Early Cancellation Cancelled

Good news! This Tumoriffic series will not be cancelled for the foreseeable future! Bad news! At least, provisionally.

The pathologists Droopy and Pokey, after a firm talk from Dr. Skully, put out their doobies, washed their hands and got to work.* They have pronounced my cauliflower "suspicious for invasive squamous cell carcinoma." (Gee, guys, if you can't say something nice, don't say anything at all!)** This is a lot firmer than the Wicked Famous Cancer Hospital pathologist's "lots of grody stuff" reading.

So, what's on the menu? I anticipate a return visit to Famous Squamous! And, just maybe, a visit to Dr. Zap, the radiation oncologist who burned out my skull last time! And, at some point within the next few weeks, we will return to the Big Fruit and meet a shiny new oncologist (alias TBA)! Maybe they'll talk me into more surgery, and I'll get to see Dr. Skully again. I really don't want surgery, but she was a very pleasant person, so there's that.

And, if the surgery turns up bad news? No mere squeamish cell farcinoma?*** What does that mean for you? More untold Tumoriffic adventures! More hair-raising (and, perhaps, hair-losing) escapades! More side effects! Maybe some exotic infections! Chemo like you've never seen! It's gonna be YUGE!****

Be well,

T

* I really am just joking when I make fun of pathologists. They're highly valuable professionals. I admire them! Heck, some of my best friends are pathologists!

** Yeah, yeah, I know. This is the opposite of what I was saying early early this morning, but, hey, a guy gets to be inconsistent sometimes.

*** Geeze, Blogspot! Not only have you still not figured out that "squeamish" is a real word, you haven't learned "farcinoma." Yes, I invented it just a few days ago, but it's trendy!

**** Really, Blogspot? You recognize "yuge," but you don't recognize "squeamish?"

Two living muppets to lighten the darkening mood

Stop Teasing Me!

I am really tired of this! Will someone please tell me whether I have an inoperable tumor that will probably kill me in 2 years? I mean really! It has been 2 months since my surgery! Actually, I don't think anyone actually thinks that what's going on anymore. I still don't feel sick at all, which is a bit odd if I have had a highly aggressive tumor eating its way towards my brain since July.

Anyway, I really would like some answers. If you remember, we were led to expect that the pathologists at F'in' Famous Cancer Hospital would have a clear ID on my possible tumor a week and a half ago. At the last minute, they let on that they were kidding, and they needed another week to figure it out.

Finally, 3 days ago, Dr. Agent Skully's nurse called. Skully had had enough. She stomped down to the Pathology Department to get some answers. She burst in on Drs. Droopy and Pokey. They were smoking a joint and getting hairy hands. She was outraged. "THIS IS THE LAST TIME!" she said. "NO MORE WARNINGS!" *

Chastened, the pathology slackers got to work. The very next day, K was contacted by the administrative assistant in Dr. Skully's office. She finally gave us the answer. . .






PSYCHE! **






It turns out that Dr. Skully's administrative assistant is actually a Magic 8-Ball. She told K that next week, the brilliant doctors at F'in' Famous will put their heads together and come up with a plan. So K asked, "does that mean that the pathology is finally back? Does it mean that Pokey and Droopy have finally taken their thumbs out of their ears and come up with a diagnosis?" The Magic 8-Ball said, in so many words, "reply hazy. Try again later."

My best guess is that they don't have a clear diagnosis. They're going to want to go in and get more tissue. They will have to persuade me that this will somehow make my life better. After all, if the options are either:

    1. I have an inoperable tumor for which the non-lifesaving treatment is only worth starting if I become symptomatic, or. . .

    2. I have my skull is turning to cinder, which is, somehow, not a big deal.


If those are the only the options, why should I submit to yet another exceptionally unpleasant nosepicking? If it's cinders, it's cinders. If it's a squamous cell carcinoma, it will declare itself soon enough when I start hurting. Knowing one way or the other would not help me live any longer, so I would see no point in another surgery. After all, I have a family to enjoy, and I hate to stand up all the patients who have appointments with me in the near future.

But my bet is that there is a third option. Perhaps they are thinking that it may be cancer, but something not so aggressive. Let's say, a squeamish cell farcinoma.***  If there is something useful to be gained by picking my nose, then, I will tell them:

You want a piece of me? Well go ahead!

Be well,

Tom





* I am fairly sure that isn't really what happened. I'm just feeling a bit harsh right now. I am sure that the pathologists in two of the world's leading hospitals are first-class doctors. They have taken so long to get answers because my tissue is weird. A clivus specimen from a guy who has basically spent months with his head in a microwave (twice!) is just not something you see every day.

** Does anybody say that anymore? Or have I completely descended into old fartitude? Remind me to ask B.

*** Blogspot spell-checker has underlined squeamish. Really, Blogspot? I understand not recognizing farcinoma. I just made that one up, but you don't know that squeamish is a word?

A picture that may or may not have anything to do with this post:

You want a piece of me?!?

Are We There Yet???

A little snack while we wait for the big meal:

Today, K called Agent Skully's nurse to chat and got a little surprise. Dr. Skully had hoped that the pathologists at F'in' Famous Cancer Cancer Hospital would have identified my little surgical scraps by now. Then she could meet with other experts on Monday and give us a plan by Tuesday. However, the little bits of my tumor on the slides that we so lovingly carried to my appointment went to the inboxes of Dr. Pokey and Dr. Droopy in the Pathology Department.* This means that, until late next week or even the following week, there may be no ID on that crud they dug out of my face in mid-August.

I still don't know whether I am facing (or the back of my face is facing) a terrifying, potentially deadly tumor eating its happy way towards my brain, whether my skull is just turning to powder (which is, surprisingly, not such a big deal), or whether I need another operation to decide (which would be a real laugh riot). I realize that suspense makes for a good story, but I was hoping for a short story, not a novel.

Thus, for the next week or so, every time I get a little headache, or a tickle in the back of my throat, I will get really paranoid that something like Miss Muffet's spider is wiggling around inside my head. And it's fall allergy season.

Be well,

Tom



* Perhaps I am being a bit harsh here. Drs. Pokey and Droopy may need to use some extra special herbs and spices on my li'l' bits, but the ones from August are already too processed. Without these preparations to bring out the flavor, maybe it's hard to tell the difference between blackened Cajun bone scraps and a carcinoma souffle. Dr. Agent Skully may need to go in and nibble off another piece. Yum.

This picture does have something to do with this post:

Warning: Prostate Meds and Cataract Surgery Do Not Mix

Enough about me (at least until next week or if I pop another tumor before then).

If you don't want to read the details, here's the gist: if you or you family member, or your patient is on one of several common prostate medications and has cataracts, think hard before considering corrective surgery and make sure your ophthalmologist knows about the medications. It could mean the difference between sight and blindness.

Today, one of my patients asked me to share this story.

An eye doctor diagnosed Mr. X with cataracts. Mr. X's vision was OK. The cataracts were not really bothering him. However, he had surgery to get the cataracts removed.

Mr. X was on prostate medication. Specifically, he was on alfuzosin (Uroxatral). This medication keeps the prostate from getting too swollen and can be very useful. However, it can also cause Floppy Iris Syndrome. (And no, even though it sounds like something I would do, I did not make that name up.)

Floppy Iris Syndrome is a loss of tone in the muscles of the iris. Patients with this syndrome can have sight-threatening complications during cataract surgery. Floppy Iris Syndrome appears to be irreversible, so patients are vulnerable during cataract surgery even decades after the last pill they took.

As many as 15% of patients on alfuzosin who have cataract surgery may have complications related to Floppy Iris Syndrome (although not always severe). With a related medication, tamsulosin (Flomax), it may happen as much as 90% of the time. Mr. X was on alfuzosin, and he had the syndrome. His surgery did not go well. He may lose his sight.

With proper precautions, an experienced surgeon may be able to reduce that risk, even with tamsulosin, to 0.6% (6 in a thousand).

So, the take-home is that some prostate medications and cataract surgery are a dangerous combination that should be avoided except with serious sight-impairment. Anyone who needs cataract surgery and is on these meds needs a first-rate surgeon who knows they are on the meds and will take proper precautions.

Be well,

Tom

PS: A med school classmate provided useful corrections to this post after it was published. Many thanks.


http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2814568/

The Cauliflower Show Goes on the Road

I got to see two doctors in two days this time! It's kind of like a surf'n'turf dinner, or, maybe, a pasta dish and an entree.

1. Appetizer

Good evening tumor fans! K and I are on the train, returning from a worldwind trip to the Big Fruit and F'in' Famous Cancer Hospital. Brings me back to old times and my last big tumor. Oh, sweet memory!

As faithful readers will know, on Friday, September 9, Dr. Famous Squamous walked us back from sheer terror to mere concern, telling us that the cauliflower in my head is probably not the scary papillary squamous cell carcinoma, but the creepy-sounding but less dangerous osteoradionecrosis (known as ORN to cool people, or, to me, as a squeamish cell tumor). However, the pathologists at Wicked Famous Cancer Hospital continue to be coy, refusing to be pinned down on whether this is cancer or just another manifestation of the little Fukashima inside my head.

After work on the 13th, we hopped a train down south. As always, we stayed in the home of our generous friends, R and H, who live conveniently close to F'in' Famous.

2. Pasta Course

On the 14th, K and I hiked downtown for a reunion with the warm but suave Dr. The Fixer. Dr. Fixer is the reconstructive surgeon who expertly reassembled the right side of my face in 2005 only to watch it melt like a Hershey bar in the sun under the proton beam of Dr. Zap. That still irks him. He also had to repair me twice more in 2006 and 2007 when my cheek fell open.* Good times! Anyway, I am the patient that refuses to go away.

On the 14th, our question to him was simple. If the cauliflower turns out to be squamous unstead of squeamish, and if we can sucker some poor surgeon into taking the whole thing out, can he put me back together? Unfortunately, the answer is no. The cauliflower is in a really bad place, and you just can't get there from here.

The good news is that Dr. Fixer has seen a lot of ORN, and the MRI and CT of my clivus look like ORN to him. The other bad news is that I have a whole lot of ORN, not just in my clivus, but in my sphenoid bone, particularly on the right. The sphenoid comprises two big wings of bone on either side of the clivus.**

After that, we took the subway to Greenwich Village to lunch and loiter with my dear friend J, another of the ever sympathetic and helpful Tumoriffic stalwarts. On the subway, however, we overshot the meeting place. K was uncharacteristically grumpy about it since she was very hangry. Don't make her hangry. You wouldn't like her when she's hangry.

Later, K and I hiked across Central Park and cabbed uptown to have dinner with my cousin and cousin-in-law A and D at a wonderful Italian restaurant. I don't remember the name, but it was something like "The Meningococco."

Afterwards, we walked to their apartment to say "hi" to their kids, J and P, and their dog, Charlie. Charlie was so happy to see us, he peed on the floor. He never does that anymore, so we were flattered.

3. The Entree

Finally, early this afternoon, we hiked back to the main campus of F'in' Famous to meet the eminent skull-base neurosurgeon, Dr. Agent Skully. She was soft-spoken, but impressive, and her eyes bugged out only a little when we discussed my history.  She looked at my films, and I gave her my delectable pathology slides, which she promptly ate. (Just kidding.)

Not being an old friend like Dr. Fixer, and, thinking of the recent premature diagnosis, she was a little reserved, not committing to what she thought was going on with the cauliflower. She was logical and methodical. Nothing can be decided until Pathology has spoken. F'in' Famous is about 10 times larger than Wicked, so they have seen a lot more weirdos like me. If anyone can make a diagnosis with these slides, they can. It will take them 7-10 days. After that, Dr. Skully will present my case to her colleagues in a weekly conference known as Tumor Board. ***

If even the F'in' pathologists cannot come up with a firm diagnosis, Dr. Skully wants to go in through my nostrils and nibble off a bit more crud so they can subject it to more tests in the pathology lab. If, on the other hand, the crud turns out to be squamous cell carcinoma after all, she has not excluded the possibility of doing an open procedure like I fantasized. She would have to discuss it with another surgeon from ENT, and she would still have to pursuade Dr. Fixer that it was somehow possible to put me back together, but I can dream.

Meanwhile, I think I will need to be on antibiotics for a good long time. We'll discuss it with Dr. Bug, but that's my guess. Maybe I can breed my very own uber-antibiotic-resistant bacteria on my own clivus.

4. Dessert

Once again, I had fun with the pre-visit questionaire. Mostly in my head, not on paper. I don't want them to call a psych consult on me.

What is the most important thing our staff can do for you today?  Keep me from dying.

Are you unable to care for yourself and have no one to help you?  Only when my wife goes on a trip.

Where was your last fall?  I spent it mostly near home. I tend to travel more during the other seasons.

Do you use oxygen at home?  Of course I do! Where the smell do you think I live?!? Neptune?!?

Would you like to talk to someone about talking to your minor children aboout cancer?  I find that offensive. I consider no child minor! Children are major!

Who do you live with?  You mean WITH WHOM DO I LIVE. This is supposed to be a renowned cancer center! Get your grammar right, you losers!

5. Digestif

The next menu should be out in about 10 days when we have heard from Dr. Skully. 

By the way, if this story were fictional, I would consider the author to be pretty lousy. I really doubt that I have squamous cell carcinoma. We're just making absolutely sure. 

If this were well-written, the conversation with Dr. Squamous would take place far later so that I could spend more of the story in terrible fear. On the other hand, what if George R. R. Martin wrote it? Just as we thought things were going to resolve for the better, Ramsay Squamous would suddenly appear, and every knows what happens when Ramsay Squamous shows up!

Stay away from my story, George R. R. Martin. You have better things to do. Like finishing the Song of Ice and Fire series already. Seriously, man, get to it!

Be well, 

Tom

* If anyone's counting, he actually patched my up twice in 2005, once, after Dr. The Coach and Dr. Mister Rogers scraped out my osteosarcoma, and, again, two days later along with Dr. Rogers after my meninges (brain lining) sprung a leak.

** The sphenoid houses the sphenoid sinuses.  (If you guessed maxillary sinuses, you're a dummy.) The shape of these determines different degrees of resonance in singing voices such as, for instance, Luciano Pavoratti and Bob Dylan. As time passes I will sound more and more like Bob.

*** I have been the star of many tumor boards in many hospitals. In those venues, I'm like a medical version of Hamilton!

Photo with No Apparent Relationship to this Post:

Whipsaw!

I hardly slept last night. K and I had read up on squamous cell carcinoma (SCC), and it's just not appetizing literature. Today was the day I was to meet with oncologist Dr. Famous Squamous and see what was on the menu.

At 5:45, after about 2 hours of sleep, I got up with K, and we drove to Wicked Famous Cancer Hospital. We walked in, and the x-ray tech started an IV in my arm and injected me with that radioactive sugar I was talking about last night. Then, took a nap for maybe an hour. When I woke, my tumor had had time to suck up this delicious stuff, and I lay down for the scan. I don't remember that part, because I fell asleep again.

Then, K and I went home, and I slept. Shortly after noon, we drove back to Wicked Famous. In the car, I went over the notes I had taken on the treatment of SCC, guessing on what Dr. Squamous would probably have in store for me and what questions or objections I might have.

At the hospital, we were quickly put in an exam room. There, we sat for a almost an hour. (I'm not complaining. That would make me a hypocrite.) I actually got some work done, but, I mostly worried about what the next few months or years were going to bring. Those were not happy thoughts. Meanwhile, Dr. Otto La Ringologo, who had given me that distasteful diagnosis last week, kept poking his head in nervously, saying, "hi," and looking around.

Then, Dr. Squamous' very pleasant oncology fellow came in to take a history and examine me. I always enjoy sharing my medical history with oncology people for the first time. It makes their eyes bug out.

At long last, the eminent Dr. Squamous came in. I could barely restrain myself from peppering him with questions as we shook hands. I hadn't seen my him since my last cancer in 2005. He looked a little older.

His head was a slightly bowed, and he seemed almost rueful. He had a little smile on his face. Quietly, with one eyebrow raised, he spoke. "Before we go too far into treatment questions, we need to clarify some things. Did you see the pathology report?" I had. I have inside access. "Did you notice that there was a lot of description in it, but no definitive statement of diagnosis?"

I had noticed that. There were a lot of scary words like "dysplastic" and "invasive," but nowhere did it actually say, "squamous cell carcinoma."

He shook his head a little. "I'm not sure it is squamous cell carcinoma."

K's and my jaws dropped, and, suddenly, the Earth shifted.

"There are other things that could look like this, and when I talked to the pathologist, he refused to be pinned down. It could be squamous cell carcinoma, but it could be a fungal infection, or it could be osteoradionecrosis.* It's also odd that you are having no symptoms. I would expect you to be in a lot of pain with SCC at this stage. And, I looked at the films from the last few years, and there has been the same enhancement in the same place all this time. This year, it's a little bigger, but, if it's SCC, it's moving a lot slower than SCC usually does."

He told us that the PET scan showed enhancement only in the nasopharynx. That means, if this is malignant, there is no invasion of local lymph nodes, and there are no metastasis. That was kind of nice to hear, but I was barely listening by then.

The rest of the visit seemed like one long exhalation of relief as we planned next steps. I will head down to F'in Famous Cancer Hospital in NYC (a.k.a. The Big Fruit) and show my pathology slides to their experts. I will meet with a surgeon (yet to be pseudonymmed) down there to discuss whether she can do a procedure to get more tissue if the pathologists need it for diagnosis or if she is willing to go in and scoop up the dead tissue and let The Fixer patch it up with another piece of my thigh or something. That might prevent me from getting any more of those cheesy infections or from rupturing my brain lining when I laugh too hard.

Of course, we did go over the worst case scenario. If it is SCC, the only proven chance at a cure would be a big surgery and more radiation, neither of which are necessarily possible with me. Otherwise, there are some very harsh old chemo agents and some newer meds that are probably not worth trying unless I am in a lot of pain (which I definitely am not!) or having other symptoms. There are some clinical trials for newer medicines, but that would be a 'hail Mary' shot. That's what I have been sweating about for days, but, suddenly, it seems a bit less immediate now.

So, this cauliflower may yet turn sour, but it's very possible that it's only burnt. This adventure is not over, but it's starting to look like it will have one of those dumb plot twists where the protagonist wakes up only to find they dreamed the whole thing. Thank you all for coming along with me this far. Even if there is no SCC, I may end up having a big, nasty surgery in The Big Fruit, but everything just got a quite bit less terrifying.

Be well,

Tom


P.S. You would think I would have learned by now. This is the third time I have been whipsawed by Wicked Famous. The first time was in 2005, when, from the radiology, they thought my small, contained cancer from 2004 had returned and was going to kill me. It just turned out to be a silly old osteosarcoma that got all better after a giant surgery, tons of radiation, and a year of chemo. The second time was 2012, when they thought they saw a big tumor on my clivus, and it was just an infection that only required a month-and-a-half of IV antibiotics. This time, though, La Ringologo told me the pathology showed SCC. It may still be that, but wow. "Fool me once, shame on you; fool me twice, shame on me;" fool me three times, and I'm going to New York.



* a.k.a. supercalifragilisticradionecrosis! Osteoradionecrosis is death of bone due to radiation treatments. The entire irradiated area does not all die at once. More and more of the tissue in the radiation field can progressively die off.

How I Feel Right Now:

Another Big Day Tomorrow

You can skip to the main course if you just want to get the update, but I do hope you will have the salad and appetizer first.


1. Salad

First of all, before I get to the meat of recent events, I'd like to complain. Over the last few months, I have gained weight! What's with that? People with cancer are supposed to get skinny. That's the silver lining. Instead, I'm just getting one big fat cloud.


2. Appetizer

Second of all, before I get to the meat of recent events, I was prompted to make a very grumpy comment on Facebook yesterday at 1:30 in the morning. I'm not naturally a grumpy person. Quite the opposite, but I was having middle-of-the-night catastrophic ruminations (Why would I do that?), and I made the mistake of looking at Facebook. One should never do that after bedtime, but certainly never when one is feeling, ahem, a bit out of sorts.

I was in a closed Facebook group about science and health. People had been posting all sorts of nonsensical quackery on it. I had routinely posted skeptical comments, but I hadn't gotten around to taking myself out. Then came the last straw. Some genius posted something about how evil oncologists have been hiding the fact that a spoon of baking soda a day can cure cancer because cancer is caused by acid pH in the body.

This is complete hogwash on its face. Your body is quite good at maintaining a precise pH of 7.41 using the lungs and kidneys. I guarantee you that if you ingest a spoonful of baking soda, the contents of your stomach will become more alkaline, but your blood pH will not budge appreciably. If you somehow succeed in making your blood alkaline to the extent that your body cannot compensate, you will die. On the plus side, your cancer will die too.

So, I told said genius that he was full of dukey (in a more polite way). He responded that, since I am a doctor, I must know the baking soda cure and will use it myself. I was enraged. I don't get angry, generally, but I'm feeling a bit delicate right now. I didn't engage further. I did what I should have done months ago and left the group. I then made a grumpy comment about such things on my regular feed.

Anyway, the point is, unless you are well-informed about real cancer treatment, it is not wise or kind to boldly proclaim poorly researched opinions or to give medical advice to cancer patients. We are passengers in a plummeting plane. We're looking for parachutes. Don't go around telling us about the flying carpet you saw rolled up in the bin over row 7. And it is particularly insulting to me since I am a doctor. You are implying that I am a fool or a conspirator. As a doctor and multiple cancer survivor, I'm really good at finding parachutes (if I may say so myself). If there's one on board this thing, I'll find it.

Meanwhile, knowingly or not, you are steering less-informed patients towards quacks who will remove their money but leave their tumors. Then, these poor passengers may fatally delay the search for a parachute, or. in the absence of one, waste time. That time would be better spent calling home (or watching the in-flight movie).

OK. Enough of the tirade. On to the main course. It's a big one.


3. Entree

K and I (particularly K) have been buzzing like freaked out bees reading scientific articles and calling doctors in Boston and New York. First of all, we succeeded in getting my PET scan* moved from Sept. 12 to Sept. 8 (tomorrow). Then, we got them to move my appointment with renowned oncologist Dr. Famous Squamous** from September 13 to tomorrow afternoon. That way, I will not have to stew all weekend wondering about my prognosis and next steps.

Meanwhile, we have contacted members of my 2005 Dream Team in New York, neurosurgeon Mister Rogers, otolaryngologist The Coach, and reconstructive surgeon The Fixer. Unfortunately, they have broken up. The Coach as moved to Lummox Hill Hospital while the others remain at F'in Famous Cancer Hospital. I have an appointment with The Coach on September 28, and Mister Rogers got me an appointment with a hyperspecialty surgeon at his hospital on September 15.

Tumoriffic fans with good memories will note that Dr. Otto La Ringologo here in Boston did not think my tumor was operable without a high risk of disastrous complications. He may well be right, but K and I are stubborn. We are going to consult a few other luminaries before we give up on that option. It is just possible that surgery could, maybe, if I'm ridiculously lucky, rid me of this unappetizing cruciferous morsel.


4. Dessert

Meanwhile, in solidarity with my plight, Katie the Cat, hearing the word "cauliflower," vomited on the bedroom floor. Ginny the Dog then expressed her solidarity by gobbling it up.


Be well, my friends and family. Another exciting meal of mixed metaphors awaits tomorrow night.




* Despite the name, a PET scan does not involve being scrutinized by domesticated animals. The principle of the thing is that tumors consume sugar faster than nearly anything else in the body. So, I'm not eating anything before the PET scan tomorrow. That way, my whole body will be starved for sugar, especially my tumor. I will then have a delicious breakfast drink of radioactive sugar. My hungry little tumor will greedily suck it all up. I will then be rolled into a machine that will be able to detect the radioactive sugar, showing my doctors the shape of the tumor and whether it has spread to other parts of my body or my brain. If I'm lucky, this little last bit of radiation on top of the thorough cooking I have already have will finally allow me to tap into the hidden strength that all humans have. Then, don't make me angry.

** Dr. Famous Squamous is one of the leading authorities on head and neck squamous cell carcinomas like mine. It is rumored that they were named after him.

Me, in a grumpy mood.