Survivor Insight Series | Mesothelioma Survivor Advocates Traveling for Treatment
- Stories from Survivors
- February 22, 2012
We would like to thank Karen S. for sharing her mesothelioma experiences with us and the community.
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. We are withholding Karen’s last name over privacy concerns.
What were the events that led up to your diagnosis?
I had been sick with various upper respiratory infections for quite a few years. I had also been hospitalized for pneumonia on two separate occasions. I was seeing a supposedly “top” pulmonary specialist during these years, and after each visit he would tell me that I had some “gunk” on the lining of my lung and it was nothing to worry about. Of course I didn’t know any better and obviously neither did he. My internist was getting very upset with the diagnosis and demanded that the pulmonary specialist do a biopsy. While in the hospital, after the biopsy, I was told I had mesothelioma and had 6-9 months to live.
When were you diagnosed?
I was diagnosed in April 2009.
What were your biggest questions after being diagnosed?
When I was told that I had cancer I was stunned. My doctor had failed me big time. I can only say that if a doctor doesn’t know what they are looking for they should ask for the advice of his peers – not play God. After hearing the news, I set up an appointment with an oncologist that I completely trusted, as my mother had been seeing him for 9 years for her lung cancer (asbestos unrelated). Then I went straight for the computer where I learned about Mesothelioma, the options and treatments.
Of course my biggest question was how we were going to treat this disease and how much time I had left.
Was your mesothelioma caused by asbestos? If so, can you remember coming in contact with asbestos?
I was one of the unlucky ones and contracted mesothelioma from my husband who worked with asbestos.
What has been your family’s reaction?
My family’s reaction was the same as mine – how could this happen? What kind of hope did I have? It all seemed surreal to us.
What treatment options were you offered and what did you choose to do?
When I met with Dr. Sugarbaker he proposed that I receive chemotherapy to reduce the size of the tumors before we talked about any other treatment. I went to my own oncologist in New Jersey and I received Alimta and Cisplatin. After numerous treatments, the tumors shrunk in size and we returned to Dr. Sugarbaker’s office in Boston. He then suggested that I have my lymph nodes tested and if they were clean then I would be a good candidate for his treatment. I had 19 nodes removed and all were clean of any cancer. My next step was to remove my left lung and pleural with a chemo wash. I spent one month in Boston – two weeks in the hospital and two weeks at a nearby hotel (which the hospital paid for) so that I could be seen by a visiting nurse every day and a return visit to Dr. Sugarbaker in two weeks.
After three months, I was healed enough to receive radiation which I did for 6 weeks. I had to travel to Boston from New Jersey every 3 months for 1 year, 4 months after 2 years and every 6 months after that. Was all this worth it? You bet! I’m still here after 2 years and 4 months and I am going to have the best positive attitude to live a long happy life.
How did you find Doctor Sugarbaker?
I found Dr. Sugarbaker on the invaluable internet and sought him out as the first doctor that I would speak with because of his extensive knowledge of mesothelioma. He also just deals with mesothelioma.
What concerns did you have about traveling for treatment?
I had no concerns about traveling to receive the best treatment. It was my life that we are speaking about. Dr. Sugarbaker has patients from all over the world.
What message would you like to send to the mesothelioma community? (newly diagnosed or survivors?)
My advice for new mesothelioma patients is to research, research and work with a knowledgeable and top notch doctor in this field. Don’t just see an oncologist. If you have to travel for the best care – then do it. There are a few hospitals that will help you look into travel costs and after care stay.
Ben Leer is an outreach coordinator with The Mesothelioma Center. He works toward increasing education and awareness of mesothelioma and other asbestos-related diseases. Part of Ben's job is to reach out and engage with patients, caregivers and family members on our online communities.