A Long and Information-Filled Day

All right, so today was a super long day and I'll try to summarize it for you as coherently as possible:

OHSU's Cancer Center advertises that the "Cancer Team" meets and discusses your case and comes up with a course of treatment.  I didn't find this to be exactly the case.  Instead, I found I met with some people and they each told me what they were going to do, and when they could do it...and it didn't feel like there was quite the coordinated approach I expected from reading the website.

That having been said, we started out meeting Dr. Arpana Naik, the breast surgeon.  The appointment started 45 minutes after the scheduled time.  She reviewed with me (again) the basic choices of lumpectomy & radiation or mastectomy and she talked about scheduling a surgery within the next handful of weeks.  I thought that was interesting given that I had been told Tuesday night by the nurse she thought I'd do chemo first....

Next genetics squeezed us in and we discussed the lab test for BRCA-1 and BRCA-2, the genetic mutations that could mean I'm more prone to get cancer than the average person.  I did the test (interestingly, I was given the choice: blood draw or rinse my mouth with Scope and spit it into a test tube...WHO, I ask, would choose the blood draw?  They're both equally accurate....) and will hear in the next two to three weeks if I have any of the common genetic markers.  If I do, that would likely mean a more radical surgery (read: double mastectomy and eventually removal of my last remaining ovary) in order to greatly reduce the chances I'll get cancer later in life.  (I'm all in for that, if I have the mutation).

Next was the long, long wait for my oncologist, Dr. Steven Chui...the appointment was set for 12:00 and I think he arrived around 12:55.  Greg had to leave at 12:30 so I did this one on my own, and I had another appointment across town at 1:45 so I was super-stressed and mildly annoyed.  ESPECIALLY because I felt like the oncology appointment was, in a lot of ways, the most important one of all.  Add to that my frustration that he says he'd like to do the chemo BEFORE the surgery, which is fine, but I began to have little faith in the "coordinated team approach" that I'd believed I was in for.

Dr. Chui had some additional information--first, I may qualify for a study called "I-Spy."  To determine my eligibility I have to have another biopsy (boo), another MRI, and then wait until the genetic characteristics of my tumor are analyzed (about two weeks).  If I qualify, it means additional scans and MRIs throughout the treatment (good), I'll have the same standard of chemo care as anyone else walking through the door in my condition (good), and I'll be given a course of drugs specifically designed to address the particular genetic characteristics of my cancer (good, right?).  The drugs are not FDA-approved, but I'm hardly the first person they'll be used on so I believe it's worth doing...but if anyone reading this knows more than me about such things I'd love to hear about it!

Dr. Chui recommends the chemo pre-surgery regardless of the eligibility for the study.  He equates cancer to a dandelion patch and my body to a lawn.  He says it's possible the dandelion seeds have spread but not taken root yet, just like cancer cells can be there, and he believes it's better to know what weed-killer will work early.  Or something like that.  It was a much more elegant analogy when he did it.

He also said he wants to do a CT and bone scan of my entire body to make sure I don't have cancer anywhere else.  He said he'd bet "a lot of money" that I don't, but that he believes I deserve to know.  I also believe it, even though it means some more anxiety waiting for the answer to the unknown question.  (If the cancer has spread, of course, the prognosis changes dramatically...and not in a good way...)

I don't know when all of that is going to happen, as I had to run out the door and he is going to be out of town next week, but I'm under the impression that while he's away next week (at an I-Spy conference, so I encouraged him to learn lots) I'll hear from his nurse and start working on the things he wants done.

Finally, I hustled across town to see Dr. Hesla at Oregon Reproductive Medicine to discuss preservation of my eggs in the event Greg and I want to have children.  It appears I'm a pretty good candidate, and LiveStrong and other pharmaceutical companies actually financially support a good portion of the costs that are normally associated with these procedures.  I have some paperwork to fill out, and it's still spendy, but I think it's a good thing to do so we can have the option of another child after all this is done.  I had quite a bit of blood drawn at this appointment (with no chance to eat all day) so if any part of this post doesn't make sense I blame it on that.

I guess I still have a fair number of questions at this point, as the path still seems a bit uncertain.

I continue to be touched and humbled by the number of notes, calls and other gestures people are making to reach out to me.  Thanks to you all for your kind words!