Lymphedema, or swelling of one or both arms caused by a buildup of fluids, may occur any time after treatment for breast cancer. Any treatment that removes the axillary lymph nodes or involves radiation to the axillary lymph nodes carries the risk of lymphedema because the normal drainage of lymph fluid from the arm is changed. However, there is no direct relationship between the number of lymph nodes removed and the risk of lymphedema. There is no good way to predict who will and will not develop lymphedema. It can occur right after surgery, months, or even years later. The chances of developing lymphedema remain throughout a woman's lifetime following cancer treatment. Women who suspect they have lymphedema should contact their doctor directly.
Some women we interviewed described their experiences of lymphedema. This included swelling or a feeling that the arm or torso was bigger than usual, tightness, a heavy feeling, tingly arms or just a weird feeling that did not feel right. Some women felt it was a bit painful but not a lot. Women also described that changing symptoms over time, especially with weather changes.
I didn’t know I had lymphedema, I knew something was wrong and I would say that to both my general practitioner as well as the oncologist.
I had a lot of lymphs in my arm taken out and so I have to wear a sleeve if I travel or whatever I don’t wear one all the time but my arm is really affected by the barometric pressure. And , it was kind of like my arm would swell and I’d go to the hospital and they’d say, “Have you been lifting something too heavy?” and I’d say, “No (it swells) when the weather changes because I have bad allergies and I get bad headaches from the weather and it affects my arm. So when the weather changes my arm will tend to really ache and it will swell.” So I go to the hospital and get a pump, have my arm pumped and have a little bit of physio done on it and then it is fine. But I just have to watch that because I had so many lymphs taken out and I don’t like to wear a sleeve all the time. I know that you can get coloured sleeves and stuff. I don’t like that because I don’t like when people ask me why I’m wearing it because then they always say, “Oh I’m so sorry.” Well it’s all right, so I just try to tend to wear a long-sleeved shirt or something when I have to wear my sleeve so that people don’t notice. I just don’t want people to feel sorry for me because there’s way too many things in the world that are worse than my breast cancer.
Even though most women experienced the symptoms in their arms, Debbra describes developing lymphedema in her trunk, also known as truncal lymphedema. Most women went to see their health care professionals. Even though most oncologist specialists can recognize lymphedema some of the women experienced that other health care professionals would not always directly recognize the symptoms as lymphedema and some women had to insist that something was wrong.
And so again it was me pushing to be referred to a lymphedema specialist to be able to try to get my arm under control and the thing that the physicians don’t understand which I’m working with the Lymphedema Association too. As I said ‘I’m kind of a quiet, shy reserved woman’; it is something the GP’s (General Practitioner) don’t understand. They don’t understand that it doesn’t really matter how many lymph nodes you take out, if those are the major lymph nodes that are clearing your system you can get lymphedema and if you stop lymphedema in a 0-stage or stage 1, you can reverse it and you can keep it under control. If it goes up to the higher stages then you’re going to have tissue damage and a whole bunch of other issues that are going to get you into trouble long-term. And this is a chronic thing but if you control it and you’re aware of it and you have the garments to keep the pressure down, or keep the pressure on and keep the swelling down then you can protect it from going to the next stage and so I think that there’s a huge opportunity in the healthcare system because that’s also when you come back from surgery. Two of the pamphlets I was given to do exercises were giving conflicting information in terms of when I should be doing the exercises and the type of exercises I should be doing and things like that.
Several treatments were mentioned for lymphedema such as lymphatic massages, physiotherapy, regular exercise, yoga and water exercise. Joanne said that "If I didn't have deep tissue massage every two weeks I don't think I could raise my arm." Tina could hardly raise her arm and said: "So what basically by having the lymphedema stuff done they rerouted the lymph system to take a new route around which really helped." Shelley made arrangements at work so that she is able to move more to help her reduce the symptoms of lymphedema. Some women were able to visit specialized units in their hospital where the lymphedema was treated. Women also mentioned that they had to wear a compression sleeve to reduce the symptoms. Most women wore it for a while especially in the beginning but less over time. Margaret mentioned that she now puts it on especially when she has to travel.
I did discover or develop a little bit of lymphedema in my right arm where the surgery had been. So I was dealing with that but after my surgery, the hospital that I went at has a really good support system for people with breast cancer, and I went to that and it talked about all sorts of things.