Remember me? I never call, I never write…and I do apologize. It’s been a bit crazy here on so many levels. The good news is I am feeling well, there’s no significant cancer news so I’m jumping right back into the fray because, well, I have to…but know that I’ve missed you!
I’m coming up on a 12-year cancerversary of sorts – my bilateral mastectomy was the first week of July 2002. Early enough in the month that the residents would be fresh and eager and before they had learned to sleep on their feet during rounds. Round about July 7, but I would have to dig out papers to confirm that. It’s good when some details float away…. In fact, don’t normally acknowledge this particular moment in my cancer biography, but it has been brought into the spotlight thanks to my desire to have my tumor sequenced. The back-story goes like this:
I’m not yet convinced that my third-line therapy, everolimus and exemestane (aka Afinitor and Aromasin) are working. If they are, they’re taking a lot longer than I would like, but that’s another story….
This story is about if/when I have to move on to the next treatment (yeah, that “if” is there to protect my sanity for the moment), I’d like the direction that genomic sequencing can provide. Do I have mutations in the PIK3 signaling pathway? What about the CDK4/6 pathway? Or any one of the myriad of DNA corruptions that could guide us as we enter the world of personalized medicine.
To have the testing done, you need a tumor. Unfortunately, that excruciating bone biopsy that showed my metastasis isn’t really suitable for this purpose, and there isn’t enough tissue anyway. So we turn back to the original tumor block, preserved in paraffin in an undisclosed remote location, kept in the company of, one imagines, tens of thousands of other cancer tumors, likewise protected and collecting dust.
The hospital where I had my surgery wants $30 to get the block, prepare 10 slides, and send them to Cedars for testing. I’m called to confirm I will pay the bill. Having met my $10,000 maximum annual insurance payout 2-3 weeks into the plan year, I’m pretty sure I’m in for another $30. My doctor’s office submits the request and we wait. And wait…
Two weeks pass and I get a call from my doctor’s office explaining that the other hospital can’t find the block.
Are you KIDDING me?
I’m on the phone with the pathology department at the yet-to-be-publically-named hospital where I had surgery nearly 12 years ago, and where the strains of on-hold muzak bear a striking and disturbing resemblance the the M*A*S*H theme song Suicide is Painless.
She returns to the phone…“We’re going to expedite this.”
“It’s been two weeks.”
“We will be sending an urgent message to the doctors right after the holiday.”
“OK, well, when you find it, is there a reason I can’t have it?”
“We don’t even release those in court cases.”
“So it’s ok to lose them, but not give them to the patient?
“Well, we don’t really consider it lost,” I am told. “Whoever took it forgot to leave a marker…”
Which is to say, they think the researcher or physician who pulled it not only failed to return it, but didn’t even bother to leave the required note about where it went. And this isn’t a small community hospital!
If it’s gone, there is no making up for this one, and if I want this information I will have to undergo yet another painful bone biopsy with hopes the tissue will be sufficient, presumably at my own expense.
That, my friends, is an extraordinary procedure for someone’s “ooops.”
So I wait, presumably months from my next crossroad and still anxious to know what lurks deep within me, what biological anomaly has lead me to where I am today, what target might be susceptible to our most modern of medical wonders. Meanwhile, my tumor is held hostage, or worse, by a major “world class” medical center.
It begs all sorts of questions. Whose tumor is it? How is medical tissue protected? What happens when “human error” strikes? What are the patient’s rights? Who’s responsible when things go wrong? And can this wrong be righted? And as advocates, what do we do about it? I can’t wait to hear what you have to say!