How Can Advanced Prostate Cancer Disparities Be Reduced?

How Can Advanced Prostate Cancer Disparities Be Reduced? from Patient Empowerment Network on Vimeo.

What are some ways that advanced prostate cancer disparities can be reduced? Expert Dr. Isaac Powell from Karmanos Cancer Institute discusses early detection, recommended screening ages for African Americans versus European Americans, and how some government agencies can aid in reducing disparities.

See More from [ACT]IVATED Prostate Cancer

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Are There Worldwide Links to Aggressive Prostate Cancer?

Are There Worldwide Links to Aggressive Prostate Cancer?

Advanced Prostate Cancer Outcomes: Addressing Disparities and Exploring Solutions

Advanced Prostate Cancer Outcomes: Addressing Disparities and Exploring Solutions

Do Prostate Cancer Genetics Differ in African Americans?

Do Prostate Cancer Genetics Differ in African Americans?

Transcript:

Lisa Hatfield:

So, Dr. Powell, in your work, have you come across any innovative approaches or interventions that have shown promise in reducing racial disparities and improving outcomes for patients with advanced prostate cancer?

Dr. Isaac Powell:

Yes. Number one, educating the community about prostate cancer. Early detection is extremely important. I tell them that they should get their PSAs and digital rectal exams. I also tell them again, about obesity and exercise, how important it is to do that because it may prevent prostate cancer. And in terms of advanced disease, to just try to do the best they can and prolong in the survival by participating in clinical trials. And so I do quite a bit of educating in the African American community. In fact, in the ‘90s, we went to 51 churches, African American churches to talk about the prostate cancer and we also did testing. And what we learned in the ‘90s that mistrust factor was a major factor that prevented men from going in to be tested.

We also learned that men really don’t take care of their bodies as they should, and women have played a major role in the healthcare of men. So we start educating women about prostate cancer and encouraging their husbands to come in for examination, and very frequently, the wives have to bring their husbands in for testing or insist that they do that. I have this statement, I have a slide that says, men, they better care of their cars than they do of their bodies. And, in fact, they deny that they have any symptoms, and when they do, they don’t do anything about it until it’s too late.

Lisa Hatfield:

I have one follow-up question to that too, so you mentioned screenings, and I looked up prior to talking with you just to see what the general guidelines are for screenings for men, for prostate cancer, and it seems like they run the gamut. Do you have recommendations, or do you think the recommendations will change guidelines for screening and given your data and your research, is there a difference in screenings between European Americans versus African Americans?

Dr. Isaac Powell:

Yes. Because of what I’ve been talking about the cancer grows faster, and the significant cancers, the ones that are growing faster and become metastasized began in the 40s in African Americans, and so for European Americans has been recommended testing at age 50. I recommend age 40, American Cancer Society recommends age 45. Now, I believe at age 40, and I tell my patients that’s when they should start, African Americans that is, start testing for prostate cancer, specifically the PSA and digital rectal exam, and particularly if they have a family history. Now, the family history, if they only have one or two members is not much different than the aggressiveness among African Americans or European Americans.

If they have five or six members, not just a prostate cancer, but breast cancers as well, that means that they have a strong family history for having prostate cancer. If they have breast cancer, ovarian cancer in their family, or colon cancer, lung cancer, all those cancers are responsible for having a cancer and any specific cancer, if you have prostate cancer, breast cancer, you’re at risk for having colon cancer, for example. So that’s more recently talked about, multiple cancers in the family are even more important than having just prostate cancer in your family.

Lisa Hatfield:

Dr. Powell, given your expertise, what policy changes or healthcare system reforms do you believe are necessary to tackle the racial disparities in advanced prostate cancer care on a broader scale?

Dr. Isaac Powell:

Yes, policies are made by the government essentially. And so you have to encourage CDC, Centers Disease Control, US Preventive Services, which has done a disservice and prostate cancer. In fact, in 2012 they had that PSA did not show any evidence of preventing death from prostate cancer. They rescinded that 2017 recognizing that their recommendation 2012 was incorrect, and so US Preventive Services and the CDC, as well as the National Institute of Health NIH, have to come together and say, this disease is not only prostate but breast cancer, triple-negative breast cancer, colon cancer, lung cancer, all of these are more aggressive among African Americans, and we have to make a statement that screening has to be done earlier, education has to be emphasized.

And, in fact, COVID testing, it was almost mandatory on the circumstances that that happened. We used to demand that syphilis tests be tested if you got married. The government can also make it mandatory to be tested if your age, 45, American 50 for prostate cancer and maybe other cancers as well. So the government has to play a major role in establishing policies for testing, and I think that that would be very helpful in eliminating the disparity. 

Lisa Hatifield:

And then from the patient perspective, it sounds like, and just trying to clarify this to when you talk about screenings for a patient to get screened to the appropriate time, that includes both the PSA test and the digital rectal exam, is that correct?

Dr. Isaac Powell: 

Absolutely.

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How Can Advanced Prostate Cancer Care Barriers Be Overcome?

How Can Advanced Prostate Cancer Care Barriers Be Overcome? from Patient Empowerment Network on Vimeo.

How can barriers to advanced prostate cancer care be overcome? Expert Dr. Isaac Powell from Karmanos Cancer Institute discusses medical mistrust in the African American community and advice he gives to patients about prostate cancer screening and prevention.

See More from [ACT]IVATED Prostate Cancer

Related Resources:

Advanced Prostate Cancer Outcomes: Addressing Disparities and Exploring Solutions

Advanced Prostate Cancer Outcomes: Addressing Disparities and Exploring Solutions

How Can Advanced Prostate Cancer Disparities Be Reduced?

Are There Worldwide Links to Aggressive Prostate Cancer?

Are There Worldwide Links to Aggressive Prostate Cancer?

Transcript:

Lisa Hatfield:

Are there any challenges unique to minority communities that hinder access to advanced prostate cancer treatments and therapies? And do you have thoughts on how these barriers can be effectively addressed?

Dr. Isaac Powell:

I do. First of all, the diagnosis has to be made. And so that’s made by screening, by the PSA testing and digital rectal exams. Now, some people are talking about, well, we don’t need to do the digital rectal exam. That absolutely is not true. You can have a very aggressive cancer and have a normal PSA. We know that the PSA is not 100 percent accurate in diagnosing, predicting that you may have prostate cancer sometimes.

And I’ve had several patients who had normal PSAs, abnormal rectal exams, and as a result, I’m biased with them. If you don’t do the rectal exam and you have a normal PSA, you may miss aggressive cancers. So definitely have your usual rectal exam, excuse me. And once after that, if you have a biopsy, and if it is positive, then again I think that aggressive therapy is the way to go, if you’re in good shape.

Now, people are afraid of cancer. I mean, afraid of surgery. I’ve had surgery, so I can talk to them about what I’ve had and what you go through. Men are also concerned about losing their sexual function and those kinds of things related to the treatment of prostate cancer. And I can tell them that the quality of life is okay after that because we have ways of treating sexual dysfunction, the pill that everybody knows about, as well as injection and penis and ultimately the penile prosthesis. So that can be fixed.

And the other issue of losing control of the urine, that can be fixed as well. And so those are the things I tell people about not specifically among African Americans. There’s the genetic and the biology that I have to discuss, but one of the things that drives these genetic cells is obesity.

Obesity can produce these pro-inflammatory cytokines. So I always advise them to, if they are obese, to reduce their weight and their fat, particularly belly fat. That’s challenging because people have difficulty losing weight. The other thing is exercise. Exercise is a key that I think it is the most important factor in treating many health conditions, exercise. And what exercise does, and this has been studied in breast cancer, it decreases the expression of the genes that I described earlier. In terms of prior driving the cancer and breast cancer, they’ve found it decreases the pro-inflammatory cytokines. I described the tumor necrosis factors IL-6 and IL-8. So that’s important, exercise. So those are the things that I tell patients. And now in terms of advanced disease there are clinical trials that are there.

And we do these trials to decide what’s the best treatment for cancer, even though we don’t have “a cure.” Now, the problem among African Americans is that they don’t trust these clinical trials because of the abuse that African Americans have suffered through slavery and all the other kinds of things when they’ve been treated as less than human, like animals being operated on without having any anesthesia and many other abuses that have occurred. And so there’s this major distrust now that’s very difficult to eliminate in the Black community, especially if there are very few African American doctors to take care of them. So what I think that we have to fix that question of distrust, and that’s going to take a while, but I talk to them always about this mistrust issue, because I can’t see everybody, although we do need more African American doctors and nurses to take care of them and to encourage them to participate in clinical trials and to be seen as a person who is going to be taking care of them in clinical trials, that’s very important.

Often we talk about access to care, but particularly African Americans that mostly live in large cities where there is access to care. But, in terms of one particular example that’s brought up on occasion is what has occurred in Baltimore and other big cities where I talk to an African American, you know Johns Hopkins is right in the middle of the African American community. So it’s not about access again, it’s about mistrust. And I said, “Well, why don’t African Americans go to Johns Hopkins?” Well, she says, “If you walk past Johns Hopkins, they may steal your bodies.” I said, what? I didn’t believe that, but I’ve been reading literature, particularly one called the Medical Apartheid where they talked about African slavery, where they dug up the bodies of slaves to practice the anatomy.

And so that’s where this idea occurred. At night, they would dig up the bodies and do this, and not only in Baltimore, but other cities as well. So again, the mistrust issue is very difficult to resolve because of those issues. And people talk about that, well, I just don’t trust the white healthcare system, period. And don’t want to go until they’re having symptoms, and then they have no choice. They have to go. And by this time, the cancers are more advanced and cannot even prolong life expectancy in those particular patients. So I’m not sure I answered your question in terms of what a person or what I would do to activate participation in the healthcare of advanced disease.

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Do Prostate Cancer Genetics Differ in African Americans?

Do Prostate Cancer Genetics Differ in African Americans? from Patient Empowerment Network on Vimeo.

Do the genetics of prostate cancer vary in African Americans? Expert Dr. Isaac Powell from Karmanos Cancer Institute discusses what research has shown about gene expression and what occurs in the body in African Americans versus European Americans.

[ACT]IVATION TIP

“…patients need to take charge by asking questions about the therapy. Again, ‘is it going to cure me, and is the chemotherapy going to cure, immunotherapy going to cure? If not, how long do we think that I will live?’ That’s a good question, that I’d like to know if I were a patient.”

See More from [ACT]IVATED Prostate Cancer

Related Resources:

How Can Advanced Prostate Cancer Disparities Be Reduced?

How Can Prostate Cancer Disparity Gaps Be Overcome?

How Can Prostate Cancer Disparity Gaps Be Overcome?

Advanced Prostate Cancer Outcomes: Addressing Disparities and Exploring Solutions

Advanced Prostate Cancer Outcomes: Addressing Disparities and Exploring Solutions

Transcript:

Lisa Hatfield:

So, Dr. Powell, I just read a bit about your really impressive research, particularly with regard to the biology and genetics of prostate cancer. Can you provide an overview of your research focus on how prostate cancer impacts African Americans in comparison to other ethnic groups?

Dr. Isaac Powell:

Yes, I would certainly love to do that. In 2010, we found that the cancer grows faster among African Americans compared to European Americans. And those are the terms we use now, as opposed to Black and white. In science, we use those terms. And so at that point, I thought that this may be driven by the genetics and biology. So in 2013, we used what now has been considered the artificial intelligence.

We use bioinformatics, which is computational biology, and gene interactive and network analysis to evaluate the cancer tissue. And so at that point, we identified, and we asked the question, are there genetic differences between African Americans and European Americans? And what they found were driver genes, driver genes being the genes that drive the cancer, that make the cancers carry out a function, a mechanistic function, as opposed to passenger genes that are just associated with the cancer, just as in a car, the driver is the one that controls the car, the passenger sits there. These passenger genes, yes, they’re associated with aggressive cancer, but they have minimal or no function. The driver genes are the ones that are controlling the cancer, the function mechanism of the cancer progression. And so we identified in our analysis 21 genes that were different between African Americans compared to European Americans, different in terms of the expression of the disease, not different genes, but different expression of the genes.

What we found is that African Americans have a greater expression of inflammatory genes and transcript genes. And I’ll be more specific about that in a moment. Whereas European Americans had a higher expression of lipid metabolism genes. Those are genes that are associated with fatty acids as well as unsaturated fatty acids, specifically omega-6 as opposed to omega-3. But there is a connection between these two gene interactions at one particular molecule called tumor necrosis factor. And this gene then interacts with both the lipid metabolism genes as well as other inflammatory cytokines. And the genes that we found that were more specific in among the inflammatory genes were the pro-inflammatory cytokines, and those were IL-6 tumor necrosis factor, IL-8, and IL-1B as well as CXCR4.

These are what are called pro-inflammatory cytokines and chemokines. And they carry out functions that cause the cancers to invade. First of all, the cancer initial is cancer cells are stuck together. We call them adherent. They have to come apart before they can spread and go elsewhere. Well, these genes cause that it’s called epithelial mesenchymal transition. And once that happens, they’re capable of being transferred to distant sites such as the bone. And they also cause increased blood flow to the cancer. They also cause the oxidative stress that is driven by a molecule called reactive oxygen species.

And we’ll come back to that particular molecule because that’s important. Once it causes the oxidative stress, this causes DNA damaged repair genes to develop as well as mismatch genes. This mismatch means there are gene molecules that are stuck together, and there is an order. This order is upset by this particular oxidative stress, and those are mutated once they are repaired, and they impact on the mitochondria, which is a molecule in the cell nucleus that controls the chemistry of the cell.

And then this activates cancer stem cells, which is really important. And this is where we are going now with the cancer research. So TNF, the tumor necrosis factor IL-6 and IL-8, and the IL means interleukins. That’s what that stands for. They activate that pathway, the oxidative stress pathway. They also individually activate other pathways that lead to cancer stem cells. And I mentioned cancer stem cells because that’s the reason why chemotherapy and immunotherapy and all the drugs that we’ve used don’t work because the cancer stem cells undergo mutations and these mutations change the character of the cell. 

And that’s why the cancer cells resist that after a certain period of time, now these drugs will work and prolong survival, but they do not cure them because of the cancer stem cells. And so the cancer stem cells, in summary, are driven initially by the pro-inflammatory cytokines. So my research currently is to, well, how do we inhibit these pro-inflammatory cytokines? And that’s where we are now trying to develop a drug. We’re at the stage of mouse at this time, mouse biology and testing the drug in mice, not ready yet for human testing. So that’s where my research is headed, and I believe that that is going to work if the drug works.

Lisa Hatfield:

So just a follow-up question to that is, as a if I were a patient of yours or a family member, I might ask, so with your findings, do you think that this could lead to a cure, for example, for advanced prostate cancer?

Dr. Isaac Powell:

Yeah. I hate to use the word cure. The word I use is that we, our goal is to eliminate death from prostate cancer. That’s the term I prefer, because when we talk about cure, we have to know what causes it in order to really be certain as we are curing it. Because I don’t know whether what we’re doing is going to eliminate death, but that’s our goal. So I don’t like to use the word cure, because that’s the magic word and everybody gets excited. So I don’t want to get people excited too soon. So that’s where I am with my research.

Lisa Hatfield:

Well thank you so much for that. And do you have an activation tip for patients for this question, Dr. Powell?

Dr. Isaac Powell:

Yes. I think that, again, patients need to take charge by asking questions about the therapy. Again, is it going to cure me, and is the chemotherapy going to cure, immunotherapy going to cure? If not, how long do we think that I will live? That’s a good question, that I’d like to know if I were a patient. In fact, I’ve had prostate cancer and bladder cancer, so mine was early, so we didn’t get into those kinds of questions. But I like to know whether is this going to be something soon or later? Nobody can tell you when you may pass away from any cancer. I never give a patient any time. If they ask me, “Well, am I going to live six months or three years?” I don’t know. Because everybody’s different. Everybody responds differently to these particular treatments. So, but ask the questions as specific as possible that you’d like to know about the treatments, because there are several treatments, and there may be many answers.

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How Can Prostate Cancer Disparity Gaps Be Overcome?

How Can Prostate Cancer Disparity Gaps Be Overcome? from Patient Empowerment Network on Vimeo.

 How can research bridge the gap in prostate cancer outcomes among different demographics?  Dr. Ronald Chen from University of Kansas Medical Center speaks to the work he and his colleagues are conducting around prostate cancer disparities and the different outcomes for different populations of patients who have the same diagnosis.

[ACT]IVATION TIP:

“My activation tip for this question is, my team’s research on how patients make decisions and the barriers has really led to a lot of insights that now allows us to implement programs to help tackle these barriers. And so I would advocate for any cancer patient to be willing to volunteer for a research study if one presents itself as an opportunity. It’s only through patients sharing their time and knowledge with researchers can we really learn about these critical issues, and then the participation will help future patients.”

See More from [ACT]IVATED Prostate Cancer

Related Resources:

Are There Worldwide Links to Aggressive Prostate Cancer?

Are There Worldwide Links to Aggressive Prostate Cancer?

Do Prostate Cancer Genetics Differ in African Americans?

Do Prostate Cancer Genetics Differ in African Americans?

How Can Advanced Prostate Cancer Care Barriers Be Overcome?

How Can Advanced Prostate Cancer Care Barriers Be Overcome?

Transcript:

Lisa Hatfield:

Dr. Chen, are there any ongoing or upcoming projects in your research group that aim to bridge the gap in prostate cancer outcomes between different demographic groups?

Dr. Ronald Chen:

Yes. One of my areas of research focus is prostate cancer disparities and the different outcomes, different groups of patients have with the same diagnosis. We know from a lot of research from my group and other groups, is that in prostate cancer, there are large disparities.

One example is that Black patients with prostate cancer have twice the mortality rate as white patients with prostate cancer. That’s been known for quite some time. But what causes some patients to die twice as much as others is not as much known. And I’ve done a lot of research to look at this area. Part of this mortality disparity relates to the understanding that some patients for some reason choose less aggressive treatment than others. So if you have an aggressive prostate cancer, but you’re choosing less aggressive treatment than others, then that may explain some of the higher rates of death.

And so what my group has done is to try to figure out why some patients choose less aggressive treatment and what that decision-making process looks like. I’ve had a large project where I have been following about 1,500 men with prostate cancer, it was a…what’s called an observational study where we enroll these 1,500 patients at the time of diagnosis. So as soon as they were diagnosed, we enrolled them and what we asked them is, “Hey, do you mind if we just follow you along with your course through treatment, through your survivorship course? We want to follow and just learn what you decide to do and why you decided to do it, and what your outcomes are.”

And for these 1,500 men, we have now followed them for about 10 years, really going through the journey with them and trying to learn as much as we can. And part of this study was when these men were making decisions about treatment, we were able to ask them a series of questions to really try to tease out, “Why did you choose this versus that? How did you make your treatment process?” And this was a very unique study because actually, there are very few studies that have went through the process of decision-making with men and trying to tease out what’s important to them.

What we learned from this research, from this study, from these men who volunteered their time with us, is that some patients who had pretty aggressive prostate cancer told us that their cancer was not aggressive. So we know by following these patients, we know from their medical records what their diagnosis was, and we knew how aggressive the cancer was. But when we asked these men to tell us what their perception was with their diagnosis, a portion of these men who had aggressive cancer told us that their cancer wasn’t that aggressive.

And we found that people who thought that their cancer was not aggressive, those were the patients who ultimately chose less aggressive treatment, because they didn’t think it was that important, it wasn’t that aggressive. And so, part of what we learned from this study was that a patient’s understanding of their diagnosis is a really critical factor in making the right decision.

Another piece that we learned from going through this process with these patients was that there was also a portion of the men who have financial concerns when they’re making the decision about treatment. Financial concerns relate to, “Well, I’m concerned that this treatment will impact my ability to work, I’m concerned about the cost of this treatment, I’m concerned about how this treatment will impact my family’s burden having to take care of me.” Those are all financial considerations.

And patients who had these concerns were also more likely to choose treatment that’s not as aggressive. And so we found out through this process, through these men sharing their decisions with us, that an accurate understanding of the diagnosis and some of these financial concerns really drove decisions of treatment for prostate cancer patients.

So now that we understand that, the question is, what is the next step? What can we do to help alleviate this problem? Because I think we can’t take away these concerns, and if patients have the right treatment, that will improve and optimize their outcome as well, and reduce disparities. 

And so part of what we’re doing here at University of Kansas is that we have really increased the availability of financial navigators and social workers for cancer patients. We know that a portion of cancer patients have financial concerns. We know that we don’t do as good of a job identifying patients who have concerns and then finding resources to help them.

Maybe it’s transportation, maybe it’s cost of treatment, maybe it’s the drug cost, and being able to identify these concerns early and finding resources to help would also, if we remove this barrier, then patients will be able to choose treatment that’s right for them without those concerns. And so, that’s one thing that we’re doing, now that we understand that’s an issue, we’re doing that to see if we can tackle and reduce this problem.

So my activation tip for this question is, my team’s research on how patients make decisions and the barriers has really led to a lot of insights that now allows us to implement programs to help tackle these barriers. And so I would advocate for any cancer patient to be willing to volunteer for a research study if one presents itself as an opportunity. It’s only through patients sharing their time and knowledge with researchers can we really learn about these critical issues, and then the participation will help future patients. And so, I would advocate for anybody to volunteer for research study, if that’s something they’re willing to do.

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Advanced Prostate Cancer Outcomes: Addressing Disparities and Exploring Solutions

Advanced Prostate Cancer Outcomes: Addressing Disparities and Exploring Solutions from Patient Empowerment Network on Vimeo.

Does research in advanced prostate cancer address the disparities in outcomes among different racial and ethnic groups? Dr. Ronald Chen from University of Kansas Medical Center speaks to contributing factors, how far we have come and ongoing efforts.  

See More from [ACT]IVATED Prostate Cancer

Related Resources:

How Can Prostate Cancer Disparity Gaps Be Overcome?

How Can Prostate Cancer Disparity Gaps Be Overcome?

Do Prostate Cancer Genetics Differ in African Americans?

Do Prostate Cancer Genetics Differ in African Americans?

How Can Advanced Prostate Cancer Care Barriers Be Overcome?

How Can Advanced Prostate Cancer Care Barriers Be Overcome?

Transcript:

Lisa Hatfield:

How does your research address the disparities in prostate cancer outcomes among different racial and ethnic groups? And also, what are some of the key factors contributing to these disparities?

Dr. Ronald Chen:

I think there’s been a lot of research by my group and others looking at disparities in prostate cancer. And prostate cancer really is a shiny example of disparities. And what I think a lot of researchers has found is that, in prostate cancer there are clear disparities by a patient’s race. And what we know is that Black patients with prostate cancer have pursued less aggressive treatment, have more delays in treatment, and are twice as likely to die from prostate cancer compared to white patients, and that’s really a large gap that we need to do more research on to close.

With every cancer, and prostate cancer is no exception, screening is so important. If we’re able to screen and diagnose a cancer as early as possible, that gives us the best chance to cure cancer and for the best outcome for the patient. So access to screening is very, very important. I cannot stress that enough.

Access to clinical trials is also important. Clinical trials are the way for patients to access the latest, most promising treatment available. And we actually know from a lot of research that patients who are on clinical trials do better, live longer than patients who are not on clinical trials, and I think a lot of it’s because of the access to the latest agents. And so, being able to try to tackle this issue of access to screening for early detection and access to clinical trials, I think will be really important for us to tackle and reduce and minimize and eliminate the disparities that we see in prostate cancer.

I think the other really important aspect of disparities is actually also, I think, patient knowledge. Not every patient who has cancer who goes to see a specialist and they’re told the information, I don’t think that as physicians we do a good enough job of explaining a patient’s diagnosis and options to patients. And what we know from research is that a lot of patients leave the consultation not completely understanding what they were just talking about. They may not know how aggressive the cancer is, they may not know exactly what options are available, and I think that’s the communication aspect, whether it’s from the physician side or from the patient’s receiving side, we know that that’s not as good as possible.

And we also know that when a patient does not fully understand their diagnosis, that might lead to wrong decisions about delaying treatment and about wrong decisions in terms of choosing treatments that’s less aggressive than it should be. And so I think being able to work on better communication, better understanding of the critical information that’s transferred during consultation, I think, will be another way to address disparities that we see in prostate cancer.

Lisa Hatfield:

Great. Thank you. And backing up just a little bit, when you were talking about one of the factors being geographical rural area, if you had a patient come in and say, “Hey, I just read about this trial, but I live really far away from an academic center, a center that is running this trial,” do most clinical trials require a patient to live close to that center if they want to access a trial, or can they just check in occasionally? How do those typically work?

Dr. Ronald Chen:

I think that patients who live far away from a major cancer center can still find ways to participate in clinical trials because not all clinical trials require a patient to live close by. I’ll give an example.

I work at the University of Kansas Cancer Center, and we offer a lot of clinical trials. We understand that Kansas is a rural state, and we have a lot of places in Kansas where patients don’t live close to where we are in Kansas City. So what we have done at the University of Kansas Cancer Center, is actually, we have partnered with a lot of the smaller cancer programs around the state, so then we can all offer the same clinical trials. Even though, even trials that we offer at University of Kansas in Kansas City, through our partnership with smaller cancer centers around the state, patients can actually enroll in clinical trials and be treated closer to home on the same trial.

So I think that really increases access. But that’s only possible if a patient has heard about that opportunity and are able to then seek that out. But the network has been set up in our state, and some other cancer centers around the country have similar networks to try to increase that access.

I think the other thing to say is that there are many clinical trials for advanced prostate cancer using chemotherapy and more increasingly, oral pills to treat cancer. And you can absolutely have the opportunity of signing up for a trial, and if that includes a new treatment that’s an oral pill, maybe you only have to go for a visit every few months for a check-up, but you can take that prescription and the pill at home without having to have frequent visits. And I think that also makes a clinical trial participation feasible for a lot of patients.

So I really do think that, I think we’ve made a lot of improvements in clinical trial access over the past few years. I actually think the COVID pandemic has forced us to think about how to do this, and I think we’re doing a better job than we were five years ago. And so, I think even for patients who live in rural areas, clinical trial participation is possible in a lot of situations. 

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How does one access myeloma CAR T-cell therapy? This animated explainer video provides an overview of the steps involved in determining whether a patient qualifies to receive CAR T-cell therapy, what the process entails, common side effects, and why having a care partner is essential.

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Understanding Possible Side Effects of CAR T-Cell Therapy

Understanding Possible Side Effects of CAR T-Cell Therapy 

What You Need to Know About Accessing CAR T-Cell Therapy

What You Need to Know About Accessing CAR T-Cell Therapy 

Transcript:

The emergence of CAR T-cell therapy is revolutionizing treatment for some people with myeloma. But, who is it right for, and what is the process for people that qualify?  

  • The first step in accessing this treatment is to be referred by your physician to a center that specializes in CAR T-cell therapy. 
  • Then, a consultation will take place with the transplant team, and a health assessment is administered to ensure patients are healthy enough for CAR T-cell therapy. This includes testing to review the current status of your cancer and testing of your body’s major organ systems.
  • Next, the specialty center will evaluate the best type of CAR T-cell therapy for the patient, including clinical trial options.
  • After approval, financial coordinators will discuss insurance and therapy costs with the potential recipient. Logistics are also arranged at this time, which may include help with transportation and housing, if necessary.
  • Medical centers also require that patients have a care partner, such as a family member or friend, who can be with them at all times, particularly after leaving the hospital. 

So, what is the process once a patient is approved for CAR T-cell therapy? Once a patient is approved to move forward with the procedure, a date is set for collection of the patient’s T cells. T-cells are collected during a process called apheresis. During apheresis a specialized machine filters the patient’s blood to remove the T-cells for collection and the rest of the blood is returned to the patient.  

 After collection, the T cells are sent for manufacturing. During that time, the patient is given a “bridging therapy” to maintain the myeloma until the CAR T cells are infused.  

Once the CAR T cells are infused, the patient will be closely monitored by the CAR T center. This may or may not include hospitalization depending on the policies of the treatment center. Patients and their care partner should plan to stay close by the center for up to 30 days after the infusion.  

During this time, the patient is evaluated for their response to treatment and monitored for possible side effects so that they can be managed in a timely manner.  

The potential side effects of CAR T-cell therapy may include: 

  • Cytokine release syndrome, or CRS, which is an aggressive response to treatment by the immune system and may cause symptoms such as low blood pressure, high heart rate decreased oxygen saturation, fever, nausea, and body aches. 
  • Another possible side effect is neurotoxicity, which is an adverse event that may cause issues such as confusion, difficulty with communication, seizure, or tremors. 
  • And, another side effect may be low blood counts, which could impact the immune system and increase risk for infection. 

Every patient is different, so close monitoring is essential.  

So now that you know more about CAR T-cell therapy, you can work with your healthcare team to decide if this treatment option may be right for you. Be sure to speak up and ask questions. Remember, you have a voice in YOUR myeloma care. 

To learn more about myeloma and to access tools for self-advocacy, visit powerfulpatients.org/myeloma.  

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PODCAST: Gastric Cancer: How to Access the Best Care and Treatment for YOU

Advances in gastric cancer research have led to more personalized therapy for patients. Dr. Yelena Janjigian discusses how biomarker testing can help guide a patient’s prognosis and treatment path, reviews currently available gastric cancer therapies, and shares tips for self-advocacy.

Dr. Yelena Janjigian is Chief of Gastrointestinal Oncology Service at Memorial Sloan Kettering Cancer Center. 

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Transcript:

Katherine:

Hello and welcome. I’m your host, Katherine Banwell. Today’s program focuses on helping patients understand gastric cancer treatment options based on their individual disease. We’ll review the latest research and provide tips for self-advocacy to help patients access better care.  

Before we meet our guest, let’s review a few important details. The reminder email that you received about this webinar contains a link to a program resource guide. If you haven’t already, click that link to access information to follow along during the webinar. At the end of this program, you’ll receive a link to a program survey. Please take a moment to provide feedback about your experience today in order to help us plan future webinars.  

And finally, before we get into the discussion, please remember that this program is not a substitute for seeking medical advice. Please refer to your healthcare team about what might be best for you. Well, let’s meet our guest today. Joining me is Dr. Yelena Janjigian. Dr. Janjigian, welcome. Would you please introduce yourself? 

Dr. Janjigian:

Thank you so much, Katherine, for this opportunity. My name is Yelena Janjigian. I’m a medical oncologist. And I oversee the GI oncology service at Memorial Sloan Kettering Cancer Center in New York. We’re a large group of doctors, over 40 physicians who treat everything from esophagus cancer to rectal cancer. And my research focus and my passion has been in developing new treatments for patients with stomach cancer, so I personally focus on this disease clinically and from research perspective.  

Katherine:

Okay. Lovely.  

Well, thank you so much for joining us today. I’d like to start by learning about the latest research news. Are there recent advances in gastric cancer that patients should know about? 

Dr. Janjigian:

That’s a great question. The field of gastric cancer research has accelerated and evolved immensely over the last three years. We’ve had several important approvals for treatment of metastatic disease both for biomarkers selected population and immunotherapy targeted therapies. So, there’s been a lot of research, a lot of effort and some positive data that the patients and clinicians should be aware of.  

Katherine:

And what excites you about the research you’re involved with? 

Dr. Janjigian:

I’ve been focused on gastric cancer for nearly two decades. So, my recent advances have really helped to understand how we can improve patient’s survival better, potentially cure more patients, and understand the different subsets of cancer treatments and patients with gastric cancer understanding that not all gastric cancer is the same.  

So, I think being able to zoom in on different subsets and target personalized approaches for each individual patient is why I stay in research, why I stay in gastric cancer research because we’ve been able to make some major breakthroughs.  

Katherine:

That’s excellent news. How can patients stay up to date with treatment options? 

Dr. Janjigian:

That’s a great question. And recently there’s been a lot of resources online through both the big pharma really educating patients with patient-friendly handouts. And many of my big recent papers when we publish them in big journals like Lancet or Lancet Oncology, for example, or JCO, there’s always a patient-friendly handout that comes with that data that helps patients understand some of the endpoints, how do we describe why this study is positive? 

Or why is the FDA decided to approve the drug? So, there are many patient handouts that come with some of these papers. And it’s interesting, a lot of my patients come in. When they see me, they say, “Oh, it’s so good to finally meet you. I’ve watched a lot of your videos.” So, because of COVID actually, a lot of the scientific content that used to be just in in-person meetings behind doors for doctors, now it’s all online because a lot of these scientific presentations are now made for virtual content as well. So, patients have access to it. That’s double-edged sometimes. It’s a little bit of an information overload, and it may actually make patients feel more anxious than reassure them, right? Because it’s a lot of jargon and not too – but some patients find it helpful.  

Katherine:

Yeah, I can see that. It can be a double-edged sword.   

Dr. Janjigian:

Yeah.   

Katherine:

Well, thank you for that advice. So, now that we’ve heard what’s happening in research, let’s review some more basic information about gastric cancer. First, gastric cancer is sometimes referred to as stomach cancer. Is that the same thing, or are both terms correct?  

Dr. Janjigian:

Yeah. So, stomach is really where the cancer starts. But we can talk about stomach or abdomen. But gastric and stomach are the same tumor location basically. What’s interesting actually, some patients also have tumors that start at the bottom of their esophagus and extend into the stomach. So, biologically a lot of these cancers behave similarly. In fact, in United States the most common location for these cancers actually is in between the gastric esophageal junction and the stomach.  

So, it’s in the location in of the cancer that’s at the very top of the stomach. But in short, stomach cancer and gastric cancer are interchangeable. And as I mentioned, for many of our viewers, actually gastro-esophageal junction is also part of the same disease.  

Katherine:

Could you tell us what tests are used to diagnose gastric cancer? 

Dr. Janjigian:

Most of our patients, when they come in to see me, by then the diagnosis of cancer has been made because I’m on oncologist.  

In clinical practice, patients often present with vague symptoms or no symptoms at all. And that’s an important point for our clinicians to understand. In patients who have chronic acid reflux or have, for example, other risk factors such as H. pylori infection, often they end up getting endoscopy at the time, for example, for their first colonoscopy. So, the age of colonoscopy, the first colonoscopy has is getting earlier and earlier with each update, because colon cancer is increasing in incidents in younger adults. So, sometimes patients present and get first endoscopy, for example, which is an upper test with a camera when they’re getting their colonoscopies. In other patients, unfortunately, they present with more progressive symptoms. Often, it’s difficulty swallowing, regurgitation of food, and weight loss, which is obviously very dramatic.  

And so they end up getting an endoscopy because of that and referred by their doctors.   

Katherine:

How is gastric cancer staged? And what do the stages mean? 

Dr. Janjigian:

Yeah. So, the most important part of the staging of gastric cancer and what patients ask me, “What is my risk of cancerous recurrence? What is my stage?” Really what it comes down to is the depth of invasion. So, it’s not only the size of the tumor, but how deep is it going into the muscle of the stomach, because stomach and your esophagus are basically a muscular bag, right? And so how deep is the invasion of the tumor into the wall? And also how likely are the lymph nodes to being involved? So, we assess it based on clinical symptoms such as swallowing difficulty and so forth. But in some patients, because the tumor is lower down in their stomach, they may not have very many symptoms, because there’s a lot more give in this muscular bag that our stomach is.  

And so we test the endoscopic ultrasound to look at the depth of an invasion and also other X-ray type imaging such as a PET scan, a P-E-T scan or a CAT scan, which gives us a sense of tumor location whether or not we think the lymph nodes may be involved. And ultimately the final way to assess, especially in patients who are undergoing surgery, is their microscopic involvement of the lymph nodes? Because that often drives the likelihood of cancer coming back after surgery.  

Katherine:

And how do the stages work for gastric cancer? 

Dr. Janjigian:

So, in gastric cancer it’s either early, intermediate, or late stage. And this goes from stage I to IV. So, stage IV  tumors is where most of the cancers are present. Over probably 50 percent of our patients present already at the time of diagnosis with more advanced stages. 

Biologically this cancer just tends to move quickly. So, even in between endoscopies in patients who get endoscopies frequently, often it goes from 0 to stage III or IV because of the lymph node involvement and also spread of microscopic cells, right? Tiny, tiny cells before we even see them, they spread through the bloodstream to other organs or lymph nodes outside of your abdomen. So, that’s considered to be stage IV. And then early, early stage disease is stage I. Those usually that we can just scoop them out using endoscopic procedures. They don’t even need to have full surgery. And then stage II and III is usually if there’s some involvement of the tumor through the muscle or into the muscle of the stomach and also some lymph node involvement. But that’s how we stage it.  

Katherine:

Okay. I’d like to move onto current gastric cancer treatment options. Can you provide an overview of what’s available now?  

Dr. Janjigian:

Right. So, in patients with intermediate or early-stage tumors, really surgery is the main way to cure patients. Occasionally when we have an amazing response to chemotherapy or chemotherapy with immunotherapy or just immunotherapy, we can avoid surgery. But in most patients, surgery in early-stage disease is a gold standard for cure. Of course, it can be a very jarring thing to say to someone. “We have to take out. your stomach.” But patients do live without either fully their stomach removed or partially removed. And that’s the gold standard. We do additionally other treatments to help maximize chances of cure, but surgery is the main state. As I mentioned earlier, most of our patients, however, present with later stages where surgery is not feasible.  

And when I say it’s not feasible, we would only attempt an operation if we thought there was a possibility of removing the cancer completely. Leaving some of the tumor behind, even if it’s only 1 percent of the cancer behind, makes patients unwell. They may not be able to tolerate additional chemo, so we do not recommend doing suboptimal surgery unless cancer can be completely removed. So, in those patients, we always explain the situation. And the disease is not potentially as curable, but it’s absolutely always treatable. And since the development of our immunotherapy options, really, we’ve changed the trajectory and the course of those cancers. We won’t know the stage or the final response to therapy until we’ve start it. But in those patients, usually a form of long-term therapy. Chronic treatment is very important.  

And usually it involves a combination of chemotherapy and some targeted agents, biologic agents, meaning that they were designed in the lab to target the cancer specifically. And usually, they involve some sort of immunotherapy.  

Katherine:

Excuse me. Can you go into some detail about the targeted therapies and immunotherapies that you use?  

Dr. Janjigian:

Sure. So, conventional chemotherapy works on any rapidly dividing cell. And these are chemotherapies that have been tried and true in the clinic for decades, right? And they work still in gastric. And in  particular they’re very important. And then over the last 10 years or so, we’ve started developing target agents in the lab that target the specific biologic tumor biomarkers. And when you think about tumor biomarkers, I would think about them as almost ZIP codes, right? How do you direct the cancer cell to die? 

And how do you inhibit the cancer cell for the thing that is uniquely what’s making it grow as opposed to normal cells, right? So, that’s the difference between chemotherapy because chemotherapy can affect any rapidly dividing normal cell and cancer cell, while biologic agents ideally only affect the target, cancer, the cell. So, that’s why it’s very appealing to do both to help maximize response and survival on treatment. So, the biologic therapies that are available in and already approved in our disease for stomach cancer are something called HER2 directed treatments. And that’s been my focus in the lab. And then in my group has really spearheaded a lot of this research for HER2-positive tumors. In gastric cancer it occurs in up to 20 to 30 percent of tumors, but we have drugs such as trastuzumab or Herceptin, T-DXd, trastuzumab deruxtecan-nxki (Enhertu) or in HER2 that target these agents.  

And furthermore, our work here at Memorial Sloan Kettering demonstrated the combination therapies really for HER2-positive disease has helped improve outcomes in those patients. So, that’s biologic therapy. Other biologic therapies that’s approved in gastric cancer is something called VEGFR-2 inhibitor. These are drugs that target blood vessel formation around the tumor to help the chemotherapy drugs work well and better. Those drugs are called ramucirumab or Cyramza. And that’s used in a combination of chemotherapy in second-line treatment. And there’s other drugs such as regorafenib (Stivarga) and other inhibitors that maybe have some targetable activity in our disease. And last but not the least is immunotherapy. So, immunotherapy’s a completely different class of drugs.  

We think about immunotherapies, really the fundamental problem with cancer, right? The cancer issues that it started as a normal cell. So, at some point, it was a normal cell that then became and went awry and went rogue. And the body did not recognize that there was a problem. And the immune system did not eliminate that cancer cell. Before it started to metastasize and give us problems in their body, right? So, the fundamental question is why is the body’s immune system, why did it not recognize it as a abnormal cell? Well, because it really acts and looks like a normal cell from the immune perspective. Our immune system is trained not to hurt us, right? And that’s why in patients with rheumatoid arthritis or other autoimmune disorders, what happens is the immune system goes awry. So, what the immune checkpoint blockade or immunotherapy for cancer does, is it helps take some of those brakes off our immune system and help our immune system recognize the cancer and give it permission to say, “Hey, you know what?  

You thought it was a normal cell. It’s not. It’s a cancer cell. Please help us eliminate it.” And that’s worked well because I think in for some of our patients, the immune system actually knows how to target and suppress the cancer much better than any of the fancy drugs we can design in the lab. And that’s why in some patients, immune checkpoint blockade immunotherapy has been such a game changer if you do respond, your duration and durability of response is so much more better than anything that would go to just done on our own in the lab or with other chemotherapies. So, it really is a nice way to think about it. And the patients feel like they’re part of the solutions. It’s always nice for them to have that.  

But it’s been a real game changer for both HER2-positive and HER2-negative disease in combination with chemotherapy. I’ve had the pleasure of leading some of these studies. And it’s nice to be able to update the three or the four or the five-year survival rate from these studies in a disease where in the past most patients died within a year.   

Katherine:

Dr. Janjigian, I’d like to talk about what goes into deciding on a best treatment for a patient. Is there testing that helps you understand a patient’s individual disease? 

Dr. Janjigian:

One is an important factor about this disease, and when the patient comes in, the number one factor that helps us decide, what treatment to assign, is how well is the patient feeling? What are their nutritional deficits? How functional they are. Are they able to tolerate the treatment?

Because as an oncologist, the first rule is do no harm. Most patients come in when they’re first diagnosed are pretty well functional. They’re still able to eat. And so, they’re really up for the most aggressive. And that’s probably the number one wish I have from patients. I just want us to stay well and stay alive. So, we can be very aggressive with them, at least folks that come to see us in New York. And so, then the decision fork is really do you want only standard therapy, or are you interested in clinical trials? And I think what I am able to really explain to the patients, which is great, is that the benefit of trials – and, of course, you can never guarantee that a trial will be successful, right? Because that’s by definition – a clinical trial is experimental therapy. But for gastric cancer and stomach cancer where we need as many treatment options as possible, a clinical trial gives you an opportunity to try something different, and then go back to standard therapy, and then try experimental therapy, and then go back to standard therapy.  

So, it gives you as many options as possible. The way that I help our patients visualize this is you’re trying to cross a very wide and somewhat turbulent river. And you need as many stepping stones as possible. And a clinical trial, if it makes sense for you and if you’re able to do it physically, it gives you that other option. The most important other factor is to understand which subset of stomach cancer you have, right? Because biomarker testing has helped us tremendously to advance this disease. If you look at and if you watch any of my talks, I usually have this timeline of therapeutic development in stomach cancer until really this past year.  

We’re 2022, 2021. There was over a decade of negative trials, right? And the reason why I think is because the design of the trial really focused on targeting all the patients the same way. And now the trials are becoming more and more sophisticated. So, when we talk about the biomarker testing of the tumor, the patient’s specific tumor.  

It’s important for the patient to ask their physician. “What is the status of my tumor?” And the four critical biomarkers are microsatellite instability, HER2, PD-L1, and Claudin-18.2. So, those four biomarkers have really helped us transform this field especially in patients with metastatic disease. And in all of the tertiary cancer centers, certainly here at Memorial Sloan Kettering,  for each of the subsets we have a full research portfolio.  

So the patients have both standard and experimental options available to them.             

Katherine:

Well, how can test results like biomarker testing affect the patient’s prognosis and treatment options? 

Dr. Janjigian:

It will depend on the treatment and how it is paired to the biomarkers. So, for example, a certain subset of tumors such as microsatellite and stable tumors are patients with PD-L1 high tumors or even patients with HER2-positive tumors. Now in clinical trials, we see that those patients have an outstanding dramatic response to combination therapies often with chemotherapy or immunotherapy together or even HER2 directed therapy with immunity therapy. So, it really will impact how likely your tumor is to shrink. And if the tumor is shrinking, and if you’re feeling better, obviously that translates to better survival.  

Katherine:

Yeah. What questions should patients be asking about their test results? 

Dr. Janjigian:

I think it’s important for patients to be very clear with their providers about their willingness to undergo repeated biopsies if needed.  

I think the number one misunderstanding or misnomer that I see when patients come in to see me as a highly trained specialists, and they’re seeking me out for expertise and second and third and fourth opinions is that when the biomarker test is not done, often the answer in the community from the physician was, “Well, there was insufficient tissue or the tissue quality was not great, and that’s we’re going to do it. And it turns out the patient is perfectly willing and able to undergo a second biopsy. They really do not mind because a lot of times it’s just as simple as having a repeat endoscopy. Or even on treatment off and the problem is it’s a constantly evolving cancer. So, for example, if you receive first-line treatment and then you progressed and you need additional treatment, often it’s important to get a second biopsy to understand what your biomarkers are at that point. 

And I described this to my patients. We can’t get into a battle with outdated maps. We need to know. And sometimes when there’s a misunderstanding, the doctors think, “Maybe the patient wouldn’t be willing to do it. Or they are risk-averse.” And the patient’s more than willing to do it. So, I think communicating your wishes and your intent clearly with your doctors and not being shy to ask questions, and also not being shy to seek out clinical trials, right? So, yesterday I was in clinic. I see a lot of this disease. I often see 30 patients at clinic. I had an 80-year-old patient in my clinic, right? And before you meet the patient, most doctors would think, “Well, it’s an elderly patient. They wouldn’t even be interested in clinical trials. What are we trying to accomplish here?” 

Katherine:

Right.  

Dr. Janjigian:

But this patient clearly is – he exercises five days a week. He’s extremely active. He wants the best options for him.  

So, I am not an ageist, so I asked him. I said, “What are your sort of goals of this therapy? And how interested are you in clinical trials?” And him and the family were extremely enthusiastic. And, “We’re going to go for it, and we’re going to try.” So, I think having those conversations with your doctors – because you remember gastric cancer is very rare. In my clinic I see 30 patients, but in most normal sort of oncology practices, it’s lung, breast, and colon, the big three that sort of saturate the schedule of the oncologists. So, if they see one or two gastric cancers a month, they may not be thinking along the same lines of your disease. So, then you have to ask the questions of, “Are there any clinical trials? Should I see a specialist?” Did you do all of my biomarkers? 

Katherine:

Yeah, yeah. That’s really great information to have.  

Are there other decision factors involved in deciding on treatment options? You mentioned age, comorbidities. What else do you look at? 

Dr. Janjigian:

Yeah, the other important factor as I said is nutrition. Being able to stay fit and stay independent is very important. Some of my patients ask me, and then they feel like what they eat is so important that as soon as they get their diagnosis, they restrict their diet. And then they start losing weight. And that’s not good. The number one negative prognostic factor is if you lose more than 10 percent of your body weight within the first few months of the diagnosis – because you get really weak, and then you can’t tolerate the chemotherapy. So, I tell the patients, “Your body will take from you whatever it wants. The cancer will take from you, from your body. So, you need to support yourself nutritionally.” So, if you don’t feel like eating a salad, but you are craving a cookie, it’s okay.  

Have that cookie; just don’t lose weight. And I think that’s the number one. And also, the other factor is how do you communicate your diagnosis and your prognosis to your family and your friends? Because then everybody’s asking and making you in some ways anxious, your job. And what I tell patients is, “It’s on need-to-know basis.” If you find love and support, then you can tell people. Otherwise, you can just loosely kind of mention that you need some help, and you’re going through treatment without specific details. And the great part about these combination immunotherapies is that a lot of our functional patients actually continue to work through this. And so, we fill out whatever forms they need for their jobs and so forth. But we have lawyers that are continuing to work, teachers, and sometimes even construction workers. So, really, I would say make decisions as they come up.  

Don’t run too far ahead and sort of assume that you’re going to not be well. But if you want to take some time off, that’s okay too. And so, I think the treatment paradigm for this disease has evolved so much that there’s a lot of misconceptions. And I think the job of a good oncologist is to let the patient live their life in as normal a fashion as possible. So, we work the chemo schedules around their schedule. Some of these immunotherapies you can give once a month. So, I have patients who will fly into see me, for example, get the dose, and then go back home. So, I think don’t be afraid to ask for what you need.  

Katherine:

Yeah. Well, that leads us very smoothly into self-advocacy. And it’s really important that patients advocate for themselves. So, if a patient has a question or they’re unsure about a decision, why is it so important for them to speak up?  

Dr. Janjigian:

What I always tell my patients and I explain to them, that often the doctors know a lot of information. But there’s so much information that it’s almost impossible to – and we only have 15 to 20 minutes together. So, it’s almost impossible to communicate everything that we know to you. So, you need to drive a bit of what the focus is of priorities in each visit and get as much information as you can. But also in some ways, follow the doctor’s lead. So, it’s a balance of information exchange. Use the portal as much as possible as well. The patient portal is often for follow-up questions. Write questions down. We have our nurse practitioners, our nurses, our fellows that continue to educate the patients because as things come up, and the field is so complicated that there  are just so many things that you can ask at one single appointment.  

So, it’s okay to forget something, but just write it down. In the end like anything else, you only have one sort of chance to do this in a way that you want it to be done. And as treatment progresses and you’re not feeling well, and maybe you don’t want to keep coming in for appointments and would rather go spend time in Aruba or Florida or somewhere sunny as opposed to – that’s okay. I think a lot of times it’s your life. You only have one. And I strongly believe in anything to try to get as much out of every interaction as possible using all the resources that are available to you.  

Katherine:

Well, I’d like to close today with getting your thoughts on how you feel about the state of gastric cancer care. Are you hopeful about treatment options? 

Dr. Janjigian:

I’m extremely hopeful. And usually, I finish all of my scientific talks. I’m a physician scientist.  

I travel a lot to meetings. And my goal now in my career is to attract more and more young talent and scientists that will help us make the next wave of breakthroughs for this difficult disease. I think we’ve made a lot of progress, but the reality is: We’re still not curing enough patients. And so, our next wave is not just to stabilize and help people live longer but cure them definitively and permanently. And so, I finish every single presentation I have by how much the possibility and how fruitful this field has been. Personally, for my work and career of those that I’ve mentored throughout the years all over the world. So, I’m very hopeful for the next five, 10 years in this field. It will continue to get better.   

Katherine:

It sounds very promising. Dr. Janjigian, thank you so much for joining us today.  

Dr. Janjigian:

Thank you. Great question.  

Katherine:

And thank you to all of our partners.   

If you’d like to watch this webinar again, there will be a replay available soon. You’ll receive an email when it’s ready. And don’t forget to take the survey immediately following this webinar. It will help us as we plan future programs. To learn more about gastric cancer and to access tools to help you become a proactive patient, visit powerfulpatients.org. I’m Kathrine Banwell. It’s good to have you with us today.  

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How Can Gastric Cancer Patients Insist on Better Care?

How Can Gastric Cancer Patients Insist on Better Care? from Patient Empowerment Network on Vimeo.

Self-advocacy is an essential part of accessing the best gastric cancer care, so how can patients insist on better care? Dr. Yelena Janjigian shares advice to help optimize healthcare visits.

Dr. Yelena Janjigian is Chief of Gastrointestinal Oncology Service at Memorial Sloan Kettering Cancer Center. 

See More From INSIST! Gastric Cancer

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Transcript:

Katherine Banwell:

Yeah. Well, that leads us very smoothly into self-advocacy. And it’s really important that patients advocate for themselves. So, if a patient has a question or they’re unsure about a decision, why is it so important for them to speak up?  

Dr. Janjigian:

What I always tell my patients and I explain to them, that often the doctors know a lot of information. But there’s so much information that it’s almost impossible to – and we only have 15 to 20 minutes together. So, it’s almost impossible to communicate everything that we know to you. So, you need to drive a bit of what the focus is of priorities in each visit and get as much information as you can. But also in some ways, follow the doctor’s lead.

So, it’s a balance of information exchange. Use the portal as much as possible as well. The patient portal is often for follow-up questions. Write questions down. We have our nurse practitioners, our nurses, our fellows that continue to educate the patients because as things come up, and the field is so complicated that there  are just so many things that you can ask at one single appointment.  

So, it’s okay to forget something, but just write it down. In the end like anything else, you only have one sort of chance to do this in a way that you want it to be done. And as treatment progresses and you’re not feeling well, and maybe you don’t want to keep coming in for appointments and would rather go spend time in Aruba or Florida or somewhere sunny as opposed to – that’s okay. I think a lot of times it’s your life. You only have one. And I strongly believe in anything to try to get as much out of every interaction as possible using all the resources that are available to you.