Lymphedema usually progresses through a series of stages. That’s why it’s important to get help right away, even if your initial symptoms don’t seem like a big deal or they come and go. One episode of numbness, tingling, or swelling just about always will lead to more. If you don’t act on early symptoms, the buildup of lymph can cause permanent damage to the tissues under the skin. According to the International Society of Lymphology, the stages are:
- Stage 0 (also called subclinical or latent): There are no visible changes to the arm, hand, or upper body at this point, but you may notice a difference in feeling, such as a mild tingling, unusual tiredness, or slight heaviness. You can have stage 0 lymphedema for months or years before obvious symptoms develop.
- Stage 1 (mild): The arm, hand, trunk, breast, or other area appears mildly swollen as the protein-rich fluid starts to accumulate. When you press the skin, a temporary small dent (or pit) forms; you may see this referred to as “pitting edema.” Such early-stage lymphedema is considered reversible with treatment because the skin and tissues haven’t been permanently damaged. When you elevate the arm, for example, the swelling resolves.
- Stage 2 (moderate): The affected area is even more swollen. Elevating the arm or other area doesn’t help, and pressing on the skin does not leave a pit (non-pitting edema). Some changes to the tissue under the skin are happening, such as inflammation, hardening, or thickening. Stage 2 lymphedema can be managed with treatment, but any tissue damage can’t be reversed.
- Stage 3 (severe): This is the most advanced stage, but it is relatively rare in people with breast cancer. At stage 3, the affected limb or area of the body becomes very large and misshapen, and the skin takes on a leathery, wrinkled appearance.
Once you have mild lymphedema, you are at higher risk for moderate-to-severe lymphedema than someone who has never had any symptoms. This risk persists even if your symptoms go away with treatment.
Every case is a little bit different, though. Some women have reported the sudden onset of mild or moderate lymphedema without any warning signs or changes in feeling.
Your goal is to reduce your lymphedema risk to whatever extent you can, even if you can't eliminate all risk. If you develop lymphedema, there are many good treatments that can help you control your symptoms — visible swelling and discomfort often the most bothersome — and keep lymphedema in check.
Expert QuoteThere are side effects of breast cancer treatment that are private and not visible to the outside world. Then there are others that are public and visible, such as hair loss from chemotherapy and body changes from surgery — and lymphedema falls into this category. But unlike those other side effects, lymphedema is often unexpected. So it feels like adding insult to injury when it occurs, especially if women haven’t been told very much about it.