It’s Love, Not Crazy
I spent all of Monday and Tuesday (and most of Sunday) digging around the internet to see if there are any experts on inflammatory myofibroblastic tumor (IMT). I feel like I did it in secret, like some kind of psycho stalker. Every doctor we’ve dealt with so far keeps saying how rare this is and treatment is going to be guesswork. But my feeling is there MUST be people hidden away who know mountains about specific subsets of the disease and if I look hard enough, I’ll find the right person who has the right information who can say, “I know what’s going on with Ana.”
And…to this end…I tracked down a woman SOLELY based on her initials on a pubmed article. Well, like ten pubmed articles. I Googled versions of her name until I found her and her email address (I’ve discovered that most doctors and clinical research types don’t have a problem posting their email addresses online). And…she responded!
She retired last year, but she gave me the names of four doctors all of whom have experience with IMT. She also gave me this bit of advice:
“Intravascular/intrahepatic IMT is very rare, even rarer than most other locations for IMT. Sometimes other tumors can look a lot like IMT, so it is important to be certain about the diagnosis.”
Wait…what? Could the diagnosis be wrong?
She then went on to give me the names of two pathologists who work in Boston and have experience diagnosing IMT. I immediately emailed both of them and they both responded (one from vacation). Then, yesterday, I had a copy of Ana’s biopsy slides sent to them. It should take 3 to 5 business days to get there. Time is of the essence. Both pathologists are going to a conference on the 28th and their assistant said there would be a significant delay if the slides arrive after they leave.
I did all of this without (initially) mentioning it to Ana’s doctors and on the urging and advice of my surgeon friend who said that we’re completely off the radar now, in a no man’s land of best guesses about what the best treatment should be.
He advised me to talk (in-depth) to all the smart people I can find including Dr. Hochberg and Dr. Yamashiro. His exact words were, “just remember that no one will have absolute definitive answers, so don’t expect too much of that. It’s going to be up to you to put all of their different pearls of wisdom into a single conclusion.” Um, it is?
It may be that the original pathology was right and this is just a very rare (ridiculously rare?) presentation of IMT. It had been sent out to a few institutions before landing at Sloan Kettering for the final diagnosis. It also may be that this was misdiagnosed. I reread the original pathology report which actually contained three differential diagnoses with IMT being the most likely, although Ana’s sample came back negative for a specific gene (ALK) that’s often associated with IMT. That report also said that the sample was weak and I don’t have any other reports after that. I have no idea if they ever retested with a better sample. I know they were going to restain for this gene at Columbia with Ana’s most recent biopsy. We haven’t actually gotten their pathology report yet – but I wonder if they are just assuming this is IMT and not actually staining for IMT because it was already diagnosed. Again…
As if the pathology end of things isn’t confusing enough, one of the oncologists that the retired IMT specialist put me in touch with called yesterday and we had a long conversation. he’s treated IMT in numerous patients, he said he agreed with everything that Ana’s doctors have done so far. He admitted that no one really knows what the hell is happening with these tumors. They don’t tend to respond well to chemo (but sometimes they do), they do tend to come back, though they typically recur in the same place where they originally showed up and very rarely spread (but they can spread). I mean, he seemed absolutely baffled by them. He said the only thing they tend to respond to is a new drug which is an ALK-inhibitor, but only tumors that are ALK-positive.
When I asked him if he ever treated a patient who was ALK-negative with this drug (because it’s notoriously very difficult to detect the ALK-gene without a huge sample), he paused and literally said, “that’s an intriguing thought! No, I haven’t.”
WTF?? I’m not the smart one here! Why not try it on a tumor that seems resistant to all other attempts at shrinking/resecting/vaporizing? By the way, this guy knew the oncologist at Columbia (Dr. Yamashiro) very well and had only good things to say about him (this put my mind way at ease somewhat – this doctor is from Tennessee).
And all of the above is what’s been in my mind…nonstop….for the last three days. It’s creeping into my dreams now. I feel more than a little crazy. I finally confided this to my friend Lindsay (who also works with me and has helped keep my business running smoothly while I’ve personally been too distracted to work). Her response was…”Its love, not crazy.”