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When getting ready for surgery for breast cancer I remember asking my surgeon how many of the patients he operated on had ended up with Lymphedema as a side effect. He and his Nurse Practitioner looked at each other and then said maybe 1 in one thousand. According to US Department of Health and Human Services it affects 3 – 6 million people in the US.

The CDC has it at 20-40% of cancer survivors in the US. The WHO estimates that over 150 million people worldwide have secondary Lymphedema.

Primary Lymphedema is due to a birth defect, Secondary Lymphedema is caused by damage to the lymphatic system.

Lymphedema is abnormal swelling. It’s not like regular Edema which is the water based swelling you sometimes get from eating too much salt; edema usually goes away overnight or in a short amount of time. Lymphedema is a protein based swelling that doesn’t go away and is chronic.

It’s a common side effect of surgery from breast cancer.  But it certainly wasn’t presented to me that way. Oh, no, it was a rarity, nothing to worry my little head about. And I did have enough to worry about anyway with “cancer, cancer, cancer” quietly whispering into my ear 24/7. So I let that one go.

It turned out that when my auxiliary lymph nodes were removed they were 90 and 95% cancerous, so the surgical team went back in and removed 7 more to be tested. Of those only one had a small bit of cancer. Yet now I was without 9 lymph nodes in a crucial area.

Gilda’s Club has workshops once a month on the prevention and treatment of Lymphedema. I had already read all the pamphlets from the hospital, what little I could find in my cancer books and I had of course searched the misinformation highway.

I was worried because when looking at a list of what the at risk factors were, I hit most of them. I work cleaning houses which requires very repetitive motions and I also train dogs and cats which results in a lot of scratches and injuries to the hands and arms and that’s with the friendly kittens and puppies.

I once called the American Cancer Societies 24 hour hotline at about 3am to help relieve my worries. They were no help at all. They just repeated the risks, noted the things to avoid and when I mentioned that those things were a part of my daily work, I was told I probably needed to get another job. Right, thanks. Very helpful.

I didn’t have Lymphedema yet though, I just wanted to prevent it so I went to a workshop at Gilda’s. It was almost helpful. I realized pretty quickly that I was very much at risk for developing it. I get cuts and scrapes all the time and never give them a second thought. I don’t wear gloves when I garden and carrying heavy things is just a part of my life. I did at least learn where to go if I got it. And yes, I got it. The thing is that it often develops slowly and can occur years after surgery or radiation.

So I went to physical therapy. Some of the treatments are manual drainage techniques and certain exercises with one of those colorful rubber bands and wrapping your arm a specific way in layers of bandages.

I actually went to physical therapy twice. My surgeon sent me for 6 sessions and later my oncologist sent me for 6 more. There is a thing about me and physical therapy. Each time I went I was sure I was going to get a massage but I never did, I got exercises to do. I did get manual drainage about 8 of the 12 visits but it’s not like a massage believe me. Still I tricked myself into going each week thinking I would get a massage.

I did learn how to bandage my arm though and I will say that knowledge was invaluable. My surgeon gave me prescription strength ibuprofen for the pain which just isn’t enough and my oncologist gives me Vicodin which is fun but a bit too much. Bandaging my arm in that specific way before I went to bed was miraculous in easing the pain.

I went back to Gilda’s the take the Lymphedema class again, now that I had Lymphedema to see if any of it made more sense to me now. It didn’t.

I went and got fitted for a compression sleeve. These are worn to prevent the swelling. I had been looking on line at these and they were all quite ugly. Beige colored things that went from the wrist almost to the shoulder. Yuk! I did find some that basketball players wore and they looked much cooler.
I set off to buy a few hoping to get the cool ones. These sleeves are very expensive but insurance pays for 2 every 6 months I think.

It turns out they come in wild colors and patterns also. You can get them covered in roses, pirates, etc. so that your arm looks tattooed or you can get all varieties of colors. I actually did get a beige one and a purple one.

The theory is that if I wear this all day while working, my arm won’t swell. The reality is that they don’t hold up well to puppies and kittens and it’s hard to clean with them on because the wrist gets wet and stays wet and just feels creepy. So eventually I just learned to live with a swollen arm and pain.

Now it’s moved down to my legs though and that seems pretty scary to me. The skin on my legs is so tight I can’t sit with my legs crossed. If I cut my leg, (gross out warning) liquid leaks out for a long time. This means I am very prone to infection. More Yuk!

One physical therapist had asked me about a few of my (many) scars. I told her about having hernia surgery years ago and afterwards the surgeon sending me to a vein specialist because he said my veins weren’t working right. The vein specialist asked if my legs hurt at night when I came home. I said of course, because, well, I’m fat. He said that wasn’t the reason and he removed the saphenous vein on both of my legs.

The physical therapist gasped a bit and asked if I had signed a waiver acknowledging that Lymphedema could be a side effect. Of course not. I was pretty young and invincible and if I don’t understand the lymphatic system now for sure I didn’t then.  What that means is that it’s more than 9 lymph nodes I’m missing, I’m missing some from both of my legs as well.

During all this time I’ve come up with some theories of my own on what might be a good treatment. Since the lymphatic system seems to run up instead of down I wondered if using an inversion table might help. I’d be lying upside down which would seem to help the lymph flow.

During manual lymphatic drainage there is a bit of pumping going on. A physical therapist gently pumping on certain points to get the lymph flowing. It occurred to me that a mini trampoline might have the same effect (and my doctors said yes, get one.)

Last week killing time at Gilda’s Club waiting for my Qi Gong class to begin. I took a look through the library and I found a great book “Living well with Lymphedema, lessons from"

The book has been very helpful. It’s laid out in a great way. It starts by telling you how to use the book; e.g. Read these sections if you are at risk, these if you are recently diagnosed, these if you are a health care professional, if you are a long term veteran of Lymphedema or just a friend of someone who has it.

The book covers diagnosis, treatment, finding quality treatment, complications, emotional challenges and self care. It’s laid out in my favorite way; lot’s of bullet points, short lists and simple diagrams.

I don’t think I’ll ever wear gloves when I’m gardening or emptying the kitty litter. I doubt I’ll do manual drainage myself and I can’t afford to have it done but I did like a lot of the suggestions in the book and even some of the exercises look good. And if I’m not mistaken the book told me that pedicures are a must. That I can do.

Do you have any experiences with Lymphedema? Do you understand the lymphatic system? (If so could you explain it to me like I was a 6 year old?)

Useful links for Lymphedema:

Or as always feel free to talk about anything that is going on in your life.

Monday Night Cancer Club is a Daily Kos group focused on dealing with cancer, primarily for cancer survivors and caregivers, though clinicians, researchers, and others with a special interest are also welcome. Volunteer diarists post Monday evenings between 7-8 PM ET on topics related to living with cancer, which is very broadly defined to include physical, spiritual, emotional and cognitive aspects. Mindful of the controversies endemic to cancer prevention and treatment, we ask that both diarists and commenters keep an open mind regarding strategies for surviving cancer, whether based in traditional, Eastern, Western, allopathic or other medical practices. This is a club no one wants to join, in truth, and compassion will help us make it through the challenge together.

Originally posted to Monday Night Cancer Club on Mon Feb 24, 2014 at 05:15 PM PST.

Also republished by Community Spotlight.

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