Briefly, tell me what the hell is going on:
Everything was going swimmingly until I went up to U-M for a third opinion on October 12. After reviewing my case, U-M doctors indicated that they believed that my current treatment regimen (R-CHOP) was "inadequate" and that I would need two additional cycles of a more intense chemotherapy regimen. The entire issue now is whether I should get additional treatment or whether my current plan (R-CHOP & radiation) is adequate.
So what type of cancer do you really have?
Uh...lymphoma. Beyond that, it depends on who you ask. Henry Ford decided I had high grade Diffuse Large B-Cell Lymphoma with a C-MYC rearrangement (I'll explain that in a moment) and a high proliferation index (100%). U-M concluded that my tissue had features of B-Cell and Burkitt's lymphoma, but decided that it was best characterized as high grade Diffuse Large B-Cell as well. Dr. Elaine Jaffe of the National Institute of Health - one of the most renowned lymphoma pathologists in the country - concluded that I had a "special subtype of Burkitt's lymphoma." So...there's like a really good chance that one of these three groups is correct. The interesting thing is that everybody is seeing basically the exact same things under the microscope, but everybody seems to reach a slightly different conclusion.
What are those funny terms you discussed above?
The "funny terms" are causing all this confusion. I'll try to explain:
- "High grade" - this means the cancer is "aggressive," and generally refers to how quickly the cells divide and reproduce
- "C-MYC" is a genetic mutation present in my cells. Dr. Al-Katib says that this stuff makes the cells "crazy." It is most closely associated with Burkitt's lymphoma.
- "Proliferation index" refers to the percentage of cancer cells that are actively reproducing. Mine was 100%.
What is the difference between Burkitt's and B-Cell lymphoma?
I'm not entirely sure, but here's what I gather: Burkitt's lymphoma is a crazy aggressive form of lymphoma associated with the C-MYC thing and a high proliferation index. The fact that I have these things tend to favor a diagnosis of Burkitt's lymphoma, but pathologists report that the actual cells of my tumor look like B-Cell lymphoma under the microscope. Because Burkitt's is more aggressive and crazy, it requires a more aggressive treatment. Burkitt's is also much, much less common than B-Cell (here in the US). Those are the major differences.
Does an exact diagnosis really matter?
Not entirely. It certainly helps. But everyone agrees that my lymphoma is crazy (C-MYC) and aggressive (high-grade and high proliferation index), and that matters more than the exact name of the diagnosis. R-CHOP is the standard treatment for B-Cell lymphoma, while Burkitt's tends to be treated with more aggressive regimens. But both cancers will respond to all the treatments to some degree. It's just a matter of finding the right one.
So why did U-M come to a different conclusion than Henry Ford?
I'm still trying to figure that out, and really, until that question is answered, I'm not seriously considering additional treatment. When I asked Dr. Li from U-M this exact question, here was her response:
Your lymphoma cells have the genetic mutation (C-MYC) and high proliferation features (KI67 100%) as Burkitt's.Which is fine. Except...everybody already knew that. U-M didn't do any additional testing on my tissue; they figured those things out by reading the Henry Ford pathology report. Dr. Anderson and Dr. Al-Katib both explicitly considered this stuff in August, and decided to go with R-CHOP. I'm still not sure why U-M came to a different conclusion.
Better question then: Why did Henry Ford choose to go with R-CHOP?
Because of the worst phrase I can possibly hear right now: Clinical judgment. In my initial visit with Dr. Anderson, he explained the difference between regular chemo (R-CHOP) and what he called "premium" chemo (more intense regimens). At the time, they were ready to go with the premium stuff because that's what the initial path report indicated. Dr. Anderson also expected that, given the fact that I had some crazy ass form of aggressive lymphoma, my PET Scan would show crazy ass aggressive lymphoma all over the place (organs, multiple quadrants, multiple extranodal sites, etc). When the PET Scan came back and showed a glowing ball of hot damn but only a single, tiny extranodal site in the same quadrant, Dr. Anderson was stunned but pleasantly surprised. The bone marrow biopsy also came back negative. So, given the fact that my cancer seems to have been caught very early, the Henry Ford tumor board decided to go with R-CHOP. Also, this allowed me to avoid more intense chemo that would increase the risk of a) problems during chemotherapy due to an even more busted-up immune system and b) long-term toxicity issues.
If it's Burkitt's, or at least has features of Burkitt's, why wouldn't you just treat it as Burkitt's?
Great question. I ask myself (and my doctors) this question all the time. Here's the best answer I can come up with:
You know those posters they put up in your elementary school classroom (for the peeps my age - they didn't put those things up until the feel-good 1980s and 1990s) that said "You are special" and "You are unique." Yeah...those are pretty much bullshit. But not for me. I am VERY special and unique.
Remember: My cancer has those crazy features - the C-MYC thing - and all of the cells (prolifeation index 100%) were reproducing very quickly (high-grade). Moreover, Burkitt's lymphoma tends to show up in other places on the body, not the particular lymph node that mine chose, and does not produce what is called a "granulomatous reaction," which is a reaction produced when your immune cells try to wall off a foreign presence in your body (which mine did).
So here's what Burkitt's lymphoma usually does: Shows up in a hidden part of the body, doesn't explode out of your body in an easily visible lump, and acts all crazy and grows like a mothertrucka. Ergo, it is usually not caught very early, and when it is, it is usually all over the place.
Now back to me: Not only did this thing explode out of my arm in a "oh my god what is that thing" sort of lump, I got to a clinic the next day, got it biopsied two days later, had the tumor removed 12 days later, and was in treatment within a month.
So the argument is that because I am young, healthy, and the cancer was early stage with no bone marrow involvement and hadn't spread very far, R-CHOP was the best treatment because it allowed me to avoid the excess toxicity of a more intense regiment. Moreover, there is a strong argument that the usual statistics about Burkitt's lymphoma - its high relapse rate, its tendency to get in the central nervous system - don't apply to me, at least not as they appear in the usual literature, because they are mostly stage 3 and 4 cases with bone marrow involvement, multiple extranodal sites, and so on. In short, the people in the medical literature who relapse are not like me because I am special and unique and this thing came flying out of my armpit and was all like "Ima getcha" and I got it first.
The other major reason for not treating more aggressively: toxicity. This stuff isn't Juicy Juice. It is poison. And introducing even more intense stuff into my body increases the chance of causing other problems down the line. It doesn't make sense to blast the hell out of the cancer to the point where I give myself a heart attack in 20 years. So there is a fine line to walk here.
What if you're wrong?
Ask myself this every day, and that is why I am begging for somebody to make a comprehensive case for more aggressive treatment. A one-sentence recommendation ain't gonna do it. Dr. Li has been great, but the best I have from her is the concern about central nervous system relapse, and her belief that the cancer will act more like Burkitt's. I haven't heard her directly address my unique characteristics that led Henry Ford and Dr. Al-Katib to conclude that R-CHOP was the way to go. I know she has spoken with both Dr. Anderson and Dr. Al-Katib. I hope she will do that again.
Is there any good news in this?
Plenty actually. As I've mentioned, my cancer was aggressive both in terms of the rate or cell division (grade) and in the number of cells that were actively dividing (proliferation). The awesome thing about this is that the chemo drugs target fast dividing cells (which is why stuff like my hair, my digestive track, and my spermzzzzz are all taken out in the process. But the bottom line is that if 100% of the cancer cells are dividing very quickly, then you're projected to have a pretty good response to treatment. And I have. Burkitt's lymphoma is actually characterized as more curable for this exact reason.
Also awesome is the location of my tumor, which is away from other vital organs and will allow doctors to radiate with minimal collateral damage.
So what are your current thoughts on whether you will undergo more treatment?
At the moment, I would say there is very little chance that I will undergo more treatment. But I am absolutley open to doing so if it seems like the best option.
The main reason I'm against more treatment at this point is that the doctors who say my current regimen is fine have fully, passionately, and comprehensively stated their case. Those aren't just randomly selected adjectives. I mean Dr. Al-Katib, Dr. Anderson, and even Dr. Kim have 1) explained why they chose R-CHOP, 2) explained why they didn't choose a more intense regimen (and why they wouldn't now), and 3) seem to really take my unique characteristics into consideration. Dr. Anderson took the U-M recommendation back to the Henry Ford tumor board, discussed my case individually with other doctors, and reviewed my case with the pathologists after getting the report back from Dr. Jaffe at the NIH. Everybody he spoke with concurred with my course of treatment. Dr. Al Katib showed up to our meeting with books, pictures, and journal articles and told us that he would treat his own son the exact same way. Dr. Kim is the one who explained how my case differs from most of the Burkitt's cases he has seen. Most importantly, these guys have openly acknowledged the weaknesses in their case - they admit that more aggressive treatment gives me the lowest chance of relapse. But it also increases the chances of complications and increases toxicity along with the chance of long-term issues. And they think the benefit (lower chance of relapse) is not worth the risk because my chances of relapse are already low.
I'm fully open to being convinced. But in my mind, the case has not been made for more treatment. Not even close. What I really need is for a doctor who recommends additional treatment to address the Henry Ford case for less aggressive treatment. To say that my particular characteristics don't matter. To admit and explain the risk of additional toxicity. To address the arguments of the other side.
I'm keeping potential biases in mind, too: Dr. Anderson and Dr. Al-Katib came up with and concurred with the R-CHOP regimen, and it could be argued that this makes them less likely to tacitly admit that the original plan wasn't perfect. But second opinion docs have biases too: To prove the value of their opinion by contradicting the first one; to issue "just to be safe" recommendations; to issue recommendations that put the cancer first, not the patient (that's probably a little harsh, but there is a difference).
Do you ever kick yourself for getting yourself into this mess?
Kinda sorta all the time, actually. I'm really upset that I didn't go to U-M in August, because all of this stuff could have been settled back then. But Dr. Anderson was on the fence back in August, and that might have led him to favor a more intense regimen, which means I would have had a more intense regimen, and we've already seen a great response with a less intense treatment...so I don't know. Maybe that would have led to overtreatment.
On the other hand, I don't really kick myself for going to U-M and starting this fight in October. I do in the sense that I know this entire terribly frustrating mess is of my own doing. But I don't really believe that I would be better off if we never had this entire discussion.
I'm mostly irritated at the pace at which this is all progressing, which is currently "John Navarre attempting to scramble." And also the depth of information I'm getting from people who think its a fine idea for me to go hang out in a hospital for a while and get more poison pumped through my body. If you recommend that, you better bring the wood as to why you think it's a good idea. And that hasn't happened so far.
How will you make your final decision?
It will be 100% medical. And by that I mean I will not let my own non-medical preferences get in the way: my desire to get to DC, my desire to be done with this, my desire (need) to start working, and so on.
Don't get me wrong: If I have to go hang out in a hospital for a good chunk of the beginning of 2011, I'll be crushed. It will be so god-awful in so many different ways, I don't even want to discuss it. I want nothing more than to finish this thing off and get on with my life. I don't like being 500 miles away from Emily. I don't like the idea of not being able to start my job on time. I don't like the idea of going through chemo again. I don't like the idea of putting more poison in my body. And so on.
But I hate cancer even more. And I know the people around me do too. So if I reach a point where I am convinced that my best chance to beat this for good is to undergo more treatment, I will do that. Period.
But I have a long way to go before I'm there.