My Dad's Diagnosis

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April 20, 2006

Mesothelioma Roller Coaster

After being told my father most likely had mesothelioma on Thursday, April 7, my family was devastated. We would have to wait until Monday, April 10 for the official pathology report, so it was a very long weekend. My father stayed in the hospital that weekend because he had a chest tube in place, draining off the last of the pleural effusion which had caused his breathing difficulties over the last 6 weeks. He was on heavy pain medication during that time, so how much he understood, I'm not sure. I know he realized this diagnosis wasn't good, but I think the medication helped him to relax and to sleep through this most stressful weekend.

On Monday, April 10, we knew the pathology reports were expected to be back. We waited the entire day for the doctor to arrive and, around 5:00 p.m., an oncologist we'd never met appeared at the door. He introduced himself as my brother and I settled into my one of my father's bedside chairs. My mom sat in the other one, all of us waiting for the official report. Yes, my father has mesothelioma. No, it's not curable. It has already embedded in the chest wall. Radiation is not possible because it's too large of an area. He might have 6-9 more months. The only option is chemo, which might add 3 months onto his life. Stage? There's no standard staging system for mesothelioma, so if he had to guess, he'd say stage 3, going on stage 4. How can he tell us my dad is going to die with no emotion whatsoever? I felt physically ill, and experienced a raw form of fear and anxiety I'd never felt before. How could they be talking about my dad?

Fortunately, my brother, sister and I had all prepared ourselves for this moment. In preparation, we had been researching mesothelioma on the Internet. We knew there were options for treatment which could significantly increase survival. We knew there were specialists in this field who were doing amazing things. We knew mesothelioma is rare, and asked the oncologist how many cases he'd seen. In the past two years he had seen one case. No, we immediately decided we were not going to put our father's health into these doctors' hands. They were too pessimistic and not supportive at all of aggressive treatments.

In fact, both my father's primary doctor and the oncologist, when told we had planned to seek a second opinion in another state, expressed great concern for my father traveling. I wanted to scream at them, "You tell him he's got a terminal illness, that he has maybe 6 months to live, yet not to travel for a second opinion?! What do we have to lose?!" But I didn't yell at them; I quietly noticed their demeanor, their territoriality regarding the wonderful doctors in our area. They all recommended the University of Kansas Medical Center, which is, not coincidentally, where they all were trained. Yes, KU has a cancer center. But no, KU does not specifically treat mesothelioma. How can they treat this illness if they see it once every two years?!

I immediately got on the phone and contacted Brigham and Women's Hopsital in Boston, Massachussetts. One of the top mesothelioma specialists in the country, Dr. David Sugarbaker, leads the department of thoracic surgery there. He has pioneered new aggressive surgical treatments that have significantly extended the lives of mesothelioma patients. They can have a very good quality of life as well. What the hell did we have to lose?

Dr. Sugarbaker was able to get my dad in to see him exactly 8 days after his diagnosis. On Tuesday, April 18, my parents and my brother arrived at Brigham and Women's Hospital to meet Dr. Sugarbaker, as well as three other mesothelioma patients scheduled there that day. They said immediately they knew this was an environment of hope. Where before there was nothing but doom and gloom, here there was help for this rare form of cancer.

After examining my dad and looking at his CT scan and chest MRI, preliminary reports showed the tumor had not, in fact, attached to the chest well. That would immediately move my father from stage III up to stage II. He's still got a fighting chance to even be stage I. We also discovered they would need a PET scan to more thoroughly see where the tumor had, if at all, spread, and also a lymph node biopsy. Neither of these had been done at home. I suspect when they saw mesothelioma as the diagnosis, they really didn't see a need. Afterall, their mentality is that these patients have no hope for survival anyway.

So today, April 20, as we wait for the results of the PET scan, my parents and brother are sightseeing in the Boston area. I know they wish it were an actual vacation and not a medical crisis that took them there, but this is a man who just a week ago doctors advised against traveling. He handled the plane trip to Boston like a pro, has been eating well, and has even gained five of the ten pounds he had lost back. He's tired, but who wouldn't be after having been completely inactive due to an undetected pleural effusion for the last two months?

We know that, no matter what stage he's eventually found to be in, mesothelioma will be a tough battle to fight. However, if he's a candidate for the trimodality treatment approach--surgery, chemo and radiation--he's got a fighting chance for a future. Why in heaven's name did the doctors here not even tell us that, even though there are no specialists in Kansas City, there's a wonderful doctor in Boston who might be able to help? Even if we had gone to Boston and heard the exact same thing we heard here, I'd have faith in that prognosis because it came from someone who truly knows this disease. However, as it has happened thus far, we still have a lot of reason to hope. We're praying the PET scan shows no tumor advancement, and that his lymph node biopsy is negative. If so, my dad has a chance when no one here believed he did.

I will write more as the new test results come back. Please help me pray for a miracle.

Posted by Cmland on April 20, 2006 01:00 PM


Thank you for writing your story! We'll be thinking of you!

Thank you for posting what your dad has been through what has happened now? My uncle has just been diagnosed with mesothelioma and is now scheduled to have the lining removed. Please keep in contct and let me know the update on your dads health now, i hope he is well.

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