Mesothelioma Awareness Day: A Patient's 10-Year Journey and Perspective

Michael Cole's decade-long journey with malignant pleural mesothelioma (MPM) offers clinical oncologists profound insights into patient resilience, the impact of treatment choices, and the critical importance of the doctor-patient relationship. In recognition of Mesothelioma Awareness Day of September 26, Cole reflected on his experience, from diagnosis and complex surgeries to managing recurrences, stress, and long-term quality of life.

The Clinical Course: Surgery, Chemotherapy, and Evolution

Cole was diagnosed in the spring of 2015. By the first of June, he underwent an extrapleural pneumonectomy (EPP).

"In that EPP, they removed not only the right lung but also part of the diaphragm, the pleural lining around the heart and the stomach," he recounted. Significant tissue removal was necessary because the cancer had spread beyond the lung.

Following recovery, Cole began platinum-based chemotherapy, but he was limited in his tolerance after 4 rounds.

His first recurrence came at the 2-year mark. The complexity of managing MPM was evident when surgeons found more extensive disease than anticipated.

"They found more. When they got in there, they found more than they expected... they took more ribs in the second one, in that next surgery. And also, it had my intestines... they had to take part of the colon,” Cole said.

Recurrences over the following years were managed with a combination approach. "They did targeted radiation... in conjunction with that, I started immunotherapy, [nivolumab (Opdivo)]."

He highlighted the effectiveness of this multimodal strategy, particularly the use of stereotactic body radiation therapy (SBRT) for challenging spots and lymph nodes. "That time was much easier to tolerate and seemed to be very effective."

Cole’s course demonstrates the long-term potential of evolving treatments, with him eventually stopping immunotherapy in mid-2023 due to adverse effects, only to resume it following a new tumor excision in 2025.

A Critical Look at Treatment Tolerance and Choice

Cole offered a strong perspective on the trade-off between tumor control and quality of life, particularly regarding chemotherapy.

"I'm not a fan of the chemotherapy. It looks good on paper. It's not good [for me] in reality, because it took me about 2 years to get over that chemotherapy, which, if that's all you're getting, that's about as long as you're going to live anyway with it. And so, what's the point?"

This sentiment shaped his later treatment decisions. When recurrence occurred, he was firm: "When my first recurrence happened, [my team said], ‘We want to do chemotherapy again.' I think no. My wife and I have talked about it. We're not doing it again, plain and simple... The chemotherapy was just too hard on the body, and it created too many other problems."

Cole stressed the need for considering the patient's long-term future: "I think from the very beginning, there has to be a there has to be serious consideration given to protecting the long-term health of the body... I think that now, with all the different things... more consideration can be given to how much is this going to damage the body in the long run? And are there other things that we can do that are going to make this work better and give them a chance to last longer?"

The Patient’s Job: Minimize Stress and Maintain Function

Cole emphasized the mental and physical disciplines that he believes were crucial to his survival.

• Minimizing Stress: His mantra came from his physician. "You let me worry about that. You just take care of yourself." Cole’s body offers immediate feedback on stress. "Stress causes me immediate physical, an immediate physical, reaction. When I experience stress, my pain level goes up. I start getting short of breath." His strategy became: "The positive attitude and not worrying about things... to reduce stress is the most important thing for me."
• The Need for Routine and Activity: Cole continued working as long as possible, eventually pivoting to find a new structure. After stopping work, he found it "harder to be to not have anything regular to do." He now focuses on "establishing a useful routine" through church and volunteer work.
• Professional Mental Health Support: A key turning point for Cole was following his doctor’s advice to see a psychiatrist. The psychiatrist explained the "vicious circle" of his condition, where chronic physical stress amplified emotional reactions—a phenomenon Cole also likened to PTSD symptoms.

The Critical Role of the Care Team

Cole’s deepest appreciation is reserved for his care providers. He views the physician's role as providing confidence and reassurance.

"The patient needs the reassurance, to hear, ‘I understand what is going on here. I'm doing the best I can to treat you, and I care about you. You take care of yourself, and I'll take care of my part.’"

"I have had nothing but good experiences with all the people who have helped me over the years,” Cole shared, recalling a time his oncologist called him at 7:00 PM to discuss test results they had been waiting on. "When they go that extra mile, people really notice and really appreciate it."

Cole concluded with a message of hope and determination, a philosophy rooted in acceptance and gratitude: "I just kept telling myself, you know, I can endure anything for a little while, and this isn't going to last forever... My life's been good in so many ways for these 10 years. I'd have to say, some of you know a lot of it has been some of the best years of my life."

Michael Cole is a mesothelioma survivor and contributor for the Mesothelioma Center at Asbestos.com.