In this week’s Survivor Insight, Karen R., a mother and wife, shares her mesothelioma experiences with us and the community. We would like to start by thanking Karen for sharing this personal moments with us all. We are withholding her last name over privacy concerns.
What were the events that led up to your diagnosis?
I went for an annual check-up and decided due to family history to get an optional (not covered by insurance) heart scan. The doctors detected fluid around my lungs during this scan. If I had not chosen to get this optional scan the cancer would have gone undetected for much longer. Therefore it was a miracle that we found the cancer as soon as we did.
After the fluid was discovered I went through many weeks of testing and procedures to find the cause of the fluid. It took them 6 weeks of testing to finally determine that I had mesothelioma.
When were you diagnosed and with what type of mesothelioma?
Doctors discovered the fluid on my lungs in March of 2006, but I wasn’t officially diagnosed with mesothelioma until late July 2006. I had malignant pleural mesothelioma of the epithelial type.
What were your biggest questions after being diagnosed?
How much time do I have left
That was my biggest question. I had 2 sons still in high school and my daughter was to be married in a year, and after my diagnosis the question that kept running through my mind was “will I be around to see these life events?”
What are my treatment options?
What was your reaction to hearing your diagnosis was cancer?
My initial reaction was shock and anger. I have always lead a healthy lifestyle (working out, eating right, never smoked and had never worked around asbestos that I could recall)
What has been your family’s reaction?
The family’s reaction was mostly disbelief. They wanted 2nd opinions, and couldn’t understand how such a young, healthy person could get cancer.
Was your mesothelioma caused by asbestos? If so, can you remember coming in contact with asbestos?
I can’t recall ever coming into contact with asbestos, but after researching our past we found that I contracted Mesothelioma from “take-home exposure.” My husband is an electrician and he worked with some products that contained asbestos materials.
Where did you turn to for information?
The internet was my main source of information. I Googled mesothelioma and found treatment options, types of the disease, survivor stories and horror stories. In my case many of the stories I found were sad stories, which in hindsight, was unhelpful. Finding out that the survivor rate for this disease is very low was not good for my mental state.
What treatment options were you offered and what did you choose to do?
The only option I was given was total EPP surgery with 30 radiation treatments and chemotherapy with Cisplatin and Alimta.
Did you travel to a specialty center?
Yes, I live in a small town with limited cancer resources so we traveled to Massachusetts General Hospital in Boston. I was treated by their thoracic oncology team. They were amazing and I would recommend them to anyone with this disease.
What have you found to be most helpful in dealing with your diagnosis?
Having a strong support system in my family is what helped me the most. My husband was my rock; I don’t think I could have gotten through all of the treatments without him. He never let me give up.
We hope that these Survivor Insights provide you with comfort and hope. If you would like to share your experiences with others that are going through mesothelioma treatment, please feel free to contact the outreach team at firstname.lastname@example.org. We are always looking to spread mesothelioma knowledge with others. If you would like to become a member of our mesothelioma community, you can join us on Facebook, follow us on Twitter, or comment in the area below.