Mesothelioma Patients Can Learn from My Husband’s Experience
- Cancer & Caregiving
- March 26, 2014
It has been more than 12 years since my husband, Brian, died of pleural mesothelioma. In the years since his death, I have related with countless families around the world who also lost loved ones to this disease. We all pray that a cure will be found soon.
Over the years, I took particular interest in any news items that indicated our prayers were being answered. But despite numerous reports of breakthroughs in mesothelioma research, new treatments and therapies have not made much of an impact on the number of deaths from this disease. In fact, in many places around the world, the toll continues to rise.
There is, however, some good news and reason for hope.
People with asbestos cancer now live longer than those who had this disease in the past. My recent research about treatment helped me understand why.
In short, undergoing one of three surgeries recommended for pleural mesothelioma — extrapleural pneumonectomy (EPP), a pleurectomy/decortication (PD) or a debulking — can be a key beginning to successful treatment.
All three of these procedures involve risk and possible side effects. But few people with an asbestos cancer would not choose to take the ray of hope these procedures provide.
I wish I understood this all those years ago.
Learn from Brian’s Experience
I know Brian would have done anything to extend his life. He was never given the opportunity. On the day he was diagnosed, his doctor informed him that his mesothelioma was too advanced for surgery to be an option and that palliative chemotherapy was the only thing available to him.
Although Brian and I accepted this at the time, I now wonder if this diagnosis was entirely accurate. My doubts come because of a number of facts and some quite disturbing questions.
Fact: Prior to experiencing shortness of breath (the first and only symptom of mesothelioma Brian displayed at the time of diagnosis), he had appeared to be perfectly well and had maintained a very active lifestyle. Once the fluid that had caused his breathlessness was drained from his chest, he again felt perfectly well. He was able to continue working and remained as active as he had prior to his diagnosis.
Question: If his cancer was so far advanced, how could this be possible?
Fact: Brian’s diagnosis was based solely on pathology of the fluid that was drained from his chest. At no time was a tissue biopsy taken, nor was he informed of which cell type his mesothelioma was.
Question: Without a tissue biopsy, how was it possible for Brian’s diagnosis to be 100 percent accurate?
Fact: Brian did not commence palliative chemotherapy until a year after his diagnosis.
Question: If Brian’s mesothelioma was advanced, why was chemotherapy treatment not needed earlier?
Fact: Doctors gave Brian a prognosis of three to nine months at the time of his diagnosis. He survived for two years and was active right up until three days before his death.
Questions: If Brian’s mesothelioma was advanced when he was diagnosed, how did he manage to stay active for so long and why did he survive for far longer than predicted?
Please Get a Second Opinion
The answer to these questions could be that at the time of diagnosis, Brian’s mesothelioma was not advanced at all.
Sadly, Brian did not ask for a second opinion.
I will never know if his diagnosis was wrong or if he would have been a candidate for an operation that may have extended his life.
I do know that given the chance, an operation would have given Brian reason for hope.
For him and for me, this would have been far better than living with no hope at all.
Detailed information regarding the procedures and treatments currently being performed on mesothelioma patients can be found at Asbestos.com.
Lorraine Kember is the author of "Lean on Me," an inspirational personal account of her husband's courageous battle with mesothelioma. She is an accomplished public speaker in Australia and is passionate about sharing her journey with cancer. Her website can be found at www.lean-on-me.net.