I am a nurse. I had a lumpectomy of a large tumor with 11 axillary nodes removed. Suddenly, less than four months after surgery, and two months before radiation, I noticed a swelling and puffiness in my left hand. My radio-
oncologist immediately referred me for a workup... it was another completely unknown entity and never discussed earlier, lymphedema. The swelling is an accumulation of lymph fluid after the normal drainage system has been compromised by surgery and/or radiation. This was a cruel, gut-wrenching complication, which I found worse than the cancer! At least with cancer, you are given a fixed number of treatments plus medications to ward off the side effects and to hope it won’t return; not so with lymphedema. It is a condition requiring daily exercises, manual lymphatic drainage with/without bandaging, and vigilant protection against infection where cellulitis can develop within hours of onset. (Cellulitis is a skin infection of the tissues under the skin, caused by bacteria, with symptoms of tenderness, pain, swelling, redness, fever and chills if infection spreads.) The aim is to prevent irreversible swelling of the limb, known as fibrosis. The psychosocial
impact is now being recognized as a major component of the permanent, lifelong condition where one has to wear a graduated compression garment (or orthesis) consisting of a full-length sleeve with hand and finger covering... much like wearing a white cane or announcing a chronic condition like diabetes to the world. I still feel like a freak. The garment itself is a problem—the material, the fit, the daily washing, getting it on with one hand, and keeping it clean (ever tried eating seafood with some finesse using an oversized disposable glove?). On top of this is the exorbitant cost for new garments and the massages. Critically important is protection from sun and insects. I found Sunveil clothing, which gives UVA+B screening. Exercising like walking or Tai Chi is good, also swimming and mild yoga. My advice to everyone, especially with ten or more axillary nodes
removed, is to watch for any swelling in the arm or hand, or a sudden infection from an insect bite or injury. No blood pressure monitoring or needle sticks on affected side! This can flare up suddenly up to 40 years later... triggered even by a plane trip (a compression garment is
excellent, off the rack). Watch your weight,
decrease salt intake, and avoid alcohol if
possible. Finally, get an early diagnosis and
assessment ASAP if you have any suspicions, and try to put it into perspective with your whole condition. Don’t forget we are so lucky to be alive, no matter a variety of trimmings like daily compression garments.
(MaryAnn, Lachine, QC, diagnosed at age 58)

I don’t think there was anything I could have done to avoid it—I think the combination of having so many lymph nodes removed and then radiation put me in a very high risk group for developing it. I did follow their instructions on how to care for my arm, but honestly I was totally surprised when it developed.

I got it about two years later and have tried everything from the press to the Vodder method of lymphatic massage, physio, sleeve, and on and on. I now do whatever I can manage and then deal with the swelling. Sometimes if I sleep on that side it will drain and I am up in the night. I went to a specialist a few months ago and his letter back to my doctor was “I couldn’t tell her much as she has tried everything.” The fluid just moves back and forth, sometimes worse, and sometimes the pain is intense.

I was shown how to gently massage my hand, arm, chest, and back to help redirect fluids to other lymph nodes that still remained. It worked and aside from a slight swelling under my arm when I overuse it, I don’t have a problem with excessive lymphedema.

I fell a year after mastectomy and hurt my wrist. Lymphedema set in from second finger joints to just above wrist. It’s a constant reminder.
(Deb Haggerty, diagnosed at age 51)

I joined “Abreast in a Boat” (dragon boating for breast cancer survivors) and decided to keep active with my arm and not worry about it. I don’t feel that activities will cause lymphedema. I purchased a compression sleeve and faithfully wear it when paddling. I also wear it when I fly or when my lymphedema acts up. I feel I have it under control and am lucky I can manage it myself.
(Kathy Reeve, North Vancouver, BC, diagnosed in 2000 at age 32)

I have had trouble with swelling off and on. But I did find the solution that worked for me. I started going to a massage therapist who did Manual Lymph Drainage. We do renos on houses and painting a lot. I usually noticed the swelling after lifting something heavy. It takes a while to get used to the idea that it is not a good idea to lift heavy things, especially hard if you’re so used to doing it. I have to be careful lifting grandchildren also.
(Carole, Victoria, BC, diagnosed at age 57)

I have some swelling in my upper left arm. It is not debilitating or painful... just very vexing when wearing short/sleeveless tops.
(Janel Dolan Jones, Forth Worth, TX)

No lymphedema. My partner and I did attend a lecture on the subject, and I perform a massage every day to prevent this from happening.

I did my exercises daily for a long, long time. Now, every once in a while I do them (gently pushing the fluid to the other side via massages). I always remember to have blood drawn from the other arm (which isn’t easy as chemo ruined my veins). If your veins are ruined, ask them to take blood from a vein in the back of your hand using a “butterfly”
device. One day after painfully trying to get blood from the arm, the nurse came up with this idea so now I always tell the nurses to do that.
(Laura, Navarra, Spain, diagnosed in 1998 at age 41)

I developed mild lymphedema about a year after surgery. Before that I had a severe wrist tendinitis—I was practicing a lot of piano for an examination a few months after the chemo ended. I think this was too much too soon. Beware of overuse injuries after chemo and surgery. I use my arms/hands a lot in my work, as a physiotherapist, playing the piano, digging in the garden, chain-sawing the winter’s wood, shoveling snow, building projects etc. So far the lymphedema is controlled by wearing a compression sleeve sometimes and pacing myself very strictly.
(Judith Quinlan, diagnosed in 2001 at age 52)

Thankfully, I haven’t experienced it. I did get really good education about it during my radiation therapy. I was part of an educational pilot to help prevent it.

It started about a year later, after doing yard work.
(Bev Parker, Naperville, IL, diagnosed in 1985 at age 40, recurrence in 2001)

Keep your arm on a pillow as much as possible during the healing. Do the exercises. Do not use that arm for blood pressure or having blood drawn from. Do not wear tight clothing—even those tiny gloves one- size-fits-all are too tight to wear. Follow the directions avoiding lifting and carrying things on the affected side. I slept with my arm on a pillow or across my chest and even behind my head.

I wear a medical alert on my arm on the mastectomy side. I can’t knit or crochet anymore, since my arm is weak, but I haven’t had lymphedema yet.
(Cordelia Styles, Quesnel, BC)

No lymphedema. I wear a compression sleeve when I paddle or fly in an airplane. The only thing that concerned me about the cancer was developing lymphedema because a girlfriend’s mother had it and her arm was enormous. I understand that it can come on suddenly after many years.
(Esther Matsubuchi, North Vancouver, BC)

I have not had any problems with lymphedema. I have a pink bracelet that I wear if I go into the hospital saying no blood pressure, needles, etc. in this arm.

Physiotherapy helped me a lot. Sometimes, after a physical effort, I have a kind of pressure in the breast, arm, and back. I massage myself gently, which is giving me relief. Taking blood pressure and drawing blood are always done on my other arm. I still have my port-a-cath for drawing blood.

I experienced some lymphedema during the first year after surgery
after I strained my left hand by using a hand ice crusher. The squeezing motion was very difficult, and I really strained. The next morning my fingers were swollen. Fortunately we got right on it with wrapping and physical therapy, and after a couple of months it was under control. I still wear an elastic sleeve on airplanes. I wear a medical ID bracelet: “Lymphedema alert: no needles or blood pressure on this arm.” I am scrupulously careful of my left arm now and promptly treat scratches, etc.—this is very important.

I am a breast cancer survivor. This experience in itself was devastating, and then three years later to develop lymphedema in my arm was a shock! This chronic condition occurred as a result of lymph node removal and radiation therapy. The physical and mental results were another traumatic experience. I found myself with an invalidity that prevented me from continuing my life in a normal fashion. My arm became extremely swollen, painful, and heavy with reduced motion. I was prevented from doing regular tasks that I had always taken for granted. To my relief, I discovered that I could get help to improve my quality of life, including Complete Decongestive Therapy (C.D.T.), the use of custom-made orthotic support (a therapeutic garment) on the affected limb, and exercises. I started treatments by a specialized C.D.T. therapist and saw a great improvement in my condition.
(Sally Saskin, Montreal, QC)