The Maine Cancer Genomics Initiative turns 10 after building a statewide network of oncologists, scientists and genomic specialists.

The Bar Harbor Story is generously sponsored by Witham Family Hotels.

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BAR HARBOR—On an early fall day on Little Cranberry Island, Henry Grandgent had work to do.

There was a boat to tend to. Houses to maintain. A dormer to build on his daughter’s house. There were always roofs, boats, pieces of wood, pieces of life that needed putting right.

He is 72, and he has cancer.

But cancer, as Henry will tell you, is only one of the things he has to do.

There is sailing with a granddaughter. There is rowing. There are trips out toward Baker Island. There is Gail, his beloved wife, who keeps a notebook during his medical appointments because there is always something else to remember.

“I take a notebook to appointments because there are always useful ‘asides’ from Dr. Brooks that I want to be sure to remember. It is a pleasure to work with him, and he does help us feel empowered and informed. He has such a positive, upbeat attitude, he makes me feel like it’s ‘us against the cancer, and we’re winning,’” Gail explained.

There are blood tests and scans and medications and the mysterious arithmetic of insurance. And there is the cancer itself, which has required that notebook.

“For the average bear, it is overwhelming,” Henry explained. “For the average bear, it is overwhelming,” Henry explained. “I feel very lucky to have Dr. Brooks leading the charge, and the Oncology Department and the best nurses, at MDI Hospital.”

Henry doesn’t pretend to understand all of what the doctors find when they look into his tumor’s genes. Neither does he need to. He knows what matters.

His doctor, Philip Brooks, is nearby, just three hours away from the Bar Harbor house where they winter.

The people who can help Dr. Brooks understand the complicated genomic report are nearby, too.

And if they are not nearby, they can be called into the room virtually.

That is the idea behind the Maine Cancer Genomics Initiative, which turns 10 this year.

The program, created in 2016 through The Jackson Laboratory with support from the Harold Alfond Foundation, was built around a problem that seems obvious once you see it: Maine is big, rural, and a bit scattered, and cancer science is getting very complicated.

“I think the doctors now have much more to assist them in putting together a plan on action. Being able to participate with the Maine tumor board and get input from other oncologists is a great advance, everyone has had some special experiences with different cancers,” Henry said.

The old map of cancer was comparatively simple.

A cancer was named for the place where it began: lung, breast, colon, prostate.

But cancer is not really one disease within any of those places. Tumors can carry different genetic changes, and those changes can affect how a cancer behaves and which treatments might work against it.

A lung cancer can be one thing in one patient and something quite different in another.

The science has become more precise and also more complicated, but more importantly more helpful for some doctors of some patients who—when they have access to the genomics panel—can create much better, specified, individualized care for them.

It requires testing. It requires physicians who know how to interpret the results. It requires people who can keep up with a rapidly changing body of evidence. It requires access to clinical trials and therapies. And it requires time.

In Boston or New York or at a major academic cancer center, much of that expertise may be sitting down the hall.

In rural Maine, the oncologist may be sitting alone. Sometimes, as on Mount Desert Island, there may be just one. For a person with cancer, it helps.

“For all the people in small towns in Maine, the MCGI is a great boost. Look at all the memorial luminaries in Bar Harbor or Ellsworth every summer. There are family stories behind every one. People are being given a chance to live on with local treatments. Every case is different,” Henry said. “Locally the Beth Wright Center in Ellsworth offers classes and support for those with cancers and their families. It is a lot of stress and fear for families, the unknown of what will happen. What do you tell a grandchild? Can a spouse do anything to help feed and strengthen a patient, yes! Should we look at the chemistry of solvents and cleaners around us? Can you improve your mental outlook to fight disease? There is a lot of information to consider and the MCGI helps collate what the best choices may be.”

“It’s part of rural Maine,” said Dr. Jens Rueter, the medical director of MCGI and chief medical officer of The Jackson Laboratory. “It’s a very beautiful part of rural Maine, but it is rural Maine.”

Dr. Rueter knows the science from multiple sides.

Though he is a scientist, too, he sometimes covers for Dr. Brooks when Dr. Brooks takes vacation, so Dr. Rueter has treated patients at Mount Desert Island Hospital himself.

He has seen what happens when sophisticated cancer care has to be delivered in a small community hospital, where the medicine may be world-class but the number of people in the room is small.

MCGI was designed to change the size of that room.

A doctor can send a genomic test for a patient’s tumor. The report may contain hundreds of pieces of information: mutations, biomarkers, possible drug matches, clinical-trial possibilities.

Then comes the part that may be most important. The case can go before a genomic tumor board.

The board brings together oncologists, pathologists, genomic scientists, and outside experts to examine the results and talk through what they might mean for that particular patient. Today, the meetings are conducted virtually, allowing specialists from Maine and beyond to participate. JAX says the program has conducted more than 500 genomic tumor boards in Maine since its launch.

The word genomics feels far away, but the program is not a computer handing down an answer. It is people talking to people about what that answer means, how to help, how to connect them to others.

A Maine oncologist can ask, in effect: Here is my patient. Here is what the tumor is telling us. What am I missing?

Receiving a genomic report can be a little like receiving a book written in a language you almost speak. The information is there. The difficulty is knowing what to do with it.

“In the first phase, we enrolled about 1,600 patients,” Dr. Rueter said. “They all even got testing through our own lab. So we actually provided two things, the test itself, and then also this, what we call genomic tumor board, this interpretation.”

Then the center ran annual forums.

Dr. Rueter explained, “So these were sort of practical systems, science-y meetings, where we brought in speakers from around the world that were interested in the field, and we also, you know, and then we brought the community oncologists together, and this was all, the entire program was, of course, paid for by, mostly by the Harold Alfond (Foundation).”

Of those 1,600 or so people whose genomic test results were returned, 97.5 percent had at least one potentially actionable genetic variant or biomarker. Only a fraction ultimately received a treatment matched to those findings, a reminder that discovering a possible treatment is not the same as being able to deliver it.

That distinction is important because precision medicine is not magic.

Sometimes the test changes everything. Sometimes it confirms what the doctor already knew. Sometimes it finds something interesting, but there is no drug for it, or no trial nearby, or no treatment that makes sense for that particular person. And sometimes, something changes.

Dr. Brooks remembers a patient with locally advanced rectal cancer whose tumor carried a mismatch-repair deficiency, a biological feature that can make certain cancers unusually vulnerable to immunotherapy.

Instead of the usual path of chemotherapy, radiation and surgery, the patient received immunotherapy and, Dr. Brooks said, was able to avoid surgery.

The science behind that possibility has moved quickly. In a 2022 clinical trial, all 12 patients with mismatch-repair-deficient locally advanced rectal cancer who completed six months of the drug dostarlimab had a complete clinical response, with no evidence of cancer detected by the study’s measures. A larger follow-up study published in 2025 found similarly striking results among patients with this specific form of rectal cancer: all 49 patients who completed treatment achieved a clinical complete response, and all elected nonoperative management.

Those are extraordinary results, they are also not the experience of every cancer patient. Dr. Brooks is careful about that. Genomics makes a huge difference for some patients, he said, but not all.

For many, the result does not reveal a new treatment. Still, there is something in knowing that the question was asked.

Cora Fahey understands that.

She was diagnosed with breast cancer in 2015. The experience eventually took her into cancer advocacy, where she became involved in national conversations about survivorship and the importance of including patients in decisions about their care. Then she looked closer to the labs near home.

“My involvement with MCGI really grew out of the advocacy work I began after my own breast cancer diagnosis in 2015. Over the years, I became involved in cancer advocacy on a national level, particularly around survivorship and making sure the patient voice is part of the conversation. But at some point, I realized there was this incredible work happening practically in my own backyard at The Jackson Laboratory,” Fahey said. “I have lived on Mount Desert Island for more than three decades, so JAX isn’t just a research institution somewhere else. It is part of my community.”

The Jackson Laboratory was right there.

“When I learned more about the Maine Cancer Genomics Initiative and the work they were doing to bring genomic testing, precision oncology and education to cancer patients and their healthcare teams throughout Maine, I wanted to be involved,” she said. “That eventually led me to MCGI’s Patient Advisory Committee, where I have been able to bring my perspective as both a cancer survivor and patient advocate to the table.”

When she joined MCGI’s Patient Advisory Committee, she brought to the table something no genomic report can contain: what it feels like to be the person sitting in the chair.

“Sometimes we need to be the ones saying, ‘This is what we need. This is what we understand. And this is where we are getting lost,’” Fahey said.

Cancer has a language of its own. Genomics adds another layer to that language and Fahey believes patients deserve help learning both.

“Education is also incredibly important to me. Cancer is overwhelming, and genomics and biomarker testing can sound like another language when you’re newly diagnosed and frightened. Giving patients information they can understand helps them ask questions and become active participants in their own care. I’ve always believed that knowledge is power,” Fahey said.

“Knowledge is power” may be one of the quieter achievements of MCGI. The program has educated Maine oncologists alongside testing patients. JAX’s clinical education program now offers genomic tumor boards, online education and annual forums designed to help community clinicians keep pace with precision oncology.

In other words, the program was never simply about sending a test away and getting a report back. It was about building a network. That was harder than it sounds.

When Dr. Rueter and MCGI program director Andrey Antov began building the initiative, they literally drew a map of Maine and marked the oncology practices.

Then they started calling people.

One doctor knew another. That doctor knew somebody farther north. Slowly, practice by practice, the map filled in.

The oncologists were interested, but Maine’s health care system contains competing institutions, independent practices and small hospitals scattered across a large state. MCGI had to build something that could cross those lines.

“We had to thread the needle,” Dr. Rueter said.

There was a lot of diplomacy.

Ten years later, MCGI describes itself as a statewide network that includes every oncology practice in Maine. The initiative has also begun taking the model beyond Maine, including a 2026 partnership with Bayhealth and N-Power Medicine that uses virtual tumor boards to bring the approach to community oncology elsewhere.

But perhaps the most important evidence that the idea works is buried in a set of numbers that would mean little to most people at first glance.

In a 2024 study of the initiative’s first phase, researchers compared patients who received genome-matched treatment with those who did not. After adjusting for several differences between the groups, patients who received a genome-matched treatment had a 31 percent lower risk of death during the first year of follow-up.

The researchers did not call this proof that genomic matching caused patients to live longer. It was an observational study, not a randomized trial, and they noted that unmeasured differences could have affected the result. The signal was there and it was large enough to matter.

It suggested that something as deceptively simple as making sure a patient’s tumor was tested—and making sure someone knew how to interpret the test—might change the course of a life.

For Dr. Rueter, that was not necessarily what he expected when the program began.

He had trained in Germany, then came to the United States for residency and fellowship. Years earlier, as a medical student in Berlin, he had filled out a form to order laboratory mice. At the top was the name Jackson Laboratory in Bar Harbor, Maine.

He remembers looking at a map and wondering where that was.

Two decades later, he was living in Maine and running a program that connected cancer patients across the state to genomic expertise.

The coincidence still makes him laugh. There is another Maine detail in the story. When Dr. Rueter came to interview for a medical position in Bangor, it was February. The Penobscot River was frozen. He looked out the window.

Someone handed him binoculars. There was an eagle, and Dr. Rueter? He was sold. Luckily, his wife was all in as well.

That was Maine, too: the cold river, the bird, the strange possibility that a place at the edge of the map might become the place where an idea based on strong science and community takes hold.

Cancer doesn’t care about the map. It doesn’t care whether a patient lives in Portland or Caribou, on Mount Desert Island or Little Cranberry Island.

But medicine has often been hindered by geography. Distance determines who gets seen, who gets tested, who gets into a clinical trial, who has access to a specialist, who has to take a day off work, who has to drive four hours through a snowstorm.

MCGI cannot erase all of that. It can do something smaller, and perhaps more useful. It can make the room bigger. It can help people work together to help people with cancer.

Gail has Henry’s notebook and Cora has her knowledge and desire to do more. They all also have their community both of scientists and friends who stand for them and that they stand for, too.

“I have been more or less fine this summer. A little low energy, but there has been a lot going on in my work world here, so I am not surprised. I had my teeth removed and dentures made this summer, which has also been a factor. This will enable an infusion of bone enhancing gunk, as the treatments I have are diminishing my bones along with the usual aging process. I am 72. I was able to do a little sailing with a grand daughter this summer and rowing. A few trips on the boat for scenic value, and rides to Baker Island for friends that live there. I have been building a third floor attic dormer on my daughter’s house and maintaining a couple of other houses here at Isleford along with the boats, so I have every reason to feel tired. I am fine,” Henry explained.

He still has appointments. He still has treatments. He still has the ordinary work of being 72 in Maine, which includes boats and buildings and family and the occasional midnight trip down to the shore to make sure a tide has not done something foolish to a boat pulled up on the beach.

His cancer is part of his life, but is not all of it.

Henry emailed that he feels lucky. Lucky to have Dr. Brooks nearby. Lucky to have the nurses. Lucky to have his family and neighbors who will plow his driveway when he’s not feeling up to going outside in the Maine snow. Lucky, too, that when his doctor needs to know something, the people with that knowledge are not necessarily hundreds of miles away. They can be called into the room.

Sometimes, in cancer, that is where hope begins—not with a miracle, and not with a promise, but with one more person looking at the same problem.

Then another.

Then another.

Until the little room in Maine is no longer little at all.

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All photos courtesy of The Jackson Laboratory.

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LINKS TO LEARN MORE

More information about MCGI is here.

Here are details on the 10-year event on Oct. 14 that will celebrate and fundraise for the center.

MDI Health

Beth Wright Center

More about Cora Fahy

More about Henry Grandgent

More about Dr. Jens Rueter

https://www.youtube-nocookie.com/embed/4QV9B65eRlc?rel=0&autoplay=0&showinfo=0&enablejsapi=0

A video about Henry.

https://www.youtube-nocookie.com/embed/UqNcMcyNEek?rel=0&autoplay=0&showinfo=0&enablejsapi=0

A video about Cora.

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