Technicalities

After a much needed spring break away with our little family it was back to business as usual -- "usual" post-diagnosis -- with test results, appointments, and more waiting. Actually, there were some developments while on our trip, because as it turns out you can't actually leave cancer behind no matter how hard you try. As we headed out of town I called the plastic surgeon's office to schedule my pre-op appointment only to discover that my surgery never actually made it on his schedule. Coordinating medical stuff is hard, not just for the patient but for the physicians and staff. I know this because already several balls have been dropped in my care and it all comes down to communication. While it's frustrating, it's something I understand. I've seen Best Husband Ever (BHE) deal with all of this before in trying to coordinate care for his own patients, so I try to be understanding and keep in mind that everyone is fallible and has a lot going on. It's also taught me though to be more active in my own care and to check and double check dates, information transfers, and decisions. It doesn't help anyone to assume that everything's just taken care of. Long story short, my surgery got pushed from April 2nd to April 8th. It's an inconvenience but so is cancer. I think it's crucial to be flexible through all of this. 

We got big test results while on spring break in Colorado. I was hanging out looking at beautiful views, waiting for CB (our 8 y/o) to get back from ski lessons, when I got the text "call me when you get a chance" from Kick A** Surgeon (KAS). I knew she was calling with the results of my Oncotype DX test. Lump in throat. I set SJ (our 3.5 y/o) up with a huge pile of snow to climb on and tried to find someplace quiet out of the wind. I don't remember much of that phone call other than that my score was an 8 and that meant the chance of recurrence was very low. The threshold for "low" is 18. I swear the sun got brighter and the air fresher at that moment. I know I could breathe a lot better! I think BHE almost cried with joy/relief when I told him the good news. Not that this test dictates everything but had my score been high I would have started chemo when we got back home and I would've had a lot more to worry about in the future. 

In an earlier post I promised that I'd provide information and try to answer questions as they arise, and I've learned that I take for granted the steep learning curve that I've undergone while friends and family have been left to fend for themselves. Any medical journey is complicated and often confusing because treatment can vary according to medical center, doctor, and patient. It's all about weighing risks, benefits, current knowledge, and predicted outcomes. That's what I've gathered anyway. When it comes to breast cancer, age and gene status is a big factor. I'm part of the "we don't really know" group -- young, no known gene mutations, and no known reason to have developed cancer. There have been several "branches" of decision making over the last two months. Each time we've met with the oncologist BHE gets his pen out and draws flowcharts on the exam table paper. He's pretty useful like that. There are a lot of "if/thens" and we're nearing the end of the branches. So far the "ifs" have gone our way. Now we wait to see what we find during surgery. 

So surgery. I'm having a bilateral mastectomy. But you're thinking, "Why? My friend/grandma/neighbor/coworker had a lumpectomy." Remember what I said about every case being unique? Breast cancer treatment is tailored, to some degree, to the individual. There are many factors to consider when it comes to treatment. In my case, the location of the tumor is key. It's central and close to the surface. A lumpectomy just wouldn't make sense. They would have to remove the whole front of my breast and then do radiation and I'd be deformed. Then there's the option to remove only my affected (right) breast. Well, I'm 36 years old. Statistics on breast cancer treatments give 5-10 year survival rates because most of the women studied are older. While it's possible to have a recurrence of breast cancer even after a mastectomy I'm going to do what I can to not feel like it's lurking in the shadows. From another practical standpoint, I would have one reconstructed breast and one natural breast so the left would age and the right wouldn't. That just feels odd to me and it's a headache I'd rather not deal with.

But that's not all, folks. There's still more "branches" to deal with even during the surgery. I'll go into the operating room early next Tuesday morning not knowing for sure what's going to happen until I wake up. I could wake up with a completed mastectomy or I could wake up with a port placed for chemo. The first thing KAS will do in the OR is a sentinel node biopsy. If there are cancer cells in the lymph nodes then the surgery will stop and she will place a port for chemo. Once I'd completed chemo we'd do the mastectomy. But again, you're thinking, "Why? That's not what my mom/kid's teacher/hairdresser did." I know, right?! Remember what I said about individualized treatment plans? This one's mine. I wouldn't want expanders (place holders/skin stretchers that go under the chest muscle and make way for the permanent implants) in during chemo because they hurt and can heighten infection risk. Also, I just think I'd do better physically and emotionally to have my own breasts during chemo instead of a flat chest with scars. Hopefully the nodes will be clear and I won't have to do chemo. 

If you're thinking that this all sounds insane and you can't even wrap your mind around it -- high five! Neither can I. I was clueless about breast cancer before I was forced to learn more. I'd done Race for the Cure before and gotten the t-shirt. I'd made donations here and there, but it's nothing I made a big effort to know more about. After all, I thought for sure I'd have a crisis with heart disease, diabetes, or some other cancer given my family history. Breast cancer wasn't even close to being on my radar. I mean, less than 7% of breast cancer patients are under 40. I'm so stinkin' special right now I can hardly stand it. No really, I can hardly stand it. I don't want to be doing this. 

At this time one week from now I'll be tossing in bed, alarm set for 5 am, wondering how in the world I'm going to make myself go through with it. I pray that thirty years from now my grown daughter will be floored by the brutality of how breast cancer was treated "back in the day." I hate that it's now part of her medical history but my hope is that not only will she never have to go through it but that mastectomies will be old school. I know thirty years is pushing it but we can dream can't we?

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