March 18, 2024 – Ken Aaron, 51, couldn't have been more surprised when he woke up from his first colonoscopy last February and told his doctor, „We found a tumor.“ There was no one there. The married father of two had been experiencing some very mild digestive discomfort before he scheduled his scan, but other than that, the man, who lives in the Adirondacks and is an avid hiker and skier, said: There were no major abnormalities for me.
„If I ate fried food, I would feel hopeless,“ he said. „It was more like, 'I don't want to eat that burger today, I don't feel comfortable sitting there,' but I don't even know if those symptoms are related to my cancer.“
When I heard the news that Aaron had Stage II. colorectal cancer – and recovered from the shock of the diagnosis – he quickly realized he needed to become his own advocate. Initially, this took the form of him collecting information, including a list of all the people who went to university and became doctors.
He then covered his case through a journalist's lens. At the time, he had no idea how important this would be or how it would put him at the forefront of cancer science, with little chance of recovery.
„I treated my diagnosis like I was researching a novel I was writing, and the story was me,“ he said. “I started thinking: what sources of information do I need to consult, what facts can I establish about my illness, what decisions do I need to make right away?”
Aaron is not alone in facing this diagnosis.Colorectal cancer ranks 3rd very common According to the American Cancer Society, more men and women are diagnosed with cancer in the United States. And the number of people under the age of 50 diagnosed with this disease is on an upward trend Since the 1990s – but experts don’t know why.
Aaron's first option is surgery to remove the mass at a local hospital. And at first, this made sense to him.
„When you get a cancer diagnosis, your first instinct is to say, 'I want this to stop,'“ he said, adding that he and his wife thought it would be wise to first contact a doctor friend. “She told us it was crazy not to go to a dedicated colorectal cancer treatment center that does all this.”
With that advice in mind, Aaron called 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. I started.
„I didn't know anybody. I couldn't drop their names. I just called the 800 number for Sloan Kettering,“ he says, adding that they soon arranged to meet at one of the New Jersey stores. added. „Their only questions are do you have a diagnosis and do you have insurance? I had the right answers for both.“
unexpected discovery
The next morning, Aaron and his wife drove five hours to Memorial Sloan Kettering, which happened to be the snowiest day of the winter. During their meeting with gastrointestinal oncologist Dr. Michael Foote, the couple was told all the same things Aaron's local surgeon had told him: He would be undergoing surgery to remove part of his colon. That's what it was.
But what happened next was something Aaron never expected.
„He said he wanted to look at the biopsy taken during the colonoscopy to see if there was a specific genetic defect that could be targeted for immunotherapy.“ said. “They said if I did that, it would be like winning the lottery.”
A few days later, his doctor called and told him that his tumor had a specific genetic structure known as mismatch repair defective (MMRd), which is present in 5% to 10% of all rectal cancer patients. When This put him in disfavor because it meant he might be eligible for cutting-edge immunotherapy clinical trials. trial It is an attempt to shrink it or eliminate it completely without chemotherapy, radiation therapy, or surgery.
„We were very excited when we heard Ken's results,“ Foote said. “Our clinical trial showed that rectal cancer patients who received immunotherapy had 100% tumor clearance, so we expanded the trial to other types of cancer, including colon cancer. We thought he was a good candidate for trial.“
But first he needed a PET scan to make sure the tumor hadn't spread. This also led to another shocking discovery. During the test, one of her lymph nodes lit up and a biopsy was scheduled to be performed immediately. The result: Aaron also has low-grade follicular lymphoma, which had nothing to do with his colon tumor.
Although Aaron is no longer eligible to participate in clinical trials because he currently has two cancers, the team still decided to give him pembrolizumab (Keytruda) instead of dostarimab (Gemperi), the drug being used in the trial. It didn't stop me from starting.
„Lymphoma is a cancer of the immune system, and we were planning to use immunotherapy to treat Ken's colon cancer, so this was an additional complication,“ Dr. Foote said. „At first I wasn't sure how effective it would be, but I decided to give it a try.“
In April, Aaron received the first of nine immunotherapy treatments with Keytruda infusions, 2 ounces at a time, every three weeks. Aaron had virtually no side effects, other than worsening his pre-existing gout.
“This is different from chemotherapy,” he said. “You can drive to and from the cancer center and go skiing or hiking the next day.”
Potential difficulties – and then miracles
After the fifth treatment, Aaron underwent another PET scan and colonoscopy. It showed he was making progress, but slowly compared to other patients in his clinical trial.
“It was frustrating,” he said. “But my oncologist said he thought my lymphoma might be the culprit. I had been given drugs to stimulate the immune system, but since lymphoma is a cancer of the immune system, it worked in the opposite direction. I explained that I might be being pulled over a little bit. ”
It was after the seventh treatment, a colonoscopy, and another scan that the miracle happened. There were no signs of tumor and the biopsy results were clean.
„There was no cancer detected, just scar tissue where the tumor was,“ he said. „It was a miracle. I still can't believe I can say this out loud.“
Following protocol, Aaron completed treatment and received his final treatment in September. Since then, he has had two PET scans and will have another one in June. He will now have a colonoscopy every four months.
“It’s not really over, it’s just a new phase,” he said. „This is why they have support groups for cancer survivors. It's not like you sit around and give high-fives. You've been in combat readiness, and now you're not, and you have a little bit of PTSD. It's definitely a traumatic experience.“
Aaron continues to be the de facto organizer of an online support group with fellow Sloan Kettering patients.
“We still support each other,” he said. „I still schedule a Zoom every other Tuesday at 3 p.m. We need each other and I know it helps to talk to each other about what we're going through. ”
Ultimately, Aaron said he came out of the situation with a new philosophy.
“The answer is to extend empathy to everyone you meet and do it probably more than I did every day,” he said. „It's not because you never know what someone is doing; that's true. But more than that, the world is a better place when you give grace and someone else does it.“ It will be.”
Aaron's tips for asserting yourself
Make sure your doctor listens to you
“If you think something is wrong, get answers,” he said. „You know your body best. If you feel something isn't right, don't leave it alone. If your doctor doesn't respond, find another doctor. Before getting diagnosed. , I'm happy to say that my GP was very attentive to my concerns, even if they were subtle. I don't know yet if they are related to my cancer. But I know someone whose initial concerns were ignored.“
Escalate the situation immediately
„Find a facility or hospital that specializes in your cancer and go there. I wanted to be the most boring case the doctor saw this week, not the most interesting.“
Find the best „Cancer Machine“ near you
„When I chose to go (to Sloan Kettering), I felt like I was caught in a 'gun machine,'“ he said. „By being a patient there, I was able to have countless advocates working on my behalf, an entire medical team immersed in the latest advances. If I hadn't gone there, I almost certainly would have would not have received the same treatment protocol.”
Seek treatment from a doctor
„Cancer asks a lot of questions that are very difficult to answer. Even if you want to advocate for yourself, it's hard to know if you're making the right decision,“ he says. I did. „Google has only gone so far, but by going to a place like[Sloan Kettering]even if things go sideways — and there are no guarantees in cancer, it can happen. There is definitely a possibility – at least for me, the „what if'' is unexpected. And when uncertainty is the hardest thing of all, it's comforting to know that you've made it. ”