful post-surgery and took the longest to recover. To this day, the area feels tight. In the weeks immediately following the surgery, I felt pressure/ tightness in my right arm just below the triceps. I also experienced lymph swelling (like a raised vein) descending from my right breast down my torso. Both these issues resolved themselves in a few weeks.
In November, I underwent 4 weeks of radiation (16 + 4 boost treatments). One month later, I went for a SOZO measurement which indicated that I was “at risk” for lymphedema. This news struck me as hard or harder than my initial cancer diagnosis. This condition frightens me. I am an active person and the idea of the chronic swelling and pain that comes with this is not something I imagined. Somehow I feel my physicians underplayed the risk. I recently read that nearly 30% of breast cancer patients develop the condition. Even though at every step, the doctors said that there is a risk of lymphedema, I was sure that it wouldn’t be my case. I am 64 years old, I exercise, eat a healthy diet and maintain a healthy weight.
My doctor set me up for OT immediately and I have been going on a weekly basis since January. Weekly sessions consist primarily of massage. The edema is primarily in the breast area. So far, my arms measure the same. After a weekend trip, the edema in my breast became worse. I’ve also noticed some light swelling in my hand. Ironically, that swelling came days after a second SOZO indicated that my numbers had decreased.
I now swim two to three times a week. I do pilates on the off days and do my OT exercises daily. I have read that early intervention may stop this condition, so I am doing everything I possibly can. This evening, I am going to purchase a compression bra to avoid similar swelling issues next time I travel or spend a lot of time being inactive.
In addition, i have joined a couple of Facebook communities to understand more, as there is little research out there.
*One more added bit of information. Last night, my OT therapist was at the bra fitting event I attended, along with several other medical professionals. She explained that most of her patients have breast edema which is greatly under-reported. She said many women just consider it part of the cancer deal and just “live with it”
bra link – https://www.amoena.com/us-en/pocketed-lingerie/pamela-seamless-post-surgical-bra-black-45011/
Some of the questions that we get asked:
How do you shave your legs – electric razor
What is the recommended diet – most people with lymphedema report the inflammation diet works the best
Why do my legs ooze, leak, drip – the fluid is stuck and it is taking the path of least resistance, the skin. It can’t get out through veins
Why do my legs itch – the lymph system removes toxins and waste. That waste and toxin build-up causes itching
NOTABLE FACTS ABOUT LYMPHEDEMA
March 6th is World Lymphedema Day.
“10 million Americans suffer with lymphedema (LE) in the United States and 250 million
people worldwide have lymphedema (LE), more than HIV, Parkinson’s, multiple
sclerosis, muscular dystrophy, and ALS combined.” Many go unnoticed and
undiagnosed.
(1) It is reported that up to 2 out of 5 Breast Cancer patients will develop Lymphedema within
5 years of treatment. Lymphedema moves slowly and typically is seen between 18- and 24-
months post treatment.
Managing Lymphedema can be expensive with garments lasting about 6 months. Most
insurance now covers garments and pumps, making lymphedema much more affordable.
Most garments are easy to use and can be used independently.
One of the side effects of lymphedema is having a higher risk of infections like skin
infection and cellulitis.
Lymphedema can lead to significant psychological problems such as depression and
anxiety or feeling isolated and unsupported. The emotional effects can be as harmful as
the disease.
It is difficult to predict who will get Lymphedema post treatment.
There are ancient texts, including Hippocrates that document chronic swelling and
treatments.
(2) Most Doctors are taught 1 hour or less on lymphedema3 during the 4 years of school.(3)
Lymphedema can be most commonly found in the legs and arms but, it can also occur in
the face, neck, abdomen, and genitals.
Lymphedema is not exclusive to humans: it can also affect animals, including dogs and
horses. Often veterinarians use similar treatment strategies.
Supermodel Kathy Bates is a prominent advocate for lymphedema awareness. She speaks
on lymphedema following a double mastectomy.
Art is a wonderful medium to express an experience with lymphedema and breast cancer.
Many create pieces that highlight. https://cancertamer.org/art-exhibition
1.Greene AK. Epidemiology and morbidity of lymphedema. In: Springer eBooks. ; 2015:33-44. doi:10.1007/978-3- 319-
14493-1_4
2.Touwaide A, De Santo NG. Edema in the corpus hippocraticum. American Journal of Nephrology. 1999;19(2):155-158.
doi:10.1159/000013442
3.Why-do-doctors-know-so-little-about-Lymphedema. https://www.healthcentral.com/chronic-health.
Just her $0.02