Thursday, February 9, 2012

Hmmmm....Am I feeling lucky?

I went back to Abbott again today for a meeting with Dr. Hutchison. Dr. Hutchison is the medical director for cancer rehabilitation and lymphedema at Sister Kenny Rehabilitation Institute and Virginia Piper Cancer Institute in Minneapolis.

She's one of the last specialists I will have to meet.
Since the beginning of this crazy ride, I have heard "We'll worry about that later" from a lot of specialists about a lot of things.
Lymphedema, being one of them.

Before cancer, I had no idea what it was. If you are clueless also, here's the definition:
Lymphedema refers to swelling that generally occurs in one of your arms or legs. Although lymphedema tends to affect just one arm or leg, sometimes both arms or both legs may be swollen.

Lymphedema is caused by a blockage in your lymphatic system, an important part of your immune and circulatory systems. The blockage prevents lymph fluid from draining well, and as the fluid builds up, the swelling continues. Lymphedema is most commonly caused by the removal of or damage to your lymph nodes as a part of cancer treatment.

There's no cure for lymphedema, but it can be controlled. Controlling lymphedema involves diligent care of your affected limb.

There's a high risk of lymphedema for anyone who has lymph nodes removed. The doctors have said there are around 30 lymph nodes under each of your arms. Their job is to catch infections and hold them there. If they don't do their jobs, infections can spread.

This is the same with cancer. Mine spread from my breast and into two of my lymph nodes. THANKFULLY, they did their jobs and held it there. If they hadn't, the cancer would have spread throughout my body.

The bad part of my lymph node involvement is that I had to have many removed during surgery.
I had 22 of approximately 30 removed. That's a huge amount. That leaves me wide open to infections on that arm.
Another icky part is the radiation that is recommended anytime your nodes are affected.
The worst part is, my odds of lymphedema are HUGE after having the removal and radiation.
Dr. Hutchinson told me today that I have a 60-70% chance of developing lymphedema.

She did more arm measurements, checked for swelling and gave me the all clear for today.
Unfortunately, it could develop tomorrow or 20 years from now. There's no test to see if I will get it. There are only measures I can take to prevent it.

I basically should avoid anything that will restrict flow on my arm like tight watches, sleeves, etc.
No trips to the sauna, hot tub or steam room are in my future, as I am to avoid any extreme body temp changes.
Most importantly, I shouldn't injure my arm. I should avoid cuts and bruises on that side.
Um, I'll do my best.

Dr. Hutchison said I should just live my life and call if I see streaks, signs of infection or swelling on that arm.
Exercise and weight control are huge deterrents of the onset of lymphedema.

My arm will be measured again after radiation ends in March to see if there is any changes in the size.

Here's a picture of late stage lymphedema, which is RARE now.

If caught early enough, a compression sleeve and/or glove can be worn to keep it manageable. Here's the one I have in mind. :)

I'm not going to stress. If I get it, I get it.
There are worst things, I suppose.


  1. I'm sorry you may be dealing with this. I have it in my legs. I wear compression stockings and have a pump machine to help the fluid go back up my body.

  2. I had no idea you had lymphedema, Missy. Is it painful?

  3. I'll be praying it stays away!! I like how they tell you to try not to injure that arm. haha

  4. It can be when it is out of control. I can chat with you some time about it. I'll have to take picture and post sometime on the multiples board for you.

  5. My grandma (44 year survivor) has it so if you have any more questions, ill do my best to help. Xoxo

  6. i am sorry for the pain that you may be going through, and hope that you are doing well. I am actually loooking for compression sleeves and was wondering if you could post a link for this one? I would greatly appreciate your help. I am having trouble finding cute ones:(