March 18, 2024 – When Ken Aaron, 51, woke up from his first-ever colonoscopy last February and his doctor uttered the words “We found a tumor,” nobody was more surprised than him. The married father of two was experiencing mild gastrointestinal distress before ordering the scan, but apart from that there was nothing significant to complain about with the author, an avid hiker and skier who lives within the Adirondacks.
“If I ate a fried meal, I would feel stupid,” he said. “It was more like, 'I don't think I want this hamburger today – I don't feel like it tastes good,' but I don't even know if these symptoms are related to my cancer.”
When Aaron heard the news that he had Stage II Colon cancer – and overcame the shock of the diagnosis – he quickly realized he needed to be his own advocate. This initially took the shape of gathering information, including an inventory of all of the people he went to school with who became doctors.
Next, he examined his case through a journalistic lens. He had no idea on the time how essential this may be, or that it will lead him to the frontiers of cancer science and an unlikely recovery.
“I treated my diagnosis like I was researching 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 could I find out about my illness, and what decisions do I need to make right away.”
Aaron shouldn't be alone with this diagnosis. Colon cancer is the third most common According to the American Cancer Society, men and ladies within the United States are diagnosed with cancer. And the number of individuals under 50 diagnosed with the disease has increased ascending for the reason that Nineteen Nineties — although experts aren't sure why.
Aaron's first option: surgery at his local hospital to remove the mass. And at first it made sense to him.
“When you get a cancer diagnosis, your instinct is to say, 'Get it out of me,'” he said, adding that he and his wife also thought it clever to succeed in out to a health care provider friend first. “She told us we would be crazy if we didn’t go to a special colon cancer treatment center where this is all.”
With that advice in mind, Aaron began 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.
“I didn’t know anyone — I couldn’t name names — I just called Sloan Kettering’s 800 number,” he said, adding that he immediately had an appointment at one in every of their New Jersey locations. “Your only questions: Do you have a diagnosis and are you insured? I had the right answer to both.”
An unexpected finding
The next morning, Aaron and his wife drove the five hours to Memorial Sloan Kettering on one in every of the snowiest days this winter. During this appointment with Dr. Michael Foote, a gastrointestinal oncologist, the couple was told the identical thing Aaron's local surgeon had told him – that he was scheduled to have surgery to remove a part of his colon.
But what got here next was a twist Aaron never expected.
“He told me that they wanted to look at the biopsy taken during my colonoscopy to see if I had a specific genetic deficiency that might qualify me for immunotherapy,” he said. “They told me if I did that it would be like winning the lottery.”
When his doctor called days later and told him that his tumor had a particular genetic makeup referred to as mismatch repair deficient (MMRd) (present in 5 to 10% of rectal cancer patients), He was devastated since it meant he would potentially qualify for a state-of-the-art immunotherapy clinic Attempt to attempt to shrink it – or make it disappear 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 tumors disappeared in 100% of rectal cancer patients who received immunotherapy, so we expanded the trial to other cancers, including colorectal cancer. We thought he would be a good candidate for trial.”
But first he would wish a PET scan to be certain his tumor hadn't metastasized. This also led to a different shocking finding. During the exam, one in every of his lymph nodes lit up, so he was immediately scheduled for a biopsy. The finding: Aaron also has low-grade follicular lymphoma – it had nothing to do along with his colon tumor.
Because Aaron now had two forms of cancer, he now not qualified for the clinical trial, but that didn't stop his team from starting him on pembrolizumab (Keytruda) as a substitute of dostarlimab (Jemperli), the drug utilized in the trial.
“This was an additional complication because lymphoma is a cancer of the immune system and we would be using immunotherapy to treat Ken's colon cancer,” Foote said. “It wasn’t clear at first how effective it would be, but we decided to give it a try.”
In April, Aaron received the primary of his nine immunotherapy infusions of Keytruda, 60ml each, every three weeks. Aaron had virtually no negative effects apart from his existing gout getting worse.
“It’s not like chemo,” he said. “I can drive to and from the cancer center and even go skiing or hiking the next day.”
A possible bump within the road – after which a miracle
After the fifth treatment, Aaron had one other PET scan and one other colonoscopy. He was shown to be making progress, but it surely was slower in comparison with other patients within the clinical trial.
“It was frustrating,” he said. “But my oncologist said he thought my lymphoma might be the reason – they gave me medication to boost my immune system, but lymphomas are cancers of the immune system, so he explained that it might be going in the opposite direction a bit.” .”
It was only after his seventh treatment, a colonoscopy and another scan that a miracle happened: there were no signs of the tumor and the biopsy was clean.
“No cancer was found and there was only scar tissue where the tumor was,” he said. “It was a miracle – I still can’t believe I’m saying that out loud.”
As per protocol, Aaron completed his treatment and received his final treatment in September. Two PET scans have been done since then, with another one coming in June. He will have a colonoscopy every four months for the foreseeable future.
“You’re never really finished – it’s just a new phase,” he said. “This is why support groups for cancer survivors exist. It's not just sitting around exchanging high-fives. You were on a war footing, and now you're not, and you have a little post-traumatic stress disorder. It’s definitely a traumatic experience.”
Aaron stays the de facto organizer of a web based support group along with his fellow Sloan Kettering patients.
“We still help each other,” he said. “I still schedule our Zooms every other Tuesday at 3 p.m. We need each other and I know that talking to each other about what we are going through will help us all.”
Ultimately, Aaron said, he got here out of the situation with a brand new philosophy.
“The answer is to show empathy to everyone you meet and maybe do it more than I did every day,” he said. “It’s not necessarily because you never know what someone is up to. That's right. But more than that, when you give grace and someone else does it in return, the world becomes a better place.”
Aaron's recommendations on advocate for yourself
Make sure your doctor is listening to you
“If you think something is wrong, get an answer,” he said. “You know your body best. If you feel like something is wrong, don't let it go. If your doctor doesn't respond, find another one. I'm happy to say that prior to my diagnosis, my primary care doctor was very attentive to my concerns, even if they were subtle. I'm still not sure if they're related to my cancer. But I know others 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 my doctor saw all week, not the most interesting.”
Find the perfect “cancer machine” near you
“When deciding to leave [Sloan Kettering]”I felt like I had activated a 'cancer machine,'” he said. “When I became a patient there, I gained countless advocates on my behalf, a whole team of doctors who were familiar with the latest advances. If I hadn’t gone there, I almost certainly wouldn’t have been subjected to the same treatment protocol.”
Get care out of your doctors
“Cancer raises a lot of questions that can be very difficult to answer, and even though you want to advocate for yourself, it's hard to know if you're making the right decision,” he 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 sideways — and they definitely could have, since there are no guarantees with cancer — I would have at least taken the “what ifs” off the table. And in a time when uncertainty is the toughest thing of all, it's reassuring to know that you just did this for yourself.”