There is still very little understood about lymphedema. Because the largest population of those who suffer from secondary lymphedema (that is lymphedema as a result of surgery for something else) are breast cancer survivors, many of the studies involve the breast cancer population.

I want to highlight that there is a difference between prevention of lymphedema for those who are at risk (or high risk) and treatment for those who already have lymphedema. Recommendations for those who do not yet have lymphedema are not the same as for those who have it.

On a side note, I had someone tell me I should take x supplement because they took it during chemo and didn’t develop neuropathy. As a result, she concluded that the supplement would help cure my neuropathy. This highlights a fundamental misunderstanding about the difference between prevention and treating what is. It also highlights that she didn’t understand that she didn’t understand the differences between correlation and causation. But I digress.

I was hoping to get a better understanding of the face versus fiction of lymphedema from a review article that my physical therapists (also lymphedema therapist) mentioned (see Cemal et al, 2011). Unfortunately the article was more focused on the prevention of lymphedema rather than the treatment for those who already had lymphedema.

In reading the article I did find myself wondering if my lymphedema in my left arm is related to my DIEP surgery – and more specifically that my left arm was used for the blood oxygen level testing. After surgery my inner left forearm was one giant bruise with a bunch of pin pricks in it. I recall from my first couple of days after surgery that it was one of the areas of my body that hurt the most – even more than my giant stomach wound.

One of the challenges with lymphedema is that it can develop later (typically 12-18 months) after the procedure that may have caused it. So, it could very well be that my left arm lymphedema was triggered by the large number of needle pricks during the 10-hour surgery. I could also have been caused by the exercise class I went to the week before it developed. Or the long bike ride that resulted in some shoulder cramping. So many different things could have caused it. We just don’t know.

To summarize the findings of this systematic review, there is limited evidence to support the recommendation that venipuncture [needle sticks such as blood draws] should be avoided in patients with a history of lymph node surgery. Similarly, there is a paucity of evidence to support the preventative measures regarding limb constriction, elevation, heat and cold, and air travel and use of compression garments when flying. On the other hand, we found good scientific evidence (level 1 and 2) to support the recommendation of maintaining normal body weight or avoiding weight gain in patients who are at risk for developing lymphedema. Similarly, there is strong scientific support for participation in a supervised exercise regimen both in patients with lymphedema and in those at risk for developing lymphedema. ~ (Cemal et al, 2011, p. 549).

For me the elephant in the room is weight gain. Medications and surgeries have all resulted in me gaining more weight than I’d like. I’m active. I have healthy eating habits, and yet I am carrying more weight then I think is healthy. I’m hoping that a shift in medications will help that – as my weight is starting to cause other complications. Added to the mix is that most celiacs who eat gluten free after diagnosis gain weight as the body starts to absorb nutrients properly. I’m hoping I’m the exception on that one … Additional weight gain would be unhealthy for me.

One other quote from the conclusion is important “The lack of clarity for effective preventative measures likely contributes significantly to patient fear and anxiety.” (Cemal et al, 2011, p.550). I think this is really important. If you read too much on the internet, you will hear lots of scare tactics about lymphedema. Don’t do this or don’t do that or you might get it. The problem is, as the article indicates, there is actually little evidence that demonstrates that any of the preventative measures make any difference what so ever. This matters, because if you end up with lymphedema, and end up asking why did this happen to me? you start asking what could I have done differently? It leads to a sense that you did something wrong – which isn’t necessarily the case. In addition, if you haven’t had it, you can unnecessarily become afraid of doing things as they might lead to it. That fear and anxiety is unnecessary. As breast cancer survivors, we have already have enough things to be afraid of, we don’t need to add lymphedema to the list. 

I was in the low risk category. I did what my doctors told me to do. I still got lymphedema. I don’t know why. It doesn’t really matter why. But I also don’t think you should do anything different because I got lymphedema. There simply isn’t any evidence out there that says this will cause it or this will not.

Reference

Cemal, Y., Pusic, A., & Mehrara, B. J. (2011). Preventative measures for lymphedema: separating fact from fiction. Journal of the American College of Surgeons, 213(4), 543-551.  doi:10.1016/j.jamcollsurg.2011.07.001