Category: Lymphedema

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

I wasn’t considered to be at high risk for breast cancer, and yet I got it. I also wasn’t considered to be at high risk for lymphedema, and I have it too.

I was high risk for celiac disease, so that diagnosis, although kind of sucky, isn’t too much of a surprise. I’m now hoping that it is my new panacea (I had hoped that the CPAP was my panacea) – that is, once my body starts to heal itself on a gluten free diet, I hope that many of my health issues clear up.

This post is more about lymphedema. A month ago (Oct 2nd), I noticed that my left hand was swollen. Having been a part of many breast cancer support groups, I knew that this was an early sign of lymphedema.  Having only two nodes removed (to ensure the breast cancer had not spread), and not doing radiation, meant that I was at low risk. The only precaution I was told to take was to not allow automatic blood pressure cuffs on either of my arms – because the machines put in too much pressure. Instead my blood pressure is taken on my right leg.

When I noticed the swelling in my left arm, I immediately called my breast surgeon’s office. I saw the nurse practitioner that afternoon. I was scared. She put in an immediate (ASAP) referral to the lymphedema specialist. At the same time I called my physical therapist, who is also a lymphedema specialist.

Then all the cogs in the medical system slowed to a halt. I had to wait a week to see my physical therapist. It took almost two weeks just to get an appointment to see the lymphedema specialist. Those weeks were hell. I had no idea if what I was doing was making things better or worse. I had no information that I could trust. There is so much mis-information on the web, and so little is truly known about lymphedema.

I was glad to get in to see my physical therapist, who put my mind at ease. She prescribed a compression sleeve. I decided that if I needed to wear one that I would get a pretty one. I bought this nice patterned one at Lymphedevas.

Last Wednesday I finally had an appointment with the lymphedema specialist. He formally diagnosed it as stage 0/1 lymphedema. Now that I have it on the left, it changes what I can do on the right. I’m no longer in the low-risk category. He prescribed a higher compression level for the left arm (level 2), and the lower compression (level 1) for the right arm. I was sent over to the cancer center to pick up some new sleeves.

Now, I need to wear the sleeve and glove on the left arm whenever I’m awake (so not for sleeping but otherwise I wear the compression). I need to keep this on until the arm goes back to normal. This may never happen, or may take 6-12 months. I’ve had it for less than a week and I already notice a difference, so that is good. Wearing the sleeve is actually comfortable. My arm hurts when I’m not wear it (a dull ache). The glove makes typing a bit of a challenge, so I’m finding myself relying a little more on speech-to-text (glad it is built into the Mac OS).

On the right side, I now need to wear a sleeve prophylactically (to avoid getting lymphedema). Specifically, I need to wear it: (1) during strenuous exercise, (2) whenever I fly, and (3) whenever I travel above 4000 feet elevation. In addition, I can no longer have IVs or shots (e.g. flu shot) in either arm. I’m still OK for blood draws on the right side – although, I think that will depend on the extent of the draw – the last time I had 8 vials taken (celiac micronutrient deficiency tests), which really taxed my arm, so I think that would be a high risk activity that I would want to avoid in the future.

The new sleeves I have are from Juzo. They are the ones that the doctor recommended. They are not fun colours (skin tone), but they don’t actually look as bad as I feared they would. What I find interesting is my desire to have pretty sleeves. I’m not normally a fashion conscious person. For the most part I wear yoga pants and one of the various free t-shirts my husband picks up at tech conferences. So, I find it interesting that I’m drawn to garments with pretty patterns on them.

Going forward, I’ll wear the plain garments for exercise and when I’m at home working. I will likely switch out to something pretty for those limited times when I’m out socializing. The pretty ones may not be as effective, but they make me feel good – and for a couple of hours now and then, feeling pretty won’t be causing any harm.

In some ways this is similar to my large collection of buffs that I wore when I was cancer-bald. I found myself buying more buffs then I needed (different ones to match different outfits). They made me feel good. And so, with that, if I am destined to wear the sleeves for the foreseeable future, I might as well get a few that I like to wear.