UPDATE - Issue 22 - Summer 2005
Consequences of misdiagnosis
Ted Clucas's story by Professor Roger Kirby
Ted Clucas, one of the most effective and dynamic supporters of the Prostate Research Campaign UK, first presented to his GP in 1995 with symptoms incorrectly diagnosed as a urinary tract infection. He also had a mildly elevated PSA. The symptoms continued over a two year period. Antibiotics had been prescribed throughout, even though no actual evidence of infection in multiple urine cultures had been found. The raised PSA had for two years been assumed (quite wrongly, as it turned out) to be due to this infection and therefore required no investigation or action.
Ted approached me for a second opinion in September 1997, when his PSA level was found to be 9.8 nanograms per millilitre (ng/ml). After the usual tests and discussion of the available treatment options, Ted underwent radical prostatectomy. Pathological examination revealed extensive disease within the gland and several positive margins. Moreover, his post-operative PSA level never fell below 0.5 ng/ml and started to rise within three months of surgery.
Second-line radiotherapy (70 Gy over six weeks) stabilized his PSA level for two years at < 0.2 ng/ml. It then began to rise again. When the PSA rose above 1 ng/ml, he chose to start hormone therapy with the antiandrogen bicalutamide (Casodex™) 50 mg. This lowered his PSA level to < 0.1 ng/ml within 3 months; however, after two years of starting Casodex™, Ted decided to discontinue this therapy as he wished to try alternative treatments.
Subsequently, his PSA level gradually increased to 23 ng/ml and, in May 2004, he developed breathlessness and blood in the sputum. Computed tomography scan and a bone scan revealed that he had developed lung metastases in the absence of bone metastases. A lung biopsy was performed, revealing adenocarcinoma of prostatic origin. Because of this, he elected to restart hormonal monotherapy (Casodex™ 150 mg).
By the beginning of 2005, his PSA level had fallen to 2.7 ng/ml and there had been marked regression of the pulmonary metastases. This response is being maintained at the time of writing. Ted remains otherwise fit and well. Chemotherapy with docetaxel (taxotere) will only be considered if the PSA value starts to increase in spite of treatment with Casodex™. Ted is a uniquely positive individual and he is optimistic about the prospects of a prolonged continuing response to bicalutamide and the possibility of subsequent chemotherapy producing a further remission.
Ted Clucas on his Harley Davidson
Ted's story has recently been recorded on a teaching video and published in both the Daily Mail and the medical journal Prostate Cancer and Prostatic Diseases to illustrate the dangers of ignoring a raised PSA and urinary symptoms which were wrongly ascribed to infection rather than prostate cancer. In an attempt to make a difference to prostate cancer awareness and treatment, shortly after his operation in 1999 Ted ran a half Marathon for the Prostate Research Campaign UK raising £47,000, a sum equal to the total amount of money the Government were spending on prostate cancer research at the time! This encouraged me to run my first London Marathon in 2000. Ted remains an inspiration to us all, as well as one of our most trusted and effective advisors.