Jan 1997: LE & Pain, Primary vs. secondary LE

LymphLink Question Corner - Archived from January 1997
Saskia R.J. Thiadens, R.N.

Q:  I wonder why, when you write about lower extremity lymphedema, you always write about secondary lower extremity lymphedema. There rarely is any discussion of primary lymphedema. What about dealing long-term with primary LE lymphedema as a lifestyle?

A:  First, my apologies: we do try to address both primary and secondary in the Newsletter (see p. 5) and answer all questions and concerns. Realistically, the treatment of lymphedema in primary and secondary cases is the same, except that in secondary we often are concerned about the possible recurrence of the primary condition (in most cases, cancer), and it is important to see a physician for periodic follow up visits; any kind of pain, discomfort or skin changes need to be checked as soon as possible.

However, there are differences, the main one being that primary lymphedema patients in some cases have been living with the condition since birth or adolescence. This definitely affects the psychological aspect, as well as, in some cases, the degree of severity of the lymphedema (especially if it has been left untreated or undertreated for many years). We hope to get more feedback from clinicians across the country who care for primary lymphedema patients, and from the patients themselves, regarding specific approaches that work and other issues that affect primary patients.

Of course, our hope is that living with lymphedema does not have to become a lifestyle in and of itself, although definite lifestyle changes can occur. But there is a great deal that can be done to keep the lymphedemic limb or area under control, and a patient's quality of life as active and close to normal as possible.

Q:  I have had my lymphedema in my right arm for five years, and recently it started to hurt badly. My doctor is no help, and I haven't seen this mentioned in your newsletter.

A:  Thank you for this important question. There are an increased number of patients who contact us regarding pain. Some have become quite upset since we advise them that usually lymphedema does not hurt, except, of course, the discomfort of psychological pain. But any time there is pain it is important to rule out recurrent disease, infections, nerve related pain (brachial plexus) or other. Pain can aggravate and worsen the swelling, and it is important to discontinue therapy until one knows what is causing these symptoms. Some patients have continuous pain and we do not know why. Once complications have been ruled out, starting Manual Lymphatic Drainage and bandaging to keep the limb as small as possible is recommended; decongesting the limb brings many benefits all around.

Q:  In 1987 I had a lumpectomy and axillary lymph-node dissection of my right breast, opting not to undergo radiation. I did well until 1993 when I was diagnosed with cancer of my windpipe. Not until I developed visible nodules in my neck during this summer did I undergo chemo and radiation therapy. Fortunately, these disappeared after treatment, but I developed moderate to severe lymphedema in my right arm.

Two months later, a malignant tumor was noted in my left breast and this was removed. Still no lymph nodes were taken out. Then my doctor decided to insert a portacatheder in my left arm (3 cm below my inner elbow). This resulted in immediate swelling in my left arm which quickly worsened. I did not have nodes removed. Please explain to me why I now have lymph-edema, and what I should do, since I have chemotherapy every two weeks. As a classical ballet dancer, it is imperative to my health and well-being that I am able to continue doing what I love. What do you recommend?

A:  Since you had maximum radiation to the neck and left clavicular, this likely caused lymphatic congestion and scarring and, subsequently, lymphedema. I also recommend you ask your doctor to remove the portacatheter from its present position in your left arm and possibly place this in the abdominal wall. This might be the only placement option left that will not affect your lymphedema and see a lymphedema specialist as soon as possible to discuss treatment options.


Attention Clinicians:  The following challenging questions are in need of answers. What is your opinion? Please send, fax or e-mail your input to: NLN, 2211 Post St. #404, San Francisco, CA 94115-3427. Fax: 415-921-4284. E-mail: nln [at] lymphnet [dot] org.

Q1:  Thirty-four years ago (age four), I had a Wilm's tumor followed by secondary lung cancer. The tumor was removed. At the age of 38 (last year), I had a modified radical mastectomy and was treated with chemo and radiation to the right chest area. I recently have developed lymphedema of my right arm. I'm finding that the correct pressure garment for my arm (and I have tried plenty) is causing me severe pain in my right chest, sort of like screaming nerves. What might be causing this and what should I do? I am very positive about getting on with my life, but find that pain as a constant companion is rather debilitating.

Q2:  I had a lumpectomy and right axillary node dissection one year ago. I have had mild right arm lymphedema since then, no real problem unless I overuse the arm. After resting and elevating it, it's okay, though there is some slight constant swelling. Recently I have had pain down my right side and feel what feels like cords of swelling under the skin, from the middle of my rib cage into my abdomen with point tenderness. Is this more lymphedema? Neither one of my doctor's is willing to say. If it is, is there anything I can do about it?

Please address questions to: Editor c/o NLN, 116 New Montgomery Street, Suite 235, San Francisco, CA 94105 or e-mail: nln [at] lymphnet.org (nln@lymphnet.org). Deadline for submissions is first day of the month prior to publication.