Signs and Symptoms

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.

– heavy arm
– feeling like you have a tennis ball in your arm pit
– pins and needles
– tight skin
– swelling anywhere from the fingers to the top of the arm
– feels warmer than the other arm
– when pressed the skin leaves an indent
– jewelry and or clothes become tighter
– arm goes hard

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.

Source:  Breast Cancer.org and Medical News Today

Managing Lymphoedema

I found the video below very interesting for a number of reasons but the top one was that MLD (manual lymphatic drainage) is used/recommended in the USA for the prevention of lymphoedema (for those who are at risk following surgery). Although I have since surgery been having MLD, because of the cost of it and because it has not been recognised by the medical professionals that I have spoken to about it as an effective preventative measure, I have had a few doubts as to whether I should be funding my own treatment. Despite that, I have continued because I am in the camp that believes prevention is better than cure. This video however has given me the reassurance to continue and that I have in fact made a good investment in my own health and well-being by having the treatment.

The video goes on to advise that those who are at risk and want to reduce their risk should be well educated/informed about the condition/risks and of course exercise. Progressive resistance exercise with weights and aerobic exercise are highly recommended as studies have shown that those at risk of lymphoedema who did exercise had a lower risk compared to those who were at risk and didn’t.

Interestingly they are not recommending anyone at risk should wear a compression garment. Again I found this to be one of those questions which no one really seems to know the answer to. Although I have been measured for and now have a compression sleeve, I haven’t used it, and following the advice in this video now wont as a preventative measure.