“When you’re suddenly told that you have a condition that is considered terminal,” she said on the podcast the Human Guinea Pig Project in 2019, “the one thing you desperately need is psychological support, and it’s not there.”
Glioblastoma is a particularly aggressive type of brain tumor that seems to defy treatment. It is what killed President Biden’s son Beau in 2015 and Senator John McCain in 2017.
“Median survival, the point by which half of those with glioblastoma have died, is usually put at 14 months,” Ms. Morris wrote in the essay. “Only one in 20 people survive five years.” 2016 – 2021, Jessica did better than the median. What’s brutally unusual is knowing the date with death averages 14 months. Knowing is a blessing and a curse.
Cause Celebre? The NYT article hit right where I live. There’s history here:
I started neurosurgery in the 70’s. The big discovery was RT – radiation therapy – worked. It worked so well that the clinical trials ended early because it made such a dramatic difference. The median survival was 12 months with RT. Chemo added a couple months. Let’s see. I’m retired. Nearly 50 years later the numbers are about the same. We didn’t get far? We didn’t try hard? We ignored the disease?
There are always exceptions: Susan D survived more than 10 years after my initial treatment of her. I would shake my head in wonder each time she waltzed into my office past the secretaries and Ginny, my nurse, to plop down behind my desk and greet me, “How’s it going doc?” One day at the beach she reclaimed her wig (that resembled a “drowned rat”) from group of startled kids, when the wig washed from her head in a wave. Susan had the wherewithal to laugh at herself and make us laugh.
14 months? It is the median – the peak of the Bell curve. There are those who survive longer and those who succumb in less than a year.
Add Senator Ted Kennedy to the list. At the time of his diagnosis he convened a group of prominent neurosurgeons from around the US. One confided he did not want the honor of Kennedy’s surgery because his death soon after would be a negative impact on his reputation. We expected to hear, and, Ted got, the very best in neurosurgical state of the art treatment. Ted lasted about 18 months. He lived to make a speech at the DNC. Ted was not all there when he made that speech.
We have computer guided neurosurgery that will remove all visible tumor seen on the scan. The problem is that tumor cells lurk in the borders, too small to see or resect. The tumor genome is multi-ploidy. Therein lies our failure. We cannot simply resect brain without consequences.
There’s much promising research. We will cure this disease. We just haven’t made much progress in about 50 year. And, we have – made progress. Sorry, chemo, RT, and surgery, that’s it? Immunotherpy, gene therapy… all promising. Hope?!
Support? Yes, we do. I did. I prepared the family in advance. For the patient, hope. Always provide hope. This brain cancer takes away your ability to realize or care that you are dying. So, comfort is the word. As the patient, you will slowly lose track and be unaware you are dying. Your family will know. It will be particularly hard to watch mom become not mom. Therein lies the truth in telling the facts and letting family adjust to the inevitable. It is profoundly sad to lose a loved one no matter the circumstances. Support? Yes, I provided a lot.
There is not a single patient death that you ever shrug off. Knowing is a burden. Every single patient I ever lost was a defeat. Like a relief pitcher in baseball – full count, two outs in the 9th with the bases loaded – you don’t dwell on the home run you pitched last night. Compassion is something every physician must master. If your patient does not have hope, you need to rethink your approach. There is no compassion in telling your patient they are doomed outright. In this case, hope is lying. We (neurosurgeons) all know this.
The choices are not cookie cutter. Against the backdrop of the facts, Jessica sought hope. I never lied. If you ask, I’ll tell you. But… always, hope. Circular thinkng, but, if you ask for the truth….
I recall my mother (any/or all mothers) saying, “If your friends jumped off a bridge, would you follow them?” Or, the story from the movie “Jaws” in which Robert Shaw says, “We were being rescued a few at a time. I was so close between being rescued or eaten by a shark. I’ll never wear a life jacket again.” Hey?
Mix and match? NO! That would be a trumpian move as we await our turn in line. Oh?! Republican? You didn’t see how to influence/buy your way to cut the line? Don’t do it! Don’t cut and do not ever mix your vaccines. Off label use (going against manufacturers recommendation) might work and might not. It’s a risk, stupid, not a smart one. Don’t do it. Jumping from the bridge is sure to result in some harm. Mixing metaphors might not hurt but mixing vaccines is stupid, Stupid. I join in admonishing against utter stupid.
I gotta say that these are moral ethical dilemmas for our time. God! License to kill! Yes, there is so much to ponder. We, as physicians, have been accused of playing “god.” And, indeed, there was a time before I began my career. when we all (some) believed that to be true. I grew up in the Viet Nam war era. I have seen god play doctor. I have seen colleagues “execute” patients – in the name of mercy, or not. I have experienced (not proudly) the battlefield mentality that overtakes an embattled intern on-call in his 23rd hour in a busy inner city ER.
I agree. Yes, I’m being obtuse. Which? Which which?
But which? For the right to decide? Who? It’s personal. For every righteous decision, there are those who would use this mandate poorly. We only need look to our fearless leader. With nary a hair out of place (hairspray, lots of it) he refused to wear a mask. Fashion statement? Defiance? Stupidity?
There will always be second guessing on this call to double 0 status. Will we, as a profession, be judicious, given “00” status?
No one wants bad news. Positive good news is best. Doctors want to cure. Patients should not leave in despair. Any drug treatment as long as it doesn’t hurt is acceptable. I preached back in 2008 that Pfizer made ~$5 billion a year on a drug to treat fibromyalgia. The diagnosis was a made up medical diagnosis. There is no test that supports the diagnosis. But no one believed it. At least the primary care MD’s at my talk objected. It worked in their patients. Once again there is a voice in the crowd that objects. And if you follow the money, that voice will be stilled. After all Pfizer has millions to spend to protect billions in sales. No doubt there are many among you who can swear it works. Have you considered modern day Snake Oil?
No harm no foul? There are side effects. That’s why folks believe the drug is effective. You know you have taken it because it’s side effects are real. Physicians prescribe it because patients have said it works. It’s a self serving cycle. Call it psychological symbiosis. The only real beneficiary is Pfizer. Money talks. Every time I watch the TV commercial and the disclaimers I am saddened by the disinformation. Gaba, lyrica, horizant – all drugs masquerading as cures for diseases that aren’t.
This is a device without any redeeming use as medical device for diagnosis, treatment, or cure. It is so stated in bold print on the first page. It is electrical stimulation based on the meridian lines on the acupuncture charts. It was expensive to buy the machine in its time. Now it is a curiosity. Hey! Even placebos work. And a broken clock is right twice a day. And… well, you get the idea.
The white blobs you see are hardened plastic within a vertebrae of the spine.
Placebo was always a dirty word to me. I’m a physician. I don’t lie to my patients. I’m a scientist. Show me what works and what I can feel and touch. God? Once a upon a time nurses administered norsal for pain. (normal saline) And there was the 2-week Harvard study in which they gave patients sugar pills. After the study a woman demanded more pills. (she said they had helped her)
Then, there are industry myths perpetuated for money. Vertebroplasty and kyphoplasty are billed for $10,000 or more –
“Insurers generally cover the treatments. Medicare pays about $2,400 to $3,000 for vertebroplasty, and $6,500 to $10,000 for kyphoplasty, depending on where the procedure is performed.” NYT 1/24/2019
To be sure I have done it (vertebroplasty/kyphoplasty) – both methods. The results in my hands were mixed. We tend to forget failure and to remember our success. Particularly, I remember an elderly woman who literally rose from her wheelchair to give me a big bear hug. Hey, it works?
No one knows how the procedure gains its success. There is no real science behind it. Injecting a balloon will not lift up a compression fractured vertebral body. A chemical reaction? The heat of the cement setting? No definite science except that the money pours into the coffers of all parties – physician, hospital, supplier (manufacturing company).
The procedure was in my armamentarium of treatment options. More often than not I forgot it was and didn’t do the procedure but a handful of times. We have all had our suspicions. Some chose to make money while others abandoned the procedure. By the time I retired, radiologists were doing them frequently. (Baby, needs new shoes, or daddy needs a new Porsche.)
In summary, the procedure will still be done widely. Money. The companies will push and tout the procedure. Money. And the placebo effect will allow patient testimonials continue with true earnest belief.
….gimme those sugar pills, they worked. … at least they cost pennies not $thousands. I post this on April Fools. Who’s the fool?
Did you know he was a neurosurgeon? Not me. His show was black and white TV from the ‘50’s. It was still showing on cable in the wee hours in the 80’s. Huh? Well, Jules would be up. She was an infant. I got out of getting up with her. I followed certain rules: Sleep on the side of the bed farthest from the door. If you hear the baby cry, don’t move (in the bed). And finally, “Honey, I’m operating in the morning.” Lisa would watch bleary eyed as Ben solved another medical neurosurgery mystery. Then I would get queried in the morning to “solve the case.” Amazing! He did it all without CAT scan or MRI. Yes, he was a true legend. When Dave was born, he never cried. Lisa was too exhausted from Jules, so she left him alone, and he stopped crying.
This is a spine tumor. On the day we did this surgery I operated in the neck, in the thoracic spine (chest) and in the lumbosacral spine. We followed that with brain surgery. It’s always interesting. This poor patient was treated for an infection but was not improving. Several biopsies were unsuccessful to establish a diagnosis. Now he was weaker and in more pain. The mass invaded his sacrum – pelvic bone – and surrounded his spinal nerves and was threatening to take his leg strength and bowel and bladder function. It was pretty serious stuff. And previous procedures had everyone guessing what this lesion represented on the MRI scan.
Surgery was difficult as expected. The mass was completely in front of the spinal sac. It’s partly why the diagnosis was so difficult to establish with a extensive surgery. You can see the nerve sac. This turned out to be a tumor lying stuck tightly among the nerve roots. It had been growing slowly. About six hours later and the nerves and spinal sac were decompressed. We worked slowly under the operating microscope to get the pressure off the nerves. It was most rewarding to hear the patient tell me the next day that his severe debilitating pain was much improved. Some days end up pretty nice.
This is a brain tumor. And if it is in your head this is big trouble. It is benign and grew slowly. The only noticeable symptom was that the patient lost his sense of smell. It did not act like a stroke so the symptom was ignored until now. And there is swelling around this tumor so it is actively growing. Now it can no longer be ignored. Surgeons like fisherman like to exaggerate about size so here are the images and you can make your own guess. This one Is on the extra large side of the equation. It is not the largest tumor I have removed. My assistant shook his head in amazement because it was the largest he has seen me remove while he worked with me. But hey! I’m older. The task at hand is to get this tumor out without causing any disturbance to the surrounding brain.
Oh? Yes it is benign. And the sense of smell is gone because the tumor origin is right from that area. There are a lot of serious neurological structures to worry about like the nerves for vision and major arteries into the brain. Of course it requires a complex approach to just expose the mass. As large as the tumor grew, it is still a matter of millimeters between trouble and success. We spent some hours taking this out. In fact it was close to six. And… the end result was that the patient was fine! That is the only thing that matters in the end. I just wish I had met this tumor when it was a lot smaller. But since I’ve been here there are lots of people who have refused surgery in favor of just waiting. Gee!
And the patient – he will make a good recovery except for the sense of smell which was taken by the tumor growing.
This is a birth defect. Once in a while you have a run of cases that are interesting. In Jeddah everyone is wary of surgery. The reasons are myriad but mostly people are just plain afraid. I had some recent successes so for a few days I’ll post up some medical things.
This child was born with a failure of the spine to close over into a proper canal. So the lump is a combination of nerves and skin exposed to the air. The spinal cord begins as a plate which rolls into a tube which is surrounded by the muscle bone and skin. Failure of the tube to roll up results in this defect. It is largely unseen in the US for many years. Prenatal vitamins has pretty much made this so rare that I have not cared for such a patient in many years.
You can see that the nerve sac is incomplete and sticking out through the spine at its lower end.
Fortunately the defect may be low enough that the child will walk. His bowel bladder function may be incomplete. The repair is shown.
The wound is several days after surgery so there is a lot of swelling and bruising but the defect is covered and repaired now. Many more problems will face this child as he grows. This is the first step. The biggest challenge now was to make a proper closure and to prevent infection.
Blood attracts attention. This is basic carpentry. There is not too much finesse in play here. The spinal canal was decompressed. Large screws, rods and a cross link were inserted to stabilize the spine. The problem with photographing spine surgery is that all the field is red and the anatomy does not show well at all. You cannot appreciate the screws; just their tops are in view. It all looks intimidating. It is. This system was inserted about ten years ago. The technology is old already. We have moved on to variable head screws. Just like the anatomy, the picture tells me much more than it can the casual viewer.
And this is cable. One professor of mine exclaimed he would never use it. For some problems this is the way to go. Braided cable is softer to work with and is less dangerous to use for certain conditions. So I did. It is much akin to the right tool for the right job. Knowing what is available helps in finding the best solution.
I took care of a physician who had a rather extensive art collection. I did not know the value of the things he had. He offered me a choice of some things in his collection and this ivory figure struck me. Carol hated the thing. And Lisa loved it. Somewhere along it was explained that this figure was used in physician’s offices. Women would point on the figure to explain where their symptoms were bothering them. This avoided the embarrassment of directly touching herself for the woman. And as I reconsider, it is possible to point and make yourself understood. Not only that but the figure has some style rather better than pointing to a chart. But in order to examine the patient there is going to be some touching somewhere.
Here’s a subtle way to slip in the fact that my day job is brain surgery. As in, I am not a photographer but really the neurosurgeon. But, beginning in high school, I was a photographer first! Medical teaching was often done with a Kodak Carousel slide projector. Hence, there was a need to get visual aid materials. I started medical photography with a Nikon film camera. I shot slide film with a very limited exposure latitude. Print film does not go into a projector. Sometimes we would be able to catch frames from the operating microscope via an adapter. (more…)