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Second opinions: Dr. Lidsky

Doc Talks

In this DocTalk for PALTOWN’s Empowered Patient Leaders (EPL) Training, Dr. Lidsky discusses the value of seeking a second opinion for CRC patients.

Recorded November, 2021.

Betsy Post 0:03 
So welcome, everyone. We’re so excited to have Dr. Michael Lidsky with us today from Duke Cancer Institute. And it’s just such an honor and a pleasure to have him to talk to our most recent EPL class. And of course, we’re recording this to make it available to a much larger patient/caregiver community. So definitely a huge thank you to you. We’re so happy to have someone of your caliber with us. Your background speaks for itself. So you came from Memorial Sloan Kettering. Of course, now at Duke. And then of course, went to UCSD for your undergrad and Georgetown for your MD. I feel like I’m on that path because I went from San Diego to DC myself. So again, thank you so much for being here. And I just want to say personally, some of my favorite things about you are I love your approach. I love your attitude. I love how you are with patients and caregivers and how compassionate you are and how you treat each person as a unique individual. With that kindness and compassion that really shines through, I hear that in the Hepatic Pump Group and Liver Lovers from your patients and from the caregivers that you interact with. And I see that every single day with your patients. And I really appreciate that. Also, congratulations to you on placing the very first Intera 3000 Hepatic Pump at Duke. That’s such an honor. And I was really happy to see that as I really believe that is such a great fit for so many of the patients I see every day in the liver groups that come through Colontown. So I love what you do with the hepatic pump. And I love your approach with patients and caregivers. So thank you for everything you do every day, and especially for being here today. I know that so many patients and caregivers will benefit from this recording now and also in the future. So with that, I’m gonna turn it over to you.

Dr. Michael Lidsky  1:51 
Thank you, Betsy, for the very kind and completely unnecessary introduction. It’s really a pleasure to be here with you all this morning. I’m really flattered that there are people that are tuning in from all over the world to be here and to learn, and to help patients and peers. It’s very early on the West Coast. I see Julie from California. Glad to have you and for those of you who are overseas, very happy to see you this morning. Chastity, I hope you’re recovering well. You look great. So I’m gonna go ahead and share my screen. I do want this to be informative and educational. And if there are things that I do not address, I would love questions. I’m going to leave most of the time here for conversation and discussion. And we can take this in any direction that you all would like. But I’ll share some information and my biases about second opinions. And I titled this Second Opinions, Worth It? with a question mark. And I guess I’ll just insert myself here. And I think the answer to that question is yes, they’re always worth it. So again, thank you for having me this morning. I have a couple of disclosures. Not financial disclosures, of course, but first these are biases of mine. As I mentioned, I support second opinions, I think they’re important. But I also work at a quaternary referral center, a hospital with subspecialized care and surgeries, and therapies and clinical trials. So we are very commonly seeing patients here as second opinions. So we’re used to that. But even though I work at a quaternary referral center, I encourage my patients to seek second opinions, especially if they ask, but even if there’s some hesitation on what we’re discussing, I’d always recommend it. So these are the things that I’d like to discuss today. And I want to review some literature. There is some literature out there about second opinions, in particular for colorectal cancer. So we’ll talk about who seeks second opinions, what kind of patients, what disease characteristics, etc. We’ll discuss why second opinions might be important, and then how to go about getting a second opinion because that’s not always obvious for patients.

Dr. Michael Lidsky  4:49
So first, who gets a second opinion? And I do think it varies based on geography and disease state and things like that, but this is a nice retrospective review that was published recently, just last year, from a group at Michigan. And the whole point of this was to define certain patient specific and treatment specific characteristics of patients that go and get a second opinion, specifically for colorectal cancer. This was a retrospective analysis. So they looked back on a database that they maintained between the years of 2010 and 2017. And they had 1700 patients that were evaluated at their institution for a diagnosis of colorectal cancer. These were patients that were seen by either medical oncology or surgical oncology, or both. And what you can see here is that of those 1700 patients, 60% of them were being evaluated as their first opinion at that center, and 40% were there as a second opinion. And they wanted to see if there was something different to offer.

Dr. Michael Lidsky  6:11 
And the table on the left gives the demographic and cancer specific factors. And I’ve highlighted the things to focus on in red, just so you can kind of focus your attention on these things. So patients who were seeking second opinions, in that 40% of patients, tended to be younger, they were in this 40 to 49 age group, they had metastatic disease, stage IV cancer, they had recurrent cancer, so cancer that had come back after some form of treatment, and they were also married. Single patients, widowed or divorced patients were less likely to get second opinions. And I don’t think that’s all too surprising. I think having a support network is important. And if you don’t have it at home, having a friend group or something like Colontown, to help empower you to ask questions and get second opinions is important. But I saw a patient just the other day that came for a second opinion. And I’ll actually share his story a little bit later. It was his wife that made him come. And that’s not an uncommon scenario. So the other thing they looked at was how far patients traveled to get to their health system. And what you see is for patients that lived within 50 miles, most of the patients that were coming were people seeking first opinions. But the longer patients had to travel, you can see that the first opinions decreased and there were more patients that were traveling great distances for second opinions. So the median distance that someone traveled for a first opinion to their medical center was 30 miles, compared to 50 miles. And that doesn’t seem like that big of a difference. But it is for patients. And of those 40% of patients, 700 patients that came there for a second opinion, 1/3 of those transitioned their care to this health system. Okay. And I think that’s a pretty common trend.

Dr. Michael Lidsky  8:20 
So, the other thing to consider is who you see initially, or who you see that kind of gets things going does have an impact on additional providers and therapies that a patient will require.

Dr. Michael Lidsky 8:45 
This ia a study published this year in Annals of Surgery, one of the top surgical journals, and they looked specifically at rectal cancer patients with Stage II or Stage III disease and specificaly at the role of where patients live geographically, rural versus urban, how far they traveled, and who did their colonoscopy, who facilitated their diagnosis. Rectal cancer, which is a little different than colon cancer, mainly from some technical aspects, the pelvis is a difficult anatomic location to operate in and there is not much space there. Rectal cancer, in general, is technically more challenging to take care of. We also, often, use multimodal therapy, meaning not just surgery. We use radiation, we use chemotherapy, and surgery, typically in a sequence to provide the best outcomes. The purpose of this study was to determine factors associated with rectal cancer surgery performed not just at high volume hospitals, but also by high volume surgeons. There are very well established correlations between volume, meaning the number of patients they see or the number of patients they operate on, there is a very clearly association between volume and outcomes. Not just for colon cancer but for noncancer diseases, like heart disease, bypass surgery, valve replacements, aortic surgeries, all of those diseases and processes have better outcomes when people that do more of it are involved. This is a retrospective analysis looking back on an administrative database. This is something available to anybody who wants to see it. It is the Seer Medicare Database. Everybody who qualifies for Medicare, so peple 66 and older. Again 2007 to 2011 and they broke hospital and surgeon volume into quartiles of very low volume, low volume, medium volume and high volume. Specifically for hospital volume, the very low volume was one to three rectal cancer patients per year, low volume was 4 to 7, medium was 8 to 15 and then high volume was 16 rectal cancer patients in the hospital a year. Surgeon volume was pretty similar. Very low volume was 1 to 2 rectal cancer operations per year. High volume was considered 11 or more.

Dr. Michael Lidsky 11:50 
So this is just kind of a proposed timeline of how patients make their way to diagnosis. There is some period prior to diagnosis where they may or may not have symptoms, they may or may not have some other health related issues. But eventually they come to a diagnosis and whether they have an incidentally detected cancer or they present with symptoms and it’s found due to that, they’re diagnosed. Once they’re diagnosed, there tends to be this indeterminate amount of time between their diagnosis and when they start therapy and for rectal cancer, that definitive therapy is surgery. So in this time, is it time to get neoadjuvant chemotherapy–chemotherapy before surgery? Is it radiation? Are they just bouncing between doctor’s appointments, you know, getting their cardiologist to approve them for surgery, seeing their primary care doctor to make sure their meds are okay, all those things can factor into this time period. Then they ultimately have surgery and go on to therapy after surgery. So they had 1600 patients with stage II or stage III rectal cancer. And specifically, when they compared the rural versus urban patients, about 20% were from rural locations and rural patients were younger, they were more frequently white, they were more frequently married, they were from lower socioeconomic status, and they had lower levels of education. These are just kind of general characteristics of rural patients. And when they looked at the diagnosing colonoscopy, rural patients compared to urban patients were more likely to have their colonoscopy by a general surgeon versus a gastroenterologist or a colorectal surgeon. There are a lot of different people that do colonoscopies. Some primary care doctors do colonoscopies, especially in very rural settings, they are actually obstetricians, OBGYN, that do colonoscopies, but they looked at general surgeons, gastroenterologists, primary care doctors and colorectal surgeons. So if you live in a rural setting, they were more likely to have their colonoscopy by general a surgeon and they were also more likely to have their colonoscopy at a hospital that sees fewer rectal cancer patients. So this is simply a geographic disparity, nothing more. There is nothing wrong with having a general surgeon doing a colonoscopy. I want to make that very clear. There are some general surgeons that do tons of colonoscopies, more than colorectal surgeons. But, in general, what they found is that because general surgeons and lower volume hospitals were involved they were being cared for by lower volume providers. Now, when it came to surgery, similar trends were observed. Rural patients compared to urban patients were more commonly cared for by low volume surgeons at low volume hospitals. If they went to a high volume center, they traveled much longer distances, and they were also less likely to have surgery with a colorectal surgeon. Now, again, there are a lot of different types of surgeons that do colorectal surgery, okay. There are general surgeons, there are surgical oncologists, there are colorectal surgeons, and again, all have varying experience, but we tend to think as physicians become more subspecialized, they tend to gain a skill set that’s somewhat unique. So these rural patients that were being treated for by lower volume providers were also being cared for by surgeons with less subspecialty training.

Dr. Michael Lidsky  16:15 
Now, the interesting thing here is, who did the colonoscopy had a huge impact on who the surgeon was. And again, this is not surprising. So on the left is surgeon specialty. On the vertical axis here is who did the colonoscopy, so colorectal surgeons, primary care physicians, gastroenterologist and general surgeons. And what you see here, just comparing the bottom bar to the top bar, is that the bottom bar for patients who had a general surgeon do their colonoscopy, which made up 12% of the cohort, if your colonoscopist this was a general surgeon, then you can see shown by the dominating black component of the bar, that you were more likely to have surgery by a general surgeon, probably the same general surgeon that did the colonoscopy, and only 35% of those patients were referred to a colorectal surgeon. That’s very different than if a colorectal surgeon did the colonoscopy, which was also 12% of the patients. But 84% of those patients had their rectum operated on by a colorectal surgeon, probably the same colorectal surgeon that did the colonoscopy. Now, interestingly, I found this interesting, if a gastroenterologist did the colonoscopy, it’s kind of a mixed picture, like 45% were operated on by general surgeons and 55% saw colorectal surgery and I would be willing to bet they didn’t state in the paper that this is all geography, where are you live, if you’re in an area where there aren’t board certified colorectal surgeons, and there’s a very busy general surgeon who does all the colorectal cases in town, that’s probably who you saw. Now on the right is a little bit different. The vertical component is the same, but the bars are representative of the surgeon volume. Regardless of the surgeon specialty, what is the the rectal surgeon’s volume? And what you can see here is that for patients who had colonoscopy by a general surgeon, only 30% of those patients had their rectum operated on by what we would call a high volume surgeon. Whereas if colorectal surgeons did the colonoscopy, that number was almost 90%. And the factors that predicted care by a high volume surgeon at a high volume hospital were patients that were healthier, they had fewer medical problems, they had their colonoscopy by a colorectal surgeon. And importantly, I think this is a huge component, they have proximity to a high volume hospital.

Dr. Michael Lidsky 19:16 
So, now moving on to patients with metastatic cancer.I think this is where the disparities and the controversies really show themselves so I do think that resectability is in the eye of the beholder. This is a study from Canada. They looked at the perception of resectability based on your specialty. We all have different definitions of what’s resectable. Every liver surgeon looks at a scan and it’s not uncommon to have different opinions on how to approach it. One stage resection, two stage resection, all resection, combination with ablation, do we use a pump? Do we not? Is it resectable? Is it not? We all have different definitions. And part of that is because we all have different skill sets and different levels of experience. So, what they did here is they took surgeons from different specialties, colorectal surgery, general surgeons, surgical oncologists, and specifically liver surgeons. And they also had medical oncologists and they showed them real cases, scans. And every single one of those patients that they showed them had already been successfully operated on and resected. Their liver disease was removed. So they took a group of patients that had definitively been managed with an operation, whether it was resection or ablation, and they asked all of these specialists to weigh in on what they thought the likelihood of resection was. And what you see here is that, depending on the specialty, there’s a huge difference in perception of resectability. Medical oncologists, they only considered half of the patients to be resectable despite the fact that every scan they saw had been resected. Colorectal surgeons, very similar, only 50%. And then with increasing subspecialty, training, surgical oncology, which may or may not have significant liver surgery training or experience and then, specifically liver surgeons, you can see that even the liver surgeons didn’t get 100% of it correct, but they were more accurate. So I think this really highlights that expertise and perception is an important part of determining resectability. Now, that perception of resectability impacts treatment choices. There’s a huge underutilization of liver surgery for metastatic colon cancer to the liver. And we know that in patients that are able to have their liver cleared, their survival is significantly better than if we cannot.

Dr. Michael Lidsky  22:32 
So this was a nice study from a couple of years ago. And what they did was they sent out a web based survey to 190 medical oncologists. So really good participation. And they showed them 10 patients scans, 10 real cases, and they asked the medical oncologists to determine resectability and paired with that they asked three liver surgeons to do the same thing. Now, the liver surgeons called 8 of the 10 scans resectable. And of those eight that the surgeons considered resectable, the medical oncologists only considered 30% of them resectable, 42%, possibly resectable after some chemotherapy, and they called 1/4 of them unresectable with no role for surgery. And when they looked back at the factors that were associated with that perception of unresectability, what makes a medical oncologist say oh, there’s no role for surgery, it’s based on increasing number of tumors, how big the tumors are, and whether or not there’s cancer in both sides of the liver. Liver surgery used to be very binary in terms of the operations. It was right hepatectomies and left hepatectomies or some variety of that. But in the modern era, it has changed significantly to the point where there’s something called parenchymal preserving operations where we do nonanatomic resections. We are able to remove tumors in a way that leaves as much liver behind as possible. And by combining that approach with ablation, we can actually clear livers with many tumors distributed in both sides of the liver. So that perception of oh, it’s in both sides of the liver, they’re not resectable, that doesn’t hold up anymore, but we still see that very commonly from colleagues and other specialties.

Dr. Michael Lidsky 24:42 
Now, this figure here just highlights the likelihood of a medical oncologist sending their patient for surgical evaluation. And it is based on whether or not they perceive the disease to be resectable. So these are the 10 cases and what you can see is that shown in yellow, these are patients that considered the cancer in the liver resectable, they were very likely, between 70 and 100%, to send that patient to a surgeon. If they considered the disease unlikely to get to surgery, even after chemotherapy, fewer than 10% of those patients were seen by a surgeon. And then of course, in the middle for people that were potentially resectable, referrals to surgery were really between 25 and 55%. So, I think that’s indicative of, again, people’s perceptions and misperceptions.

Dr. Michael Lidsky 25:50 
So I really liked this paper. This was a paper that came out this year, and really examined the role of the liver surgeon. This is one of two papers that came out this year really asking the same question. On the left is just a schematic of how they evaluated patients. And they basically had 72 patients that were evaluated in what we call a multidisciplinary conference or a tumor board where a liver surgeon specifically was not present. Okay, so basically a roomful of nonsurgical specialties. And all 72 of those patients were destined and recommended to have palliative chemotherapy for their liver metastases. They asked independent liver surgeons that had nothing to do with the care of these patients. They showed them the scans, and they assessed the resectability or perceived resectability based on basically a composite of how complex the disease was, and how complex the resection would be. And what they showed that in those 72 patients who were destined for chemotherapy only, never referred to a surgeon, when the surgeons looked at them, 44% of those patients were considered resectable. And when they looked at patients with only liver disease, meaning they didn’t have any cancer elsewhere, half of the patients were considered resectable. So this really highlights the importance of having a liver surgeon involved, and the determination of resectability. And my bias is that liver surgeons should also be involved early, when they are diagnosed, not six months into chemotherapy, not two years into chemotherapy, they should be involved early. Because whether or not they’ll become resectable, or are unresectable certainly dictates how much chemotherapy they get, or what strategies we use.

Dr. Michael Lidsky  28:00 
I want to show you a couple of quick examples of patients that I’ve seen recently. This is a patient who is 63 years old, you can see the scan on the left side, the darker areas in the liver are his cancer. And he had right-sided only disease, there was nothing in the left side of the liver. Now, this patient was under the care of a medical oncologist at my institution, right down the hall from me. We share clinic days and I was actually asked to weigh in on whether or not this patient would be a good hepatic artery infusion candidate after they had seen 10 cycles of FOLFOX and Avastin and when I saw this patient, I looked back at the initial scan, which is here, and the scan after 10 cycles of chemo which looked exactly the same. And what we determined is that this patient was actually resectable up front.  So again, big bulky tumor, and just lack of perception on what’s resectable and what’s not. Medical oncologists should not be making decisions independently on resectability. We ended up taking this patient to the operating room, I took out the right half of his liver. He did great. He then went on to get his rectal cancer removed and he did great. And nine months later, he’s cancer free. The importance of involving surgeons early in treatment cannot be emphasized enough.

Dr. Michael Lidsky  29:52 
This is another patient that lived eight hours from me in a neighboring state. He was diagnosed with a single tumor in the right liver, not very big, easily resectable. And his local doctors told him there was no role for surgery, there was no role to even see a surgeon, and he should get chemotherapy until he dies of this cancer. He had 14 cycles of chemotherapy, FOLFOX and Avastin. He came to me unable to feel his hands and feet. And finally, I think one of his children said, you need to go get another opinion. He drove eight hours to see me. And he had resectable disease, and we stopped his chemotherapy, we took him to the operating room, and we cleared him and ultimately took out his his primary tumor. So again, I don’t think it’s fair for nonliver surgeons to independently determine resectability.

Dr. Michael Lidsky  31:04 
So I’m gonna get into some of my biases and what I think specifically is important. I don’t have any more data to show you. But these are things that I think of when I think about second opinions. So first of all, I think it’s really important that specialists stay in their lane. I don’t think it’s fair or appropriate for medical oncologists to independently determine resectability. And I don’t think it’s appropriate for surgeons to independently dictate chemotherapeutic regimens. What is important is that we work together, that the surgeons and the medical oncologists, and the radiation oncologists and the interventional radiologists and all the people that care for this disease or any disease, are in good communication and work as a team to formulate a recommendation and a treatment strategy that is customized to the patient in front of us. Not all colorectal liver metastases should be treated the same. And it’s foolish for us to think that. So I think that every specialty should weigh in and have a discussion about therapy and what’s best for the patient. I also think it’s okay for a doctor to admit they don’t know something. When I get asked about chemotherapeutic regimens, I have a pretty good understanding just based on my training that was part of surgical oncology fellowship was learning about the other modalities of therapy. But while I have kind of the 30,000 foot conversation with patients about chemotherapy and what to expect, I defer all of their specific questions to the medical oncologist. And the way we have it set up here is that when the patients come to see us for evaluation, it’s a multidisciplinary appointment. They see a surgeon and a medical oncologist at the same time, almost always, because those conversations are much more informed when you involve people with additional expertise.

Dr. Michael Lidsky 33:17 
The other thing is trust. You have to trust your doctor, you have to trust your surgeon, you have to trust your medical oncologist. If you don’t trust them, get out of there and find another doctor. I think, in general, doctors have patients interests as a priority. I think doctors have different approaches to how they show that. But if you’re skeptical of what your doctor is telling you, it’s okay to go look for another one. The relationship that patients, especially cancer patients, have with their doctor is really important. They have to trust each other. They are going to know each other and get to know each other in ways that you would never experience with a primary care doctor. And I think that trust is really critical. Now, when you’re thinking about second opinions, I live at an academic center and a high volume center. So again, these are my biases. But I do think that volume is important. There are plenty of nonacademic hospitals in this country that do tremendous volume and have outstanding outcomes. You do not need to be at a Johns Hopkins or a Duke or a UCSF or a Michigan to get good care. What is important and I think what should be prioritized is the concept of volume. As I mentioned earlier, volume has been very clearly correlated with outcomes. And I think patients should feel completely comfortable asking their doctor and especially their surgeon, how many patients with colorectal cancer, do you see? How many liver resections do you do a year? How many liver resections does your hospital do a year? These are questions I get. Sometimes, many patients don’t ask. But when they do ask, I’m honest. I say this is how many I do, this is how many our group does. And I think also asking how long you’ve been doing it. If a surgeon has only done 10 liver resections in the last year, but it’s their only year in practice, that’s very different than somebody that’s done 10 a year for 20 years. That’s different levels of experience. So volume is important. I do think the other thing that is a big advantage of being seen or evaluated at an academic or University Hospital, and I do think most high volume centers have this, is the concept of multidisciplinary conferences, or tumor boards. When I see patients and there’s not a a clear, single answer for how to manage their cancer, I share them at our conference. And that way these patients are getting not only my opinion, but the opinion of six of my other partners who do the same operations. They’re getting the opinion of a handful of medical oncologists, the radiation doctors, and the interventional radiologists. And at the end of that conference, they have a recommendation that comes from probably close to 20 different experts in different specialties. That’s a big deal.

Dr. Michael Lidsky 36:59 
What else should patients consider when getting a second opinion? And when should they consider getting a second opinion? I think just simply validating what they’ve been told locally is very comforting. If you are being recommended to have radiation followed by a major rectal operation or some large operation directed at the liver and you get a second opinion and that second opinion is identical to what you were told first, that’s very comforting. I think second opinions are good when standard of care treatments aren’t working. They’re certainly good when standard of care options have been exhausted when you’ve gone through every line of chemotherapy. Going to get a second opinion at a busy center that might have clinical trials is a good thing to do. And I think the other thing is that not all liver surgeons and not all medical oncologists see everything through the same lens. Every patient is different. Every cancer is different. Every pattern of metastasis is different. And it’s okay to seek a second opinion to see if there’s a different strategy.

Dr. Michael Lidsky 38:28 
I’m going to show you two cases. This is a 55 year old woman who actually had colon cancer 10 years previously. She had her colon removed, she had adjuvant chemotherapy and she did great. Fast forward 10 years and she has bloodwork checked, and her CEA has risen abnormally high. She gets a scan, and her scan shows a very large tumor in the liver that was new. She had a liver recurrence 10 years later. It happens. She was seen at a hospital in town, a very good hospital in town and she was started on chemotherapy, which I think is completely appropriate. She got six cycles of chemotherapy with FOLFIRI and an EGFR inhibitor. And at the end of those six cycles, they got a scan that’s shown here and this tumor is unresectable. It’s not removable. It’s too big. It’s centrally located, and it’s involving too many anatomic structures that left it technically unresectable. She was actually sent to us by her medical oncologist for a second opinion. I think when specialists send patients for second opinions themselves, I think that’s fantastic. But had she not been referred herself and she would have found her way to us, that would have been great too. And when we saw her, we said, look, you know, standard chemotherapy is not working, let’s do something different. We put a pump in her, you can see that after three months of hepatic artery infusion, her tumor significantly shrunk, on the right side is after three months of pump chemotherapy, and it pulled away from the vasculature that was making her unresectable. And she ultimately underwent, about two months ago, she underwent resection with negative margins, and she’s doing great, cancer free. Okay.

Dr. Michael Lidsky  40:41 
Now, this is the patient I was talking to you about earlier, when I said his wife made him come, again, a common scenario. This is a young man who has a scattering of tumors in their liver and the colon cancer is still in place. This is a new diagnosis. There’s a tumor here on the left side, and then a couple of tumors here on the right side. You can see these darker circles. He started chemotherapy. He has actually had 10 cycles of triplet therapy, or even quadruplet therapy, FOLFOXIRI with Avastin. And he came to me as a second opinion. The first opinion he received at a local hospital that is very good, was to give him a little bit more chemotherapy, to do a portal vein embolization and to remove all of the tumors at once, with a small resection on the left, a very big resection, a right hepatectomy on the right, and take out his colon. I think that is a perfectly acceptable option. There’s nothing wrong with that recommendation. It is completely reasonable. And I told him that. But because we have hepatic artery infusion, I recommended something a little bit different. I recommended that we take out the tumor on the left, we put a pump in, we take out his colon, and we give him three months of pump chemotherapy with the goal that these tumors actually shrink down to the point where we don’t have to do a right hepatectomy. Maybe we can get away with doing less, which makes the risk for him significantly better. I think that option is also completely reasonable and appropriate. But because we have a therapy here that wasn’t offered at his other hospital, we were able to recommend something different. Both good options, both acceptable, neither right, neither wrong, just different. And I think that this is where, based on skillset and therapies available to us, we can look at patients and their disease through slightly different lenses.

Dr. Michael Lidsky  43:09 
So, the other things I think are important that patients need to know, and I think this is important for you as the patient empowerment group is how to ask for a second opinion. I do think patients should feel comfortable respectfully asking their doctors, should they get a second opinion? Can I get a second opinion? It’s my bias that a doctor should always say yes. I do think that second opinions are important. Personally, if I see somebody for their first opinion and what we’re recommending is very cut and dry standard of care, if they went to 10 other hospitals they would get the same 10 opinions, I still tell them look, I fully support a second opinion and I’ll give you as many names as you want, but I think you’re going to hear the same thing. And that’s up to you. Let me know, I’ll help you. If the doctors kind of nonchalantly say, Yeah, sure, get a second opinion, but they’re unwilling to provide names or recommendations for who to see, I think that’s suspicious. That means they don’t really support it. And if they tell the patient that they shouldn’t get one and shoot that idea down, I would ignore it and I would go get a second opinion. Again, these are my biases.

Dr. Michael Lidsky  44:42 
If patients aren’t sure, Colontown, this group we’re speaking with today, is a huge resource. I recommend my patients get on Colontown every single week. I don’t know how many of them do but I recommend it all the time. I think using your network, not everybody has a doctor in the family, not everybody has friends with doctors in the family, and using Colontown to help navigate these processes is really critical. The other thing is where should you go? You should always go to somewhere that has more experience or the same experience. If you’re at a very small, rural hospital, do not go to another small, rural hospital. If you’re going to take the time and spend the money to be seen by a different provider, go somewhere that has more experience, find someone that is a subspecialist. If you’re being seen by a general surgeon, find a liver surgeon, find a surgical oncologist. I think the easiest places to go that will probably get both of these top two bullets accomplished is by going to a university or academic hospital. And I also think traveling to a bigger city is more likely to have a higher volume provider at that hospital. The other thing to consider are logistics. Second opinions require patients to frequently travel and it’s expensive. If you live in California, there are innumerable excellent hospitals in California where you do not need to travel to New York City for a second opinion. It’s not to say you shouldn’t, but it’s not mandatory. I do think that one thing that COVID has actually also facilitated is virtual visits. This cuts down on time and money. Almost all major centers will see patients virtually. We can get the scans electronically, we can get the records, and we can have a conversation over a video conference, and talk about what we would recommend. We do this all the time. But I think importantly, don’t waste too much time. It’s important to start therapy. It’s important to get going and pick a doctor. There are a lot of patients that will shop around and see five or six people. And all that does is delay things.

Dr. Michael Lidsky 47:12 
Betsy asked me to talk about care at different hospitals. We call that fractured care. I think this is good and bad. But sometimes it’s just necessary. And medical oncology visits, specifically chemotherapy, can be given close to home. It’s not realistic for patients to travel five hours each direction every two weeks for FOLFOX. It’s just not. But it might be necessary for that same patient to have their surgery five hours away at a hospital that does a ton of it. So while that’s technically fractured care, meaning they get different therapies for the same disease at different hospitals, I think it’s important to consider those things. So I’ll conclude here.

Dr. Michael Lidsky  48:04 
Again, I think second opinions are important. Patients should ask. It’s okay to ask. Nobody should take offense. Get your second opinions at a high volume center. The internet is a wonderful thing most of the time. Patients should do their homework. They should check with Colontown and use their network. And I think be very deliberate about where they’re getting a second opinion, but also be efficient in how they go about doing that. Don’t waste time. Don’t delay your care.

Dr. Michael Lidsky  48:37 
This is my contact information. Here’s my email address. Here’s my my phone number to the office if anybody would like to call ask questions. If patients need a second opinion and they don’t know where to go, I’m happy to help. The surgical oncology world is small and we all have friends all over the country and colleagues and we are happy to help with referrals. So I’ll stop there. I’ll leave the rest of the time for discussion. And I’m happy to take any questions that you all have.

Betsy Post  49:17 
I do have one question that comes in. So I’ll open that up. I know you addressed this, but I think maybe if you could get slightly more specific. We  have a lot of patients that don’t want to get a second opinion because they really respect the first opinion that they get and they don’t want to hurt their feelings. They don’t want them to feel like they don’t respect them. I think they worry that what if it’s the same and I have to go back there? Are they going to treat me differently or not care about me? So kind of that. How do you suggest that the patients approach the doctor in this case or talk to them so that they know you’re respected but I really need to do this? ,

Dr. Michael Lidsky 49:55 
Yeah, that’s a really good question. As I mentioned, I think building a strong relationship with your doctors is important. And nobody wants to offend their doctor for fear that they may care for them differently. I think that’s probably a misconception. I don’t think doctors would universally take offense. But what I do think it’s best to be honest, tell your doctor, hey, you know, I’m really comfortable with what you’ve told me, and I’m eager to move forward. I do think it’s important, though, to get a second opinion and tell them that. I think what’s more offensive is doing it silently. And with electronic medical records, for example, if I see a patient, and then they go to UNC, eight miles away, to get another opinion, even though they didn’t tell me, it pops up in our charts. I can see it. So, I’m like, oh, I guess they didn’t like what I told them, I guess they weren’t comfortable with me as a surgeon or whatever it was, they didn’t like the chairs in the waiting room, I don’t know. But I think the patient should be honest with their doctor, tell them what they’re thinking. I think blaming a family member is always a good way to to navigate that. You know, my cousin lives in this city, and they want me to come see someone at Memorial Sloan Kettering, or whatever it is. My son or daughter thinks I should get a second opinion. I don’t think people would disagree with that. But be honest about it.

Lindsey Musick 51:44 
I just want to interject real quick, one of the things that patients often ask me is they’ll say my doctor offered HAI for this and I’m not comfortable with it. So I’m gonna go see this doctor out here and ask them what to do. And you kind of said something, you said ask your doctor, but I always say, did you tell? Did you ask the doctor? Is that the only surgical option I have is HAI? Or did you ask specifically, what your fears are about HAI? Like, did you say I’m worried that it’ll destroy the bile duct and I’ll have liver failure? Did you communicate your fears to the doctor? Because a lot of times I’m realizing when patients ask me, I know they told me that their plan for me was HAI and I’m not comfortable with that so I’m gonna go ask another doctor.

Dr. Michael Lidsky 52:00 

Lindsey Musick  52:00 
But I realized the doctor doesn’t realize that they’re 1. Nervous about what they told them about HAI and 2. That they might have three other, like you said, there was multiple good options for that patient.

Dr. Michael Lidsky  52:53 

Lindsey Musick  52:53 
So the first surgeon you go to might have multiple options. But if you don’t ask any questions about the first option they give you or communicate your fears, I mean I like to act like I’m kind of badass, at my appointments with my doctors. I’m like, oh, yeah, I’ll do that. I’m down for whatever you got. But then I go home and I’m like, that’s scary. I’m don’t know about that. So I’ll email him and I’ll be like, honestly, I’m scared shitless of your plan. So can you talk to me about it a little bit more now?

Dr. Michael Lidsky  53:24 

Lindsey Musick 53:26 
Sometimes I think we fear asking the questions to the doctors because we don’t want to offend by asking questions. Like they haven’t explained it right, or that we think we might know better.

Dr. Michael Lidsky  53:37 

Lindsey Musick  53:37 
But it’s important to ask the doctor–do you have any other options or communicate your fears, even though it’s kind of like, you know.

Dr. Michael Lidsky  53:45 
That is a really good point. I think part of the consent process is a discussion of risks, benefits and alternatives. That is supposed to be the consent process. Now, the alternatives are often neglected, because people don’t want to waste the time talking about all the things they wouldn’t recommend. But I think asking about alternative strategies is a good one. Now, HAI is a little bit tricky because it’s offered in less than 1% of hospitals. And if you go to a hospital that offers HAI, and you go to get a second opinion at a place that doesn’t offer HAI, they’re probably going to tell you, you don’t need HAI. Now, I do think that asking for alternative strategies to the physician that gives you recommendations is important, even chemotherapy. When you see your medical oncologist and they recommend FOLFOX, say well, is there anything else that would be considered? Is there a clinical trial that you would consider? The answer is no, right? Most people start with FOLFOX as it is  standard. But you can have those conversations and I think specifically for surgery, when you’re talking about the liver, there are a lot of different ways to chase after the liver. Right? Different types of resection, addition of ablation, hepatic artery infusion, embolization, radiation, sometimes we resect some stuff and radiate what’s left. There are a lot of different modalities. And I do my best to tell patients myself that, hey, I’m recommending surgery, the alternatives are A, B, and C, and the reasons why I’m not recommending those are. But I think those are really good conversations to have with any specialist who’s recommending any therapy. This is your life, your body, your longevity, your cancer. HAI, for example, is really inconvenient for a lot of people, right? If you live five hours from me, but now you’re coming to Duke every two weeks, indefinitely, that’s really inconvenient. Now, many patients will say, I’ll do anything, I’m happy to drive 10 hours round trip, if you think it’s going to prolong my life. But there are other patients who say, there’s no way I can make that happen. I have a job. I have kids, it’s just too much. And I do think that the alternatives is an important thing. That scan I showed you, where the other hospital wanted to clear everything at once, I think that’s perfectly reasonable. I think what I recommended was completely reasonable. But there are two or three other strategies I discussed with him that I also thought were reasonable with staging the liver operation, clearing the left and coming back for the right, those are all possible. And, again, therapy should be tailored to the patient, to their needs, to their cancer, and even taking family into account. Some of these patients require a family member to travel with them every time they come, maybe five hour road trip for a family with two small kids that don’t have child care isn’t a good idea and that’s okay. It’s asking for trouble. It’s asking for missed appointments, and deviations from care. So again, I think those things need to be tailored, but alternative strategies is a really important question.

Lindsey Musick  54:16 
Does anybody have any other questions that they would like to ask or any other thoughts about? Julie, did you?

Julie Clauer  57:52 
I have a follow up on that comment, which is, you see it across subspecialties and radiation, Some centers have certain kinds of radiation and others they don’t. Can we find out what is actually in the set of what you’re offering? And what are other things out there? And so I think it’s a really important question, because it’s like, Oh, I saw radiologist, and they didn’t suggest that it’s like, well, but how do you even know what the world can be? I mean, obviously in Colontown, we try and do that as much as possible. But how do we help patients with that?

Dr. Michael Lidsky  58:43 
Yeah, another good question. I think being involved in a large patient advocacy group like this is really helpful. Like, hey someone told me I should get a liver pump. That sounds crazy. And then you get on here and you see hundreds of patients that have had pumps, right? Not so crazy. I think that this is where doing your own homework is important. But it’s also unfair to expect patients that haven’t trained for 15 years to be able to digest everything available. And I think this is where that trust component comes in. A combination of trust and a combination of being evaluated by somebody who has significant experience, years in practice or volume of patients. Now, there are guidelines. The NCCN guidelines has recommendations for every cancer and it breaks it down into each stage. For liver metastases, for example, if it’s resectable it gives three different options on how to approach it. If it’s unresectable, it gives different options. I think that’s a good place to start generically, but it doesn’t really suggest which therapy and alternative is better than the others. And I think that’s where you have to rely on the specialist you’re seeing to take a step back, assess the patient as an individual, and determine based on their age, their medical problems, their functional status, how fit they are, how far they’re traveling, all these things. And then of course, the anatomic considerations of where their cancer is. You have to rely on that specialist to come up with a somewhat individualized plan.

Julie Clauer 1:00:56 
In surgery specifically, you had a chart that showed kind of a surgical oncologist versus a liver surgeon. So can you just talk a little bit, not necessarily liver specific, but in general, when should you go see a surgical oncologist versus a specialist and is it really different or not?

Dr. Michael Lidsky  1:01:13 
Yeah. Yes and no. Surgical oncology is a very broad term for people that studied the surgical management of cancer. In my surgical oncology fellowship at Memorial Sloan Kettering, I learned about breast cancer, colon cancer, liver cancers, sarcoma, melanoma, and I could go on and on. In liver surgery fellowships, which there are several types, you learn basically only about liver and pancreas surgery. But I would say, in general, most surgical oncologists practicing liver surgery, and most liver trained specialists practicing liver surgery are pretty interchangeable. If you’re seeing a surgical oncologist that has good experience, I do not think it is required that you seek out someone who had liver surgery fellowship training and see them separately. I think they’re very similar, especially the further people are into their careers.

Phillipa  1:02:36 
Beth, did you have a question? You can take yourself off mute.

Beth 1:02:42 
Oh, yes. This has been incredibly informative and helpful. I just had actually kind of a random question. During your time at MSK, did you work with Dr. Jarnagin?

Dr. Michael Lidsky  1:02:53 
Of course.

Beth 1:02:54 
He was my husband’s hepatic surgeon, and we absolutely adore him.

Dr. Michael Lidsky  1:03:00 
Dr. Jarnagin is one of a kind.

Beth  1:03:03 
He’s a character.

Dr. Michael Lidsky  1:03:04 
He is one of my mentors and I call him not infrequently to ask his advice. We keep in touch. But Dr. Jarnagin is one of the busiest liver surgeons in the world.

Beth  1:03:19 

Dr. Michael Lidsky  1:03:20 
He recommends that patients get second opinions.

Beth  1:03:23 
Absolutely. He is fantastic.

Dr. Michael Lidsky  1:03:25 
He is not opposed to it and he encourages it when people ask and I think that’s important.

Beth  1:03:32 
We would compare our Halloween costume pictures. He is quite the character. Absolutely love him.

Dr. Michael Lidsky 1:03:40 
Yes, he is.

Lindsey Musick  1:03:44 
One of the things you touched on that you were talking about is different people’s situations. And I just want to encourage folks that part of my experience has been to make sure that I’m clear about who I am in my situation, but also that I have the resources to make things work. So for example, I live in Eastern Kentucky. I don’t have any major hospitals close. I am two and a half hours from any major hospital. So I travel two and a half hours for treatment every other week and I go to the University of Kentucky in Lexington for that. I tried what you talked about with fractured care, getting chemo close to home and just using my team to consult and they were great. Even the oncologist that I worked with to get referred to the liver surgeon at UK, she would still email me and give me advice on what to tell my oncologist locally to help manage things as we were but it just became difficult. So it was easier for me to move everything to Lexington. So when I do go for an opinion, I feel like I need to tell them, yes, I am a single mom in Eastern Kentucky and I’m lower income. On paper, it looks like I have a lot of challenges that I would not be able to travel and things like that. But I do have a network. I do have Colontown folks and I do have church people that drive me to treatment every other week. And honestly, I’d be more tempted to skip treatment if they didn’t harass me into going or just pick me up. They know the schedule, they keep track of my schedule, and they don’t let me skip. So on paper, it might seem overwhelming to try and pursue an option because you have some challenges that you’re facing geography wise or income wise, but that’s part of what we can do in Colontown is discuss in the boards about how to address those different challenges and ways that we can problem solve that. Betsy and Julie do that for me a lot in the types of challenges I face. So I just want to encourage people don’t feel limited because of those things and we can work together in Colontown to try and face some of those. But when I’ve thought about going farther for more intense surgeries that I can’t get anywhere in Kentucky really, I take into account, what’s the probability of the surgery actually being effective? And how much time am I going to spend traveling for these opinions and getting all of this when I could be spending quality time with my kids and things like that. So all of that comes into play. And I think it’s important. We heard Dr. Lidsky talk about how doctors also think about that when they make recommendations. But it’s important for us as patients to also think about prioritizing what we want in our care. I know that my team understands my goals very well, they understand me, and when I first started meeting with them, I would ask who’s going to be in the tumor board? Is the oncologist? Because there was a GI surgeon, a liver surgeon and the medical oncologist and I’d seen all three of them. And I didn’t trust either the surgeons yet but I really trust the oncologist and I said, Dr. Patel, will you be in the tumor board? Because I feel like you understand who I am and what I’m doing and the other two make me a little nervous. So will you be in there? Now I have been seeing them for years, and I would trust any of the three and they know me better now after all this time. You all know I talk too much. But I just want to encourage you that that’s part of what we do in Colontown. And we also have the Second Opinion Project. And as you guys being Empowered Patient Leaders going through this, we need to refer patients when they talk about the challenges that we do have a fund that helps finance second opinions. So you guys can be helpful in tagging folks or tagging the website for a second-opinion things. Does anybody else have questions or comments to share?

Julie Clauer  1:08:38 
I think there’s also a difference between a medical oncologist giving their surgical opinion or a medical oncologist telling you what the surgeon said in tumor boards. So they’re basically the conduit, and those are two very different things. So I think it’s important to note that sometimes we encourage getting that opinion, but you might be getting that opinion secondarily. So I think hearing it from your medical oncologist isn’t the issue. It’s what are they telling you? Are they telling you their opinion? Or are they telling you the surgeon’s opinion? And if the surgeon’s opinion is you’re not resectable, then maybe now’s not the time to go. So I think that’s another kind of important distinction that you need to make sure that it’s not, you have to go see that specialty, it’s are you getting that specialties’ opinion is more of the question.

Lindsey Musick  1:09:00 

Lindsey Musick  1:09:21 
That’s a really good point, Julie. I think if it’s relayed from the expert, that’s very different than a nonexpert’s opinion.

Julie Clauer  1:09:47 

Lindsey Musick  1:09:49 
Laila, you had a question?

Laila  1:09:54 
It’s fine. I have processed what I’ve heard. I’ve got a bit of a different situation of not being there in the States by you. I’m in South Africa. So I have quite a little bit of a difficult situation. When I was diagnosed and I got to eventually see the oncologist, he looked at all my reports and everything and he basically said to me, Laila, you know, there’s not much we can do for you except buy you time. And for me to do the alternatives to just buying time means huge costs. Never mind the rand/dollar exchange, even if I think about dollar exchanges, I would have to sell my soul or sell my right arm at least in order to get an alternative to what I’m receiving at the hospital I am now. I listen to you talk and I think my question I suppose would be and I don’t mean to be crass about asking this, so I’m being honest asking this, in doing all these, I can only do CAPOX. That’s all that is available to me is CAPOX. So with the tumor spread to liver and mesentery, and peritoneum and all of that, I’ve been told basically all I have resources to is CAPOX and possibly maybe resection if it gets to that. But at this stage, it isn’t. So as I said, I really don’t mean to be nasty asking this, how much difference in time does it buy me by selling my soul to the devil? And affording private care to maybe look at things like the HAI and the immunotherapies and all of that? So that’s basically what I’m wanting to know. Is it worth all those expenses? Does it buy you a very much longer lifetime? Or does it come down basically to quality of care? Because I think that’s what I’ve settled my mind at, is quality of care with my family, as long as I’ve got time with my family. I’m lucky my kids are older, you know. So I guess that’s my question, and I put my hand down because I wasn’t sure if it’s really relevant or not. But maybe doctor, you’ve got something to add.

Dr. Michael Lidsky 1:12:22 
Yeah. Thank you for your question. And I’ll try to answer it as best as I can, not knowing anything more than you just told me about yourself. I do think that, and I have these conversations with my own patients, especially patients where I think cure is not possible, okay? We talk about balancing longevity with quality of life. And I think that’s tremendously important. Because if we were to throw therapy at you that improves your life expectancy, by let’s say, a few months, or six months, but you have a significant impairment in your quality of life because of toxicity from those drugs for that entire extra amount of time, only you as the patient can determine if that’s worth it. Okay? I tend to tell patients that I don’t think it’s worth it. And when I see patients who I think we can prolong their life, but it’s not going to be pleasant. I’m very honest with them about that. I think that the financial burden that cancer impacts on patients and their families is tremendous. Even with good private insurance in the United States, it still costs a fortune for the travel, the nights in hotel rooms, time away from work, time away from work for their family members to be with them. It’s expensive. And those financial aspects also need to be taken into consideration because financially burdening or devastating a family just to get them a couple of extra months I think is a tough sell. And I think it’s inappropriate for most people. Unless there’s a reason why that couple of months is really important. Your son or daughter is getting married and you want to be alive in three months when that wedding happens. The birth of a child or grandchild or something. I think there are reasons to push hard and to accept financial hardships. But I do not expect that of everyone, and I don’t expect it of most people. So not knowing much about your cancer, CAPOX is a very standard therapy that we give here. And I suspect you’d probably be getting the same thing if you were here in the United States. So I do not by any means think that you’re getting inadequate or less than standard of care. Are there things here that may be available to you if you were willing to travel and pay for it? Maybe, but I don’t know. You know, clinical trials, things like that. Now clinical trials are not typically things that you pay for as a patient. They’re covered. But there are components of clinical trials that your insurance would pay for. The standard of care components of clinical trials are typically covered by insurance, which you wouldn’t have coming from South Africa. So within that context, I think, for you, and for people in similar scenarios where you’re getting standard of care that is acceptable, I think that’s fine. Does that answer your question?

Laila  1:16:40 
Yes. Very much doctor. Thank you. And as I said, I’m always grateful for everything that I get, especially living in South Africa. We have a huge gap between what I have access to and never mind in the rural areas. So I’m very grateful. So thank you for taking the time to chat with me to answer that question. Thank you.

Dr. Michael Lidsky  1:17:01 
Yeah, you’re welcome. The health disparities in the world are unfortunate. And even in this country, in the United States, there are tremendous health disparities where we have some of the best medical care in the world and people in this country don’t have access to it. I actually, on occasion, will care for prisoners. I actually operated on a prisoner last week. And the prison guard who was with him was telling us a story about an inmate who needed very expensive medical care, couldn’t afford it, didn’t have insurance, walked into a bank, fired a gun into the air, put the gun down, and sat down and waited to be arrested. That individual was so desperate that being put in prison to receive his medical care was more important to him than experiencing whatever disease he had without treatment. And that’s extremely sad that that kind of thing happens in a country as wealthy as ours.

Keith Hollingsworth  1:18:42 
Dr. Lidsky, if you have time for one more question.

Dr. Michael Lidsky  1:18:45 
I have all the time in the world.

Keith Hollingsworth  1:18:44 
I guess this is maybe more of a curiosity. So I’m of what you kind of presented, best case scenario. I had the tumor board, I had the liver surgeon and oncology worked really well, referrals, all that kind of stuff. And I’m just about three and a half weeks out from my liver resection. And when I was talking to my liver surgeon post surgery, he talked about chance of recurrence and if that does happen, they can just resect again. In one of his patients he’s done a resection seven times on. So I’m just curious, like, survivability of that organ. Right? So what is possible in that space and as we talk about reoccurrence, or even HAI stuff related, like how much can that organ handle before we start to digress, I guess, in care?

Dr. Michael Lidsky  1:19:40 
That’s a really good question. And you look great for being three weeks out from a major surgery. So whatever you’re doing keep it up. The liver is a somewhat forgiving organ, but it is only to a point. And it all comes down to the underlying health of that liver. Okay? And a perfectly healthy liver, a young person who doesn’t drink much and doesn’t have liver disease and isn’t obese and hasn’t had chemotherapy, a perfectly healthy liver, like a college student, you can remove 75 to 80% of the liver at once, and the remaining 20 to 25% will compensate for the body’s metabolic and synthetic demands. Okay? It doesn’t grow back, so to speak. like an iguana’s tail grows back. But what’s left behind, it’s called hypertrophy and it grows. Basically the cells that are left behind get bigger and it grows. So when we remove the right half of the liver, it doesn’t regrow a right liver, but the left liver expands to make up for that. Now, when you’re talking about recurrence, the short answer is you can go back and remove liver over and over and over until you get to the point where there just isn’t enough liver left. And again, it depends on the quality of the liver. So in somebody who’s had chemotherapy, that impairs the health of the liver, significantly. There are anatomic considerations too. So if the tumor comes back in a location that’s next to a vessel that cannot be removed, then that makes surgery less likely. But, in general, you need some critical mass of functioning liver. And that is different for everybody based on the underlying health.

Keith Hollingsworth 1:22:00 
Great, thank you so much, I appreciate your time today very much.

Dr. Michael Lidsky 1:22:03 
You’re very welcome. Where did you have surgery? If you’re willing to share?

Keith Hollingsworth  1:22:06 
IU Hospital in Indianapolis, Dr. House.

Dr. Michael Lidsky  1:22:09 
Yea. Mike House is fantastic.

Keith Hollingsworth  1:22:11 
He is amazing. Yep. I was really, really lucky.

Dr. Michael Lidsky  1:22:19 
Happy to answer any other questions?

Phillipa  1:22:29 
Go ahead. Thanks.

Lindsey Musick  1:22:33 
It’s almost 2 am in Australia. So Phillipa is working hard to stay with us.

Phillipa 1:22:36 
Tha’s right. And so my question might not be specific to the US, but it was really interesting, I think what Lindsey was saying or what you were saying in terms of access to specialist advice Because one of the things I got was this sort of distant board that was multidisciplinary that told me no, can’t, not resectable. This was lungs for me. So totally different body part and everything. But it was more on the question of how pushy you can be in terms of asking who’s on that board, you know, in terms of maintaining that relationship. And I think I’ve been quite pushy, but I’m always aware of wanting to keep that good relationship. So can you be very specific and say, so who was on the board? What’s their specialty? Yet never occurred to me at the time. I just took it as, you know, gospel, and it was only a bit later that I thought to ask for a second opinion and go further. Yes, I’m just wondering, do you think doctors are offended if you really start quizzing them on who was on there? What’s their experience? Da, da, da, da, da?

Dr. Michael Lidsky  1:24:03 
I hope not. I would hope that physicians wouldn’t be offended by that question. So the way I handle multidisciplinary conference, is I will call the patient and say this is what I’m recommending, I’m going to show your scans at our conference this week, and I’ll call you afterward with the final recommendation. And I call them and I say these are the things we discussed, just like we had our conversation in clinic and some of the surgeons thought this, other surgeons thought that, but I will tell them that the medical oncologist and the radiation doctors all agreed with our initial plan, and I’ll tell them who was there. Now, most of the people at that conference, you will not you will not have met them. because they’re not necessarily your doctors, unless you’re in a smaller health system where there’s only one surgeon, one medical oncologist, one radiation doctor, and you may have seen all those people. But I think it’s totally fine to ask what specialties were represented at that conference? I think that’s a good question to ask. Were there any other suggestions or alternatives proposed? I think that’s a good question to ask. And I think this is medicine in 2021, it is a consumer driven commodity. Patients are in the driver’s seat. If patients want to know something or do something, it ultimately is up to them. The days of paternalistic medicine are over where the physician said, you have cancer, you’re going to have an operation, and there’s no discussion, no alternatives, that’s well behind us. And I think as a patient, the more information you have to make your decision, the more information you have to be on board and comfortable with the recommendations that have been given, those are things that patients should have access to, and should be available to patients, because it all leads back to the relationship with the doctor. And if you don’t have enough information to be confident in the recommendation that you’re being given, there’s a problem that’s going to lead to difficulties along the way, in terms of, what  if you have a complication after surgery, and you already don’t really trust the doctor, that’s a problem. Right? If you have a good relationship with your physician and something bad happens  that may or may not have been discussed as a possibility, it is so much easier to work with them and to trust them and their team to get better from that complication than it is if you’re already lacking that trust.

Phillipa  1:27:20 
Yeah, well, thank you. That’s great. And I think perhaps I recognized there was a problem even though I couldn’t really articulate it all and think why. But that’s really helpful. And I was sort of thinking that Lindsey’s point because my husband and I always kind of joke that we need to train doctors, and we don’t mean that in a rude sort of way. But we need to train them in what we want. And I’ve been told that I’ve had very aggressive treatment. And I don’t know if they mean, I’ve been very aggressive in pursuing it, as well as very aggressive. But we always feel like if there’s ever a new doctor, you have to go through that same process that Lindsey has, you know, I’m willing to do this. I can do this and to make it very upfront. Yeah. And I think perhaps particularly based on that experience, where I’ve had some fairly distant advice, and none of what you’re talking about makes me realize perhaps how much I missed out on back then. But anyway, I’m still here and going alright. So thanks very much for that. That’s really useful.

Dr. Michael Lidsky 1:28:26 
You’re welcome. You know, not all doctors, we’re not all the same, right? And there may be doctors out there who are offended when you probe them about who was at conference? And can I get a second opinion? But that should be the minority of physicians, I would say. It really should. And I think as time goes on, those people will be fewer and fewer. Because the way healthcare is today doesn’t really allow for that. We don’t work in a silo. We work as a team. And to be honest, there’s nothing better than recommending something to a patient and they go somewhere for a second opinion and they get the same recommendation and they come back to you and say, Hey, I saw this person who you sent me to and they they think you’re great. And what you recommended is exactly what they recommended. And when can we get started? But you also have to be prepared to lose patients, right? You send people to your colleagues or referrals at other hospitals for second opinions and maybe they like what they hear there or at the second opinion. That’s okay. It’s okay. We have to be prepared for that. That’s life.

Phillipa  1:29:52 
Okay, thank you.

Lindsey Musick 1:29:56 
I think, like you said, sometimes, just like the doctors have to kind of gauge what their understanding of the patient is, we kind of have to gauge the doctor. My original oncologist was not happy about me going somewhere else. He would show me the scans. And he always told me I would never be resectable. And eventually, I said, well, it looks like they’re all on one side and may I at least talk to a surgeon. And he said, well, Lindsey, if you’re really going to insist on talking to a surgeon, I’d prefer you go to Louisville and talk to these people. I’ll set it up, but it never happened. So I did go ahead and I just Googled the closest NCI center and went there. And when I came back and I talked to him, he saw in the notes, like Dr. Lidsky said, they can see what we talked about and he saw that, even though we didn’t have HAI yet, he saw that we talked about that. And the longest conversation I ever had with my original oncologist was about HAI. He was so mad that we talked about HAI. He was so angry. And he spent a long time telling me why it was a horrible decision. But I never did have the HAI pump because I had resection before it was available in Kentucky and I could only get treatment in Kentucky. But I did get surgery and when I went back to my oncologist after the surgery, he kept saying you’re a miracle, you’re a walking miracle, I can’t believe that. I was like it’s not a miracle, it’s science. This is good. There’s medical options, we should be giving options. But now Dr. Cavnar, I can ask him anything. He will never be offended. Now he will like challenge me on some things, like my current plan. We made an agreement that if I go see the doctor that I want to see for the second opinion, I will also see the one that he’s recommending. So I’m comparing both programs. And he’s holding me to that.