Mark's glioblastoma treatment

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A lot of people have commented on how unrealistically Mark's tumor has been treated (no pun intended) on the show. There is a reference to this in er daily http://home.twcny.rr.com/edgerton/er/archive.html whic says, in part, "The plotline has a chance to be truly cutting-edge: the outcome of real-life trials of an anti-tumor vaccine won't be published in medical journals until next month." Apparently, the prognosis for long-term survival still isn't good, so this may be a way of letting AE go when his contract expires.

-- Felicity (felicity08@juno.com), January 10, 2001

Answers

Actually, Mark's tumour is not being treated as unrealistically as people seem to think (that is not to say that they may not have taken dramatic licence with the storyline as all dramas are known to do).

After reading the article from NY Daily News "ER's Brainy Reality" , about them using the research by Dr Keith Black as inspiration for the storyline I did a bit of a hunt and found an interesting article on him ( I don't know quite how old it is I can't seem to find a date but it is at least in the last couple of years).

The link is www.time.com/time/reports/heroes/tumor2.html.

It is interesting because it talks about Dr Black's life work and the work he has done on brain tumours. He talks about how only a handful of doctors specialise in removing tumours. That many patients that come to him have already seen other neurosurgeons who won't touch the surgery as they aren't as proficient in it as he and a few others are. ( Sound familiar!!!)

He also talks about the cancer vaccine ( when Black was asked about this in the other article he said he could not comment if Greene would get it. This was followed by the statement that the research is embargoed until February) and that one patient has had the tumour arrested with 4 more treatments to go.

So , while it may be true that not everything in this storyline is strictly accurate, after reading this article, and seeing some parallels with how it has been written in the show, I think they are trying to be fairly accurate in their portrayal. Who knows, when they release this research they may have some really breakthrough news. Dr Black does say in the interview that they can completely eradicate glioblastomas in rats using this strategy - who knows what the future holds for human patients! I am as always an optimist!!

-- rb (broomie@one.net.au), January 10, 2001.


After reading Mike's medical summary about this episode I just wanted to add one thing. Don't worry Mike, I am not one of those people who think you can wave a magic wand and medical problems can go away. I have lived with chronic rheumatoid arthritis in every joint in my body for the last 14 years so I know there are no miracle cures.

I guess what I am saying is that while I agree with you there is the potential for them to be misleading about a GBM, I think, along with assistance from Dr Black, that they are trying to show that there is new hope on the horizon. It may only be in clinical trial phase, and if it is they should emphasise this. But reading the long term survivor stories as I have done, and then reading about this new research, is it really wrong to give people some hope of a future breakthrough ( and I do not mean false hope), or show that there are some people who can live with this ( and I mean live with it, not that they are cured , there is no such thing yet)??

The statistics are terrible but hopefully through people like Dr Black this will not be the case in the future.

-- rb (broomie@one.net.au), January 10, 2001.


It occurs to me that this type of medical storyline seems jarring because it has not been ER's style to really delve into experimental treatments. Now, because they have a need for a dramatic plotline, they're doing something like this. There seems to be some criticism over this because this type of treatment is very experimental, not proven to "cure" (or even to extend life very long), and nobody wants people saying "Well, I saw it on ER." ER has in the past gotten a reputation for being "reflective of today's ordinary standard of care" in a hospital, and maybe the sudden switch to highlighting very experimental procedures leaves people feeling betrayed for various reasons. Is it ER's job to portray only those medical choices that would be available to Joe Blow, or not? As for the admonitions that "they're making it seem like Mark might live" -- I think the chances of Mark leaving ER alive are probably nil - but I object to the idea that people with serious brain tumors should neither have hope for themselves, or see depictions of hope for fictional characters. It would be interesting to see what people actually living with GBM's think (as opposed to people who TREAT GBM's). Maybe we will see a newspaper article on that subject as Mark's storyline progresses.

-- Ellen (eedgert1@twcny.rr.com), January 10, 2001.

Two items from my mailbox (selected because I could find them easily):

This is not a particularly representative sample of the people who have to live with this disease (or their relatives; curiously, I have gotten no mail from people who currently have an astrocytoma), but since everything that has shown up has had a more or less negative view of the way this story is proceeding, I'd like to think I'm not alone in my dislike for it.

I should point out that the first example is fairly atypical in terms of survival time; when I was doing my oncology clerkships, the second story was far, far more common..

I object to the idea that people with serious diseases should be given false hope. There's a difference between the two. My problem with this story line and its treatment has nothing to do with betrayal (I'd really wish you'd stop trying to analyze why people feel the way they do) but because it is professionally irresponsible for physicians (even fake physicians) to make extravagant promises to their patients when the current data does not support it.

I'm not interested in getting into an argument over psychological treatment of cancer, but it's the same complaint I have with "alternative" proponents who claim success with apricot pits or something equally random and/or useless. It's not supported by the data. Try it if you want to, but understand that the odds against you are about as stacked as they get.

-- Mike Sugimoto (phloem@fumbling.com), January 10, 2001.


Yes, but these are people who *lived* (past tense) with GBMs. It is not the same experience as *living with* it (for however briefly that may be). Don't worry, I get your point (although I hardly see where Mark is being "expected" to survive by the what the writers have thus far presented - is any part of his experience *inaccurate* because it isn't typical?) That was what my original post was about. A typical course of the disease vs. an atypical one, and whether ER should present this or that. The only thing I have a problem with is that the writers have not stressed that Mark's case may be atypical. I'm not sure what they're supposed to do when they give a fictional character a GBM -- have him dead within two episodes' span? Have the tumor be inoperable? I can criticize the writers for the cheap trick of ("It's inoperable -- hey, no it's not!") but is there anything in Mark's experience *so far* that's medically impossible? I know what it's like to live with someone who has a very grave condition and doesn't have a very realistic picture of the outcome. My grandmother had ovarian cancer which spread to her omentum (sp?) - even the day before she died she was convinced she was going to get well. It was very sad. It wasn't the reality of me or my mother or the hospice nurse or of medical probabilities -- but it was HER reality, and we had to respect it because she had so little of her life left. I'm trying to say that even the closest relative and most experienced scientist is still on the *outside* of the experience of a terminally ill person. I can appreciate that "ER" would prefer to portray the inner experience of a terminally ill person -- including hope, real or false. So I hope they can at least manage that part of the story well.

-- Ellen (eedgert1@twcny.rr.com), January 10, 2001.


A bit of clarification on my grandmother's case: At no time did anyone "play along" with her belief that her cancer was beatable. In fact, her doctor tried to tell her, we tried to tell her, we tried to give her time to come to terms, but she never really did. (at least, we didn't think so). I do think the issues raised in this sort of discussion, even by a flawed storyline, are good ones. And Mike, by saying "betrayed" I wasn't exactly attempting any deep psychoanalysis of you specifically. I think that whenever we're moved to criticize something, on some level we feel betrayed, especially if it's a TV show we've invested time and effort in watching. Perhaps "disoriented" would have been a better word to use.

-- Ellen (eedgert1@twcny.rr.com), January 10, 2001.

First I would like to say that I enjoyed reading your responses Mike and Ellen. I can see where both of you are coming from, even though my views are more closely aligned to Ellen's. However, we are all entitled to our opinions and it is nice to get an interesting discussion again.

Secondly, in light of our discussion I thought you would find this article from today's NY Daily News interesting as regards the writer's motivations for writing this storyline.

< By SUSAN FERRARO Daily News Staff Writer

Only in New York: A pioneer of the brain-imaging technique that gave hope to Dr. Mark Greene on "ER" last week is Joy Hirsch at Memorial Sloan-Kettering Cancer Center.

And one of Hirsch's patients a 43-year-old man with the same life- threatening tumor in the same place was an out-of-state physician who, like Greene, had been told his tumor was inoperable.

"The 'ER' story has a story in real life, and it's probably my patient," said Hirsch, a radiologist. Colleagues at Sloan-Kettering cheered her last week "for being on 'ER'," she said. ("ER" fans, note: Hirsch's patient got well.)

She said an "ER" adviser attended a 1999 lecture in which she mentioned the case.

But "ER" producer and writer Joe Sachs said the similarities are "a coincidence." The plot grew out of a writers' retreat last year, he said: "We decided to do a complex medical treatment with a doctor as a patient," and he interviewed Dr. Keith Black in L.A. to research Greene's treatment. Black has used Hirsch's brain maps , to guide his surgery, Hirsch said.

Still, Sachs said, "ER's" New York minute has nothing to do with SloanKettering. "It was a visual decision, by the powers that be," he said. "They wanted to go to Rockefeller Center, to see the tree at Christmas."

Only in Hollywood.>>

-- rb (broomie@one.net.au), January 11, 2001.


I guess what I'm wondering is this: Mike referred to people who wrote him, whose loved ones were diagnosed in 1997. At least one other person wrote in to this board with a similar situation. But, and here is my question, in medicine, is what happened in 1997 relevant to what's happening today? Could the prognosis for a patient in 2001 be a lot more hopeful than for a patient in 1997?

-- Felicity (felicity08@juno.com), January 11, 2001.

Well, I'll be paraphrasing here, but didn't Dr. Humperdinck say, "There has never been a more successful operation on your type of tumor?" It seems to me he stressed that, very pointedly, when he was talking to Mark.

-- Cecelia (evilstoat@hotmail.com), January 11, 2001.


If I understand correctly, the crux of Mike's problem with the storyline is that it is not a doctor's business to do or say anything which gives a patient hope which is not supported by current data. A reasonable enough opinion, I guess. I just wonder, though, if one holding that opinion would have the same critical reaction to when Susan Lewis (a doctor) told a patient in an early episode of the show, "Nothing is certain. Nothing that seems very good, and nothing that seems very bad." Was that irresponsible of her, as a physician, to make such a comforting statement? Then again - what data are we talking about that slams shut the door on any hope? Is it possible to withhold hope wrongly from a patient because a doctor is working with out-of-date data? In the long run, *no* human hopes are completely supported by "the data." Including the hope that some people seem to have that "ER" will magically improve itself from week to week and return to a sustained state of glory/medical accuracy as it was in its youth. The "data" on past shows that have reached this stage of age and popularity give us no hope for that. So I think it's curious that Mike started off his review of "Piece of Mind" the way he did. Now, if we can indulge Mike his hopes, surely it can't be wrong for a physician to indulge and even assist in the hopes of a GBM patient who wants to stay alive. And I don't think it's irresponsible for a TV show to depict a doctor doing that either. (and have they really depicted all doctors as giving false hope? what about the neurologist at County, and the jaded, serious members of the Tumor Board?) It's too bad the writers haven't delved more into the debate over whether Mark should have received the surgery; we never got to see the Chris Sarandon character arguing his case, since he's obviously so passionate about his treatment and about keeping Mark's spirits up.

-- Tracy (bankybooda@aol.com), January 11, 2001.


Hey, I just had an idea - maybe they should put a disclaimer at the end of the episodes, "This storyline is a work of fiction, performed by trained actors. Actual GBM patients should not attempt any of this hope at home." :-)

-- Tracy (bankybooda@aol.com), January 11, 2001.

Of course, I can't help but be reminded of "How The Finch Stole Christmas," in which Lucy told the heart-transplant patient that she'd probably be home by Christmas--only to be chastised by Kerry for basically giving the patient hope that might not fit the situation. (Ultimately, the patient died.)

Hope may float, but I think there can be a happy medium between a healthy, hopeful outlook and a reasonable knowledge of what one's chances may truly be.

When I first heard about my sister's breast cancer, my family wasn't very forthcoming with me about her slim chances for survival-- they rode the fence while I, living a thousand miles away, waited for someone to tell me whether it was serious enough for me to fly home to see her. When my mother used the words, "We can pray for a miracle," I took that to be the euphemism it was, and managed to get back to my home town to see my sister just before she died.

There's hope, and there's hide-the-truth-because-it's-too-painful-to- deal-with. I do think there can be a happy medium between the two, though. At least, I hope there is. ;-)

-- Cecelia (evilstoat@hotmail.com), January 11, 2001.


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