Woman celebrates 3-year ‘liver-versary’ after unique transplant surgery
July 31, 2020
Jessica Maher’s ultrasound was supposed to show why the healthy 31-year-old was having chest pains. What her doctors found was alarming, though it had nothing to do with her pain.
“The whole left side of my liver was riddled with tumors — more than they could count,” Maher said. ‘It was an accident that the ultrasound caught this, and that they saw it.”
Maher was diagnosed with intrahepatic cholangiocarcinoma (iCCA), a rare form of cancer of the bile ducts inside the liver. Her next few years were filled with chemotherapy treatments, surgeries and illness. Her skin and the whites of her eyes turned yellow (jaundice), and her condition steadily declined.
Maher’s only hope was a liver transplant. But transplant surgery isn’t an accepted option for iCCA patients because of historically poor outcomes and increased risk of recurrence. Only a few hospitals in the country will even consider doing it. Additionally, donor livers aren’t readily available, and many insurance companies won’t approve the surgery because it’s considered experimental.
Treating a cancer that was deemed "untransplantable"
One night, Maher was chatting in a Facebook group for people with cholangiocarcinoma when someone mentioned the University of Chicago Medicine’s transplant program. She learned UChicago Medicine was expanding its liver tumor and adult living donor transplant programs to focus on cancers previously deemed “untransplantable,” including iCCA and colorectal cancer with liver metastasis.
The whole left side of my liver was riddled with tumors — more than they could count.
Even if UChicago Medicine didn’t choose Maher’s case for liver transplantation for her iCCA, the hospital had several clinical trials with unique chemotherapies that might help her. That’s because it’s a longtime National Cancer Institute-designated Comprehensive Cancer Center, the gold standard of comprehensive cancer treatment.
Due to liver damage from prior treatments, Maher was chronically ill and had been frequently hospitalized with only months to live. She reached out to UChicago Medicine liver transplant specialist, surgeon and co-director of the Transplant Institute John Fung, MD, PhD. She flew in to see him from her home outside Philadelphia and shared her story.
Fung consulted with his multidisciplinary team and determined Maher was a good candidate for the liver transplant surgery. Her tumors were stable, and the cancer hadn’t spread outside her liver.
Using a protocol that incorporated important new advances in staging, neoadjuvant therapy and immunosuppressive management, Maher was approved for the liver transplant by her insurance company. She also would be given priority for a donor due to the degree of liver damage.
Jessica was so sick, but now she is this beautiful woman living her life.
Some in the medical field don’t believe transplants like these should be done, given that the cancer is likely to come back. Fung disagrees. Of the six iCCA patients whose livers he’s transplanted, five are still disease-free and one has had just mild recurrence.
“Recurrence is not necessarily the end,” Fung said. “You can manage the cancer afterwards.”
At the forefront of transplant oncology
Transplant oncology is still fairly new and involves liver transplants for patients who were previously not considered for transplantation. UChicago Medicine’s Liver Tumor Program, directed by transplant hepatologist Anjana Pillai, MD utilizes a multidisciplinary team approach to identify patients who may benefit from liver transplantation, like Maher.
She underwent the nearly 17-hour surgery at UChicago Medicine in 2017. She spent the next month in the hospital, and her long recovery was complicated by a bile leak, a blood clot and bowel surgery. She lost 25 pounds and needed physical therapy to restore her atrophied muscles.
It was all worth it, Maher said, while celebrating her 3-year “liver-versary” this summer. Today, the 39-year-old is back to work in a medical device company’s marketing department, plays tennis, does yoga, and enjoys time with her husband, family and friends.
“Jessica’s case is really what made me look at these cancers from a different lens. She was so sick, but now she is this beautiful woman living her life,” Pillai said. “We know recurrence occurs, but she got three more years than she would have without the transplant, and hopefully many more.”
Fung and Pillai want to continue developing the transplant oncology program so it keeps UChicago Medicine at the forefront in this field.
“We’re cautiously optimistic that we’re making some headway in this area,” Fung said. “If we’re very thoughtful about it, and choose the right patients, we can make a big difference.”
Today on At the Forefront Live, UChicago Medicine cancer experts will discuss an exciting new opportunity for patients. Getting a cancer diagnosis is a tough and life-changing event. You may not know what questions to ask or how to go about getting the best care possible. Today we'll tell you about a new program called the Express Expert Cancer Opinion, or EECO. This will allow you to connect with world-renowned cancer experts at no cost. Dr. Mitchell Posner and Dr. Jessica Donington will answer your questions during this live Q&A that's coming up right now on At the Forefront Live.
And we want to remind our viewers that today's program is not designed to take the place of a visit with your physician. Let's have each of you start off by telling us a little bit about yourselves and what you do here at UChicago Medicine. And, Dr. Posner, since you're joining us on set, we'll start with you.
Hi. My name is Mitchell Posner. I am a professor of surgery at the University of Chicago. I also am chief of general surgery and surgical oncology and physician in chief of the University of Chicago Medicine Comprehensive Cancer Center.
I'm a surgical oncologist. I specialize in the management of patients with pancreatic cancer and esophageal cancer as well as many other solid tumors.
And Dr. Donington.
I'm Jessica Donington. I am the chief of thoracic surgery, and I'm the leader of the lung-cancer program here at the University of Chicago Medicine. So I'm an expert in the treatment of lung cancer, mesothelioma, and esophageal cancer.
Now this EECO program that we've heard a little bit about here in these past few weeks is an exciting new program that you all are pioneering here. And tell us a little bit about that, and what does that mean for the patient? Dr. Posner, we'll start with you.
So the EECO program is meant to provide easy access to patients who are first diagnosed with their cancer. Obviously are anxious about it-- in many instances, frightened-- and want to learn more about what options are available to them.
Very often in a busy cancer center like our own, it takes time to get patients in to see us in an in-person visit, even before the pandemic began. And because of that, providing a very simple way of meeting with us using the new telemedicine platform and a visit by Zoom or any other means of technology provides them with access that we've assured them will be within 24 to 48 hours from when they're first diagnosed-- from when they first contact us.
And that's critical for patients because I imagine after you get that diagnosis, you hear that news, you want to act quickly, and people want answers. And so this is a great opportunity for them to reach out and just maybe learn a little bit about some of the avenues that are available.
Yeah, I think that that's really true. I think that, for most people, when they get their diagnosis of cancer, it's a life-changing moment for them. And they are, again, very frightened about what cancer is and what it means and how it will alter their life. And I think the ability to be able to meet with someone in a very short period of time who is experienced and who has dealt with their problem multiple, multiple times and then can provide them with pathways that can help them both enhance their diagnosis of their disease and the treatment options that are available I think puts them at ease until they can meet with someone in a more comprehensive way to actually come up with a more specific and individualized treatment plan for them.
Dr. Donington, some of the-- there are a lot of benefits to this, but some of the benefits that really kind of stick out in my mind-- I know UChicago Medicine has some of the best cancer docs in the world. So this is an opportunity to access some of this knowledge and some of this expertise, and it also allows that access remotely, which also can be very helpful for patients that might not be in the Chicago metro area. And you've actually done some video visits yourself I imagine, right?
Right. Video visits have been such a great revolution in medicine. And there are silver linings to terrible things like pandemics, and video visits are one of those in medicine.
But I think the EECO visit is really-- because we don't have all the information always, but when I've done them, I think of it as if a member of my family called from out of state or one of my friends from high school or college and they had a nodule or lung cancer and had lots of questions. I can't provide them everything they need to know, but I can certainly give them a lot of background information, a lot of understanding about how the workup is going to go, what treatments look like, basically.
And I think it just provides a lot of assurance because I agree, the anxiety related to a new diagnosis is just so terrible. And anything we can do to shorten that anxiety and make it easier I think is really helpful.
So I think it is a really great way to just get some early information and calm people down and let them know, whether their care is going to be here at University of Chicago or somewhere thousands of miles away, that what you're getting-- the things that have been done make sense, and this is what's coming next.
It's interesting, and I think one of the things that's very important, not only with cancer care but other care, is really do your research, and where you start your care is very important. And that's one of the things we talk a lot about a lot with oncology. It's important to go to the correct place. And I don't know if you can explain that to us a little bit, Dr. Posner, and kind of reiterate why that is so critical.
Sure. I think when patients are diagnosed with cancer, many times they will, either themselves or even a professional will tell them that cancer is an emergency and they need to make a decision and get treatment immediately. And, in fact, what's really critical-- and I tell this to patients all the time-- is that what they need to do is become educated about their disease and the options available to them.
And then it's not an emergency to get things done. It is an emergency to see someone and talk with them but really to understand what are the issues related to their cancer? What kind of options are available? And it's critical that both from the time of diagnosis to the staging of the patients to their treatment and their aftercare that it's essential that they get, in the end, the best outcome.
And the best outcome is achieved by seeing people in an institution like our own where we can provide them with that comprehensive approach that will give them the best opportunity to get beyond their cancer and get back in control of their lives, which is really the key.
We want to remind our viewers that we will take your questions live on air. So just type them in the comments section, and we'll get to as many as possible for the next half hour. So first question from a viewer. "Can I request any cancer doctor or only some of them participating in this new virtual program?" And I guess kind of the bigger question is here, how does this work? How do you go about the EECO program?
Yeah, it's very simple in many ways. There is a telephone number where the patients will call in. And for every solid tumor that there is, there are a number of experts who are committed and have time within a 24- to 48-hour period from when they call to set up what's called an EECO visit.
And what that means is is that they will have a virtual visit, a telehealth visit that will last approximately 10 to 15 minutes. It will be quite short but will provide them with that curbside consult about their disease and the options that are available to them, the clinical trials that may be able to be offered, and I think put them at ease, and that's really the plan from the very beginning.
And I think that patients will find that it is very simple, actually. Once they make the call, the machine is put into motion, and so far it's been very effective. And after that video visit, they will then be set up for a more comprehensive visit where we can look at all of their medical records, including their imaging, review their pathology, and then hopefully come up with an individualized plan for them that they're comfortable with and work with us together to get them the absolute best outcome.
So Dr. Donington, Dr. Posner just mentioned a moment ago clinical trials, which is an area that we obviously do a lot of work here at UChicago Medicine. What are clinical trials, and why are they so important for the patient?
So clinical trials are how we bring new medicine and new treatments into lung cancer-- into cancer care. Forgive me. As a lung-cancer doctor, I always talk about lung cancer. And they're important because they're how we move our field forward. They're how we find new treatments and how we determine that these treatments work. They're important to patients because we still have a fair amount of cancers that are incurable, and they are how we get the new and exciting meds and technologies and treatments to patients.
So for many types of cancers, now we have personalized treatments, medicines that are designed for their specific tumors. Those all have to go through clinical trials, and so this is how we move our field forward, and this is how our patients get the best access to the best care possible.
We're really very fortunate at the University of Chicago. We have a really robust clinical-trial program. Many new medicines come to places like the University of Chicago first because they know we can attract patients who have these diseases and that we have the doctors, the nurses, the research infrastructure to effectively move these trials, these Medicines forward and to provide the appropriate care for our patients in doing so.
And Dr. Posner, that's one of the strengths, really, of an academic medical center and what you do here at UChicago Medicine.
Yeah, I think that we see it. We believe it. We live it. Dr. Donington's a perfect example. She's an absolute leader in her field, and she became that through the use of clinical trials. That is what she is known for, actually.
And I think, actually, the public is now becoming very comfortable with the concept of clinical trials even in this very unusual period because everybody hears on the TV or radio every day about the pandemic and the need to find a vaccine or therapy, and they know and they hear all the time that clinical trials are going on to find those answers.
And that's what we do every day in cancer because cancer is an area where we know that we can always make improvements. And if we do it in a scientific way, then we don't just treat patients by anecdotes or gut feelings. We're treating them with the best science behind the treatments that we're offering them.
It's interesting you bring that up because I think the general public, to a large degree, probably really hadn't heard the terminology of clinical trials or maybe had heard about it but didn't know what it was. And with the pandemic, it's more in the news. But, again, to your point, that's what happens here.
Exactly. It happens on a daily basis. I think it's the reason most of us work in a place like the University of Chicago because, as you said, we believe in it. We work and we're special in a way that we have our medical center embedded into the university, and we can leverage all of those important areas in the university that can improve our ability to offer new therapies.
It's exciting. So let's talk about EECO a little bit more. We've had some questions, and one of the questions is, "Do I meet with an actual cancer doctor? Does this all happen over the phone or over the computer?" And you touched on that earlier, but there are steps that will happen as people enter the program.
Right. They will meet with an expert in the field of their disease problem. And that person may or may not be the eventual person they see in a more comprehensive visit, but they are an expert in the field. And most of the time they will see the same person, but we believe that that's not necessary. We just want to get them to someone who has the expertise to help guide them and provide the landscape for them that they can understand.
And that visit is always virtual. And so the patient's in their home. We're in our office, usually. And we are able to then provide them with that blueprint in terms of what they can potentially expect.
Right after or even before that visit occurs, they will be offered a more comprehensive visit. And we know already, even though the program has only been open for a short period of time, that the vast, vast majority of patients-- 85% to 90% are actually following up with a more comprehensive visit.
Interesting. So is this just for adults?
At the moment, it is just for adults. That's correct.
Right. So the average EECO visit, is that a pretty quick visit?
It's 10 to 15 minutes. It's no longer than that. Again, we only have limited material because we're trying to be efficient and have the visit occur within 24 to 48 hours. So very often we won't have the imaging that we can specifically look at, but we will have a report, and we can least give them some idea of what the landscape will look like for them.
So Dr. Donington, Dr. Posner mentioned a moment ago that you likely will get the same physician, but you might not. We use a multidisciplinary approach here, so we have teams that work on various cases and work with the patients. Can you explain how that works to me? Because that's one thing that's always struck me as I speak with patients. We do the video work and do interviews and things with patients. They always talk about the team that helped them, and it's always high praise when it comes to talking about the teams.
So I'm definitely a team kind of person. That's one reason I love my program here is that we work very closely with our medical oncologists and our radiation oncologists.
So with the EECO visit, you may not see the person who-- you may not have your first visit with the person you see eventually, and that's because it may be that you speak with me and you're better off starting with a medical oncologist.
Our teams work two ways. Sometimes you can come, and you'll see three or four of us all in one day within our clinics, and that's one way we do multidisciplinary care.
The other way is our tumor board. So when I see a person in a visit-- I saw a couple of people this morning who I said, you know, this is kind of interesting. Your case is not totally straightforward. What if I plan on talking about your case at my tumor board so that 20 different doctors who treat lung cancer can give me their quick opinion about, do you think this is worrisome? Do you think I should do this step or that step? Because not everything is straight down the road and always obvious.
So we do multidisciplinary care in both models here. There are definitely people with lung cancer like stage-three disease who need to see a medical oncologist, or radiation oncologist, and a surgeon. And because we're part of a cancer center, we can coordinate that into one visit or one day.
And then for those who we just want the expert opinion from a bunch of people, we use our tumor boards which meet weekly here to really be able to go over interesting and unusual cases. And I think they're both really important.
And, again, this, to me, seems like kind of a no-brainer. The initial visit is at no cost. You get to access some of the best physicians on the planet and get maybe some ideas on a course of treatment. I mean, it really seems like kind of a natural.
Again, it's what we do. And I thoroughly agree with Dr. Donington that a multidisciplinary approach almost for every patient is necessary. There's nothing, I think, that's more comforting to a patient to know that a group of experts will get together and think about their disease and together come up with a consensus opinion about how they feel they can get the best outcome possible. And I think that's the beauty of the University of Chicago is our ability to work together as a team and even across teams to be able to come up with those best options for the patient.
Are there any specific types of cancers that are eligible for the EECO visit, or does it matter?
Right now, we're only looking at patients with solid tumors. So for patients who have lymphoma or leukemia or myeloma or other tumors that fit into those broad categories, right now we're not doing an EECO visit. My hope is we will be able to institute that very soon. The program just started three weeks ago, so we're still getting our legs underneath us. Although, as I said, I think in the first three weeks, I think the faculty that have been participating have really seen the benefit of it.
More importantly, I think the patients and their families, who can also participate in that visit and get a quick sort of overview of what they can potentially expect-- again, puts them all at ease and makes them feel comfortable that, as I say to every patient I see, once you have a plan, then this becomes a lot easier to deal with. Without a plan, you're just searching in every corner to try to come up with everything, and you go to bed thinking about what's next. Once you have a plan in hand, then they're starting to get back in control of their lives.
You make, I think, a really good point when you talk about families participating, and that's part of the beauty, I think, of the video visits when you do things like this because you can have multiple people there. You actually get a glimpse into kind of people's lives.
Without a doubt. We're seeing them in their homes, most of the time. And also the ability to have their loved ones who may be in far distant corners of the United States or in the world can also participate. And there's nothing more difficult than a family member not being able to be involved if the patient feels they should be involved. And this way, they have that opportunity. We could always have it in person, but as you might imagine, it's quite difficult in person to coordinate that. But now anybody can turn on their computer or their phone and be in the office with us, even though it's a virtual office.
And, Dr. Donington, one of the points that I think needs to be made, when it gets to the point where people might need treatment on campus, this is a very safe place to be. And, in fact, I think you were in surgery today. It's a very safe place to be, a very safe place to receive care. We're going through a lot of precautions to make sure that patients are safe as soon as they walk in the door-- probably one of the safest places you can be out in the city.
I 100% agree. The medical center took safety in this era very seriously. We were doing mandatory masking long before anybody else. We take our social distancing very seriously, our handwashing. I have always felt more safe in the medical center than in the supermarket. And not that the supermarket isn't wonderful, but I've never felt scared here, and the lateral transmission of COVID has not been an issue here.
Yeah, it is a very safe place, and it is really a real testament to what a functional work environment can be following all of the CDC recommendations for social distancing, for masking, for handwashing, and I think that's why it's been so safe. I am not scared to come to work at all.
And I got to admit, as much as I love my supermarket, there have been a few times when I've felt a little nervous in there recently. But that's another story.
So talk to us a little bit about NCI designation. That's something that's very important, and it's something that we have. What does that mean?
So there are about 40 or 50 NCI-designated comprehensive cancer centers. There are different levels of NCI designation with the highest level being a comprehensive cancer center. And what that means is that what you're doing as a center is integrating both the clinical care and leveraging a impressive and intense research infrastructure that is at the forefront of trying to introduce new types of therapies for patients with cancer.
At the same time, it also involves not just therapy but population research-- looking at disparities in the community, providing better access to the community to cancer care, and looking at epidemiologic issues, looking at screening, new diagnostic measures. So what it does is it brings a whole package together for the patient.
And we go through a very stringent process for approval on an interval basis every four years or so where that grant is either approved or disapproved to continue as a comprehensive cancer center. And we've been a comprehensive cancer now for as long as I can remember, and I've been here now-- I hate to say it sometimes-- 25 years or so. It really is the highlight of, I think, the ability to deliver cancer care at the highest level possible and, at the same time, provide the research and the innovative approaches that really define what we do in trying to get rid of this dreaded disease.
And I imagine the clinical trials play a pretty big role in that NCI.
The clinical trials are just absolutely essential. They are really the meat and potatoes of being able to bridge the gap between the research that's going on and the delivery of care right at the bedside for the patient.
Couple more questions from viewers. "Would my primary-care physician be able to participate with me?"
It's a good question. I've never really thought of it. I guess anybody could participate. There's really no reason that it couldn't happen. It hasn't happened to date. I've had a number of these. It's mainly to link the patient right up to their physician expert, but I don't think we have rules of people who can't participate. And we, of course, have incredible relationships with primary-care physicians and work with them all the time.
And you mentioned earlier family members from all over the world can participate if they want to.
Yeah, for sure, and I think Dr. Donington can elaborate on that.
Have you had that?
I have not on EECO, but I've definitely had it on my virtual visits. I would say maybe more than less you will see family members get on who are not in the same household. And when discussing complex treatments, when discussing risky procedures, it is so nice to have those other people on the call also.
I know recently I saw a son who kind of left his meeting at work. I saw him sneak out with his phone so he could join the visit. And I thought, oh my gosh, how great is this that everyone can join no matter what? So much easier than coming to my office.
And I would imagine, Dr. Donington, when you have the other family members participating like that, they can kind of lend a different viewpoint that might be really valuable to you.
Totally valuable. Not that everyone isn't realistic about their health and concerns, but I do think sometimes patients are a bit overwhelmed at our visits. I don't think they hear everything that we want them to, and I don't always think they ask all the questions that they want to, and yet family members seem to be a little more willing to do that.
When we have our live visits, we want family members there, and when we're doing virtual visits, we do too. The fact that the virtual platform makes it easier for them to participate is really nice-- really nice.
And no limit to how many can join a Zoom. I haven't seen anyone totally fill The Brady Bunch screen yet, but maybe one day.
Yeah, I'm sure it'll happen.
I can't tell you how many times, even on an in-person visit, that the patient will ask me-- they'll hold out their phone and say, can my sister, my brother, my mom, can they listen in? And I'm always taken aback because my answer is of course they can. We want you to have your support team involved with your care and understand everything you are learning about the process and what we will do in the future. So I think it's just critical.
So this just sounds like a wonderful program. We're out of time. I do want to say there's a specific phone number for this. It's 855-702-8222. We'll put all of this stuff up on the screen as it airs later as well too. And you can call the main number too at the medical center. We'll get you to the right people.
But it sounds like a wonderful program. It's really, really interesting, and I hope it helps a lot of people. I'm sure it will.
We will have another At the Forefront Live program next week. Please remember to check out our Facebook page for our schedule of programs that are coming up in the future. Also if you want more information about UChicago Medicine, take a look at our website at uchicagomedicine.org. I bet you'll find something there about EECO as well. If you need an appointment, you can give us a call at 888-824-0200. That's the general number, but they can also help you. And, remember, you can also schedule regular video visits by going to the website.
Thanks again for being with us today, and I hope you have a great week.
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