Phil (back, middle) and Andy (back, right) Trahan from Louisiana have made good use of the CU Remote Second Opinion Program. “We can consult a world expert on Monday afternoon and still be in the Superdome for Monday night kickoff.” Also pictured (front row) Andy’s sister Jennifer, mom Karen, wife Leslie and brother Joey (back, left)
Soon after a cancer diagnosis, or at any point in their cancer journey, many patients would like to have a second opinion. Maybe it is to see if there are options not available in their own center, maybe it’s just to reassure their friends, relatives or themselves that they are doing the right thing, or, if necessary, to point them in a different, better, direction. However, the hassles of traveling, extra expenses, and even child care may sometimes make it seem impossible to seek out advice from an expert that is not local. The University of Colorado Cancer Center’s Remote Second Opinion Program (RSO) is now helping to change the way patients and cancer experts can interact, so that patients can benefit from the center’s world class faculty without having to leave the comforts of their home.
Ross Camidge, MD, PhD, Joyce Zeff Chair in Lung Cancer Research at the CU Cancer Center, started the RSO program in late 2011 after a series of high profile lung cancer treatment breakthroughs lead to patients or their relatives emailing him for advice from all round the USA and the world.
“While I would try and help each person, a quick email isn’t the same as a real consultation. Also we weren’t capturing the information on their cases in a way that would let us refer back to it, as and when any new developments occurred,” he says. “However, it also felt wrong to drag a patient half-way across the country or the world just to sit in the same room as a physician. Something new was needed.”
Several other academic institutions or third party vendors had already established programs that allowed cancer patients to have their records sent in and then receive a second opinion letter back, but Camidge wanted something different.
“Looking at the existing programs, they were a little formulaic. Some of them were clearly based on cutting and pasting blocks of text that was appropriate if you had just been diagnosed or wanted advice on routine first or second line approaches, but it wasn’t cutting edge. The people who seek out second opinions are often very savvy and have explored the standard options already,” says Camidge. “In addition, the best medicine involves really effective communication and just getting a letter may not be the optimal way to do that. Conversational to and fro counts for a lot.”
In the CU Cancer Center’s program, a patient’s notes and scans are gathered in advance and then the patient is scheduled with the physician at a particular date and time, just like a regular doctor’s appointment. However, in the RSO the new patient spends an hour on the phone with the doctor rather than sitting in the same room as them.
“The call is very personal, very tailored to whatever that person needs to discuss,” says Camidge. “The expert is there with them in their living room, talking through their scans, making sure they understand what is going on and what their treatment and trial options are, wherever they are.”
Payment for CU’s RSOs is currently only via credit card and not reimbursable by insurance, but for any out-of-state patient the cost would usually be significantly less than the cost of travel, taxis, meals and accommodation for an in-person trip.
“The CU Cancer Center has one of the widest arrays of new treatments available, together with the expertise to direct patients to the therapies that will have the greatest chance of success,” notes Wells Messersmith, MD, Division Chief for Medical Oncology and a prominent expert in the care of gastro-intestinal cancers. “For the RSO program, though, we took things to an even higher level. The doctors participating in this program are some of the best-of-the-best. Given what our RSO users are looking for, we make sure the doctors involved really know their field inside out, and can advise patients on all the options out there, including clinical trials and the best care located in other places around the country and the world.”
Because of Dr. Camidge’s involvement, the initial pilot program for RSOs at CU focused on thoracic oncology, covering lung cancer, mesothelioma and thymic cancers. To date, the thoracic oncology RSO program has now allowed over a hundred people all over the United States, as well as the world, to get a second opinion from the experts at the CU Cancer Center. Phil and his son, Andy Trahan, both living in Louisiana, decided to utilize the thoracic oncology RSO program in 2013 after Andy was diagnosed with stage IV lung cancer.
“Dr. Camidge’s reputation is what brought us to CU Cancer Center and he is the reason we chose to do RSOs there,” explains Phil. “Our personal experience with the RSO program has been very good. Dr. Camidge always calls exactly on time and we never feel that we are being rushed through. We have made several important decisions on the basis of these consultations.”
The Trahan’s feel they have benefitted greatly from the program, particularly when it came to being more educated about the disease and feeling more confident about their treatment decisions.
“As opposed to having a local oncologist consult a specialist for a second opinion, I feel better when I can hear the specialist myself. Follow-up questions, clarifications and “what ifs” are very important and can get lost in the translation when three parties are involved,” says Andy. “I think RSOs are particularly helpful to patients and caregivers who have educated themselves on their disease, as they will have some idea of the issues and can get more value out of the time.”
In addition to helping patients across more than half the states in the USA, the RSO program has reached out internationally. Paul Rosenberg, an American living in Manila in the Philippines, had initially received treatment for his lung cancer both in New York and locally. After recurrence, he felt he needed a second opinion from a recognized expert doctor in lung cancer but a meeting in-person was difficult. He inquired from the Bonnie Addario Lung Cancer Foundation about this including the names of some possible doctors including Ross Camidge. He was told that the University of Colorado Cancer Center had exactly what he was looking for with its RSO program. He immediately applied for the RSO program and had all his records sent to Camidge.
“I was very satisfied with the initial RSO,” explains Rosenberg. “I had a very detailed phone call for almost an hour with Dr. Camidge at which we discussed my situation in great depth including opportunities in the new immunotherapy area. We agreed to have my tumor sample tested to see if I would qualify for a drug trial. The test results came back positive.”
“Doing the trial in Colorado was not workable and they helped me get accepted for the trial at a site in Singapore, closer to my home in the Philippines. I responded very well to the treatment for over a year and when it stopped working, the first place I went back to for my next plan was CU,” he says. As only a few small areas of his cancer had started to grow, after Dr Camidge spoke with the clinical trials staff in Singapore, he opted to pursue stereotactic radiation at CU with Dr Brian Kavanagh and continue his immunotherapy treatment when he returned home. ‘Kavanagh is one of the foremost radiation oncology experts in the world when it comes to the stereotactic treatment of oligoprogressive disease,’ said Camidge. ‘His expertise was exactly what Mr Rosenberg needed.’
After the success of the thoracic oncology pilot, RSOs have now become an option for many different programs in the Cancer Center. Virginia Borges, MD, director of the young woman’s breast cancer program at CU recently completed an RSO on a breast cancer patient from Kansas who was pregnant at the time and so could not travel for an in-person visit.
Following the RSO call, the patient sent the following email to the colleague who had referred her: “I wanted to take a minute to thank you for referring me to Dr. Borges. She truly is wonderful and provided a lot of great insight. I ended up switching oncologists and treatment plans all while remaining under the care of my original hospital. I am feeling so much better about things now!”
“The RSO program has really extended who we can help,” says Borges. “Our limits are no longer being set just by the four walls of the Cancer Center. Having a real, detailed, conversation with a patient, even if they live many miles away, is what allows me to give them the best advice. There are things that a review of somebody’s case records and a letter without the personal contact just cannot cover.”