If you don’t have a phone plan with plenty of unused minutes, a cancer diagnosis means it’s time to invest. The day after my diagnosis, the calls started rolling in. We had only told immediate family, so there was the “next day” check-in, making sure I still felt optimistic and was able to get out of bed. There were the calls from my midwife telling me that she was calling everyone she knew for a good oncologist recommendation. There was the call from my doctor’s office letting me know that other doctors would be calling me. I was even given a nurse navigator, an infectiously sweet woman, who started calling on a daily basis to make sure I was staying away from self-diagnosing myself on google. I started answering all these blocked calls from unknown numbers hoping one of them wouldn’t be the LA Times asking why we didn’t renew our membership. All the doctors had unlisted phone numbers, initially keeping me from being able to hunt them down. I think they wanted to make sure I wasn’t the kind of patient that would call them at 2:00 am and ask if I could get double D’s if I needed breast reconstruction surgery. And of course I wouldn’t ask such a thing! I already googled that question 🙂
I ended up with an oncologist that came highly recommended from someone else highly recommended at UCI. I didn’t have a whole lot to go on as far as friends going through breast cancer and giving me referrals. My friends haven’t quite hit this “normally” post-menopausal stage (which, as it turns out, is becoming more and more of a pre-menopausal situation). But I’ll get into statistics and numbers later!
Here’s the thing about doctors. From my first diagnosis phone call to my appointment with my oncologist, they both felt it necessary to tell me the worst possible scenario. Here’s the thing about me. I’ll run with what you give me. So, when I started hearing “surgery first” and “decisions about a mastectomy need to be made,” I already began envisioning my double D’s. In actuality, I started envisioning how incredibly exhausting the thought of major surgery was while pregnant and watching my now-walking little girl pull every book and DVD off the shelf while I reprimanded her from my bed, where we both knew I couldn’t move from. A vivid imagination, you say? Why yes, I am blessed and cursed with one of the best!
Here are a few initial steps needed to start the process of getting healthy:
• I had to go in for genetic counseling. They want to find out why a spring chicken like me is diagnosed with breast cancer. I have a 15-20% chance of having a gene mutation called the BRCA gene (stands for breast cancer, which is the first medical abbreviation I’ve heard that is understandable!). After this *cough, cough* $4,000 test – if it comes back as positive – a breast removal surgery is considered my best option. There is a 60% chance I’ll get breast cancer again in my lifetime without it, and those aren’t very good odds. Here’s the clincher though. If the test comes back negative, it doesn’t mean I don’t have a gene mutation, it just means they may not have the technology to find it. True, my chances are much lower of getting cancer again. The real beauty is when insurance steps in. With a gene mutation, I will always have the option for a mastectomy. I can have it now or when I’m done with treatment and feel ready to take on the task of multiple surgeries. I can even have it in a few years if I feel so inclined. If the gene mutation test comes back negative (which is more likely), I have to get the mastectomy with my first surgery or forever hold my peace. Holding my peace means if I decide I don’t like my chances of getting a recurring case of breast cancer, I will be paying for my breast removal and all reconstruction. So that $4,000 genetic mutation test turns into a drop in the pan and my *cough cough* turns into fainting at that price tag. This has a two-week wait time, so I’ll be a pro at thumb twiddling by the time they send my results!
• I met with my distinguished oncologist, who outlined the probable schedule. Cutting all the doctor fluff (ie long medical names that use every letter in the alphabet), the basic run down was surgery – chemo. If it hadn’t spread, we could induce labor early and start chemo after the baby (like morning sickness after birth instead of during!). If the tumor had spread, then chemo would happen as soon as I would heal from surgery, while I was still pregnant. After chemo, then radiation would happen if I’d decided to have a lumpectomy. Then I would be onto the joys of hormone-blocking medicines for 5 years. So, you’d better believe I’m having a killer 40th birthday in the south of France after my 30’s are done!
• My oncologist brought my case to a “specialist” board meeting (about 20 doctors weighing in, looking for the best and safest route to go for treatment). I requested that my midwife be allowed to attend, as she’d be the only one in the room that actually knew me and my preferences for the unusual (like a natural birth). I’m told the meeting was packed to the gills and all the doctors wanted a stab at this exciting case. After much debate and discussion, they made a conclusion: start chemo first. The surgery seemed like a pretty big task for the little human that I’m growing and they also felt that the tumor hadn’t spread yet, so we needn’t jump on the nip/tuck bandwagon too quickly.
Amazingly enough, that was all in one day! This team of doctors was moving and shaking and making sure the word “procrastination” wasn’t uttered by anyone. I found myself more than a little exhausted and in dire need of some R & R. Thankfully, I had written foot rubs into our wedding vows. I felt calm amidst the lightning speed at which everything was moving. It meant treatment was on the way, with a healthy recovery on its heels. Needless to say, it isn’t the summer I had anticipated. But who knows… maybe I’ll get a book deal out of it!