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!
regrounding 
May 23, 2014 @ 14:02:44
I’m dumbfounded. That is exactly the type of thing I would take for granted… that my sample would be there when I needed it.
Sending gobs of ‘find the tumor’ vibes since no amount of accountability/responsibility on someone’s part can make up for the need to have the actual tumor tissue.
Big hug, S
May 23, 2014 @ 14:05:14
Insane, isn’t it? As if we don’t have enough to worry about – now THIS?? ARGH!
Thanks for the support, Stacey! Have a GREAT holiday weekend! XOX
May 23, 2014 @ 16:43:43
I always assume things will go wrong but am still crushed when they do. Grr….. For the trial I am on they need fresh tumor so mnay patients are sent home to sit around and let it grow. Eek! Good luck finding the next big thing, there often is these days.
May 23, 2014 @ 16:50:50
No, no, NO! That’s just crazy. I don’t think I could do it. I admire your strength. Hope the trial goes well. Will you keep me informed??
May 25, 2014 @ 10:00:48
I blog about the trial at LivinglyDying (we both use the same bright graphics!) but, after a year of cross country treks (boo hiss) I stopped with four maintenance treatments to go. It made sense to stop. So now I am two months off of chemo (bliss!) and delaying testing as long as I can. Immunology trials are tricky to assess because they need time – early results are often concerning but may not really indicate what is going on because the body is trying to apply what is learning – eg how to greet and eliminate cancer! What is great about this trial is that it is two part, so if i have disease progression, I automatically go on toT-Cell Infusion.
warmly,
Marcy Westerling
http://livinglydying.com/
May 25, 2014 @ 10:16:26
I will check out your blog! I had considered a Phase 1 extension trial with an PDL1 inhibitor but have so far decided to stick with my current protocol and see if it will kick in. Fingers crossed!
May 24, 2014 @ 07:14:21
Wow.. I wonder how many other things go wrong in our care that we never know about.
May 24, 2014 @ 22:18:41
And that’s an even scarier thought – but you’re absolutely right! Ugh…
May 24, 2014 @ 12:06:04
Lori, how utterly frustrating. What’s so crazy is there’s no accountability for what they have done. Her explanations on the phone make no sense as there seems to be no checks and balances in place for this error. I hope you get some better answers. Grrrr…
May 24, 2014 @ 22:18:00
Well, I will be calling the hospital’a bioethics department before I can agree there is no accountability, but if it’s gone there is obviously no way to correct their error!
May 24, 2014 @ 20:05:24
Lori, this is outrageous and just plain scary! if I understand correctly, the is the Pathology Department – you know, the doctors who examine itsy, bitsy tiumor cells and all their attributes – then give us the good news or the bad news, which affects us for the rest of our fucking lives. and you are told that “someone just forgot…”, but it’s not “considered lost”??? I second susan’s (mainleyhopeful) thought on wondering what other things go wrong we don’t know about. I am so very sorry for what you are going through. please, keep us posted. I am too mad to think through the excellent questions you pose, but feel a strong urge to call my pathology dept. and get some reassurance my tumor block can be easily located – and tell them your story just to give a head’s up that if they ever “lose” it…ouff…
May 24, 2014 @ 22:16:40
It’s insane – and I honestly can’t begin to think about what I do if it’s gone. For now I’m hoping that I lit some fires under people and we shall see what happens. But, if they DO have it, I’d see if you can get your tumor block just in case. It is my understanding that they pose no significant storage challenges and are stored at room temperature. Just a thought…. Xox
May 26, 2014 @ 15:59:36
Good luck trying to get your blocks or even slides. They claim they are not our property but theirs even if we need them for further evaluation with a continuing cancer. I am appauled that we can not even get our tissue to save our own lives. Not to be negative but this whole thing seems hopeless sometimes. It is almost like it is us against them. I do not get it. Thanks for your comments. I certainly hope that your tissue is found! xox
May 26, 2014 @ 17:15:45
Trust me, the bioethics committee is going to hear JUST that! It’s shameful that they don’t demand rules be followed and makes me question my desire to donate my body to “science.”