We would like to thank Jo D. for sharing her experiences with us. The support within the community continues to grow with these first-hand perspectives. We are withholding her last name over privacy concerns.
What were the events that led up to your diagnosis?
I had pain in my ribs/chest when I took a deep breath. One year passed without a clear diagnosis, but I kept pursuing medical care, and eventually had a surgery for biopsy and talc pleurodesis that provided the definitive diagnosis.
When were you diagnosed?
November 1, 2009
What were your biggest questions after being diagnosed?
What do I do, and where should I go for the expert medical and surgical care needed?
Was your mesothelioma caused by asbestos?
The doctors stated that it was caused by asbestos exposure which had occurred about 30 years ago.
If so, Can you remember coming in contact with asbestos?
I didn’t realize it at the time, but my exposure was second hand exposure in doing laundry that had asbestos fibers embedded in them. Also I worked cleaning the engine room of my Dad’s boat, and that was covered in asbestos. And thirdly, I used a lot of vermiculite in planting big containers of plants, not realizing that also had asbestos at that time. (70’s and 80’s).
Where did you turn to for information?
Internet, and friends and family who researched for me, and helped me find a center of excellence.
What was your reaction to hearing your diagnosis was cancer?
I cried, a lot. Then I began reading all I could and that was too depressing, so I quit.
What has been your family’s reaction?
My family and friends have been very supportive and helpful. Also I used a free website called CaringBridge, which enabled me to update to one place about progress and condition, and then selected family and friends could respond. That eliminated a myriad of phone calls. Reading the notes from friends was an enormous morale booster, I would encourage everyone to think about using this easy method of support.
What treatment options were you offered and what did you choose to do?
The doctors in Boston offered to do a lung surgery where they removed the lining of my left lung, and scrubbed out the cavity of the chest, followed by heated chemotherapy that went into the chest to cover all the possible areas of disease. The surgery was pretty aggressive, and the recovery was long, however, I’m alive with good quality of life.
Did you travel to a specialty center?
Yes, I traveled to Houston, Texas to get a second opinion before proceeding with surgery in Boston. The treatment offered there was intravenous chemotherapy, followed by the same surgery, (removal of the lining of the lung), and then radiation therapy. All of this would take about 4-6 months, of time, during which the patient needed to stay in the Houston area. I chose the Boston treatment which seemed to provide aggressive removal and treatment all in one swoop.
What message would you like to send to the mesothelioma community? (newly diagnosed or survivors?)
There are long term survivors of mesothelioma, and I intend to be one of them! Attitude counts for a lot, and willingness to pursue the treatment recommendations all add up to a better chance for survival.
Do you have any words of encouragement? Want to share your own story of survival? Let us know in the comments below.
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