Lymphedema is a condition which breast cancer patients who have had axillary dissections and others who have had either injuries, surgeries or other complications which disrupt the lymphatic system are prone to. The lymphatic fluids are not able to disperse in a normal way because of the damage done to their passage ways. Instead, these lymphatic fluids pool. The affected area swells and without treatment can become large, painful, hot and hard.
In order to prevent lymphedema, you need to make sure that you don't have blood pressure taken on the affected side, nor anything which can pierce the skin. Carrying heavy loads can bring it on, or an infection can trigger it (which is what happened to me...the side effect of the chemotherapy led to some problems with my fingers which led to an infection under the nails...and I went off the antibiotic because it (along with the chemo) was upsetting my GI tract. My sister got it when walking her dog about three years post surgery. Her golden retriever pulled sharply and from then on, she's had a light case of lymphedema.
Lymphedema can be controlled with therapy and wearing compression gloves/sleeves. Severe cases call for pumps and other therapies. However, the problem is that among many doctor's there's just not a whole lot of interest or understanding. In addition, many therapists who have gone through training don't bother to become certified or list their affiliations.
My sister cautioned me that some therapists could merely have taken one class and that I needed to find someone who really knew and understand the issues of a lymphedema patient. A couple of years ago, I met a woman when I went to get a P.E.T. scan. She had a horrible case of lymphedema. Her arm was grotesquely swollen, hot, hard and painful. The only thing it was lacking is the discoloration which often comes with advanced cases.
I had mentioned the lymphedema to my oncology nurse on March 25th. She seemed unconcerned and when I asked her what should be done, she said "Well, I suppose we could send you to lymphedema school." Not good enough.
So, I made an appointment with my general practitioner's office and went in on Monday. My GP wasn't in, so I saw another person from the practice. He proceeded to tell me that my fingers, for which I had gone in before, were a side effect of the chemo. I said, "Yes, it is. But the infection is only related to the chemo because of my supressed immunity. The de-lamination (for lack of a better word) of my fingernail from the nail bed allowed for moisture to get in and it to get infected. The infection has now caused this problem." He said that usually, the therapists who do lymphedema work are occupational therapists. I asked if he would check the National Lymphedema Network to see who is locally certified. The closest person was in Lima, Ohio, an hour's drive north of my home.
I wasn't thrilled. I'm tired and the concept of having to go an hour each way just wasn't my idea of a fun time. I called and the therapist nicely emailed me with a list of other people who had gone through training at her school and specialized in lymphedema. The closest one wasn't practicing anymore. The others, save one, were 47 miles away and didn't seem to have the credentials that this woman had.
So I went. She was pleased that it wasn't severe and it was restricted to my hand rather than all the way up my arm. She fitted me with a compression glove and taught me how to massage the lymphatic fluids away. She told me that I didn't need to see her again unless I had questions or needed more treatment and to keep an eye on it. I also have her email address so I can reach her that was as well if I have any problems.
Today, a week after I visited the woman in Lima, I got a call from a facility a half an hour away. It seems that the oncology nurse had made a note of it and someone had finally read it and made a referral. I know, however, that waiting isn't a good thing and I'm still glad I took the drive. It shouldn't be so hard to get treatment for something which is a common problem. It shouldn't be that we have to struggle to get what we deserve. I am also grateful that my doctors in Connecticut and the American Cancer Society in Connecticut had warned me about this so I knew what to do and how to proceed. I'm grateful for my sister to have given me some other links.
I'm angry that if I didn't know what to do, I might not have proceeded and perhaps would be in worse shape. I'm angry that my fellow breast cancer survivors have to be so proactive and know so much more on our own. Somehow, it just doesn't seem right.
Do check it out. Learn the warning signs. Keep vigilant. It can creep out and get you any time.