Ray Guns

So the radiation starts in a week.

I realized today - this is just one small example of how dense I am - that when I tell people I'm going in for six weeks of radiation, they may think this is really scary news. Hmm.. they can't find the primary cancer; he's going in for radiation; he looks really different...

But when I talk about the radiation, it's just another landscape, after another turn in the road. I'm not going anywhere except forward, usually in my aging blue Jetta. The handcart (I use it to drag the amp and piano around) has a flat tire and it's lashed to the bike rack. It's not scary. It's me.

Minus the beard, at least for now.



(Who is this guy? I have no idea.)

Occult Primary

(photo: Carlyle Lake, Illinois)


If it's all gone to slo-mo lately, it's partly because I've seen fit to involve
two bureaucra-cies, Barnes and MD Anderson, and partly because it seems to be the nature of the process. Like war - long periods of boredom punctuated by brief episodes of dangerous activity.

Now, finally, I've given marching orders and we are ready to take the hill.

The debate in the final stages boiled down to two issues: the larger one, the level of radiation; and a smaller one, whether to yank some wisdom teeth before the radiation commences.

I had three options on the radiation menu: (a) none; (b) left-side-of-the-neck only; (c) or full microwave, both sides, top and bottom. No one but me likes (a) any more. Barnes is for (b). MD Anderson is for (c). I'm going with (b), the neck-only approach, even though (a) continues to be my sentimental favorite.

A couple of ideas drive my thinking, as they do in lots of contexts: Avoid the Irrevocable, and its sibling, Don't Foreclose the Future.

Mr. Irrevocable has already been in the room. The surgery involved removing lymph nodes and tissue from the left side of my neck that ain't going to grow back. But that was where I had fetched up with cancer, for god's sake, so taking it out irrevocably is hard to fault. Duh.

Next, however, we are dealing with what Secretary Rumsfeld used to call Known Unknowns. Pesky little cancers that might still be left in the area where the surgery took place. And the star of the movie, the unknown, unfound cancer that started the whole thing: the Occult Primary.*

The big dog they want to call in is radiation, a technique that seems to occupy a huge place in the world of cancer treatment. (Because it's been successful, I suppose.) There is, after all, the nice symmetry of fighting invisible cancers with invisible rays. But there is also the blunderbuss/flock of geese problem I mentioned before, and radiation has an irrevocability problem: it can cause permanent unhelpful change.

The handiest example is this tooth business. Evidently radiation can seriously impair your healing ability. So if after radiation you have to have your wisdom teeth, say, removed, the bone may not heal and it can lead to something called osteoradionecrosis of the jaw. This you do not want. Treatment can involve hyperbaric chambers.

So that's the small issue, to yank two wisdom teeth now, or not. Not because the wisdom teeth are bad, but because they might be some day, and my ability to survive the future yanking will be compromised by the radiation treatments. Sounds like: sure, yank 'em, who cares, should've done it years ago anyway. But it means two more weeks before radiation starts, and for that reason the Barnes docs - surgeon, radiation guy, and even a dentist - said to skip it. I flipped around over the weekend and indeed the first draft of this post was pro-yank. But for many reasons, the biggest of which is I just want to get on with my effing life, I'm going to take their advice and leave the teeth in the head.

With this, I have now have the roadmap. Tomorrow they make a mask. (It looks pretty cool, like something from CGI - a webby thing that holds my head in place while they zap.) Then they take a ridiculously long time to figure out the geometry, like two weeks. Then some 30 sessions, five days a week. Looks like I'll be done after the equinox but well before the first frost.

There's a long list of nasty side effects that both hospitals have spelled out in almost loving detail. Rather than post them I'll report them when and if they happen. Bottom line is that some 94-year-old grannies sail through, and some buff 25-year-olds get whiney. Unpredictable.

How the plan matches up against my rules: as to Avoiding the Irrevocable, the radiation is going to do some stuff but not as much as the full boat. As to Not Foreclosing the Future, one of the most telling things my Barnes surgeon said that if you do the full radiation boat, I won't be able to see what's going on.

I do want him to see. (It's why no-radiation is still my favorite, but I'd have to have at least one doc on my side, and I don't.) As you navigate these waters you see so many examples of how the technology is racing ahead. Doing things that are irrevocable could foreclose treatment that they don't have now, but may have in the future. I'm lucky enough to have a choice that gives me some daylight, some running room. So up and over the hill we go.



* You cannot imagine how many times I have rolled this stone over. The film version: Charlie Chan and the Occult Primary. The country & western version: I Thought I was Primary, But Now She Says I'm Just Occult. And sci-fi: Invasion of the Occult.)

Wheels A-Spinning

The Houston doc concluded the last meeting with a comment: you're starting to spin your wheels. Come up with a plan and get on with it.

(Photo: Shiloh battlefield)

Easily enough said, but there is a process involved here, and his elements of the process aren't finished. Bureaucracy, moving records around, back burnering... all contribute to the pace, which seems somewhere between slow and glacial. But no one wants to come up with a plan and get on with it more than I do.

It does appear that I'm in the final act, meeting with the radiation oncologist at Barnes on Wednesday. It could be an interesting conversation. His counterpart at MD Anderson, when advised of the radiation approach suggested by my surgeon at Barnes, said he'd never heard of it. For MD Anderson, either it's nothing (rarely, and not in my case) or it's ear to ear. The neck-only, limited treatment coming from my surgeon in St. Louis has not made it to the Gulf. I do not yet know the details, and when I talk to the radiation guy at Barnes I will find out if I'm breaking new ground.

I'm trying to understand the science, and recently asked Barnes if they thought an article by one of their pathologists was relevant. It's here:
http://www.springerlink.com/content/a6643g41362nvt1q/fulltext.pdf. They haven't told me, and maybe they never will. If I had a client who was citing me legal cases, it would piss me off.

Reading the article and similar academic stuff is work, a little like translating from the French - I do it with a dictionary. Reading Rimbaud was better.

New Doc

The first meeting is over, and he needs more data. Not a surprise, this was really an introduction, him to me and me to him.

He did say that he was likely to recommend full-blown radiation, both sides. But they want to re-do the CAT scan, have me see their radiation oncologist, etc. All on a fairly fast track because the radiation, whatever its level, should commence within six weeks after surgery, so I have about two weeks to go.

MD Anderson

I'm in Houston, in the exam room which is the port of call when you see a doc in one of these places. Trailed by younger docs, tea boys, etc.

MD Anderson is big-boned and Texan, just like you'd expect.

But I've noticed that with all three hospitals I have washed up on in this little odyssey, the decorating scheme is essentially the same. The Big Bucks are at the entrance, near the gift shops and non-denominational chapels and reception desks that dwarf the people behind them. Here in Houston they seem to specialize in aquaria with tropical* fish. Texas-sized.

Then, as you progress from waiting room to waiting room and into the specialty areas, things grow less and less ornamental, more and more functional, and way less decorated, until finally you wind up in an exam room with a dying plant in the corner. Then off to a lab with scuffed floors and no windows.

Maybe they have it backwards. Perhaps we should enter into a modest, businesslike place, then at each stage things become more opulent until finally the doc is in kind of a throne room, with attendants fanning and musicians in the corner.

Just a thought.

Still waiting.


* I was thrilled to realize recently that "tropical" means something that lies between the Tropic of Cancer (guess how I got there) and the Tropic of Capricorn. And to learn that the sun signs, Cancer and Capricorn, are obsolete - times have passed and the latitudes are under new signs.

Web MD

I'm a tad embarrassed to report that the most comprehensive and accessible report I've found on what I've got is on Web MD, or its affiliate, emedicine. Kind of obvious. But I'm glad to find it. It's at http://emedicine.medscape.com/article/848892-overview.

Here is a key section on where I am:

"This section targets the treatment of patients without an identifiable primary lesion of the head and neck after a thorough examination of the head and neck, a panendoscopy, and possible neck dissection. Jesse et al demonstrated the added advantage of radiation therapy to locoregional control following the surgical removal of cervical metastases. Patients with metastatic cervical lymphadenopathy (N1-N3) had a locoregional failure rate of 13-32% when treated with surgery alone. Compare this with the locoregional failure rate of 0-18% associated with primary surgery (neck dissection) followed by adjuvant external beam radiotherapy. The research following this study further demonstrated the improvement in locoregional control of patients with occult primary squamous cell carcinoma.

"Although the value of radiation therapy has been confirmed, the field to be covered by the radiation therapy is controversial. Grau et al demonstrated the improvement of locoregional control of cancer with bilateral neck irradiation versus ipsilateral irradiation. Patients treated with ipsilateral irradiation had a relative risk of recurrence in the head and neck of 1.9 compared with patients treated with bilateral irradiation. With further research, bilateral cervical irradiation with surgical therapy improves locoregional control of cancer and is accepted as the standard of care for patients with advanced cervical disease .

"The entire pharyngeal axis is generally accepted as the mucosal sites to be included in the radiation field in patients with occult primary lesions. Theoretically, this should prevent the occurrence of the primary lesion. In order to decrease the morbidity of radiation induced xerostomia, some practitioners would not include the nasopharynx within the radiation field if the results of the endoscopy and the findings on imaging studies are negative." [All footnotes omitted]

Xerostomia, for those who don't already know, is the big-time dry mouth that you get when radiation knocks out the salivary function.

Anyway... I now have a little better feel for where I will be going on the Second Opinion Trail. With luck (I guess you call it luck) I will be at MD Anderson at the next few days.

Spooky stuff, though. Another excerpt from emedicine:

"With multimodality treatment, locoregional control of the cancer has improved in this patient population, but little improvement has occurred in overall disease-free survival. The 3- and 5-year disease-free survival rates are 40-60% and 10-25%, respectively. Prognostic factors include nodal stage at presentation, extracapsular spread, and tumor differentiation."

Let's hope that the modifier "disease-free" is what's important. We may well eventually find the mysterious primary cancer. If we do, we will knock it down, and its progeny, every time, until they stay down on the canvas for good.

Back on the Trail

My surgeon's advice is in: radiation, but not radiation to the extent that many practitioners would call for, plus Careful Watching. I will see the radiation oncologist in the next few days and get the details on his proposed zapping. Dr. Haughey, the surgeon, will do the Careful Watching, which initially means coming in every eight weeks or so for a ... careful watch.

The most interesting thing about the advice is that Dr. Haughey says his treatment involves significantly less radiation therapy than most practitioners would recommend. Since the primary cancer has not been found, many would recommend radiation that is all over the head and neck. One friend of mine compares it to shooting a blunderbuss in the air and hoping a flock of geese flies by.

We'll know more soon, because the unanimous advice is that I should hit the Second Opinion Trail, and go to one of the other national cancer centers: Johns Hopkins, M.D. Anderson, Sloan-Kettering, etc. Dr. Haughey confidently predicts they will disagree with him and advise more radiation. Why? Because it's the Standard of Care.

The term is both medical and legal:

M.D. Anderson's site (and these sites are amazing) helpfully posts a definition:

Standard of care. In medicine, treatment that experts agree is appropriate, accepted and widely used. Health care providers are obligated to provide patients with the standard of care. Also called standard therapy or best practice.

In addition - I am a lawyer, after all - I know that Standard of Care is basically the medical malpractice benchmark. You look at the standard of care in the locality and that's what the doctor has to meet. Which means my surgeon is willingly taking a risk - and with a patient who he knows to be a lawyer.

You really have to like this guy.

And you have to like his advice, since it involves less radiation. Or, as one of his other patients put it, I can avoid microwaving my head.

The Second Opinion Trail will be a little unusual. Most of the people I have known who rode it were in search of better news - a way to cure themselves, or buy more time, or endure less pain. I am going out simply to confirm that the proposed treatment makes sense. As Dr. Haughey says, it boils down to a balance of mortality and quality of life. I like his balance, I like the deal, but I have to verify. This is Due Diligence, really, and this M&A lawyer has a whole lot of experience with DD. Time for a data room check.

(photo: old Route 66, somewhere in Arizona, 2006)