I was showed into a room with a bauble in it. I was told to go lie on it. The physiotherapist examined my legs. I felt confident and optimistic in relation to this strange condition my legs were in at that moment. With their swelling, hurting and feeling of inner tightness. I was convinced that the physiotherapist was going to give me hope; a hope for everything going back to normal again soon.
After a few minutes of her examining me, I wanted to ask the most important question of all possible at this stage. I hesitated, but decided to just go for it. “Is this… Permanent, this condition?”
The answer flied from the physiotherapists mouth immediately: “Yes. Yes, it is. It will never go away.”
It felt like a piece of my heart broke off. I simply did not know how to handle the fact that my legs were never going to get back to normal again. That just could not be true.
The physiotherapist continued: “It is so wrong that patients are not informed about this side effect when they undergo the cancer treatment you have been going through. It is almost inevitable to get lymphedema as a result of the lymph nodes having been removed and therefore not being there to transport the lymph fluid,” she said in an indignant tone. So this was normal? Why had I not been told?! I could not really process the information she was giving me.
Being diagnosed with lymphedema can be a hard blow. Especially because you do not know what to expect from it all. And at the same time many doctors do not know that much about it even though it is a pretty solid companion to several kinds of cancer treatments, among other things.
Lymphedema occurs because there is some kind of “flaw” in the lymphatic system. The lymphatic system is like a transport system, which co-operates with the rest the circuits in the body. The lymphatic system consists of a lot of small lymph vessels in which fluids are gathered to be transported away. On the way out of the lymph vessel this so-called lymph-fluid passes through the nodes where it will get filtered. The lymphatic system actually works as kind of the garbage men; it has the important role of removing the waste products in the body.
If the lymphatic system is damaged, it can result in fluid and proteins remaining in the tissue and a chronic swelling shows.
There are two kinds of lymphedema: Primary and secondary edema.
Primary edema is a matter of there being a problem in the structure of the lymphatic system. This will be the case when a baby is born with weak lymphatic system that at some point wont be able to fulfil its job as good as a strong lymphatic system would be.
Secondary edema is a matter of the lymphatic flow being damaged because of other factors, such as being a result of surgery. Secondary edema often happens as a result of cancer treatment. Many kinds of cancer spreads through the lymphatic system and it can therefore be necessary to surgically remove the lymph nodes in the area which can damage the lymphatic system. Radiation therapy can also cause damage to the nodes. When the nodes are either removed or damaged it results in the normal flow of the lymphatic system being impaired.
Lymphedema weakens the body’s immune system because the body is not as capable in defeating bacteria etc. when the lymphatic flow is not working properly.
Lymphedema is normally divided into the following stages:
- Stage 0 (latent stage): This is when the lymphatic system manages to work and adapts to the “flaw” in the lymphatic flow because of the body’s ability to compensate. An edema will not be showing.
- Stage 1 (reversible stage): The lymphatic system is suffering under the overload and a soft edema occurs. The edema reacts to pressure on it and the swelling decreases when you get the lymphedema damaged limb up high.
- Stage 2 (irreversible stage): The swelling is permanent and the tissue has gotten hard as a result of the lymph fluid not being transported away from the area. The limb no longer reacts on pressure and an up high-position.
- Stage 3 (elephantiatis): The swelling is extreme and the skin is hard and thick. There is a high risk of infections in the skin.
Even though lymphedema can seem a bit overwhelming in the beginning, it will get better. At least if you are willing to play with it, instead of against it. That is what this webpage is for; to pass on all the information I myself have gained about lymphedema during the years, so it might help others.
I myself have lymphedema in both my legs. My lymphedema is between stage 1 and 2. My knowledge about lymphedema is therefore based on this situation. However, the content on the website should be widely usable for people who are not in the exact same situation, since the general advices in relation to lymphedema does not relate to what stage your lymphedema is on as such.