If there is one question that has literally driven me nuts over the last few months it is this:
How do I know if what I’m feeling is the onset of Lymphoedema?
Post surgery my body was obviously recovering from the trauma, not only that but I also experienced seroma and cording, coupled with the nerve damage its no wonder I went in to a complete tail spin about the whole thing.
Even now, my arm hasn’t fully recovered but pretty much every day I sense something and the series of questions begins again… What is that? Is this the start? What should I do? Have I done enough or did I do too much?… and so it goes on.
So, when a fellow breast cancer survivor asked me today, “Is what I’m feeling lymphoedema?” I was able to share with her what I have discovered about the early signs and symptoms and hopefully reassure her that she hasn’t suddenly become a hypochondriac.
There are 4 stages to this:
- 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 lymphoedema 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 lymphoedema 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 lymphoedema 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 lymphoedema, you are at higher risk for moderate-to-severe lymphoedema 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 lymphoedema without any warning signs or changes in feeling.
The goal is to reduce our risk of lymphoedema but its important to remember that if we do develop lymphoedema there are many good treatments that can help control the symptoms.