Prevention as an Ounce of Cure

Here's an update on what I've learned about lymphedema after an ALND. It's way less scary now that I know how to manage it, but it's still a drag. It takes about an hour away from me every day. I'm just in the earliest stages, and it possible to stay here forever, but not without a bit of effort - something breast cancer surgeons should make sure patients understand. It's all about retraining the lymph flow to take a different path through the body. Lymph nodes collect and clean out toxins (infection, etc.) from segments of the body. The body's divided into 'watersheds' which all get sucked to the closest lymph nodes, but, with some missing, some areas have to be redirected. Here's what's working for me right now, and what I wished I had known straight out of the hospital - just ten things!:

Chest Tattoo with a Side of Lymphedema

As a means of healing and prettying up my mastectomy scars, I looked forward to a chest tattoo. I envisioned never wearing a bathing suit top again! After my mastectomy, I asked my surgeon about it. His only concern was that it wouldn't look good when I finally gave in and got reconstruction. But, if I'm absolutely sure I don't want recon work done, then I could get the tattoo as early as six weeks after surgery. That would have been done in December, but we were just about to go to Costa Rica, so I postponed it for after the trip. And then I found out I needed more surgery, so I postponed again. I asked the second surgeon if he had any concerns about a chest tattoo, and he said the same thing, just to wait six weeks post-op. He didn't even have concerns about me tattooing my arm if I were so inclined. He said women regularly get nipple tattoos after surgery, which are perfectly safe.

So I had an artist friend draw up this amazing sketch for me based on a pile of random ideas I threw at her:

Lymphedema: A Research Study Overview

I'm cancer free, but very anxious about lymphedema. It's become a bit of an obsession, so, for anyone googling it, here are all the studies that I really should have researched before consenting to the Axilliary Lymph Node Dissection (ALND) surgery that half my doctors told me I didn't need, and the other half convinced me I should have had done months ago. In all that back-and-forth discussion, nobody gave me the harsh facts about lymphedema. They were all too focused on the cancer, so much so, that I really wasn't able to give informed consent based on their cheery consolations: "We don't see that so much; I wouldn't worry about it." The risk is small, but it's about as small as having cancer in my lymph nodes to begin with (somewhere between 15-30%). And the potential effect on my life is enormous. As far as I can tell, I basically agreed to risk being permanently disabled in order to have peace of mind that my cancer won't spread. Writing about it at least will briefly keep me from insanely measuring the circumference of my arms over and over.

My surgeon has taken a very Epicurean approach. He's quite convinced that there's no rhyme or reason as to why some people get it, so I should just live my life, without a compression garment, and not worry about it unless it becomes a problem. I asked about booking a kayaking trip eight-weeks post surgery, and he gave me his blessing. However, while it's true that there are risk factors beyond my control, there are also some things I can do to prevent this condition - things that patients should be told to do to decrease the risk. I believe he's negligent in not sharing the latest research. All of these doctors were. It shouldn't be up to patients to seek out studies to determine how to proceed. That's why they get the big bucks!!