I read on the Internet last week that one of the treatments for a benign schwannoma is to do nothing but track it to make sure it doesn't turn into something more sinister.
When we saw Dr. Singer on Thursday he confirmed this, explaining that our options were either to just watch the tumor, or to schedule surgery and take it out.
So it didn't surprise us this morning when the neurosurgeon on my case, Dr. Mark Bilsky, started his presentation with a description of the laissez faire approach. We'd heard it before and presumed the doc was just clearing his throat before he got serious about my particular case.
It was several minutes before it dawned on us that he was recommending we actually pick Door #1, the door leading to a summer free of any further medical attention whatsoever.
We had never thought this option was open to us -- and apparently Dr. Singer hadn't either -- because my schwannoma shows up on the CT scans as invading bone and grasping for major nerve conduits and blood vessels in and around the spine.
But for Dr. Bilsky, the single most significant fact of my case is that I have no symptoms whatsoever. No numbness. No loss of strength or function in my lower back, legs or feet. Most important, no pain when going to bed or waking up in the morning.
He reasons that a slow-growing tumor as big as mine which hasn't yet interfered with life as I know it may not do so for years. It's been with me, he said, "forever," meaning at least 20 and maybe as long as 30 years. An old friend.
"It may never have to come out," he said, a sentence I repeated back to him slowly, to make sure I had heard it right.
If I go ahead with surgery now, he said, I will undergo all the risks of the operating room, the pain and discomfort of getting back on my feet, and the inconvenience of months during which I wouldn't be able to do anything remotely strenuous, not even so much as putting Elizabeth in her carseat. At the end of all that, I can count on being less strong or nimble than I am now.
The only reason to accept that grim certainty, he said, is if I think I'm bound to have the surgery anyway and it would be better to have it now while I'm relatively young and strong.
But Dr. Bilsky said the odds of avoiding it entirely are actually pretty good. And even if symptoms appear months, or years, down the road and he has to operate after all, the delay won't cost me much. The spinal repair I'd require would be no greater than it would be today, and any other neurological damage inflicted between now and then can be repaired.
"I'm sorry to have to tell you this," he said. "I love to operate, and I've got kids about to go to college."
Giddy as we were starting to feel, this struck us as a real knee slapper. He wasn't done. When I said I had many well-wishers who might feel a sense of anticlimax when they heard the news, he told me not to worry.
"Oh, we can keep it going," he assure me. "We can milk it. Tell them we said the tumor is inoperable. Tell them you went to Sloan-Kettering and we couldn't take it out."
All levity aside, flying home with nothing to show for the past several weeks of psychodrama but frayed nerves and a prescription for a fresh CAT scan in four months does leave me feeling a little sheepish alongside my deep satisfaction and happiness. I know it shouldn't, but it does.
I'll get over it.
I think my friend Nancy in Albuquerque probably wrote the best epitaph for this whole affair.
"Okay, we've ridden all the rides. That was fun. Now it's time to go home. Whew."
Thursday, June 20, 2013
I figured that with my appointment coming up this morning, Dr. Singer wouldn't bother giving me a preview of my biopsy results over the phone yesterday.
So my phone was turned off last evening and I was unaware of his call until I woke up today and saw that he'd left voicemail, with staggering news. The pathologist reported that my tumor is a benign schwannoma.
We rushed to our iPads and learned that a schwannoma originates in tissue that sheaths the nerves, grows slowly, is nearly always non-malignant, but can invade and destroy bone. It is often misdiagnosed as a soft-tissue sarcoma.
A benign schwannoma is best treated by surgically removing it, though if the surgeon doesn't get the whole tumor it may grow back. I even found a report on a Brazilian case much like mine, in which the intruder lounged in its victim's belly while gnawing away at the lumbar spine.
Surgeons in that case braced the weakened vertebrae with titanium mesh and a couple of long screws. In the X-ray illustrations the hardware looked like a kit you could buy at Home Depot.
Dr. Singer ended his brief recorded message by saying that the pathology report was "good news." It certainly felt that way to us, although you know you've accepted a new normal when learning that you need five hours of highly invasive abdominal surgery to remove a grapefruit-size tumor and reconstruct your damaged spine feels like good news.
What made it look good to us was not only that a benign tumor would not spread cancer throughout my body but also that treatment generally doesn't seem to include radiation or chemotherapy. It seemed I might be able to have my surgery and perhaps go home a few weeks later. No need for costly and uncomfortable months in New York.
We headed downtown for my 11 a.m. appointment with Dr. Singer in a state of cautious optimism. It all seemed too good to be true.
And then, suddenly, it looked as if perhaps that's exactly what it was.
I had promised Dr. Gerald Rosen at NYU that in exchange for his courtesy in seeing me informally and evaluating my scans, I would let him know what my biopsy results were. I called him from a Starbucks as we paused to caffeinate before seeing Dr. Singer.
"Hold on. Hold on," Dr. Rosen said. "I think we may have what we call a sampling error. What kind of biopsy was it?"
When I told him the biopsy was a needle or "core" procedure, he said the amount of tissue removed from the tumor was too small for a reliable conclusion on its malignancy.
"That tumor is just too big and its invasion of the spine is too aggressive for it to be benign," he said. "I think we need to get you in for a PETscan and then biopsy any area that shows rapid metabolism."
We ditched our lattes and trudged to my appointment like the rainy day parade we had just turned into. Neither of us had much appetite for further weeks of scans, tests and conflicting opinions before actually starting any treatment.
Dr. Singer began badly when we asked him to comment on Dr. Rosen's concerns. He rolled his eyes slightly and suggested that Dr. Rosen's view should be discounted since it came from "a medical oncologist," meaning, I suppose, that he's neither a surgeon nor a pathologist.
Maybe Dr. Singer guessed from something in my expression that I didn't appreciate his intramural scorn any more than I had Dr. Rosen's on Tuesday. In any event, he quickly came up with some actual responsive arguments:
1. The pathologist says the tumor appears homogenous and it's highly unlikely that it contains any malignancy.
2. If there is a malignant segment, neither a PETscan nor additional biopsies would have any better chance of picking it up than the first one did.
3. A malignant nerve sheath tumor that large would almost certainly have revealed itself with chemical traces in my bloodstream which have not appeared.
4. Even if we knew the tumor contained malignancy, nerve sheath tumors respond poorly to efforts to shrink them with radiation or chemo before operating. Surgery might still be the best option.
We wanted to be persuaded, and we were.
So the plan is that Dr. Singer will remove my little suicide bomber on July 15, stopping where it enters my backbone. At his side will be Dr. Mark Bilsky, a neurosurgeon, whose job will be to scoop out the rest and repair my damaged vertebrae with cement.
We won't be borrowing our friends' apartment into which we had planned to move tomorrow, nor will we be renting our other friend's apartment next month for the summer and fall. Instead we'll fly gratefully back to New Mexico next week to regroup, then return by car for the surgery. A post-op week in hospital. Another in a hotel room before I can travel.
If things go smoothly, I could be convalescing in the comfort and safety of my own home by the first week of August.
Of course, many a good monster movie ends with a chilling scene that leaves you wondering if the beast really died.
In this story, that would be my surgeon carrying the loathsome contents of his operating room waste bin through the door to pathology for a cell-by-cell examination.
Tuesday, June 18, 2013
In her 15 years of selling Manhattan apartments to wealthy clients, Pam met a lot of smart, successful people. Some of them became good friends, and a few of those were doctors.
That's how I found myself on the phone a couple of nights ago with Glenn Agoliati, an oncologist who retired several years ago but still likes thinking about tough cancer cases. That would include mine, judging from his eager questions about what my doctors and radiology reports have told me so far.
"Could be a lymphoma," he said, echoing speculation we first heard in our second opinion, from Dr. Singer. "But it sounds to me like it might also be a plasmacytoma. That would be my first guess."
I had no idea what to make of that. In my anxiety and ignorance, I hear the bell tolling for me in any word that ends in "oma." Glenn hadn't even seen my scans, and I had no real idea how brightly his star had shone in the medical firmament. So I googled plasmacytoma to see if it looked like a death sentence, and when it didn't I put it out of my mind.
But it came back to me this morning as I sat in the small office of Dr. Gerald Rosen, professor and director of the medical oncology sarcoma program at NYU. I got his name from Elizabeth's cousin Jennifer, an NYU researcher herself.
I'm starting to understand why the author of Talking With Doctors kept trolling so obsessively for medical consultations on his brain tumor. The pace of cancer diagnosis is glacial, so you have a lot of time on your hands. Anything beats staring helplessly at the abyss.
I was only going to drop off my CD's today and ask Dr. Rosen's assistant for an appointment next week, but I got very lucky and caught the doctor himself with a few minutes to spare. He stuck my disc in his drive and began thinking out loud about what he was seeing as he scrolled through the images.
A sarcoma? Maybe, but soft tissue sarcomas don't generally attack bone. Could the tumor have started in the bone and pushed out? Probably not, judging from its size and the way it appears to be invading the vertebrae. Lymphoma? Highly plausible, because my spleen is enlarged, often a calling card of lymphoma.
"Any pain? No? See how it's right next to that nerve? What about numbness or swelling in your legs?"
He had me stand up and come around his desk so he could look at my ankles and give my abdomen a couple of speculative pokes. "That hurt? No?"
Like me, Dr. Rosen was now very interested in seeing the pathology report and slides from my biopsy. He had his assistant call a friend in the radiology office at Sloan-Kettering to try to spring them. When that didn't work, I tried Dr. Singer's office. No luck there either, not till Thursday when Singer discusses the results with us himself.
On one point, Dr. Rosen lined up squarely with Dr. Singer. Surgery right now would be nuts and in the end might not even be necessary at all, depending on what kind of tumor I'm hosting.
"I guess they're finally starting to learn something over there," he said with a wry little grin. I smiled uncomfortably at the insider humor, not wanting to think of my Sloan-Kettering team as a bunch of quick-knife guys who only just got house trained.
"A friend of ours is a retired oncologist," I said. "He told me he thought it could be a plasmacytoma."
Dr. Rosen went silent for several long moments.
"That's a very interesting idea," he finally said. "I hadn't thought of that, but it very well could be. We really need that pathology report."
Would plasmacytoma be good news? It might be, according to Dr. Rosen, since it's often associated with cancers that can sometimes be treated with relatively mild drugs.
Glenn's star was burning quite a bit brighter in my personal firmament as I walked out the door. We're planning dinner with him and his wife this weekend. I will beat him to the check.
Saturday, June 15, 2013
It's four days since they performed my biopsy, so I'm pretty sure that by now somebody somewhere knows exactly what I'm incubating in my lower reaches. But I still don't.
Friends wise in the ways of the Big C tell us that "this is one of the worst parts, the waiting."
I understand that this is a rhetorical statement. Waiting without symptoms is not really to be compared with the actual suffering and incapacity that almost certainly lie ahead.
Yesterday for fun I googled the question "What is chemotherapy like?" and got an overdose of oversharing that made me wince. Sorry I asked.
I did read enough of these harrowing first person accounts to learn that the treatments and individual reactions to them run a long gamut from surprisingly tolerable to Hell on Earth. But none will ever be the national pastime.
I am treating the parallel radiation question as information to be acquired only on a need-to-know basis. Why make the waiting any worse than it already is.
Still, it's impossible in our circumstances not to fret. The questions that preoccupy us most are where we're all going to live while I'm being treated, how long we'll need to be away from home, and how we'll manage it, especially with a toddler who's showing signs of having a hard time dealing with the disruption and stress we're all feeling.
We have long congratulated ourselves on our retirement planning, which called for leaving unaffordable New York City and dividing our time between two highly desirable homes out west, both owned free and clear.
The gods apparently found the irony of forcing us to add a third household right back in Gotham too rich to resist. This time with preschool, and whatever unforeseen medical expense that may fall outside both of my insurance plans.
Right now we're extending what was to have been a short family camp-out in our daughter's Brooklyn apartment. But it's not a sustainable arrangement for any of us.
So Pam has pulled out her old real estate broker's toolkit, and we're also tapping our network of friends and acquaintances who might have or know of space we could rent month to month. Some promising options are taking shape.
The problem is, evaluating them circles us right back to the question of how long we're going to be here at any one time, in which of Sloan-Kettering's many far-flung centers my treatments might be conducted, what my condition during and after is likely to be, whether I could be treated closer to home under protocols designed and initiated here. In other words, all the things I hope to start learning from the biopsy report.
I might get a call from Dr. Singer's office on Monday. But I won't actually see him until Thursday.
This is one of the worst parts, the waiting.
Monday, June 10, 2013
From where I lay on the gurney this morning, the room looked more like a television studio control center than an operating room. Industrial lighting fixtures hung overhead, and the walls were festooned with flat panel video screens.
I recognized the images on display, multiple copies of the cross-section from my CT scan that shows most clearly what I'm up against, one of them nearly life size.
"That is an ugly picture," I told the nurse who was covering me with a blanket that must have been in some kind of warmer it was so toasty.
"It sure is," she cheerfully agreed. "That's why we have to hurry up and make you better."
I was about to have a needle biopsy, a procedure not much more intrusive or unpleasant than a colonoscopy but with much greater expectations riding on it for us.
Laboratory analysis over the next few days will produce a report which we hope will positively identify my tumor and suggest the best strategy for dealing with it -- chemotherapy, radiation, surgery, or most likely some combination of two or all three.
But it might only deepen our confusion over the tight spot we're in.
I spoke last week by phone with Dr. Robert Wise, a Chicago psychiatrist introduced to me by a former AP colleague, who helps people with complicated ailments navigate the health care delivery system.
Wise suggested that I read "Talking With Doctors" by David Newman, a psychotherapist and artist who learned at age 44 that a tumor was occupying cavities and breaking through walls inside his skull.
Like me, Newman consulted doctors at both Sloan-Kettering and Beth Israel, as well as several other hospitals, in and out of New York, and like me he heard starkly different views of what his treatment should be.
Newman's medical situation seems to have been far more dire than mine, and it wasn't hard to see why the top shelf talent he was consulting would come to shifting and opposing conclusions about how to deal with it.
By the time of his successful surgery in Boston, which several of his New York doctors told him could not be accomplished and should not be attempted, he had tried the patience of more than a dozen surgeons and medical oncologists with his challenging questions.
It was a hard story for me to read. Newman is clearly many times smarter, more energetic, more analytical, and more driven than I am. Even if my life depends on it, as it well could, I don't believe I have the capacity or stamina for a two-month ascent into the thin air of exotic tumor research and treatment such as Newman undertook.
It is daunting to think that my survival chances could be significantly reduced because somebody somewhere can cure what ails me, but I lack the endurance to find that needle in the haystack as Newman did.
Nevertheless on Wise's advice, I did not tell Dr. Karpeh at Beth Israel that I was taking my business to Sloan-Kettering, only that we have decided to delay any surgery until we have a biopsy and then review our options in light of the results.
Wise also advises making it clear at Sloan-Kettering that we will make our choices on how and where I am treated in stages without committing to any single doctor or institution.
This may be hard, since my natural tendency would be to invest absolute trust in a single caregiver and then strive to become his or her most compliant and likable patient ever.
To avoid such internal conflict and to keep from forcing Pam into the impossible role of fighting advocate vis a vis both my medical providers and myself, I have my fingers crossed for biopsy results that point much less ambiguously toward a treatment protocol than Newman's diagnosis did.
Thursday, June 6, 2013
Everybody says you should always get a second opinion on important medical decisions. But the conventional wisdom peters out before it says anything about what to do when the opinions disagree.
A third opinion? A coin toss? A debate moderated by Jim Lehrer?
That's what we'd be wondering after our visit today with Dr. Samuel Singer at Sloan Kettering if we hadn't been convinced going in that Singer looks on paper like the rock star of soft tissue sarcomas and that Sloan Kettering is an unparalleled killing field for cancers of all kinds.
The two opinions we've now heard differ on every key point, right down to the identity of the invader.
Dr. Martin Karpeh, the surgeon we saw Monday, says all but categorically that it's a sarcoma, probably late stage and high grade, a tyrannosaurus rex of tumors.
Dr. Singer says it may well be, but there's no way to know for sure without a biopsy, and no way to determine treatment until we know. It could still be a lymphoma or some other tumor type. Even if it is a sarcoma, there are 50 varieties, each responsive to therapies that can differ widely.
Dr, Karpeh says the tumor must come out as soon as possible and can still be extracted in one piece without doing lasting harm.
Dr, Singer says that because part of the tumor is embedded in my backbone, it would be impossible to do that without unacceptable risk of breaking it open and spreading malignant fragments far and wide.
Dr. Karpeh says attempting to shrink the tumor before surgery would take time I don't have because the spinal invasion will soon be too close to the spinal cord and other major nerves and vessels to be safely removed. Furthermore, radiation or chemotherapy prior to surgery would probably be ineffective at the dosage levels the surrounding healthy organs could tolerate. Better to remove the tumor and irradiate whatever is left of it directly while I'm open.
Dr. Singer says the tumor is already beyond safe removal, there are ways to administer safe doses of chemo or radiation that can shrink it at least at the margins, and there are severe limits to intra-surgical radiation too.
Dr. Karpeh says the chunks of vertebrae that need to be surgically removed will still leave me a viable spine, supported by surrounding muscle and fat that will move into the gap.
Dr. Singer says that in the event the tumor can't be forced to retreat from the bone it has occupied, the damaged vertebrae will have to come out entirely and be replaced with man-made material.
Dr. Karpeh wants to operate within three weeks.
Dr. Singer told us the specifics of his approach will be determined by the biopsy I will have Monday. But he outlined a likely course of treatment involving chemo and/or radiation that will span many weeks before any surgery is attempted. In fact, under some circumstances he said it's even conceivable there might be no surgery at all.
Both these highly qualified doctors made their assessments with a lot less diagnostic information than they would have by the time of an actual operation. Each would also consult with other members of their surgical teams. It seems likely to me that their opinions would ultimately converge on at least some of these points.
But we need to commit to one or the other now. I plan to call Dr, Karpeh's office tomorrow and tell him I will be treated at Sloan Kettering.
Tuesday, June 4, 2013
I recognized Dr. Martin Karpeh from his online profile picture as soon as I spotted him. We were both entering the lobby of the Beth-Israel Medical Center on Union Square Park yesterday morning.
His experience as an oncology surgeon was as impressive as you'd expect for the surgical chairman of a big New York hospital. He sees a lot of soft tissue sarcomas.
But for some reason what amazed me about his profile was that it said he spoke not one but two foreign languages. I introduced myself and told him I was a new patient on the way to his office.
"Wow," I said as we got on the elevator together. "Where did you learn your Chinese?"
He looked confused. "I don't speak Chinese," he said.
"Oh," I said, wondering if I should doubt his cancer fighting credentials too. "Your profile said you speak Chinese. And Russian."
"Well, I know enough to ask a patient if he's in pain and where it hurts," he said. "But that's about it."
I used to be pretty good at elevator conversations, but this one was heading for a dead end. However, I saved it with a flourish as the doors opened on the 4th floor.
"We should be okay," I said. "My English is very good."
I can't say I got the laugh I was hoping for, but he did give me a pleasant look of tolerant amusement as he escaped into his office and I picked up my new patient forms at the reception desk.
We probably won't be entirely pleased when the brave new world arrives in which we all have our continuously updated medical histories on chips embedded in our necks. But honestly, how many times am I going to have to write that I have a mild allergy to aspirin and underwent rotator cuff surgery in 2008?
Never mind. Less than an hour later with my forms completed, my vitals measured, and my general condition appraised by a smart nurse practitioner, Dr. Karpeh came into the examining room and gave the best presentation I ever heard on a sensitive and complex subject.
In a nutshell, my sarcoma isn't just squatting in unoccupied real estate. It's invading one of the vertebrae in my lower back and starting in on a second. About a third of the bone in that first vertebra is now fully colonized, no longer mine. The bad chunk needs to come out with the tumor.
There was some good news. The sarcoma still has some distance to go before it reaches my spinal cord and the nerves that control my legs and other crucial lower body functions that need not be named at this time but you know what they are.
But there's not a lot of time to wait. Once an MRI confirms his initial appraisal of the state of play, Dr. Karpeh proposed that he organize a surgical team consisting of himself, a radiation specialist and possibly a neurosurgeon. Within three weeks they would cut me open, remove as much of the tumor as possible, and nuke the rest before sewing me back up.
Care would need to be taken during this hair-raising procedure not to harm the aforementioned nerve trunks or the major arteries and veins that also pass through the war zone. Otherwise, loss of function and potentially lethal blood clots could result.
The doctor laid it all out like a man who has seen this elephant before and dealt with it, which he is and has. But although he projected optimism, he didn't give me odds on my surviving the whole thing intact without a recurrence, and I think I know why.
Soft tissue sarcomas are relatively rare, only 6,000 or so new cases diagnosed each year, less than 2 percent of all cancers. Sarcomas of my type are a small subset of that. So there isn't a statistically significant cohort of people in my situation on which a reliable handicap could be based.
From what I've read, an educated guess at the odds might be about the same as Russian roulette with a six shooter, not so bad but who would play if they didn't have to?
We're hoping to get a second opinion by week's end from one of the sarcoma specialists at Sloan Kettering. Not that we imagine it will paint a rosier picture. But the strategy might seem more likely to succeed, and everybody's telling us there's no better place than Sloan Kettering for this kind of fight.
Saturday, June 1, 2013
I picture it in my mind as looking something like an iguana, with its tail wrapped around my spine and the top of its head pressing against the inside of my lower abdomen.
The radiologist who took its picture on Thursday called it a sarcoma and said it grew from the muscles of my back. If that's already too much information, read no further.
I first noticed it months ago as a hard area about the size of an iPhone, not too far from the place where I had a minor hernia repair last year, and figured it was scar tissue forming around the patched place.
But I went ahead and made an appointment with the surgeon for last week, because we were going to be in New York anyway for family stuff. I expected a quick exam and blessed assurance.
"So where is this thing? I can't feel it," said my doc.
"It's here," I said, pointing to the spot. "I can only feel it when I'm on my back." I lay down on the examining table.
"That's not where I operated," he told me. "The hernia was lower."
He put his hand over the place I was indicating.
"Oh," he said. "I don't like that."
He felt around some more and said it again. "I don't like that at all."
"If you don't like it, I don't like it either," I replied.
After trying half-heartedly to come up with harmless reasons for finding an iguana in my belly, he told me that rather than speculate it would be best to get a CAT scan right away.
I went in the next morning, and a few hours later he called with the very bad news I was expecting but still hoping not to hear. He gave me the name of an oncology surgeon at Beth-Israel where he had made me an appointment for Monday morning and wished me luck.
As I write this on Saturday, that's all I know about my condition. I expect to learn more when I take my CAT scan to the new surgeon Monday. Through friends who've been through this we've identified other possibilities at Sloan-Kettering and NYU and we'll consult them too.
But I've now read enough about what they call soft-tissue sarcomas to know that I am in for the worst summer of my life. Feel free to join me.