Lymphedema - The best kept secret in the World of Cancer
Authored by Carol Enters

It is tough enough to have Breast Cancer, and not easy to go through what is necessary to eradicate the cancer. However, after surviving the battle with cancer to then be left with a life long condition, with little information available, few trained technicians to treat it, expensive to treat with those whom do treat, has no cure and can be life threatening with it’s secondary complications, adds insult to injury!

After I was diagnosed with Lymphedema, I underwent 5 ½ weeks of manual lymph drainage (MLD). The massage technique I underwent was devised by Dr. Vodder and administered by technicians trained in the Vodder system. I was taught self-massage, bandaging and exercises. Although the swelling of my left arm and hand is currently under control, I still must wear a compression garment nightly (a ReidSleeve) to reduce the fluid that returns to my arm during the day. The compression bandages I wear during the day are visible to the public and I am often asked why I wear them. I tell people I have lymphedema and invariably their response is "what’s that?" I have experienced even trained medical personnel respond in the same fashion. Dismayingly, some of the ladies who attend the cancer networking meetings, some with recurrence of cancer, have not heard of this condition, as their doctors failed to inform them of the possible risk they face.

Of all the various magazines with a focus on Breast Cancer, it is rare that lymphedema is mentioned. When listening to medical talk shows on the radio or even the featured television articles on the medical segments of your nightly news, when have you ever seen lymphedema mentioned, let alone explained?

Women who have been diagnosed with breast cancer might expect to be fully informed about the cancer, treatment options, prognosis, and the risk of developing lymphedema. For some women, they are fortunate to have a physician that provides this information, for many women, this is not the case. Many women do not even hear the word lymphedema nor receive any instructions for precautions to lessen their risks of developing lymphedema. Additionally, for the women who do develop lymphedema, they are hard pressed to find information let alone where to find treatment. When treatment is found, only then the costs are discovered. Medicare does not cover most treatment modalities for patients who suffer from lymphedema.

To demonstrate how disturbing the facts and conditions surrounding lymphedema, please allow me to recount my own experience.

In December of 1997 I was diagnosed with breast cancer affecting my left breast. A lumpectomy was not performed until February 1998 due to the fact I had some dental surgery that required completion prior to breast surgery.

My gynecologist referred me to a general surgeon. This surgeon did not specialize in breast surgery, however he did perform the lumpectomy. It was never explained to me the various options I could have chosen, specifically the sentinal node biopsy.

Prior to my surgery I attended the hospital’s Pre-Operation indoctrination and heard the basic instructions. I was informed that my group would be visited by a specialist in that particular surgery. My group consisted of myself (schedule for lumpectomy) a woman scheduled for a mastectomy and the daughter-in-law of a woman who was also scheduled for a mastectomy. The specialist was not available to address our group therefore an oncology nurse was assigned to speak with us. Again, the option of a sentinal node biopsy was never mentioned nor discussed.

The lumpectomy was performed and 18 lymph nodes were removed. All 18 nodes were negative (no sign of cancer).

The surgeon inserted a drain that was left in place for 5 ½ weeks. I later found out that the typical time a drain is left in place is 7-10 days. The surgeon did not inform me that 5 ½ weeks was abnormal. The home health nurse that checked me daily stated it was "more then unusual" to have anything drain that long. My surgeon seemed puzzled, but not concerned. Around the 4th week postoperative, I noticed swelling in my left arm. The surgeon told me not to worry about it. The swelling continued and I expressed my deep concern to my surgeon and was then informed I most likely had lymphedema, of which I indeed have. My surgeon told me to be grateful my cancer was gone and I should just learn to live with the lymphedema. I was never offered any advice or precautions that should be taken when one has lymphedema.

I then underwent 28 weeks of radiation. The radiologist informed me there was treatment available for lymphedema and arranged a 5 ½ treatment course of MLD.

Medicare covered the first round of treatment, however the bandages, special care lotion, washing compounds for the bandages, compression garments, the ReidSleeve and the required subsequent MLD treatments were not covered by Medicare or my supplemental insurance.

Through help from the National Lymphedema Network and my breast cancer support group, I was able to obtain additional information to help keep my lymphedema under control. I did not receive this invaluable information from the traditional medical arena.

I met a woman at the cancer network meeting who had undergone two mastectomies, the first approximately 6 years ago, the second about a year ago. She was never informed about her risks of developing lymphedema, in fact, she had never even heard the word. A few weeks prior to the meeting, both arms began to swell. Her physician told her she probably had lymphedema but offered little to no information nor advice. I spoke with her for about an hour and informed her of how to seek treatment and obtain information for controlling her lymphedema.

I was horrified to find that other women whom had been diagnosed and treated for cancer were never cautioned about the risks of lymphedema nor preventative steps to take to lower their risks. A physician stated to me "only 2 million women suffer from this condition." In actuality, 10-20% of women having surgery for breast cancer develops lymphedema immediately after surgery. That number is about 2 million women. However, if you figure the women who develop lymphedema 5 years, 10 years or even 30 years post operatively, this figure grows to close to 5 million. This figure is based on women whom have been appropriately diagnosed. Some patients that suffer from lymphedema are never properly diagnosed. An added factor to these numbers are the number of men who develop lymphedema follow treatment of prostrate cancer, and those patients who developed lymphedema after trauma to the lymph system, as well as the primary lymphedema patients (when one’s lymph system is compromised genetically).

To live with lymphedema is dangerous, disconcerning, uncomfortable, demeaning and inconvenient, it also is very expensive. You would think if Medicare would cover Viagra, that Medicare would provide coverage for lymphedema treatment. Effective treatment and maintenance of lymphedema significantly reduces the occurrences of lengthy acute hospital stays to treat the life threatening infections associated with lymphedema. Medicare pays for these excessively expensive hospital stays, yet continues to deny coverage for prevention and control of lymphedema outside of a small portion of some MLD. Lymphedema is chronic, life long and not curable. It requires lifelong treatment and control.

Much needs to be done in lymphedema research, awareness and education. Treatment for lymphedema needs to be covered by Medicare, and all insurance carriers. If coverage for treatment is denied, many patients will continue to go untreated. Prevention and control would ultimately save insurance companies money, not to mention lives!

It is time for lymphedema to come out of oblivion and for the conventional medical world to drop their laissez-faire attitude towards lymphedema.

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