Looking for Inspiration

Running on treadmill

Running on treadmillby Mary Hesdorffer, NP, Executive Director of the Meso Foundation

I found myself on the treadmill looking for inspiration to go the extra mile. Two miles into it and I am running out of steam. I am not an ESPN fan, which means that I have to take inspiration from another source. Into my mind pops up the image of Joe Friedberg, MD.

Of course, I wonder, who else would channel Joe Friedberg while on a treadmill? Am I losing it?

As you know, Joe is a champion in the field of mesothelioma, toughing it out in the operating room with a grueling procedure, which has recently reported some promising results. I recalled a conversation with Joe when he suggested that to complete a pleurectomy decortication, one has to be totally committed to going the extra mile (as these operations last up to 8 hours) and one has to be willing to persevere through fatigue, and physical and mental challenges.

There has been much debate about surgery – extrapleural pneumonectomy (EPP) vs. pleurectomy decortication (PD) vs. those who believe that surgery should not be offered to patients with mesothelioma, and advocate for palliative care only.

I think about Joe in these debates, and his honesty and lack of bravado when he simply states that “we don’t know what is the best surgical option to offer patients and that all surgery in this disease is experimental.” Though the uncertainty is unsettling, the honesty is refreshing.

Recently, Dr. Friedberg and his team at UPENN have launched a new clinical trial that will randomize patients to either a pleurectomy decortication or a pleurectomy decortication coupled with photodynamic therapy. Joe has spent many years championing photodynamic therapy as an adjuvant therapy to his pleurectomy decortication surgery, making this clinical trial a one-of-a-kind move to get closer to the truth.

Doing 3 miles on a treadmill no longer seems daunting.

Here is why Joe’s courage is so important and why I hope others follow in his footsteps. It is well-known among researchers that most surgical studies have an inherent bias to them. In other words, a surgeon’s excellent numbers may be produced not only by their skill, but also by choosing to operate on patients who have the best chance to tolerate the surgery and do well after. The fact is, surgery often results in a surgical remission, but unfortunately, in mesothelioma, the cancer generally returns after a certain period of time. To extend the remission, surgeons use specific adjuvant therapies to lengthen the time to progression and, of course, create the best case scenario to prevent the return of disease. This is the crux of the discussion about what will kill the cells that are waiting like seeds in a garden ready to sprout into recurrent disease.

I am appalled to hear so many surgeons in this disease state quite frankly that their approach works and there is no need to do a randomized trial which will eliminate bias from their results. Worse yet are those surgeons who boast that their patients do better in their hands, with their procedure yet when I scour the literature there are no published reports in scientific journals. In academic medicine there is a phrase “If it isn’t published, it never happened.” In other words it is expected that you submit your results to a peer reviewed journal to demonstrate that your outcomes are accepted by your peers and your data has been analyzed by, and scrutinized by unbiased reviewers who are experts in the field of surgery. There is no room for arrogance when we are losing patients in these procedures. We need to know what is the true statistical difference. The gold standard is to compare a new hypothesis and test it against the standard to see if this really is a significant improvement.

Dr. Friedberg has reported some impressive results with his combination of pleurectomy decortication combined with photodynamic therapy, and now he’s willing to take a step further to understand if there is a difference between patients undergoing pleurectomy decortication alone from those getting both the surgery and the adjuvant therapy.

This is what the mesothelioma community needs – “proof of the pudding.” We truly do not know what is better so we need to strip back the notion of “my treatment works, and I don’t need to prove it.” Randomized clinical trials can help us find a gold standard of treatment for mesothelioma.

I guess, what that means is that I, too, should be going the extra mile on this treadmill. Mile 4, here I come.

1 Comment on "Looking for Inspiration"

  1. Dear Mary,
    Collecting and studying data has always been (supposedly) a part of the scientific method. And adjuvant therapies have “been around” since my husband had his EPP and “heated chmo wash” followed by radiation and the platins and other chemos in 2000. It seems to me that there is an Information Purgatory where information collected is locked up and forgotten instead of studied. My husband was under the impression that Science didn’t waste information, not even when it was clear his case was “hopeless” because he thought that someone would benefit down the line. Any doctor looking for “Inspiration” should make certain that the people who died with OLD treatments are shown as “Pavers of the Way” not as “Medical Waste.” (The NEW should GROW out of the Old it replaces.)
    A Meso Widow

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