This particular subject is one of my pet peeves. It has annoyed me enough that I wrote a free report entitled – ‘Lymphedema – A Risk Forever: What you NEED TO KNOW before it’s too late’.
As a former breast cancer patient, I went along for a number of years thinking that this issue and risk was behind me. I was through treatment, well on my way to a healed and healthy life. You can imagine how upset I was when I learned through a workshop that this was not the case. I would always be at risk for lymphedema, no matter how long ago I had my surgery and treatment.
In the fall of 1990, I was diagnosed with Stage 3 Breast Cancer. Ten years later my epiphany happened. And in the years since then, not much has changed. The risk is still not well known. It may be mentioned during hospital information sessions but not emphasized leading to patients ignoring the information. Doctors may not have the time to deal with it or the time to understand it. When help is sought because something does not feel right, the condition is often diagnosed as cellulitis – an infection – not lymphedema. It’s sad, because if caught early enough, the severity of the condition can be lessened considerably.
Why am I so passionate about sharing this information? For starters, this is a condition I do not ever wish to have myself. It involves regular maintenance, the wearing of compression garments, unsightly swelling, heaviness, and is downright an inconvenience and would be a constant reminder to both myself and others of my cancer experience.
Here is some quick information for you to digest.
What is Lymphedema?
The following is the definition of lymphedema from the National Lymphedema Network (www.lymphnet.org), an organization with clear and helpful information about lymphedema:
Lymphedema is an accumulation of lymphatic fluid in the interstitial tissue that causes swelling, most often in the arm(s) and/or leg(s), and occasionally in other parts of the body. Lymphedema can develop when lymphatic vessels are missing or impaired (primary), or when lymph vessels are damaged or lymph nodes removed (secondary).
When the impairment becomes so great that the lymphatic fluid exceeds the lymphatic transport capacity, an abnormal amount of protein-rich fluid collects in the tissues of the affected area. Left untreated, this stagnant, protein-rich fluid not only causes tissue channels to increase in size and number, but also reduces oxygen availability in the transport system, interferes with wound healing, and provides a culture medium for bacteria that can result in Lymphangitis (infection).
Lymphedema should not be confused with edema resulting from venous insufficiency, which is not lymph-edema. However, untreated venous insufficiency can progress into a combined venous/lymphatic disorder which is treated in the same way as lymphedema.
What are the warning signs?
There are early warning signs that, along with measuring the limb, you may want to know:
- tingling in the affected limb,
- a feeling of fullness, the skin feeling too tight
- a sleeve or pant leg that is suddenly tighter
- a finger that suddenly swells
- pitting – where an area pressed by your finger stays indented filling up slowly
- less flexibility – bending is more difficult
- any change to your skin
Most important, how can you reduce the risk?
Here are some tips. For a full description, read the free report.
- Skin Care – avoid trauma and injury to reduce the risk of infection
- Cleanliness and proper moisturizing
- Proper care when getting a manicure or pedicure (i.e. sterilized equipment, do not cut cuticles etc.)
- Treat scratches and cuts immediately
- DO NOT let anyone take your blood or blood pressure on the limb at risk.
- Protect from insect bites and sunburn
- Activity and Lifestyle
- When exercising, start slow, use slow movements, and be aware of how the limb feels.
- Watch how your limb looks – redness, swelling – head to a doctor or the hospital – could be the start of an infection
- Lifting – be careful lifting heavy objects. This can be groceries, boxes, weights, children, suitcases, etc. Try to remember 15 pounds as a limit, but also be aware of how your limb feels.
- Being at an ideal weight also is a factor.
- Avoid limb constriction
- Purses – carry then across the other shoulder.
- Garments and jewelry – loose is better
- Again, no blood pressure on the limb at risk
- Compression Garments
- For air travel, wear a prevention garment.
- Get up and move often
- Wear a compression garment when lifting weights or other strenuous activity
- Extremes of Temperature
- Avoid hot tubs and saunas if possible. If you do use them, limit yourself to no longer than 15 minutes or when the limb feels different whichever comes first.
- Avoid extreme cold – especially applicable if you are an outdoors person.
Who does it affect?
As mentioned, this is not a risk only for breast cancer patients, this is risk for:
- men going through prostate surgery
- those having lower abdominal surgery (ovarian, uterine, colon)
- these cancers affect both men and women
- head and neck cancers (brain, thyroid, throat, etc.)
Some conditions are more severe than others, for sure. No matter the severity, lymphedema is a condition you will want to avoid.
There is hope on the horizon. New research is currently underway at the University of Calgary funded by a generous donation from the Dianne and Irving Kipness Foundation initiated by Dianne Kipness’ personal experience with Lymphedema as a result of her cancer treatment. This weekend at the National Lymphedema Conference in Calgary, I heard of cutting edge surgery being done by Dr. Jay W. Granzow whose carefully selected patients are experiencing wonderful results. It is to be noted that this surgery will not eliminate the need to wear a compression garment even though the limb is reduced in size. It does allow short periods of time in some cases for patients to be garment free, but the big benefit Dr. Granzow indicated is the lessened risk of infection, a serious condition for those with Lymphedema.
There is cautious hope on the horizon for those with Lymphedema. Still, the best scenario is to not get Lymphedema in the first place.
Don`t be complacent and think it can’t happen to you. So many times, I’ve heard a sad story about someone who for years has been okay, and then in a moment of forgetfulness, discovers that they have lymphedema.
Simple things I do to reduce my risk.
The following are some simple and mindful things I do:
- Holding my dog’s leash in the unaffected hand in case she decides to pull or bolt suddenly. Prime example is when she sees a rabbit.
- Carrying the heaviest grocery bags in my unaffected arm.
- Using my whole body to lift heavy object – i.e. heavy dog food bags
- Lightening the load in my purse and using the shoulder strap on the ‘other’ side – or using a fanny pack – or carrying essential items in my pockets and going hands-free.
- Exercise regularly but mindful of when I may have overdone it – then take the preventive steps.
- Disinfecting scratches, insect bites, etc. quickly to prevent infection. Had a scare last summer – a wasp sting on my finger on the affected arm. Couldn’t disinfect it immediately as I was halfway around my one hour walk. I was fortunate – I got it under control, but barely.
- If you have pets, disinfecting scratches and nips quickly is imperative. With the addition of a rambunctious kitten, I found myself once again having to be extra mindful.
- Using a luggage carrier for walking in the airport terminal after I drop off my main luggage. I finally upgraded to a small carryon bag with wheels. Now I use the luggage carrier for transporting workshop materials into a building. Saves my arm.
- Have my grandchildren climb into my lap when possible rather than lifting them. If I do lift them, I use my whole body and take the weight mainly in my unaffected limb.
At the conference, I witnessed many individuals with Lymphedema, both arm and leg. For some, they manage their condition and live well. Others are struggling.
As always – be informed. Take precautions. Be smart.