My journey with Lymphedema

My journey started with edema and actually I didn’t realize I had any selling outside of what I thought was normal for my surgery.  All things considered my initial swelling was probably within normal limits for a routine lumpectomy and nodal dissection.  I was fairly lucky as I only had four axillary lymph nodes removed during my surgery.  Until my left breast (the side that was affected by the tumor) started to decrease in size I lacked a true understanding of the degree of my swelling.   My lack of understanding came from the fact that my left breast after the lumpectomy was the same size it always had been and fit the same inside my bra. Once the swelling went down I dropped a cup size in the affected (left) breast. It has taken some getting use- to this change but I have grown to accept my asymmetry.  Many women have told me that I now live in the real world, for most women have  a marked asymmetry to their breast naturally. This edema I experienced was normal residual effects of surgery, not lymphedema.

My first experience with lymphedema didn’t happen for about 6 months after I had finished all my treatments.  My treatment journey consisted of chemo to decrease the tumor (which it did), lumpectomy to remove the tumor, another round of chemo (to address any residual cancerous cells in the lymph nodes) and ended with radiation.   Roughly, several months after radiation, I came down with chicken pox. Yes, chicken pox, not shingles, but a revisit of childhood type chicken pox. My primary physician at the time said it was probably due to the fact that chemo and radiation removed the immune history previous present in my body. Consequently it appeared, my body was not recognizing I had already been exposed to this antigen and now had to rebuild its antibody history. It was after this that I first noticed a mild swelling in my left arm. A visit to my oncologist gave me a diagnosis of lymphedema.  I was able to resolve that first bout of lymphedema with dry brushing and essential oils.  The next bout of edema occurred after I attended an advanced massage training course that lasted for five days.  This incident was much worse than the first. I was swollen from my left ear, the left side of my face, down into my left hand. What my doctor and I came up with regarding that occurrence was it was probably too much massage in too short of a time frame, along with, not clearing the lymph in the left arm before and after the deep work. Again I was able to resolve the situation, this time with dry brushing, essential oils and the addition of acupuncture. I was back to normal within 48 hours of this combination of treatments.  More recently I developed lymphedema, either, after a burn from my tea pot or performing massage with poor body mechanics, or a combination of the two. This time I was out of essential oils, I waited over a week to see my acupuncturist and three weeks later I was still dealing with the edema.  I was able to get it under control enough to return to my profession of massage. However, the lymphedema persisted at a low grade level and this time I developed fibrotic tissue.  I am not one to just sit by and let things be as they are; for this is what my oncologist had originally advised would be the case with lymphedema. He said once you get it, you probably won’t get rid of it and you will remain with some degree of swelling.  To see if there was something new out there I could incorporate to get back to a more normal state, I turned to the ever helpful internet.  What I came up with was the idea of heat therapy. Now this is not your standard idea of heat. This is Near Infrared heat via and LED light. My first session I used it in 15 min. increments from my left hand into my armpit, for about 1 hour and 15 minutes. By the next morning more of the swelling was gone, the pain was gone and there was a breakdown of the fibrotic tissue. I began to use the Near Infrared light three times a day for 30 minutes, had three more acupuncture treatments, performed dry brushing once a week jumped on my mini-trampoline and continued with my essential oils. It took a month from start to finish to get my left arm free of lymphedema this time.  I guess I should mention I am over 5 years clear of my cancer.  For perspective, I have had three bouts of lymphedema over a span of 5+ years.

From what my oncologist has said and what I’ve read via the internet, doctors cannot tell who will develop, when they will develop or exactly why they will develop lymphedema. My story is an example of lymphedema  being somewhat unpredictable and attests to the fact that recognizing it early and starting treatment right away can help manage it and possible resolve it (at least for a time).

I am writing this blog to provide insight as to what lymphedema is and to give tips on how to help manage it. If you are one of the few to have to experience it, hopefully through these tips, you won’t have to suffer quit so much.

There are two forms of lymphedema, primary and secondary. In the world of cancer a person is generally diagnosed with secondary lymphedema. This form is defined as; a swelling of a body region (arm, leg, stomach, neck etc.) due to a build- up of lymph fluid in the fatty tissues in the spaces just under the skin. It can occur as a result of cancer, cancer related treatments or disease; basically anything that damages the normal healthy functioning of the lymphatic system.

Let us start by directing our attention to what the lymphatic system is and how it works. The lymphatic system is important in eliminating toxins from the body. It also helps prevent infections and other diseases. Our lymphatic systems are a complex network of lymphatic vessels, tissues and capillaries. Lymphatic capillaries can be found in the connective tissue of nearly all organs and drain into larger connecting vessels which contain valves. These vessels push their contents toward the nearest lymph node and from there into nodal sinuses. Eventually the large vessels drain into the thoracic duct and the right lymphatic duct. Tonsils, lymph nodes, spleen, bone marrow and thymus are examples of lymphatic tissues. Cells associated with this healing network that help identify and remove harmful viruses, bacteria, fungi as well as other harmful substances are, lymphocytes (T-cells and B-cells), leukocytes, macrophages and plasma cells. The spleen is the organ that filters and purifies the blood and lymph fluids. T-lymphocytes come to maturity in response to a hormone in the Thymus and are released from this organ as T-cells.

In general terms, when we speak of improving the immune system we are discussing how well the body, once exposed to a pathogen, can create an attack in the form of a physical barrier and an antibody. What this means is your body basically has to get sick before it can heal itself. The more your body is exposed to antigens (what the systems deems as a foreign substance), the better able and faster able it will be in healing itself. Your body's first defense is the epidermis and its ability to prevent foreign substances and matter from penetrating to the deeper skin layers. The second line of defense is a bit more complex and involves those cells we mentioned above, the Lymphocytes, Leukocytes, and macrophages, which work together to identify, bind to and remove what they deem as invaders.

If the immune system along with the body's ability to bring blood to an area (inflammation= blood flow with heat and redness) works overtime, then we can have an abundance of antibody-antigen complexes, immune cells and inflammatory molecules in an area. This abundance can block blood flow and prevent tissues and organs from being properly nourished and ultimately causes damage and break down. Luckily the body has a complementary system that helps keep this immune system soluble and flowing steadily. The lymphatic system is involved in keeping the balance here.

The circulatory system, the movement of blood, is run by the pumping of the heart. They lymphatic circulation does not have a pump. Lymphatic fluid moves in only one direction, upward to the heart, from the extremities (feet and hands). The valves we spoke of earlier that are housed within the lymph vessels are one way valves to prevent back flow. Body movement, smooth muscle contraction and pressure from breaths create the movement of lymph fluid. The ultimate goal is to get this clear plasma; that has traveled all over the body, between cells, within cells and in the space of tissues, back to the heart. The movement of muscle and pressure of breath must be great enough to bring this fluid out of all the spaces and into the vessels. Basically the body needs to drain it back to the heart via the thoracic duct. There are two separate and unequal drainage routes for this lymph fluid.

The right side route takes fluid from:

• right side of head and neck
• right arm
• upper right quadrant of the body
• to the right lymphatic duct at the clavicle
• which empties into the right subclavian vein

The left side route takes fluid from:

• left side of the head and neck
• left arm
• upper left quadrant of the body
• lower trunk and both legs
• approximately at the middle of the abdomen is the cistrena chyli a midway station
• then to the thoracic duct which empties into the left lymphatic duct
• then into left subclavian vein

The lymph is taken from the veins into the heart to be cycled again in its fresh state.

In the world of cancer the healthy lymphatic system becomes compromised in some form. With some people, their body attempts to rid them of their foreign bodies, i.e. cancerous cells by trying to process them through the lymph nodes. However, if there are too many of these cells and/or if the immune system is not functioning at top performance, then the lymph nodes can’t sufficiently eliminate these harmful cells and they remain. With the nodes clogged the lymphatic system can’t do its job of being a detoxifier. In other individuals the nodes are free of cancer but to find this out the surgeon must first remove at least one node.  Lymph vessels are also removed as they wrap around and travel into the nodes. Thus depending on the number of nodes removed the individual’s already slow moving lymphatic pump is made even more in adequate.

Then we have the complication of radiation, which can destroy or create (create, meaning radiation can also cause cancer by damaging to the point of creating free radicals). The medical field tells us that radiation can put a woman at higher risk for lymphedema. However, we are never really told how our risk is increased by this process that can kill our cancer cells. I think it’s because that would be a very long and complicated discussion to have with our radiologist at a time when we just want to get healthy. Here, I will use my limited knowledge and understanding of this process to try to decrease the complication of this subject. The nature of radiation is to direct high doses of an ionizing energy to the field affected by free radicals (our cancerous cells), and affect the cell at the level of its chemical bonds and change them. The high powered beam of energy, that is directed between our little tattoo marks, enters our body and begins to break chemical bonds and alter the composition and/or structure of the cells in the pin pointed area.  We want this damage to be great enough to kill cancer cells.  This cell death can either be a loss of function (the cell can no longer perform the job it was made to do) or a loss of reproductive ability (the cell can no longer reproduce other cells but can still complete its functions).  It would be ideal if the only death that occurred was to the free radicals. However, we know this is not currently the case. We can see the death of other cells when we notice our energy level decreasing or we see “sunburned” skin. There are also more severe and less common signs such as nerve, bone, and lung damage and swelling from lack of proper lymph flow.

If a woman has a combination of surgical removal of lymph nodes/vessels and radiation then her risk for lymphedema increases due to the fact that she has doubted the damage to her lymphatic system.  Now when this woman is faced with infection; a pathogen, toxin build –up, prolonged static compression, blood vessel damage, or some other trauma to the compromised region or body in general her limited pump free lymphatic system is asked to work overtime.

For most women their body figures a way to pick up the slack so to speak and they never experience lymphedema.  Let’s remember there is a difference between acute swelling from surgery and radiation and lymphedema. Once again, in general, swelling after any surgery is to be expected in some degree.  However, for those who we know are going to go through surgery and radiation for breast cancer we should share our helpful tips so that we can increase the number of women who never have to experience lymphedema. Make sure the person going through surgery or radiation consults with their doctor first and gets a time frame for when the follow tips will be OK to start:

·         Use the affected arm to do your normal daily functional activities, such as brushing your hair and teeth, dressing, bathing and eating. These activities will re-activate the pumping of the lymphatic fluid and guard against tightening of scar tissue and muscles

·         Raise your affected arm above the level of your heart 2 to 3 times a day for at least 45 minutes. You can lie down with your arm support by placing pillows under it so that your hand is higher than your wrist and your elbow is higher than your shoulder. What you are doing is trying to work with the natural flow of the lymph fluid. Remember the lymph flows in one direction toward the heart. By raising the hand above the wrist, elbow above the shoulder you are allowing gravity to draw the fluid toward the heart.

·         Perform functional movement to your affected arm by either *supporting it while raising it above the level of your heart to open and close the hand 15 to 25 times, or * supporting it while shaking the hand for 5 minutes. Repeat  3 to 4 times a day. This will help by pumping the lymph fluid through the undamaged lymph nodes and vessels. Remember the lymphatic system lacks its own pump and needs external help even in a healthy undamaged state.

·         Again if your doctor gives you the OK. Begin to work towards resuming your normal shoulder and arm range of motion by gentle functional exercise about a week after surgery. Your doctor will either give you exercises or refer you to a physical therapist for the right ones for your condition. With these exercises you should regain full range of motion within 4 to 6 weeks.

On the other hand a few women‘s lymphatic systems will not be able to handle the extra load and lymph fluid  will back into the fatty tissue and spaces just below the skin  When this happens these women will experience swelling and even pain which will be diagnosed as lymphedema. Again when this will happen is not predictable. It can occur a week after treatments, months after or even years later. However, the longer lymphedema is left untreated the more and longer lasting damage it can create in the affected body region. Also, it is my understanding, lymphedema lacks a permanent cure. Due to these facts we need to spread the word about what to look for and how to go about getting the situation evaluated by a doctor.

Here are some things to look for when trying to decide if you should consult your doctor:

·         Swelling in the breast, arm, chest, wrist, hand, fingers, face or neck

·         An area feels full or heavy

·         An area feels tight  (you may take this to be a tight muscles)

·         Less movement or flexibility of a joint (shoulder, elbow or wrist)

·         A thickening feeling of the skin

·         The skin may appear to have blisters or warts

·         The skin may have a change in texture

·         The skin may have a color change of some kind

·         Skin may appear to have developed a rash or red bumps

·         The skin or part of the arm or shoulder feels hard

·         Clothing or jewelry isn’t fitting the same and you haven’t gained weight

·         Skin feels itchy or has a burning sensation

·         New ach or discomfort in the breast, arm shoulder or hand

·         Trouble sleeping

·         Loss of hair in the area

You should immediately call your doctor or nurse if you have any of the following symptoms:

·         New pain in the affected area with no known cause

·         A temperature of 100.5 degrees or higher not related to a cold or flu

·         Any part of the affected area that looks red, feels hot and swells suddenly

With any of the signs and symptoms above you want to see a doctor not only to diagnose lymphedema but to rule out other issues.

 What types of test are there to determine lymphedema?

·         Review of your medical history, current habits and a physical exam

·         Lymphoscintigraphy which is an image of the lymph system to located blockages or other issues. A radioactive substance is injected under the skin and taken up by the lymph vessels. The substance is detected by a scanner and analyzed by a computer.

·         MRI a series of detailed digital images of the inside of the body done by magnet, radio waves and analyzed by a computer.

If your doctor does diagnose you with lymphedema they will probably judge how severe it is to determine what course of action you should take to treat the episode. In general this is what they will look for:

·         The area is mildly swollen and feels heavy. When the doctor presses on the area they leave a pit or dent.  This situation they my say will just go away with time or they will try having you raise your arm to drain the fluid or they will send you for lymphatic drainage therapy

·         The area is moderately swollen, feels spongy or hard. Hardness is a sign of fibrosis. When the doctor pressing on the skin it does not leave a pit or dent. With this situation they will probably send you for therapy.

·         The area is severely swollen. If it is advanced enough it can be called lymphostatic elephantiasis. And they will definitely speak to you about treatment options.

There are things to do to help lower your risk of developing lymphedema that you should do or request for the rest of your life:

      ·         Wear a medical alert tag that states you are at risk for lymphedema

·         Always tell any health care provider that you are at risk for lymphedema so that they avoid drawing your blood, placing IVs, giving you injections, and flu shots or vaccines on the affected arm.

·         Have good hygiene and careful skin care to lower the risk and avoid infection

·         If you get an insect bite, torn cuticle, hangnail, cuts or scratches specially from an animal, tend to it immediately by cleaning and disinfecting the area

·         Avoid cutting your cuticles with scissors by keeping your hands moisturized and cuticles soft

·         Wear protective gloves when doing heavy manual work, working in the yard, using chemical cleansers that could open the skin or steel wool

·         Protect against needle or pin pricks my wearing a thimble while sewing

·         Try to avoid using a razor or hair removal cream (go with an electric shaver)

·         Use organic chemical free insect repellent to avoid bug bites

·         Avoid extreme cold which can cause rebound swelling leading to skin chapping and possible infection

All of the above is geared to help lower the risk and/or prevent infection. Why do we need to be so diligent about infection? Remember your first defense against infection is your immune system. This system’s response is to send white blood cells and other immune fluid to fight against any detected pathogen. Often this process creates extra fluid which will trigger the secondary defense which is the lymphatic system. However, in your case your lymphatic system is missing or has damaged lymph nodes and vessel and thus can’t redirect the extra fluid fast enough. Consequently, you can now develop edema.

Make sure you aware of what you are doing in the kitchen and while outdoors. Some of these suggestions are going to be harder to follow than others.

·         Wear oven mitts that cover your lower arms

·         Use SPF 15 or higher sunscreen that is free of chemicals and metals. Take special care to put sunscreen on any area that received radiation. In general once you have under gone radiation your body is more prone to sunburn. Try to avoid full sun exposure during the hours of 10 am and 4 pm when the sun rays are the strongest.

·         Avoid oils splashes from frying, steam from boiling liquids and microwave steam

·         Avoid heating pads to the affected area

·         Avoid high heat of saunas and hot tubs

Again we are trying to avoid increasing a fluid build-up in the affected area. The body’s response to burns is one of protection and an attempt to heal, which is done once again through the immune system which can increase the amount of fluid that they lymphatic system must deal with. And the body’s response to High heat is dilation, which means an increase in fluid flow to the area. And again we are at risk for lymphedema.

Become mindful of stagnate constriction or prolonger pressure to your affected arm. This can be done by:

·         Reminding your health care provider to take your blood pressure on the opposite arm. This is easy if your affected arm is the right one because it is standard of care to take blood pressure on the left arm because it is closer to the heart.

·         If both arms are affected a pressure can be taken from the thigh or ankle

·         Avoid anything that creates a tight/snug, band/grip around your arm, wrist or fingers such as tight clothing, jewelry, gloves

·         Avoid wearing straps from briefcases and/or purses on the affected side

·         Make sure you are sized and fitted for a proper bra. Avoid bra straps that dig or leave impressions in the skin.

·         Directly after mastectomy start with a lighter weight prosthesis

·         Prepare a head of time for air travel due to the increase in cabin pressure. It is a good idea to discuss your travel plans with your doctor and talk about getting fitted for a compression sleeve. You want to be professional fitted because a sleeve that is not made for you and your lymph flow could actually further restrict and back up your lymph fluid which would double the pressure imposed on the body by the cabin pressure.

What we are taking into consideration here is compression or squeezing can increase blood flow into nearby blood vessels. While stagnate constriction (compression that is prolonged and non-moving) can increase pressure in the nearby blood vessels. Both of these can trigger a back-up in fluid and thus lead to lymphedema. Remember the lymph flows in one direction toward the heart. If you place something in its way it will be like putting a barrier in a stream or river.

Become more aware of how you move your body throughout the day and try to avoid over working your muscles. This can be done by:

·         When possible using the unaffected arm or both arms to lift or carry heavy packages, groceries, purses or children. These activities can cause an increase in pressure or a stagnate compression as we discussed above.

·         Avoid exercising to the point of strain or tearing muscles. If the muscles experience a strain or tear the body will trigger an immune response leading to inflammation and depending on the degree of injury can lead to lymphedema.

Some have found weight gain to be connected to an onset of lymphedema. This could be due to the fact most foods that help us put on the extra pounds also are a source of inflammation to the body and a source of toxins. Further extra fat increase the need for more supportive blood vessels. All of this can then lead to an extra burden on the lymphatic system.

To review the most important way to help lower the risk and/or prevent lymphedema is to take care of your whole body (physical, emotional, mental and spiritual) first and for most!

Where can you start on your journey of making your health a priority? Start with what you put into your mouth. Seek books that will enlighten you on what works best for your type of cancer. Here are a few that I know of as helpful:

·         Anticancer: A New Way of Life by  David Servan-Schreiber MD, PhD

·         Wheat Belly: Lose the Wheat, Lose the Weight, and Find Your Path Back to Health by William R. Davis and William Davis

·         The Anti-inflammation Diet and Recipe Book by Jessica Black

Basically, it is all about increasing your vital life force. This can be done not only through nutrition but also through complimentary health care, such as acupuncture, naturopathic medicine, yoga, Chiropractic care, physical therapy, massage and mediation. If you live in Portland, Oregon a great way to have someone introduce you to a means to network with all of these care options is to contact a fellow survivor Tonya Priestly through her non-profit organization Sisters4survivors (www.sisters4survivors.org).

Here are some other things I have tried personally:

·         Essential oils to support the circulatory systems 

·        Dry brushing; I refer you to my blog about dry brushing for its benefits

·         Manual lymph pump, this must be done by another person to you

·         Manual lymph drainage, you can be taught how to do this for yourself or go to a trained therapist

·         Mini-trampoline, this helps to increase the flow of lymph

·         Near infrared Led Light, I received my through a company named Gaiam

Here are a couple of things I haven’t tried but know are out there for treating lymphedema:

·         Lymphedema pump machines for home use

·         Compression sleeves

·         Lymphedema surgery (this is still not perfected and has mixed results, as far as I have read to date)

I truly hope that my experience and what I have learned from it can be helpful to you or someone you know. May your light grow, may your passion increase and may your life force be inspiring to those around you.