top of page

Understanding Lymphedema


It can be overwhelming attending doctor appointments week after week with a plethora of information thrown at you each time, new vocabulary, new side effects to worry about, and additional risks all come flying at you at warp speed.

I always came prepared to my appointments with a note pad and pen taking copious notes, and asked for correct spellings of technical terms, knowing I would come home and google absolutely everything! Often times, our discussions in the oncology office revolved around discussing the various approaches to treating my cancer along with weighing the benefits and risks.

About one year ago, as we were discussing my surgery options, my nurse came in and handed me this pamphlet and said we should talk about Lymphedema. My head was already spinning as I was nervous about my upcoming surgery and like a deer in headlights, I now had to worry about this potential risk?


While having lymph nodes removed does not always result in developing lymphedema, it quickly became clear that this was something I would need to look out for and manage for the rest of my life; it is something that can develop immediately after surgery, or even months or even years down the road.

My only real experience with lymph nodes were usually associated when my primary care physician was checking if I had any swollen glands around my neck and to ensure I didn’t have strep throat. I was pretty clueless about the lymphatic system, how it worked, and the benefits it has on the body.

What is the Lymphatic System?

The basics:

Our bodies have a network of lymph nodes and lymph vessels. This system collects and carries a watery, clear lymph fluid, much like how veins collect blood from distant parts of the body and carry it back to the heart. This fluid consists of proteins, salts, and water, as well as white blood cells, which help fight infection.


Lymphedema Definition:

Lymphedema is a chronic condition in which excess fluid collects and causes swelling, generally in the arms or legs.


What Causes Lymphedema:

Lymphedema is most commonly caused by the removal of, or damage to, your lymph nodes as a part of cancer treatments. It results from a blockage in your lymphatic system, which is part of your immune system. The blockage prevents lymph fluid from draining well, and the fluid buildup leads to swelling.

According to the National Cancer Institute, anywhere from 5-17% of women who have sentinel lymph node biopsy develop lymphedema. Among women who have axillary lymph node dissection, the percentage is higher — from 20-53% — and the risk increases with the number of nodes taken out. Not surprisingly the risk is even higher if you receive radiation to the breast, chest, and under the arm area.

My Story with Lymphedema:

As things are shaping up, I shouldn’t be surprised that I was a prime candidate for developing lymphedema. I had an auxiliary lymph node dissection resulting in 16 lymph nodes being removed, as well as 30 rounds of radiation!

Prior to my surgery, my oncological team took baseline measurements using the L-Dex machine. If you are having any lymph nodes removed, I highly recommend to ask your care team about getting baseline measurements taken. This will allow you and your team to catch any changes post-surgery and catch lymphedema early if it is developing (sometimes swelling isn’t obvious to the naked eye). The procedure is painless and only takes a few minutes. It’s worth it!

Lymphedema Signs and Symptoms

After surgery, things seemed to be going well and I thought I was in the clear until one day I started to notice the following symptoms:

· Heaviness in my arm

· Tingling in my fingers (that sense when your arm falls asleep)

· Discomfort raising my arm above 90 degrees

· and I started to notice my watch and rings were no longer fitting comfortably.

I looked down, and my hand definitely looked swollen, I was developing stage 1 of lymphedema. Below is a picture of my emerging lymphedema


There are additional symptoms that I didn't experience but that patients should be aware of. These include:


· Burning or itching sensation

·Skin redness

·Difficulty seeing veins or tendons in hands and feet

· Restricted range of motion

·Recurring infections


Lymphedema Diagnosis and Treatment

While lymphedema is not curable, it is manageable (phew). I took matters into my own hands and called my hospital to schedule an appointment with a lymphedema specialist. I’ve been seeing my specialist now for 4 weeks and the improvements are profound! It was recommended that I wear a compression sleeve daily, even during my workouts to help reduce swelling.


Additionally, I do lymphatic massage (also known as manual lymph drainage (MLD)) twice a day. The lymphatic massage plays a crucial role of rerouting stagnated lymphatic fluid. The goal is to stimulate the lymph vessels and lymph nodes and to redirect the lymph flow around these blocked areas into more centrally located healthy lymph vessels and nodes.


At night, I do not wear my compression sleeve, but rather, I wrap my hand to prevent swelling.

While my bedtime routine is now about an additional 30 minutes to account for managing lymphedema, I have to say, my arm feels so much better and I am confident that I will remain at stage 1 so long as I continue to take care of my skin, arm, and manage the swelling!

For more information on treatment for lymphedema, please click here


54 views0 comments

Recent Posts

See All

Meditation Mondays:

Chakra Chanting with Gloria

Mondays at 10:00 a.m. ET 

RSVP

Thursday Night Thrivers:

All Stages

Thursdays at 7:00 p.m. ET

RSVP

 

Thursday Night Thrivers:

Metastatic Breast Cancer

First and third Thursdays

of the month at 7:00 p.m. ET

RSVP

 

Thursday Night Thrivers:

Inflammatory Breast Cancer

Second Thursday

of the month at 7:00 p.m. ET

RSVP

Tuesday Night Thrivers

Después de un Diagnóstico:

Spanish support group

2do y Cuarto Martes de cada mes 

7:00 p.m. ET

RSVP

Restorative Yoga:

Journey to the Stars

September  25 1:00 p.m. ET

RSVP

Qi Gong 

September 26, 11:30 a.m. ET

RSVP

Breast Cancer Book Club

October 1, 11:00 a.m. ET

RSVP

Art Therapy

October 2 6:00 p.m. ET

RSVP

Yoga Stretching for DIEP flap

October 3 6:00 p.m. ET

RSVP

Yoga with

Chair assist 

October 10, 11:30 a.m. ET

RSVP

Writing Workshop:

Reflect and Recharge

October 16, 6:00 p.m. ET

RSVP

Más eventos en español

RSVP

Upcoming Events

1

Surviving Breast Cancer provides breast cancer support, events, and webinars at no cost to you! Whether you are looking to gain more knowledge on a particular topic or meet up with other breast cancer survivors, we have something for everyone. 

2

Our standing appointment on Thursdays is for all stages. We also host specific breakout groups once a month for specific stages and subtypes such as Metastatic breast cancer, and Inflammatory Breast Cancer, etc. 

3

The Book Club meets the first Sunday of every month at 11 am ET. You are welcome to join each month or pick and choose your month based on your availability and the book we are reading. 

4

Through art, writing, and other creative modalities, we hold the power to manage our stress, make sense of our now, and relax into moments of stillness. 

5

Free, monthly, online classes in restorative yoga, yoga for breast cancer, and Zumba. 

6

Después de un Diagnóstico

bottom of page