Update August 2005

One of the most bothersome aspects of having a “universally fatal” cancer and then being in a state of having “No Evidence of Disease” or NED, is that you really don’t believe it’s true and you are always waiting for the other shoe to drop. Waiting for the grim reaper to call isn’t fun and unlike other cancers with a known “cure rate” the fear with mesothelioma doesn’t fade away with time. Mesothelioma is a constant concern for all of us who have it, whether clear of tumor or still fighting known outbreaks.

Conventional wisdom used to be that mesothelioma was a cancer that didn’t metastasize easily but this observation may turn out not to be true. Patients with mesothelioma rarely lived long enough for metastatic disease to be an issue and now that more patients are living longer, reports of metastatic disease are starting to appear. Rigorous follow up and careful tracking of statistics for recurrence needs to be conducted to test out this suggestion.

There are certain aspects to mesothelioma that make the process of tracking recurrences both more troublesome and more difficult. The troublesome part is dealing with the near certainty that mesothelioma will come back, either in the original location or, ever more frequently, as a metastatic cancer. The difficult part is that mesothelioma was hard to diagnose to start with and it doesn’t get any easier after treatment.

Most patients who are diagnosed with mesothelioma originally presented with either a pleural or abdominal effusion, a rather hard to miss condition. Once the patient has undergone surgery such as an extrapleural pneumonectomy (EPP) or a pleurectomy and decortication, (P&D), the effusion warning sign is muted or obliterated. The only way to tell if something is really wrong is a series of harder to diagnose conditions such as tissue thickening, the appearance of nodules or increased metabolic activity. Unless something pops up on the exterior (lumps under the skin or bumps between the ribs) these signs may go undetected for quite some time unless the patient undergoes repeated radiological scans (CT, PET or the newer combination scan, the PET/CT fusion), any one of which applies significant doses of radiation which carry long-term, down-stream risks for radiation induced cancers. Even pain or increase of pain isn’t that great of an indicator since many patients continue to have significant post-surgical pain and suppress it with heavy doses of pain killers or narcotics.

Living with this expectation of recurrence has been personally very difficult. I speak from experience since I have now had two separate occasions when PET/CT scans have highlighted a hot spot deep inside the body, invisible except for a slight thickening on the CT scan and an elevated uptake of isotopic sugar in the PET scan. The first occurrence happened one year after surgery. Since there was no change in subsequent scans, we have come to the conclusion that the increased activity at this location is caused by irritation of the pericardial wall, caused by the plastic patch that was attached there. The second occurrence was in July of 2005 and it appeared in a deeply buried location near the esophagus and behind the heart; impossible to reach with a biopsy needle and too low grade to warrant exploratory surgery. The wait is now on again, to see if this area grows, stabilizes or recedes and the dilemma this creates is that monitoring the location requires more doses of radiation.  

This brings me to the subject of a test that will shortly be available in the United States and is already available in Australia and Europe. I am referring to a mesothelioma specific serum test called Mesomark. I am currently in the process of arranging for my blood to be drawn, centrifuged, frozen and sent to a lab in Australia to determine if there is any sign of soluble mesothelin-related proteins (SMRP’s). I am hoping to validate the above diagnosis by my physicians using this test. SMRP’s have proven to be present in the blood and urine at elevated levels when mesothelioma is active and back to normal after debulking surgery. The test has been in development for many years and trials were conducted to test its accuracy. Mesomark has proven to be specific only to mesothelioma (it will not give false positives for prostate, breast or lung cancers among others) and it has proven to be 84% predictive of mesothelioma when mesothelioma is active. The remaining 16% of cases were patients with proven mesothelioma but where the test failed to register strongly enough.  

In three cases there were subjects who had significant asbestos exposure but who showed no signs of the disease. These then developed mesothelioma in 1 to 3 years after testing positive with the Mesomark test. The biggest advantages to Mesomark are that the test is non-invasive and can be repeated as many times as needed without any effect on the patient. It also promises to be cheaper than PET/CT Fusion scans which can cost up to $3,800 per test. A positive Mesomark test may require other tests or a biopsy to confirm a diagnosis. The test isn’t 100% conclusive but it is a start. Further trials and study of patient records may improve the accuracy of the test and trials are underway right now in the USA to calibrate the test against control subjects using proven serum data from Libby Montana.

More information on the Mesomark test can be obtained by visiting the web site of Fujirebio Diagnostics Inc. http://www.fdi.com/mesomark/ 

Bibliography:

The American Journal of Oncology Review, April 2004, Vol. 3 No. 4

The Lancet, Saturday 15 November 2003, Vol. 362 No. 9396 Pages 1612-1616

Until my next report, Klaus A. Brauch

© 2000-2006 Klaus A. Brauch. All rights reserved.