Ken Aaron’s Cancer Journey: A Story of Resilience and Advocacy
Cancer diagnosis can be a life-altering event that leaves individuals grappling with fear and uncertainty. Ken Aaron’s journey with colorectal cancer is a testament to the power of advocacy, resilience, and the importance of being proactive in one’s healthcare. His story serves as an inspiration to many facing similar challenges, highlighting the critical role of self-advocacy in navigating the complexities of cancer treatment.
Discovering the Unexpected
Ken Aaron’s journey began with a routine colonoscopy that revealed a tumor, setting him on a path he never anticipated. Despite initial shock and disbelief, he quickly realized the need to take charge of his health and become his own advocate. His proactive approach, from seeking multiple opinions to exploring treatment options, paved the way for an unexpected turn of events that would change his life.
A Journey to Healing
After exploring various treatment options, including surgery at a local hospital, Ken Aaron’s decision to seek specialized care at renowned cancer centers marked a turning point in his journey. His persistence and determination led him to a groundbreaking clinical trial for immunotherapy, offering him a chance at a new lease on life. The discovery of a genetic marker in his tumor presented a unique opportunity for cutting-edge treatment, showcasing the remarkable advancements in cancer research.
A Beacon of Hope
Ken Aaron’s experience with immunotherapy, despite facing additional challenges with a secondary cancer diagnosis, underscores the resilience and courage required to overcome obstacles in the face of adversity. His commitment to his treatment plan, coupled with unwavering support from his medical team, exemplifies the transformative power of personalized care and innovative therapies in cancer management.
A New Beginning
As Ken Aaron completes his treatment and embarks on a new chapter post-cancer, his story serves as a beacon of hope and inspiration to others. His journey of self-discovery, advocacy, and healing embodies the spirit of resilience and strength in the face of adversity. Through his experiences, he imparts valuable lessons on the importance of empowerment, empathy, and perseverance in navigating life’s greatest challenges.
Aaron’s Tips for Advocating for Yourself
- Make sure your doctor listens to you
- Escalate the situation immediately
- Find the best ‘cancer machine’ near you
- Let your doctors take care of you
Embracing Empathy and Grace
Ken Aaron’s journey is a testament to the transformative power of empathy and grace in the face of adversity. His newfound philosophy of extending kindness towards others reflects his profound understanding of the human experience and the importance of compassion in fostering healing and resilience. Through his advocacy and resilience, he exemplifies the potential for positive change and growth, both within oneself and in the world at large.
Summary
Ken Aaron’s courageous battle with colorectal cancer highlights the impact of self-advocacy, resilience, and personalized care in navigating the complexities of cancer treatment. His journey serves as a beacon of hope and inspiration, showcasing the transformative power of innovative therapies and the importance of empowerment in overcoming adversity. Through his experiences, he imparts valuable lessons on empathy, grace, and perseverance, underscoring the profound impact of human connection and compassion in the face of life’s greatest challenges.
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March 18, 2024: When Ken Aaron, 51, woke up from his first colonoscopy last February and his doctor uttered the words “we found a tumor,” no one was more surprised than him. The married father of two had some very mild gastrointestinal discomfort before booking the scan, but other than that there was nothing significant about the writer, an avid hiker and skier who lives in the Adirondacks.
“If I ate a fried food, I would feel bored,” he said. “It was more like, ‘I don’t think I want that burger today; I feel like it won’t do me good,’ but I don’t even know if those symptoms were related to my cancer.”
As Aaron digested the news that he had stage II colonectal cancer – and overcame the shock of the diagnosis – he quickly realized he would have to be his own advocate. At first, this took the form of collecting information, including a list of everyone he went to college with who became doctors.
He then made his case through a journalistic lens. At the time he had no idea how important this would be or that it would lead him to the frontiers of cancer science and an unlikely recovery.
“I treated my diagnosis like I was doing research for a story I was writing, but the story was me,” he said. “I started thinking: What sources do I need to talk to, what facts can I establish about my illness, and what decisions do I need to make right away?”
Aaron is not alone in facing this diagnosis. Colorectal cancer is the third more common cancer diagnosed in men and women in the US, according to the American Cancer Society. And the number of people under 50 diagnosed with the disease has been on the rise since the 1990s, although experts aren’t sure why.
Aaron’s first choice: surgery at his local hospital to remove the mass. And at first this made sense to him.
“When you get a cancer diagnosis, your instinct is ‘get it out of me,’” he said, adding that he and his wife also thought it would be smart to reach out to a doctor friend first. “He told us we’d be crazy not to go to a center dedicated to colorectal cancer treatment where this is all they do.”
With that advice in mind, Aaron began cold calling cancer centers near his home, including the University of Vermont Cancer Center, Dana-Farber Cancer Institute in Boston, and Memorial Sloan Kettering Cancer Center in New York City. York.
“I didn’t know anyone, I couldn’t mention any names, I just called Sloan Kettering’s 800 number,” he said, adding that he immediately had an appointment scheduled at one of their locations in New Jersey. “Your only questions from him: Does he have a diagnosis and does he have insurance? He had the right answer for both.”
An unexpected find
The next morning, Aaron and his wife drove five hours to Memorial Sloan Kettering on what turned out to be one of the snowiest days of that winter. During that appointment with Michael Foote, MD, a gastrointestinal oncologist, the couple was told the same things Aaron’s local surgeon told him: that they would schedule surgery to remove part of his colon.
But what came next was a twist Aaron never expected.
“They told me they wanted to see the biopsy taken during my colonoscopy to see if I had a certain genetic deficiency that might qualify me for immunotherapy,” she said. “They told me that if I did it, it would be like winning the lottery.”
When his doctor called him days later to tell him that yes, his tumor had a specific genetic structure known as mismatch repair deficient (MMRd) (present in 5% to 10% of all rectal cancer patients), I was baffled, because this meant I could qualify for a cutting-edge clinical immunotherapy program. rehearsal try to reduce it – or make it go away completely – without chemotherapy, radiation or surgery.
“We were so excited when we got Ken’s results,” Foote said. “In our clinical trial, we knew that the tumors in 100% of rectal cancer patients who received immunotherapy disappeared, so we expanded the trial to other types of cancer, including colon cancer. We thought he would be a good candidate for trial.”
But first he would need a PET scan to make sure his tumor hadn’t metastasized. This also led to another shocking finding. During the scan, one of her lymph nodes lit up, so a biopsy was scheduled immediately. The finding: Aaron also has low-grade follicular lymphoma, which had nothing to do with his colon tumor.
Because Aaron now had two cancers, he no longer qualified for the clinical trial, but that didn’t stop his team from starting pembrolizumab (Keytruda) instead of dostarlimab (Jemperli), the drug being used in the trial.
“This was an additional complication, since lymphoma is a cancer of the immune system and we would be using immunotherapy to treat Ken’s colon cancer,” Foote said. “At first it wasn’t clear how effective it would be, but we decided to give it a try.”
In April, Aaron received the first of his nine intravenous Keytruda immunotherapy, 2 ounces at a time, every 3 weeks. Aaron had virtually no side effects except that his existing gout got worse.
“This is not like chemotherapy,” he said. “I can drive to the cancer center and back and even go skiing or hiking the next day.”
A possible obstacle in the way and then a miracle
After the fifth treatment, Aaron underwent another PET scan and another colonoscopy. He showed that he was making progress, but was slower compared to other patients in the clinical trial.
“That was frustrating,” he said. “But my oncologist said he thought my lymphoma could be the reason: they were giving me drugs to activate my immune system, but lymphoma is a cancer of the immune system, so he explained that it could be pulling in the opposite direction. a bit.”
Only after her seventh treatment, a colonoscopy and another scan, did a miracle happen: there was no sign of the tumor and the biopsy came back clean.
“No cancer was detected and there was only scar tissue where the tumor was,” he said. “It was a miracle; I still can’t believe I’m saying this out loud.”
Per protocol, Aaron completed his treatment and received his final treatment in September. Since then, he has had two PET scans and another in June. He will have colonoscopies every 4 months for the foreseeable future.
“It’s never really over; it’s just a new phase,” he said. “That’s why they have support groups for cancer survivors. It’s not because they sit and high-five each other. You’ve been on the warpath and now you’re not, and you’ve got a bit of PTSD. “It is definitely a traumatic experience.”
Aaron remains the de facto organizer of an online support group with his fellow Sloan Kettering patients.
“We’re still helping each other,” he said. “I’m still scheduling our Zooms every other Tuesday at 3 p.m. We need each other and I know it helps us all to talk to each other about what we’re going through.”
In the end, Aaron said, he came out of this situation with a new philosophy.
“The answer is to extend empathy to everyone you meet and do it perhaps more than you did every day,” he said. “It’s not necessarily because you never know what’s happening to someone. That’s true. But, even more than that, if you extend grace and someone else does it in turn, the world becomes a better place.”
Aaron’s Tips for Advocating for Yourself
Make sure your doctor listens to you
“If you think something is wrong, get an answer,” he said. “You know your body best. If you feel like something isn’t right, don’t let it go. If your doctor doesn’t respond, find another one. Before I was diagnosed, I’m happy to say that my primary care doctor was very attentive to my concerns, even if they were subtle; I’m still not sure they were related to my cancer. But I know others whose initial concerns were ignored.”
Escalate the situation immediately
“Find an institution or hospital that specializes in your cancer and go there. “I wanted to be the most boring case my doctor saw all week, not the most interesting.”
Find the best ‘cancer machine’ near you
“By choosing to go to [Sloan Kettering]”I felt like I was hooked up to a ‘cancer machine,'” he said. “By becoming a patient there, I recruited countless advocates on my behalf, an entire medical team familiar with the latest advances. They almost certainly wouldn’t have put in the same treatment protocol if I had not gone there.”
Let your doctors take care of you
“Cancer raises a lot of questions that can be very difficult to answer, and while you want to advocate for yourself, it’s hard to know if you’re making the right decision,” she said. “Google only goes so far, but by going to a place like [Sloan Kettering], it was a relief to know that even if things went wrong (and they certainly could have, since with cancer there are no guarantees) at least I took the ‘what if’ off the table. And in a time when uncertainty is the hardest thing of all, it’s comforting to know that you’ve done it for yourself.”
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