In limbo: an update

I've had some folks ask me for an update, so here's what's new. I’m still doing quite well, considering I had major surgery 2.5 weeks ago. Pain is greatly reduced, but I still have a good amount of discomfort, and I still have drains in place. I just went to the plastic surgeon, and he thinks I should be able to get the drains removed in the next week or so. Once that happens, I'll start going back to the office. I had my first "expansion" today to gradually fill the tissue expanders to size before they are exchanged for implants. Ouch. At least my chest doesn't look like it's harboring Tom Brady's deflated footballs anymore.

Aside from the surgery, I’ll be getting hormone therapy, but there’s a slight possibility that chemo will be considered. I’m waiting for one more test result before figuring out what my treatment plan will be. This is the Oncotype DX, and it looks at the genes within the tumor to see how active they are and calculates the likelihood for future recurrence and how beneficial chemotherapy could be. I know my last update said no chemo or radiation, and truth be told, my oncologists is confident that chemotherapy is not the best option for me. Lobular cancers are typically slow-growing, and since chemo targets fast-changing cells, the data indicates that hormone therapy is the most effective tool. However, as I’ve mentioned, ask for more opinions and you will get them! A medical oncologist I know through work strongly suggested I have the test done because my pathology report showed that the cancer had some local spreading, even if it hadn’t made it to the nodes and even if there were clean margins. She explained that people with this lymphovascular invasion have a higher risk for recurrence, so the Oncotype might provide further insight. My oncologist reluctantly agreed, recognizing that I need to feel comfortable as we move forward. Either way, I’m looking at 1-2 more surgeries (to finish reconstruction and possible oopherectomy [removal of ovaries]). Those will probably be later in 2015.

In the meantime, I'm putting on some pounds from all the amazing food our friends are giving us. Our fridge runneth over! We also skipped town and spent a beautiful weekend with our dear friends at their family's beach house. The beach definitely soothes my soul, and I love watching my kids jump the waves and have a ball. We went crabbing, and Hope caught the biggest crab (which isn't saying much; most were much too small and only two were barely legal). She named it Pinchy and ate it with great joy. I guess my advice to not name your food wasn't necessary after all.

Isn't science supposed to be a science?

Get a 2nd opinion, we always tell people.

Sounds great, but guess what? The 2nd opinion won't always agree with the 1st opinion. Okay, ask someone else. Oops, now there's a 3rd opinion. And who gets to adjudicate these differences of opinion? Yay, me!!

The problem is that I don't do like uncertainty. It makes me anxious. I love science because I love problem-solving. But, one thing I've learned in my years of health communications, is that it's rare for a problem to be truly solved to everyone's satisfaction. Google "research reproducibility" to see what a huge issue this is for the research community these days. Or read the popular press to learn that something we thought was good for you... eh, not so much (hormone replacement therapy, for example). Dozens of examples come to mind. Read what different reviewers say about publications submitted to peer-reviewed journals. Or just read some of the letters to the editor. Colleagues--all with impressive credentials--will criticize methodology, interpretation, or implications of most studies.

It makes for interesting communications work. But when you're the subject of disagreement, it sucks. We're looking for THE answer. We want to do anything that will save our lives. We don't want to look back and regret choices that could impact life or death.

I'm a huge believer in being my own advocate. I consider myself lucky that I have the kind of professional and personal experience to understand the vocabulary enough to hold a relatively intelligent conversation with my medical team and to be able to read and interpret scientific articles. I want to be actively involved in my treatment decisions. But there's a piece of me that wants to go hide and make all these experts go into a room, figure it out, and then come tell me the decision. Pat my pretty little head, and tell me not to worry, they will take good care of me.

Guess I can't have it both ways.