Fred Sandsmark's Blog

An article in Monday's New York Times told about a radiologist who experimented with attaching a digital photograph of a patient (the outside of a patient, that is) to the patient's digital CT or MRI scans to see how doing so affected radiologists' interpretation of those scans. The abstract of his findings includes these results:

All radiologists felt more empathy to the patients after seeing the photograph. The photographs revealed medical information such as suffering or physical signs of disease. Out of the 30 cases which were presented twice, in 80% the incidental findings were not reported when the photograph was omitted from the file. All radiologists involved reported that the addition of the photograph did not lengthen the duration of the examination, however did render the interpretation more meticulous. All recommended adopting this idea to routine practice.

The Times article also implied that attaching a photo could have a similar effect on "pathologists and other doctors who rarely have contact with patients."

This reminded me of something that happened not long after Jane was first diagnosed with her brain tumor back in 1998. Our monthly support group at UC Davis Medical Center followed a format in which we'd alternate between open discussion one month (we called it "sharing") and a guest speaker the next. One month, the neuro-pathologist who had prepared Jane's initial pathology report -- a report that was quite dire in its prognosis -- was to be the speaker. (I'm embarrassed to admit I don't recall his name, but I remember that he looked like a guy who spent his days in a dark room performing experiments and looking through microscopes -- pale, rumpled, hunched.) We listened to his presentation, and learned a lot about how brain tumors were identified and classified. After the talk, Jane approached him, pathology report in hand.

Never a shrinking violet, she asked him to read and autograph the report. He was startled but polite; he looked at the report, looked at a very healthy and alert Jane, and said, "Clearly, I didn't know what the hell I was talking about." A huge smile broke across his face, and he autographed the report with a flourish.

We related this story a few times over the years, and the reaction was almost always the same. Our fellow travelers were happy that we had beaten the odds, proved the expert wrong, and got to tell him to his face. (One person was not amused, saying, "I would have sued his ass on the spot.")

I'm pretty certain that that pathologist learned as much that day as we did. By connecting a face, a personality, a person to that tiny "rat bite" of tissue on his microscope slide, he learned that his work exists in the context of real lives and that his words matter. This wouldn't mean that he should be overly optimistic in his reports, but it did mean that he had an obligation to be as precise, accurate, and honest as possible. It's a lesson that the radiologists in the above-mentioned study also seem to have learned.

Labels: brain tumor, health, Jane, medicine, news, people, personal history, science, work

An article by Marcus Wohlsen appeared on the AP over the weekend, regarding ALS patients who are conducting their own clinical trial using lithium. A snippet:

Dozens of ALS patients are testing treatments on their own without waiting on the slow pace of medical research. They are part of an emerging group of patients willing to share intimate health details on the Web in hopes of making their own medical discoveries.

I can certainly relate to the desire to speed up treatment plans. It's part of the need that patients with life-threatening illnesses have to take some control of their situation amid circumstances that feel hopeless. Others might look to nutrition, natural remedies, spirituality, etc. Personally (and quite unscientifically), I think it all helps, because I believe that hopelessness is poisonous.

Wohlsen's article also reminded me of the Virtual Trial being conducted by the Musella Foundation. The foundation deserves a plug here; I hope you'll follow the link to read about the Virtual Trial and the other good work the Musella Foundation does.

P.S. The AP link above will expire on January 1, 2009.

Labels: brain tumor, faith, health, Internet, Jane, medicine, psychology, science, technology

Dr. Greg Foltz at Swedish Medical Center in Seattle is doing some interesting work around genetic mapping of brain tumors. A thorough article from the Seattle Times (reprinted by PhysOrg.com) talks about how he's approaching the disease in a number of creative ways. Some big guns (including Mitchel Berger, Jane's surgeon at UCSF, and Henry Friedman of Duke) are quoted in the article. A snippet:

Foltz and his colleagues genetically map each tumor they remove or biopsy, examining 30,000 genes to determine which are switched off or on. The pattern can reveal genetic glitches responsible for a specific cancer's runaway growth. Such mapping is done at major brain-cancer centers for select patients such as Sen. Edward Kennedy, D-Mass., recently diagnosed with brain cancer.

Foltz does it for every patient, free of charge.

The article also says that Dr. Foltz gives all of his patients his cell phone number, which is pretty cool; brain surgeons can be kind of aloof. The article's well worth a read. Maybe we Norwegians and the Swedes can get along after all.

Labels: brain tumor, health, Jane, medicine, neuroscience, technology

The Spanish golfer Seve Ballesteros has undergone surgery for his brain tumor. It turns out he has the same type of tumor as Jane had: an oligoastrocytoma. (We tended to call Jane's tumor an oligodendroglioma-astrocytoma, perhaps because we worked hard to learn to pronounce it.)

I'm happy to see reporting that gets specific about the type of tumor; too often, all brain tumors are lumped together and called "brain cancer," which I think is misleading and oversimplifying.

It sounds from news reports like Ballesteros' surgery went well. We also learn that Ballesteros got a get well message from Spain's Crown Prince Felipe, which is pretty cool. Anything to raise awareness, I say.

The full Associated Press report by Ciaran Giles can be found here.

Labels: brain tumor, Jane, medicine, people, Spain

The Washington Post has an informative article on Senator Kennedy's surgery. My thoughts:

First, I'm not surprised that the Senator went to Duke, and Dr. Allan Friedman, for his surgery. I predicted to a friend that he would either see Dr. Friedman, Keith Black at Cedars Sinai, or Mitchel Berger at UCSF (Jane's surgeon). These three are probably the top guns in deep brain tumor surgery in the US.

Second, I'm not surprised that the Senator was talking and feeling good after the surgery. Done well, brain surgery is surprisingly easy on a patient. There aren't any nerves in the brain -- just in the scalp -- so there's not a lot of pain associated. The biggest worry is swelling, and this will likely be approached with fluid restriction for a day or two and Dexamethasone (the hated Decadron).

Third, it's interesting to note that the Senator is planning to do both chemotherapy and radiation therapy. This is an aggressive path, and good for him. The latest treatment mode seems to be to take Temodar (an oral chemotherapy) concurrently with 3D Conformal radiation therapy. They'll likely radiate a 1-centimeter buffer area around the tumor resection cavity (the hole where the tumor was) to try to zap as many stray tumor cells as possible. That is, if it was a good resection. If there were parts of the tumor that couldn't be safely removed surgically, they may try to extend the radiation therapy into those areas.

Last, the Post article makes the point that the Senator's tumor type is not yet known. As I noted in the earlier post, "malignant glioma" is a generic term. I'm curious whether the specific tumor type will be released to the public.

One postscript: is disheartening to see the vitriol spilled in the comments section on the Post's article about Senator Kennedy's affliction. It's one thing to disagree with a person's political point of view; it's quite another to wish a person ill in such an awful, vicious way. I wonder how people who write such things can look themselves in the mirror. I hope they never get ill and have to face such hatred on top of their health challenges.

Labels: brain tumor, health, Jane, media, medicine, politics, science

A friend asked me what I thought of the New York Times coverage of Ted Kennedy's brain tumor. I wrote a long, fast email, which I'm also posting here:

They gave the general tumor type (glioma) but not the specifics. There are several types of gliomas, including astrocytomas, glioblastomas, and oligodendrogliomas. Also four grades, from I to IV (the higher the number, the more aggressive). Malignant gliomas are grades III or IV, though so-called "benign" ones still cause lots of trouble because the cranium is an enclosed space and anything that squeezes the brain in that space can cause trouble. Jane's tumor was a mixed astrocytoma-oligodendroglioma, grade III.

They gave the location of Kennedy's tumor as left parietal, and said that area of the brain was involved in sensation, motor control and language. Would have been more accurate to say USUALLY involved in language. Not always. Whether or not often depends on handedness. Jane was left handed, and had her initial tumor in the left occipital and parietal lobes. (Toward the end it spread to the frontal lobes and into the right hemisphere.) Frequently, left-handed people have their language more distributed between the hemispheres than right-handers, but still centered largely in the left hemisphere. Jane had a Wada test that determined that her language was almost entirely in the right hemisphere. (She never did play by the book!) This allowed for a much more aggressive left-hemisphere surgery back in 1998 and 2000.

I have the videotape of Jane's Wada test, by the way -- I remember it as strange and fascinating to watch, but I haven't viewed it in years. I also have a photograph of her open cranium.

One article quoted Keith Black, a neurosurgeon at Cedars-Sinai in LA. He's a rock star among brain surgeons, more famous but NOT more sought after than Jane's surgeon (Mitchel Berger). Keith Black was written up in TIME magazine a decade or so ago, I think.

One article rightly says that age has a lot to do with prognosis. Getting a malignant glioma at age 76 is not a good thing. Another article rightly says that the disease is "treatable but not curable."

The articles refer to the disease as brain tumor and not brain cancer. The distinction is subtle; generally, cancers can metastasize to other tissues, but brain tumors cannot. (You can't get a brain tumor in your lungs, but you can get lung cancer in your brain.) Doctors will very rarely say "brain cancer" in my experience, probably because to do so is imprecise, but a lot of brain tumor patients and advocates (I'm not among them) prefer to use the term "cancer" because, I think, it sounds more urgent. A tumor sounds like something that can be sliced off, like a wart. Brain tumors, especially gliomas, tend to have lots of tendrils and stray cells throughout the brain; it's rare that they're encapsulated. (One NYT article said this, in a roundabout way.)

Labels: brain tumor, health, Jane, language, medicine, people, politics

Researchers at Virginia Commonwealth University may have found a brain chemistry connection between brain tumors and neurodegenerative diseases such as ALS and Alzheimer's. It's good to see people taking creative tacks toward the unraveling of these problems.

[Researcher Paul B.] Fisher and his colleagues were interested in identifying how the promoter region of the EAAT2 gene controlled the expression of glutamate in a group of brain cells called astrocytes. Using molecular biological approaches, the team examined all the regions and sequences in the promoter region and systematically eliminated them to then define which region was necessary to respond to ceftriaxone.

According to Fisher, this led the team to a critical transcription factor called nuclear factor kappaB, NF- kappaB, which regulates many functions in the brain and other parts of the body. This is a central molecule involved in regulation of genes controlling cell growth and survival. Once they identified critical regions in the EAAT2 promoter that might regulate activity, they found that alteration of one specific NF-kappaB site by mutation in the promoter was responsible for up-regulation of EAAT2 expression and consequently glutamate transport by ceftriaxone.

“This work not only has implications for the field of neurodegeneration and neurobiology, but may also help us more clearly understand brain cancer, including malignant glioma, an invariably fatal tumor, and how it impacts brain function,” said Fisher[.]

The full article from Physorg.com is here.

Labels: brain tumor, Jane, medicine, science

After a brief hiatus, Symantec has resurrected its CIO Digest magazine. for the current (April 2008) issue, I interviewed three healthcare IT leaders, asking them about their challenges with device management, enterprise security, storage, compliance, and communications. The article, entitled Best Medicine, can be found here (pdf).

Labels: clips, health, marketing, medicine, science, technology, writing