I saw one of the most disturbing things of my career recently — and that is really saying something.
This was a young woman, barely out of her teens, who presented with a tumor in her distal femur, by the knee. This was not a new diagnosis — it had first been noted in January or so, and diagnosed as a Primary B-Cell Lymphoma. By now, the tumor was absolutely huge, and she came to the ER in agonizing pain. Her physical exam was just amazing. The poor thing’s knee (or more precisely, the area just above the knee) was entirely consumed by this massive, hard, immobile mass about the size of a soccer ball. She could not move the knee; it was frozen in a mid-flexed position. She hadn’t been able to walk for months. The lower leg was swollen and red due to blood clots, and the worst of the pain she was having seemed due to compression of the nerves passing behind the knee. It was like something you see out of the third world, or historic medical textbooks. I have never seen its like before.
So we got her pain managed, of course, and I sat down to talk to her and her family.
What I learned was even more amazing. The patient had been seen by the finest oncologists in the region upon diagnosis. They had all recommended the standard treatment of a combined regimen of chemotherapy and radiation. She had, however, steadfastly refused this treatment. She preferred, she said, the “Gerson Protocol.” This is, she continued, “a way for the body to heal itself with a combination of detoxification and boosting the immune system.”
In a less grave situation I might have laughed and asked “So how’s that working for ya?” As it was, the tears from her only partially-controlled pain took any humor out of the situation. She was very frustrated that the Gerson therapy wasn’t working yet, but she did not perceive this as a failure of the treatment. Her theory was that the severity of her uncontrolled pain was keeping her immune system suppressed and preventing it from working. If, she hoped, she could just get her pain under control, she would finally start to get better.
I spent a lot of time with this young lady. Listening as well as explaining. She was dead set against chemo, which to her mind was equated with the “toxins” which had caused her cancer in the first place. She wrote off the oncologists as pushing chemo “because that’s all they know how to do, and it never works.” She had, in fact, burnt all the bridges with the various oncologists who had treated her, and was now left with only a pain specialist and a primary care doctor trying to do what little they could for her. She was equally frustrated by doctors in general, who “won’t do anything to help me.”
I could see why she felt that way; when a patient refuses the only possible effective treatment, there is not really much we can do to help her.
I did what I could. I talked to both her doctors, and I called a new oncologist. The oncologist, a wonderful man, promised to make time to see her in his clinic, even fully forewarned of the “baggage” she would be bringing with her. She was happy to receive the referral, though I warned her that the new oncologist would be recommending more-or-less standard treatments. Ultimately, she went home and I was left to reflect on the futility of the situation and the absolute wickedness of the charlatans and hucksters out there who promote this sort of thinking. From the late Dr Gerson, to his modern-day counterparts Andrew Wakefield and Jenny McCarthy.
Most woo is harmless — but that’s because most woo is directed at chronic, ill-defined, or otherwise incurable conditions. Think chronic fatigue or fibromyalgia. Wave a magnet at somebody, get them to do a lot of enemas and go on a special diet, and you get to write a book and go on Oprah and collect a lot of money. If the subjects of the “magical thinking medicine” think they are better from the intervention, then so much the better.
But the really pernicious thing about allowing fantasy medical theories and treatments into the mainstream is that when they gain enough credence among the masses, they will tend to be used in place of real medical treatments that work. Like vaccines. Even the anti-vaxxers have a limited and indirect harm — of the many thousands of children who go unvaccinated, only a very few get measles and even fewer die. It’s a real harm, but one which is easy to miss if you’re not affected personally. But when woo supplants real medicine against lethal diseases that actually have effective treatments, the harm is so much more severe and so apparent that it cannot be left unrecognized. Because of the practitioners of “alternative” medical treatments who irresponsibly and dishonestly teach people to distrust medicine and embrace unscientific treatments, this young woman is enduring incalculable pain, and may well lose her life.
It’s sad, and it’s an outrage.
*This blog post was originally published at Movin' Meat*
The worst case of pulmonary metastases that I have seen. 40-year-old woman, operated for primary lung malignancy (adenocarcinoma) a year ago. Note the reduced lung volume on the right side.
Senator Ted Kennedy’s death from brain cancer underscores the urgent need for more funding of basic cancer research. Despite the best efforts of a team of top doctors, Kennedy died 15 months after the diagnosis of a malignant brain tumor called glioblastoma. Over the past ten years, some progress has been made against this deadly illness and the silhouettes of some promising new approaches are becoming visible. But our treatment options remain woefully inadequate.
With over 560,000 cancer deaths each year, that comes to less than $10,000 in research spent for every cancer death. That simply is not enough money spent on a problem that strikes almost 1.5 million Americans each year and causes nearly one of four deaths.
Research for certain cancers is especially under funded. Earlier this year, I helplessly watched a dear friend and patient die from esophageal cancer, both of us knowing that only 22 million dollars each year – about $1,500 per death – was being spent by the NCI on the disease annually. One reason is that patients with esophageal cancer don’t have a strong advocacy group to push for their fair share of the funding pie. Lung cancer, which tops the list of cancer killers in America, only gets about $1,500 per death. At the top of the list based on research spending per death are cervical cancer (about $19,000), breast cancer (about $14,000) and brain cancer (about $12,000).
Click here for a chart that I compiled with the help of statisticians at the NCI that breaks down government spending on the top cancers.
Of course, there shouldn’t have to be a competition among cancer advocacy groups. There should be adequate funding of basic medical research to help discover the underlying cellular mechanisms that many cancers share and that hold the key to prevention, early diagnosis and effective treatment. But there’s not enough money for our young researchers. In 1980, almost 25 percent of first independent government grants went to scientists under age 35; that figure has plummeted to only 4 percent as the first-grant age rose from 34 to 42.
Faced with increasing competition for shrinking dollars, many of our best and brightest are considering other careers.
My cancer patients desperately need a bailout. The best way to increase our spending on cancer research responsibly is through health care reform. The Institute of Medicine has estimated that about 20 percent of the annual $2.5 trillion in health care costs is unnecessary. That’s $500 billion annually or 100 times the current budget of the National Cancer Institute. There could be no better tribute to Senator Kennedy or wiser investment in our own futures than to fix a broken system that threatens to bankrupt us while inadequately addressing one of our most devastating health problems.
For this week’s CBS Doc Dot Com, I take you behind the scenes to an edit bay at the CBS Broadcast Center in New York. I talk to Dr. Henry Friedman, an expert on brain cancer. He is co-deputy director of the Preston Robert Tisch Brain Tumor Center at Duke University Medical Center. In addition to hearing about the latest treatments for the disease, you’ll see the secret behind how we do long-distance interviews for the CBS Evening News with Katie Couric.
Surgeons are not stand back kind of people. They fall more comfortably into the category of charge in where angels fear to tread. I think the work tends to preferentially attract those type of people. But sometimes standing back can be the lesser of two very evil evils.
The call was a standard weekend consultation. The patient had hematemesis and his doctor was worried. Nothing I hadn’t seen many times before. But when he came in the patient’s wife had a few more details to spice the story up a bit.
Just about a year ago he had had a resection of his stomach for cancer. The surgeon had told his wife they couldn’t get all the cancer out because it was growing into some big blood vessels behind the stomach. For some reason they both decided not to tell him this. So when he was referred for his chemotherapy (something that could not be described as awe-inspiringly effective in stomach cancer) he truly thought he was well on his way to full recovery. and now he lay before me, pale and restless.
He was a shadow of what he once must have been. His skin hung loosely as if in remembrance of the large man it once covered. I was not happy with the mass I clearly felt just under his left rib margin. The cancer was back and it seemed angry. I got the necessary drips running and ordered blood. I considered dropping to my knees but due to a back injury when I was still a student I wasn’t sure I’d be able to get up onto my feet again.
The wife called me aside and told me the patient was not aware of the fact that the operation was not a roaring success and therefore that he was essentially living on borrowed time (which I grimly thought he is about to pay back with interest).
“You need to tell him.” I said.
“No!! Doctor!! I can’t do that.” She needed the truth.
“This man, your husband may die here in this hospital within a day or two. you need to speak to him.” But she would hear none of it. She also didn’t want me to tell him things were not so rose coloured (I suppose depending on what colour roses you’re talking about of course).
The next day the patient was feeling much better. Amazing what a bit of blood will do. We chatted a bit. You know, shared a moment. He even laughed at how bad he had felt the previous day in comparison to today. Then it was back to business. In this case business meant I was going to take a long, not so thin pipe and stick it down his throat to take a quick look at the source of the bleeding in his stomach. I sort of lied to myself, telling myself that maybe I’d see something that could be fixed with a knife. In truth I knew what I would see. The palpable mass and the history dispelled almost all my doubt (or hope). But I knew I needed to look. I needed to know for sure how much or how little I would be able to do for him. Maybe I needed evidence for one day after it all when I am called to account.
The cancer was a large fungating mass with a deep necrotic core. It was gently oozing blood but I could see it was capable of so much more. It seemed to me it had stopped its torrent of blood long enough to give me a glimpse as if to taunt me. As if to say you know me and you know you have no power here. It was right.
After the procedure the patient once again started spewing forth blood. I sat with him for quite some time. between his retching we spoke.
“This is not good, doctor.”
“I know.” What more was there to say?
“What are we going to do?”
“We are going to hope the bleeding stops.” What more was there to do?
Then I went against the wishes of his wife. I told him this cancer was going to be the end of him. He looked at me with a calmness and a gentle smile.
“I know.”
He probably had known for some time but I think he felt he had to go along with the charade and maintain the lie with his wife. He seemed relieved that the truth was out. He seemed to relax.
That night the sister called me to tell me he was bleeding massively. I explained the situation and asked her to push blood IV. If that didn’t help, nothing that I could do would. The next morning he was dead.
Somehow when we sit behind our computers and in our nice expensive offices deciding about the futility of certain treatments and who should get what based on cost or whatever, the actual point is lost. The nice old man finally vanquished by the hideous monster called cancer or the old lady with heart disease or whatever who is forced to succumb to the dark inevitable is the point. It is the person, the individual. the one like me. and maybe like you.
I was just left with a sense of how difficult it is to stand back and let someone die when you know what that means. It, I assume, is much easier for the powers that be, snug in their artificial real worlds.
I sat with non-medical friends last night and the discussion turned to “health”, as it often does. One guy related the terrible story of a woman who went to her doctor with a certain pain which turned out to be cancer that had spread and she died within a week. The inevitable question; “How do you detect early cancer, so you can catch it and cure it?”
The answer I gave was less than satisfactory for my friends. In fact, they were a bit incredulous with the answer.
All cancer is genetic, in that it is caused by genes that change. Only a few types are inherited. Most cancers come from random mutations that develop in body cells during one’s lifetime – either as a mistake when cells are going through cell division or in response to injuries from environmental agents such as radiation or chemicals.
Different types of cancer show up differently in the body. We have screening tests for some types of cancer. We can detect early breast cancer with mammography. We detect early colon cancer with colonoscopy and hemocult stool tests. We do screening for cervical cancer with pap smears. Early prostate cancer can be detected with PSA, but it is not very specific. Skin cancers can be found early with visualization and biopsy.
What about brain cancer, testicular cancer, leukemia, sarcoma, lung cancer, ovarian cancer and a number of other less common malignancies? We have no screening tests for these diseases. Perhaps we will discover some gene test or imaging test or breath test in the future, but right now, a person would need to have symptoms that would point to the disease.
This is a scary thought for people…especially those who try to live healthy lives.
It is the randomness of life that has always made us feel vulnerable to things we cannot control.
It’s no secret that doctors are disappointed with the way that the U.S. healthcare system is evolving. Most feel helpless about improving their work conditions or solving technical problems in patient care. Fortunately one young medical student was undeterred by the mountain of disappointment carried by his senior clinician mentors…
I am proud to be a part of the American Resident Project an initiative that promotes the writing of medical students residents and new physicians as they explore ideas for transforming American health care delivery. I recently had the opportunity to interview three of the writing fellows about how to…
I m often asked to do book reviews on my blog and I rarely agree to them. This is because it takes me a long time to read a book and then if I don t enjoy it I figure the author would rather me remain silent than publish my…
When I was in medical school I read Samuel Shem s House Of God as a right of passage. At the time I found it to be a cynical yet eerily accurate portrayal of the underbelly of academic medicine. I gained comfort from its gallows humor and it made me…
I am hesitant to review diet books because they are so often a tangled mess of fact and fiction. Teasing out their truth from falsehood is about as exhausting as delousing a long-haired elementary school student. However after being approached by the authors’ PR agency with the promise of a…
