Lymphedema and prevention

After my first check up with the surgical oncologist after my mastectomy, he recommended I go and see a physical therapist specialized in the prevention and treatment of Lymphedema.


Prior to the surgery, the doctor had explained they would remove several lymph nodes to check for the possible spreading of the cancer. What we didn’t discuss was the possible side effects of that removal. That only came after.

The role of the lymph nodes is to carry and distribute fluids in the direction of the heart. They are like little vessels and are all over your body. They are all connected in what is called the lymphatic system.

When you remove them, the other lymph nodes need to make up for those removed. In my case, that was twelve in my right arm.

I found the Lymphedema Foundation of South Florida and they have wonderful therapists that can support you.

I went for my first appointment. I really didn’t know what to expect. One of the first things she did was measure my arm from my pinky to my shoulder. Every two inches or so she would measure the circumference. This was to set the base line and every next appointment we would measure again.

She then measured me for a compression sleeve. This sleeve is to be worn at all times. The pressure is to prevent the arm from swelling.

She then worked on my arm, using a specific method to help the body distribute the fluids from my arm to the rest of the body. Helping the body understand new pathways.

After the mastectomy I was having problems with the range of motion in my right arm. During the therapy session I was given specific exercise to increase my range.

One of the very painful side effects from lymph node removal are cords. They are incredibly painful. The muscle and lymph nodes somehow cramp up and create what is called a cord. You can feel them under your skin and only massage and pulling them apart underneath the skin provide relief. It could take a few sessions to remove one. The only way to describe it is like having a muscle cramp that doesn’t go away.

Another issue is the potential of swelling up. I have gotten really lucky so far and I only had one instance of mild swelling. When that happened, the therapist used special bandages and wrap my arm for 24 hours to see if the swelling would go down. After 24 hours she would re-wrap it again until after massaging and lymphatic drainage.

I have to admit that I have not been consistent in wearing the sleeve. I wear it when my arm feels really tired or when I see it is swelling up a little. I do wear it on the plane. This is where you are at a higher risk due to the pressure changes in the cabin.

Warm weather, hot showers and the use of the sauna and steam room are discouraged because of the increased risk.

I am still seeing my therapist on a regular basis. My arm has been doing really well, but I go to have my arm measured and have a preventive drainage massage.

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