Wednesday, August 15, 2012

Maria's story

Here's a story to read and think about, from Maria Bonyhay, taken from the Brain Tumor Foundation website:

When you are dealing with an illness, it is important to remember that every patient is an individual and everyone should get the best possible treatment.  I think the most important message of my story is to never accept one doctor’s opinion – get a second and third if necessary.  Treatment guidelines are useful but may not be appropriate for everyone.  Every case is different.

My headaches began after an ordinary bout with the flu.  My primary care physician ordered an MRI to determine the exact cause.  Since I had had a head trauma about 20 years ago in the same location of the headaches, he suspected a cerebral aneurysm.  Instead, he found a ping-pong ball sized tumor in the middle of my brain.  Other than the headaches, I had been experiencing light and noise sensitivity and my normal sleep patterns changed.  During the MRI, I began feeling confused and felt a weakness on my left side as well as problems with my eye.   I was admitted to the hospital, and the following day the doctors performed a stereotactic brain surgery needle biopsy.  My diagnosis was confirmed – Glioblastoma Multiforme.
My doctors told me that surgical resection was not an option and they offered me conservative treatment and experimental protocols with an estimated survival rate of two years.  This was not good enough.  I needed a second opinion.  Unfortunately, after speaking with another doctor, the consensus was the same  – a resection was not an option.

With the help of some friends, I was referred to another neurosurgeon at Columbia Presbyterian [Dr. Jeffrey Bruce], who had developed the surgical technique of removing a tumor in the pineal region, the same area mine was located in.  After reviewing my MRI and various other test results, and taking into consideration my young age and otherwise healthy condition, he decided to remove the tumor.  The pathological analyses of the tumor showed a lower grade tumor (Anaplastic Glial-neuronal) than was originally diagnosed by the needle biopsy.  After 6 hours in surgery, I had a relatively easy recovery – I could even talk and walk the following day and by the 10th day, I had no symptoms at all.  As a precaution, I received a 7-week proton therapy.

Now, I feel healthy and strong and have no remaining after-effects of the tumor.  My follow up MRIs show no new growth.  My long-term prognosis is good!  Because my brain tumor was removed, my quality of life is better.  Because my brain tumor was removed, my chance for long-term survival has increased significantly.  With God’s help, I will now live to see my young sons grow up.


Jesse said...

It is important to note that while Maria's story is absolutely wonderful for Maria and it offers an important lesson about thoroughly researching options, there can also be a risk to hearing this story. Not everyone will have such an excellent outcome. Some may do worse when pursuing options that may offer hope but not be proven. For society as a whole this can also drive up the cost of healthcare as people seek out expensive yet unproven therapies "just in case" they might work. In fact Maria received a 7 week course of proton therapy "just as a precaution." Did she really need this? How much did if cost? What if everyone got this "just as a precaution?"

I by no means begrudge Maria her apparent success. However phrases such as "every case is different" are what we doctors have used for years as reasons to fight standardization, resulting in greater costs and decrease safety. Yes every person is different but we can't call that a lesson in why we should be able to pursue whatever unproven course we like, or we may never improve safety and decease costs, two major imperatives.

Caveat: I am not implying I know Maria's course of care was unproven. I do not know the neurosurgery literature well enough. I just have concerns about applying anecdotal medicine.

Istvan said...

You are right that neither patients nor doctors should apply anecdotal medicine. I am not sure which intervention, the surgery or the proton therapy you meant as unproven therapy. Both the surgery and the proton therapy are well accepted therapeutic interventions in brain tumor cases. Proton therapy is an advanced type of radiation therapy to deliver the safest, most effective treatments for cancer, though tumor location, size and other factors could be limiting factors in its use. An example for proton therapy is the Francis H. Burr Proton Therapy Center in the Massachusetts General Hospital, which is one of the most highly recognized centers in the world. Cases in proton therapy centers are carefully reviewed by an expert committee which makes a recommendation for the therapy.
I think one of the most important factors in patient care today is that doctors should be absolutely up-to-date with the literature of their particular field. They should closely follow the rapidly improving therapeutic options and their success or failure. This would be enormously helpful for an individual patient to find the best proven therapy.

David Ropeik said...

From Facebook:

From a brain tumor survivor and former board member of the BTS: A bigger issue with brain tumors than getting second opinion on the tumor itself is getting to the diagnosis that it's a brain tumor in the first place. Most patients present with "surface' symptoms that are only treated symptomatically; headache with pain meds, balance problems with anti-vertigo meds, etc.. When that doesn't work, many doctors are reluctant to look further, delaying tumor diagnosis. Sometimes that delay, particularly with headache, can be months and has huge health ramifications.

Istvan said...

You are right. The delay in diagnosis is a critical issue with brain tumors. I think early diagnosis is often a pure luck but it can also be the result of proper risk management by the doctor. As a potential patient, I would rather rely on proper risk management than pure luck. But here is the problem. Can proper risk management exist in patient care where the line between under-managing and over-managing risks is so narrow? Doctors do not want to over-manage risks because of the inherent cost with risk identification and risk assessment. Doctors have a tendency to avoid over-responding to risk events, so they ignore further risk identification and they miss the chance to be able to control the threat. These steps of risk management would however be critically important in reducing the impact of the eventual crisis and reducing the cost of the eventual crisis management, i.e., saving the life of the patient.