Lymphedema,
All Puffed Up and No Where to Go!

Mom has been plagued by lymphedema in her legs from early on in her pancreatic cancer journey. Doctors can’t pinpoint the exact cause, but we can tell you that it is just one more nuisance in the ongoing list of cancer side effects.

But before I go any further, let me explain that lymphedema is just a big word for swelling. For mom, that swelling began in her ankles within months of her cancer diagnosis. It has extended at times up past her knees. The swelling is not a constant state of affairs, it has come and gone without warning, and has become the mystery side effect.

Her doctors have been unable to say for sure what is causing the lymphedema. They ponder her elephant legs and say it may be a side effect from the Gemzar chemotherapy , or it may be a reaction from the tumor, blocking lymph flow. Either way, her legs can balloon up in minutes.

To help understand the swelling, we researched lymphedema in general. And I got another biology lesson! Here’s what we found out.

Our body has a lymphatic system. It somewhat mirrors the cardiovascular system in that it circulates lymph (plasma) through the body. I think the heart and blood system would be way more easy to explain, but here goes.

Lymph (the product of the lymphatic system) begins in the blood as plasma (the fluid part of the blood).

As the blood flows thru the blood vessels the plasma leaves the capillaries (blood vessels) and moves into the tissues to help bring oxygen and nutrients to our cells.

It then picks up waste and any other harmful substances (bacterias and viruses) from the cells and moves back into the blood vessel.

But not all of the plasma gets back into the blood vessels. The plasma left behind (about 10%) becomes lymph.

As the plasma/lymph travels through-out our tissues it passes through lymph nodes which filters the waste out before dumping it back into the blood vessels.

And here’s an interesting fact, we have somewhere between 600-700 lymph nodes in our bodies. This filtering process is why we often hear that cancer has metastasized to the lymph nodes. The nodes are just doing their job, trying to capture waste products and remove them from the system. Now it makes sense to me that cancer cells can move from the pancreas to other parts of the body. They are doing it through the lymphatic system. Criminally smart those evil cancer cells, hi-jacking the body’s own immune response system.

One more important thing to know about the lymphatic system, it does not have a pump to help circulate the lymph fluid. We all know that in the circulatory system the heart does the work of pumping the blood around our body. The lymph isn’t so lucky. It has to just drain back into the lymphatic system. No pumps, no magic, just drainage pure and simple.

With that thought in mind, imagine something interferring with the lymph drainage and stopping the flow of lymph.

Basically, any damage to the lymph system disturbs the flow. When lymph tissue or lymph nodes are damaged, destroyed or removed, than it’s obvious that the lymph may not be able to drain normally from the leg. And if the drainage system “backs up,” so to speak, then the excess lymph stays in the tissue and things are going to start swelling.

There are a couple of ways that the lymph system can be damaged on the cancer journey:

• Surgery - Lymphedema can develop if your lymph nodes and lymph vessels are removed or cut during the whipple surgery . If your remaining lymph nodes and lymph vessels can't compensate for those that have been removed, swelling will result.

• Radiation treatment for cancer - Radiation on the pancreatic tumor can cause scarring and inflammation of your lymph nodes or lymph vessels, restricting flow of lymph fluid, again causing swelling.

• Infection - An infection of the lymph nodes can also restrict the flow of lymph fluid and cause lymphedema.

• Cancer – the pancreatic tumor may be growing near a lymph vessel and could actually become large enough to block the flow of lymph fluid, resulting in swelling of the leg.

So with the basic biology of the lymph system under our belt, let’s move on with symptoms and treatment.

Lymphedema symptoms for the pancreatic cancer patient are pretty obvious: Swelling, duh… I knew you knew that.

Along with the swelling comes:

*tightness of the legs and/or joints
*uncomfortable full feeling in the leg
*decreased flexibility in the ankle and/or knee, and
*skin discoloration, sometimes.

Mom experienced all that, plus some pitting of the skin. This is where the tissue is so engorged with fluid that you can press your thumb into the skin and it won’t pop back up, but stays depressed and “pitted.” That’s getting pretty serious.

Mom’s doctors ran the gamut trying to figure out what was causing her leg swelling. At first they thought it might be cellulitis, an infection just under the skin in the swollen tissue and prescribed antibiotics. Swelling remained unchanged. Next they did a Doppler sonogram on her leg looking for a possible blood clot, which might also cause swelling and discomfort. Negative on the blood clot.

This left them with a rather ambiguous idea that the swelling was due to either the radiation scarring or possibly the tumor pressing on portions of the lymph vessels or maybe even a side effect of the Gemzar chemo treatment. In other words, they had no earthly idea why her leg was swelling, but they assured us they would concentrate on managing the lymphedema and making her comfortable. I guess this is just one more unpredictable bump on the pancreatic cancer road…

Lymphedema treatments are fairly basic as you will see:

*the easiest is to elevate the leg, and spend less time on your feet. This worked for mom in the early weeks of her cancer journey, but as the swelling progressed she moved on to other techniques.

*compression stockings – not the prettiest, nor the easiest to get on, but they help compress the fluid back up through the lymph system and prevent more from accumulating in her legs. Worked fairly well.

*Diuretics – these are medications that help the body remove excess fluid. Mom’s doctor really wanted to use these meds only as a last resort. So far, we haven’t needed them.

*the final treatment technique is a lymphedema massage technique called CDT or Complex Decongestive Therapy. It is a manual massage that gently moves the fluid back through the lymph system. It is somewhat controversial though, as some doctors feel that it may promote the spreading of cancer cells throughout the lymph system.

Whatever treatment you and your healthcare provider decide upon, it is so very important to address the issue of any leg swelling during your cancer treatment. When lymphedema goes untreated, the lymph will continue to collect in the tissue, leading to increased swelling and an eventual hardening of the tissue. At that point, the tissue becomes very susceptible to infection. It also may lead to a decrease or even loss of the use of your leg, sometimes permanently.

Our warning to all pancreatic cancer patients, Do Not leave Lymphedema untreated! Stop unsightly drainage back-up and let the good lymph flow! 

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