So, my mom and I went to Duke on Tuesday for my second opinion. I know I keep saying this, but this was finally going to be the day I got my answers. Even my CLT oncologist told me I’d leave with an answer the same day because they WOULDN’T HAVE TO TEST ANYTHING since all of that had already been done.
Oh, but guess what?! She was WRONG!
But I’ll get into that a little later.
My first appointment at Duke was at 1pm for bloodwork. So, I figured if we left Charlotte by 9am, that would give us time to get there early, check the place out and get lunch. But before all that could happen, I had to stop by the REACH center to have more bloodwork done that morning. Turns out my Estrogen levels are RISING, so they want me to start back on the Letrozole until I start my next cycle. HEAVY SIGH.
Anyway, we got to Durham, got lunch and rolled up on Duke’s campus around 12pm. WAY early, but we went ahead and checked in on the lab floor. They handed me a buzzer that looked exactly like one you get at a restaurant while waiting to have your name called. And since all of that took a whole 5 minutes, we sat down in the enormous waiting area and got comfortable. But almost immediately we heard a piano start up, and since we had an hour before my appointment time, we decided to go find it. We didn’t have to walk far, so we listened for a couple of minutes, took videos and played total tourist cancer patient, you know, like you do.
While lurking around the piano, I noticed a little boutique shop, and since my body gets physically pulled into a boutique store like a fly to light, we decided to go in. They had everything from earrings to wigs—at highly discounted prices! They were super cute, and I told my mom that the only surefire way to guarantee I won’t need chemo would be to spend $900 on a wig. But before that conversation could play out, my buzzer went off. I hightailed it to the waiting area of the lab and made it just in time.
When I was finished giving blood for the second time that day, I found my mom making friends with a local cancer patient and learning the story of the piano man. He’s an employee who plays on Mondays and Thursdays, but he came in that day (Tuesday) because he was going to be off the next week. I took that as a good sign. The stars were aligning for us already!
We then went downstairs to radiation oncology for my second appointment of the day, still early, but we checked in anyway. We sat down in yet another enormous waiting area, still able to hear the piano and hung out until our appointment time. We were eventually called in by the nurse who brought us back to the holding cell where we waited.
And waited some more.
When my appointment time came and went for the medical oncologist (scheduled directly after the radiation oncologist), I started getting irritated. I left the room to find someone and ask about what the hell was going on, but they said, “Oh, don’t worry, they (medical oncology) know where you are. This happens all the time.”
Well, if it happens ALL THE TIME, why did you schedule the appointments within 30 minutes of each other?!?!
But, I digress.
Finally, after a nurse and someone who was NOT the actual radiation oncologist came in to talk to me, the actual doctor came in. She sat with us for 8 minutes and laid out the reasons why she thought I was not a candidate for radiation. It made total sense, and I was happy with her decision. Chemo is actually more flexible than radiation with travel plans, etc. so this was going to be a HUGE PIA if I needed it. But I already knew I didn’t, so I still felt like this appointment was a huge waste of time.
Anyway, after waiting two full hours on her to tell me I didn’t need radiation, off to medical oncology we went. An hour and a half late.
I was worried about how long we’d be waiting on her since we were late, but she came right in only a few minutes after I’d changed into the hospital gown I’ve now adopted as a staple wardrobe piece. She sat down with us and laid out the facts of my case, which, in a nutshell are these: She doesn’t trust my current pathology report. She doesn’t trust ANY pathology report not done at Duke. So she’s ordering my blocks from Novant (the hospital system in Charlotte I’m using and who is storing them) and will have a totally new, totally unstained area of the invasive masses tested for ER, PR, HER2 and Oncotype again. She will have the ER/PR scores by early next week (as long as nothing happens to jeopardize this) and will call me with those results. If they come back lower than 10% (she said not likely), she is going to treat my cancer as Triple-Negative, which will require chemo. But if it comes back higher (very likely), we will have to rely on the other numbers to determine further treatment.
She will then test the HER2 again. If it comes back “equivocal” like it did last time, they will have to test it further (so let’s just go ahead and expect this). They will then do the FISH test, which if you recall from last time, is where my sample got lost in the mail when they had to send it to CA (they couldn’t send it to Duke because I wasn’t using them at the time—silly me). But lovely, wonderful Duke can do this in their lab. In Durham, NC. And, finally, once all this is done, she will send off for the Oncotype test—this is the only one they can’t do at Duke.
Anyway, what all of this means is: My case is complicated. We caught it early enough that it hadn’t spread to my lymph nodes, but it is bizarre because there were multiple focal points (areas of invasive cancer) along with a huge mass of DCIS that “probably” turned into the invasive cancer that they found. But they can’t be totally certain because DCIS doesn’t always turn. And they aren’t sure if all of these focal points stemmed from the DCIS itself or popped up separately in addition to it. Running the numbers should help to determine the risk of recurrence even if they aren’t totally sure if the masses are related.
It may seem like we are splitting hairs at this point (because we are), but I am told that invasive cancers in younger women tend to be more aggressive than when it appears in older women, so they just want to be thorough and make sure they take the best possible plan of action for my situation.
But no matter the outcome, there WILL be a celebration for the closing of this chapter and the opening of whatever comes next.