Tag Archive for: kidney cancer

Empowering Patients Facing a Renal Cell Carcinoma Diagnosis

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Renal cell carcinoma (RCC), commonly referred to as kidney cancer, may present as can be daunting and multifaceted. What proactive measures can patients and their caregivers implement to optimize their care experience?  With this idea in mind, the Patient Empowerment Network initiated the START HERE Renal Cell Carcinoma program, which aims to close the gap in the expert and patient voice to build empowerment.

Lisa Hatfield and Dr. Moshe Ornstein

Patient-Expert Q&A Webinar Topics and Key Takeaways

 In the Patient-Expert Q&A webinar, kidney cancer expert Dr. Moshe Ornstein shared his expertise to help patients and care partners boost their knowledge and confidence. Cancer patient and Empowerment Lead Lisa Hatfield moderated the discussions and shared some of her perspectives as a patient. Some of the discussion covered:

Kidney cancer diagnosis breaks down into two main categories. Dr. Ornstein detailed the two types. “There is the patient that presents with a localized kidney cancer. So they came to the emergency room because they were having belly pain, and they were found to have a big mass growing in their kidney that is proven to be kidney cancer. And then there’s the patient who has advanced disease, metastatic disease that has spread beyond the kidney. Either they came in with metastatic disease, in other words, their kidneys in place, and they have cancer beyond the kidney. Or they already had a surgery a year or two ago, and now they come back, and the cancer has returned elsewhere in the body.”

Preparing patients for their cancer journey is top of mind for Dr. Ornstein, and he discussed how he approaches this preparation for the main types of patients. “We talk about what kind of surveillance, what kind of watching or monitoring of the cancer are we going to do, how often they’re going to get CAT scans. So really try to give them the big picture about what cancer they have, what the outlook is, and what we’re going to do to keep a close eye on them. For the patient who has an advanced cancer, in some ways it’s similar. When I say advanced, I mean a cancer that has spread beyond the kidney that’s going to require therapy, immunotherapy, targeted therapy, a clinical trial, whatever it might be.”

Some kidney cancer patients may wonder or even feel remorse over what caused them to get cancer. Dr. Ornstein explained that even though the cause isn’t always known, there are some known risk factors like asbestos, some types of gasoline exposure, and secondhand smoke. Dr. Ornstein also shared, “We do have known risk factors for kidney cancer, whether it’s obesity, smoking, high blood pressure, chronic kidney disease. So there are certain risk factors and associations, but it’s really difficult for a specific patient to be able to pinpoint this caused the kidney cancer. And I think it’s reassuring for patients to know that as a general rule, it’s not something that a patient did that caused the kidney cancer, and it’s not somebody’s fault that they have the kidney cancer.”

Although some kidney cancer patients will be monitored with imaging scans rather than starting treatment right away, Dr. Ornstein shared that the vast majority will start treatment as soon as possible. “…probably 95 percent of these patients are going to get an immunotherapy-based combination as their first line of treatment. Immunotherapy has different names in the literature. You might see immunotherapy, you might see checkpoint inhibitors. But what these are doing is they’re “releasing the brakes” on the body’s own immune system to attack the cancer. So the immunotherapy is either given in combination with another immunotherapy.”

Lisa Hatfield and Dr. Moshe Ornstein

Kidney cancer clinical trials generally fall into one of two buckets. Dr. Ornstein explained that one bucket is comprised of clinical trials that are investigating novel therapies. He explained further about the second bucket of clinical trials. “…And the other class of clinical trials is really sort of optimizing the drugs we already have. So we know that as a general rule, giving immunotherapy plus targeted therapy is better than giving immunotherapy alone. But what about trials looking at giving two immunotherapies plus a targeted therapy? We know that patients either get immunotherapy and immunotherapy, or an immunotherapy and a targeted therapy. What about if we gave two immunotherapies and a targeted therapy? Can three be better than two? So there are trials both in the front-line setting and in the refractory setting, looking at these novel therapies in the one bucket. And then there are also trials looking at these combinations and different ways of mixing and matching therapies that we already have to optimize patient outcomes.”

It’s an exciting time with new kidney cancer therapies, and these are just some of the main takeaways from the Renal Cell Carcinoma Patient-Expert Q&A webinar. We hope you can use these valuable kidney cancer resources to build your knowledge and confidence toward becoming a more empowered patient or care partner. 

START HERE Renal Cell Carcinoma Program Resources

The program series includes the following resources:

Expert Insights into Kidney Cancer Risk Factors and Genetic Testing

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Expert Insights into Kidney Cancer Risk Factors and Genetic Testing from Patient Empowerment Network on Vimeo.

What is known about kidney cancer risk factors and genetic testing? Expert Dr. Moshe Ornstein from Cleveland Clinic explains known risk factors for kidney cancer and situations when he recommends genetic testing for patients.

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See More from START HERE Renal Cell Carcinoma (RCC)

Related Resources:

How Is Advanced Renal Cell Carcinoma Patient Care Managed?

How Is Advanced Renal Cell Carcinoma Patient Care Managed?

 Exploring Renal Cell Carcinoma Research | Expert Insights on Immunotherapy and Targeted Therapy

Exploring Renal Cell Carcinoma Research | Expert Insights on Immunotherapy and Targeted Therapy

 Renal Cell Carcinoma Clinical Trials | A Deep Dive into the Latest Advancements

Renal Cell Carcinoma Clinical Trials | A Deep Dive into the Latest Advancements

Transcript: 

Lisa Hatfield:

We have a patient asking if you can speak to a typical patient history associated with kidney cancer and is there a common factor, or I think that they’re asking is there a cause that you see frequently for kidney cancer?

Dr. Moshe Ornstein:

Yeah, this is such a common question, Lisa, because patients want to know I have this cancer, what caused it? And generally, we just don’t know the answer to that. And I tell that to patients, it’s generally not something that somebody did that caused this kidney cancer. We do have known risk factors for kidney cancer, whether it’s obesity, smoking, high blood pressure, chronic kidney disease. So there are certain risk factors and associations, but it’s really difficult for a specific patient to be able to pinpoint this caused the kidney cancer. And I think it’s reassuring for patients to know that as a general rule, it’s not something that a patient did that caused the kidney cancer, and it’s not somebody’s fault that they have the kidney cancer.

Lisa Hatfield:

Okay. Thank you for that. So when you have a patient who comes in with those more unusual presentations, do you recommend that they get some type of genetic testing done, so they can be aware for their family members that maybe they should be screened?

Dr. Moshe Ornstein:

Yeah, absolutely. I mean, if there’s an unusual feature, either a feature associated with tuberous sclerosis complex or something called Birt-Hogg-Dubé, or a young patient with advanced kidney cancer where we don’t expect it, or a patient that shows up with cancer in both of their kidneys and nowhere else, that will trigger us to send the patient to a genetic counselor to do a more thorough family history and talk about what they might be looking for in terms of genetic testing.

Lisa Hatfield:

Okay. Thank you. All right. Another person watching is asking, are there known occupational exposure risk factors for kidney cancer?

Dr. Moshe Ornstein:

This is a great question. You know, we know that with certain cancers, there are classic occupational exposure risks. People want to know, “If I worked in a coal mine, am I more likely to get this kind of kidney cancer? What if I’m a Vietnam veteran and I was exposed to Agent Orange, is this more likely?” Really difficult to find those associations. I would say that probably the biggest ones are going to be, again, smoking, which I don’t know is so much an occupational hazard, although secondhand smoke is a real risk factor for cancers. Asbestos.

So people who worked around a lot of asbestos, that can be a risk factor even for kidney cancer. I know we usually think about it as lung cancer mesothelioma, but definitely for kidney cancer as well in some studies. And then certain forms of gasoline exposure. I will tell you that I’ve taken care of a lot of patients and a lot of people who have kidney cancer and have never been able to isolate an occupational exposure. But looking in the literature, we’re really looking more for asbestos, certain gasoline, secondhand smoke, things like that.

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Diagnosed with Renal Cell Carcinoma? Start Here

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Diagnosed with Renal Cell Carcinoma? Start Here from Patient Empowerment Network on Vimeo.

What’s important for newly diagnosed renal cell carcinoma patients to know? Expert Dr. Moshe Ornstein from Cleveland Clinic discusses his approach to communicating with newly diagnosed patients and key points that he covers in educating patients about their treatment and care.

Download Resource Guide

See More from START HERE Renal Cell Carcinoma (RCC)

Related Resources:

How Is Advanced Renal Cell Carcinoma Patient Care Managed?

How Is Advanced Renal Cell Carcinoma Patient Care Managed?

 Exploring Renal Cell Carcinoma Research | Expert Insights on Immunotherapy and Targeted Therapy

Exploring Renal Cell Carcinoma Research | Expert Insights on Immunotherapy and Targeted Therapy

 Expert Insights into Kidney Cancer Risk Factors and Genetic Testing

Expert Insights into Kidney Cancer Risk Factors and Genetic Testing

Transcript: 

Lisa Hatfield:

So, Dr. Ornstein, how do you explain a kidney cancer diagnosis to your newly diagnosed patients, and what are the priorities for those newly diagnosed patients?

Dr. Moshe Ornstein: 

When I’m looking at a patient and their family with a newly diagnosed kidney cancer, I’m trying to think to myself a couple of things. Number one, how can I make it as easy to understand without withholding any information? How can I be as encouraging as possible, but at the same time without misleading the patient in terms of what’s to come?

The way I break it down is into two main categories. There is the patient that presents with a localized kidney cancer. So they came to the emergency room because they were having belly pain, and they were found to have a big mass growing in their kidney that is proven to be kidney cancer. And then there’s the patient who has advanced disease, metastatic disease that has spread beyond the kidney. Either they came in with metastatic disease, in other words, their kidneys in place, and they have cancer beyond the kidney. Or they already had a surgery a year or two ago, and now they come back, and the cancer has returned elsewhere in the body.

So for the patient that comes with a localized kidney cancer or kidney cancer limited to the kidney, I talk to them about what the diagnosis means in terms of what subtype of kidney cancer is it, meaning although most kidney cancers are clear cell renal cell carcinoma, there are other types of kidney cancer.

And I want them to have a good handle in terms of what they have, both so that they know and they have all the information they need, but also because I understand that most patients, or at least many patients are going to look for more information elsewhere. And without understanding the histology, the type of kidney cancer they actually have, I worry that they’re not going to get the right information. So I try to be very clear about what stage is it based on the scans or if they’re coming to see me after their surgery, what stage is it after the surgery?

What does it mean when something is a grade 1 versus a grade 2 versus a grade 3 in terms of what the cells look like under the microscope? That’s about the cancer. And then I talk to them about what we’re going to look for in the future. So again, we’re talking now about the patient with localized kidney cancer. I try to go through with them what the risk of that localized cancer is in terms of what the odds are of it coming back.

We talk about what kind of surveillance, what kind of watching or monitoring of the cancer are we going to do, how often they’re going to get CAT scans. So really try to give them the big picture about what cancer they have, what the outlook is, and what we’re going to do to keep a close eye on them. For the patient who has an advanced cancer, in some ways it’s similar. When I say advanced, I mean a cancer that has spread beyond the kidney that’s going to require therapy, immunotherapy, targeted therapy, a clinical trial, whatever it might be.

And again, super important for them to understand, is this a clear cell kidney cancer? Which is the most common? Is it a papillary kidney cancer? Is it something else? Then we talk about what the different treatment options are. What does the short term look like in terms of side effects? What does the short term look like in terms of getting the cancer under control? What does the long-term outlook look like? What are the possible long-term side effects? And then what are we going to do to monitor? Are we doing CAT scans? Are we doing MRIs? Are we doing imaging of their brain? So again, first and foremost, what’s the nature of the diagnosis, what the treatment options are and likely side effects, what they need to look out for, and then how we as a medical team are going to monitor this over hopefully the long run.

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Renal Cell Carcinoma Clinical Trials | A Deep Dive into the Latest Advancements

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Renal Cell Carcinoma Clinical Trials: A Deep Dive into the Latest Advancements from Patient Empowerment Network on Vimeo.

What’s the latest in renal cell carcinoma clinical trial news? Expert Dr. Moshe Ornstein from Cleveland Clinic discusses updates on antibody drug conjugates, targeted therapy, checkpoint inhibitors, bispecific antibodies, vascular endothelial growth factor inhibitors, and CAR-T cell clinical trials.

Download Resource Guide

See More from START HERE Renal Cell Carcinoma (RCC)

Related Resources:

How Is Advanced Renal Cell Carcinoma Patient Care Managed?

How Is Advanced Renal Cell Carcinoma Patient Care Managed?

 Diagnosed with Renal Cell Carcinoma? Start Here

Diagnosed with Renal Cell Carcinoma? Start Here

 Expert Insights into Kidney Cancer Risk Factors and Genetic Testing

Expert Insights into Kidney Cancer Risk Factors and Genetic Testing

Transcript: 

Lisa Hatfield:

So can you talk about any clinical trials you are excited about, both in the newly diagnosed setting and then the metastatic or recurring setting for kidney cancer, specific clinical trials, and then some of the medications that you had mentioned, are those FDA-approved right now or are those also in clinical…are most of those in clinical trials at the moment?

Dr. Moshe Ornstein:

I think what this goes to show is that, here I am talking to you, and sometimes some of the words are hard to understand. You can imagine a patient with a newly diagnosed kidney cancer, how confusing a lot of this can be. So I’m really happy we’re having this discussion. Everything I had mentioned up until this point is FDA-approved.

And if I am to mention something that is non FDA-approved, I’ll make that caveat. And while we’re talking about non-FDA-approved therapies, let’s talk about some of those new and exciting clinical trials. The way I look at clinical trials, whether it’s in the treatment naive, so a patient who has a newly diagnosed cancer, or in a patient with refractory cancer, meaning cancer that has gotten worse despite some treatment already.

So I look at clinical trials, and I tend to divide them into two different main categories. And I think for patients, this sort of helps categorize them in a neat fashion. One, is looking at those trials that are investigating novel therapies. So we spoke about those immunotherapy checkpoint inhibitors, we spoke about those vascular endothelial growth factor inhibitors, in other words, targeted therapy.

We spoke about this HIF-2α, those are all therapies that we understand the mechanism of action, we understand how they work. So one kind of clinical trial is saying, what’s next? What’s down the road? What’s not an irregular immunotherapy? What’s not a regular targeted therapy? What’s not another HIF-2α drug? What are the novel therapies being investigated? So some of those trials that I’m interested in are trials that are looking at something called bispecifics. So these are singular drugs that sort of have two different targets. We’re looking at cellular therapies. We know these things called CAR-T cells work well in some of other cancers like lymphomas, but is there a role for using this type of novel mechanism in kidney cancer?

Drugs looking at things called antibody drug conjugates, which again, these types of therapies are available in breast cancer, in bladder cancer, in other types of cancer, but not yet in kidney cancer. And that’s kind of the one category of novel mechanisms, novel agents. That’s one class of clinical trials. And the other class of clinical trials is really sort of optimizing the drugs we already have.

So we know that as a general rule, giving immunotherapy plus targeted therapy is better than giving immunotherapy alone. But what about trials looking at giving two immunotherapies plus a targeted therapy? We know that patients either get immunotherapy and immunotherapy, or an immunotherapy and a targeted therapy. What about if we gave two immunotherapies and a targeted therapy? Can three be better than two? So there are trials both in the front-line setting and in the refractory setting, looking at these novel therapies in the one bucket. And then there are also trials looking at these combinations and different ways of mixing and matching therapies that we already have to optimize patient outcomes. 

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Exploring Renal Cell Carcinoma Research: Expert Insights on Immunotherapy and Targeted Therapy

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Exploring Renal Cell Carcinoma Research: Expert Insights on Immunotherapy and Targeted Therapy from Patient Empowerment Network on Vimeo.

What’s important in renal cell carcinoma research news? Expert Dr. Moshe Ornstein from Cleveland Clinic shares an overview of research updates on immunotherapy, targeted therapy, and combination therapies.

Download Resource Guide

See More from START HERE Renal Cell Carcinoma (RCC)

Related Resources:

Renal Cell Carcinoma Clinical Trials | A Deep Dive into the Latest Advancements

Renal Cell Carcinoma Clinical Trials | A Deep Dive into the Latest Advancements

 Diagnosed with Renal Cell Carcinoma? Start Here

Diagnosed with Renal Cell Carcinoma? Start Here

 Expert Insights into Kidney Cancer Risk Factors and Genetic Testing

Expert Insights into Kidney Cancer Risk Factors and Genetic Testing

Transcript: 

Lisa Hatfield:

Dr. Ornstein, can you speak to the latest news in renal cell carcinoma?

Dr. Moshe Ornstein:

So just by way of a 30,000 foot view, when it comes to renal cell carcinoma, approximately two-thirds of patients are diagnosed when the cancer is in a localized stage, where the cancer is treated with curative intent, generally with surgery. For patients who present with metastatic kidney cancer, in other words, kidney cancer that has spread beyond the kidney, or for patients who had their kidney removed and then developed a recurrence or the cancer had come back to the lungs or the bones or anywhere beyond the kidney, those patients are treated with what’s called systemic therapy. Those are medicines that really cover head to toe, not a specific area, but head to toe.

And when we think about treatment options in kidney cancer, there are two main treatment options. One is immunotherapy. Immunotherapy is generally what’s called checkpoint inhibitors. And these are therapies that “release the brakes” on the immune system, and allow the body’s immune system to be activated to target the cancer.

And the other type of medicine is called targeted therapies. And these for the most part, are vascular targeted therapies, and the way I describe it is they shrink the blood supply to the tumors. So again, you have those tumors that are diagnosed at a local stage. You have those tumors that are metastatic or advanced beyond the kidney. And the main treatment paradigms have to do with immunotherapy and targeted therapy.

So we just had the ASCO GU meeting, and I just want to describe the updates and how they fit into sort of the overall treatment paradigms across the different treatment sections, in other words, localized and metastatic. So for a patient who presents and comes in with just a kidney mass, that’s a kidney cancer, generally that patient’s going to be treated with surgery. In general, there’s no rule for therapy before surgery. For many years, for that patient who had their kidney cancer removed from the kidney, either part of the kidney or the whole kidney removed, we really didn’t know what to do with those patients, and the standard of care was just to watch those patients.

And we’ll get into a discussion about what watching the patient means. But one of the updates from the recent meetings has been that for patients who have their kidney removed because of kidney cancer, there is now a rule in some patients, this has to be a discussion with the doctor, to use immunotherapy to help prevent or delay the cancer from coming back. It’s a personal discussion.

We have a lot of data to support the use of a medicine called pembrolizumab (Keytruda), which is an immunotherapy that patients would get for a year after their kidney surgery. So that’s really the big recent update in the localized kidney cancer world, where the kidney cancer has been removed by surgery, and there’s now a treatment option, a year of immunotherapy after surgery for the right patient. So now, we move to the metastatic patient.

So again, the patient who has metastatic disease, either comes in with metastatic disease upfront, meaning the kidney’s there, the tumor’s in the kidney, and there’s advanced disease. And the other type is the patient who had their kidney removed a year ago, two years ago, sometimes five years ago, and now shows up with new spots in the lungs or the bones or elsewhere in the body. And that is metastatic or advanced kidney cancer.

So by and large, the overwhelming majority, and in my clinical practice, 95 percent of these patients are going to get an immunotherapy-based regimen as the first treatment for advanced kidney cancer. And there are different types of immunotherapy-based regimens. There’s an immunotherapy in combination with immunotherapy, and that’s called ipilimumab (Yervoy) and nivolumab (Opdivo), so double immunotherapy, or an immunotherapy plus a targeted therapy.

Lisa, we spoke about the targeted therapy, cutting the blood supply. So in addition to getting two immunotherapies, some patients won’t get two immunotherapies, they’ll get one immunotherapy in combination with a targeted therapy. And those combinations include axitinib (Inlyta) and pembrolizumab, lenvatinib (Lenvima) and pembrolizumab and cabozantinib (Cabometyx) and nivolumab as the primary combination treatments for the first line of therapy for metastatic kidney cancer.

And the real updates from the recent meetings in this setting is just that with additional follow-up, in other words, we’ve seen follow-up at two years after the trial started, three years, four years, now five years, we’re seeing that there’s a subset of patients that continue to benefit with this combination years down the road. So, encouraging for patients. Again, it’s not every patient, different patients need different things, but just the knowledge that we have long-term follow-up data for patients who have gotten an immunotherapy-based combination for the front-line treatment for their advanced kidney cancer.

And the last update I want to touch on is once we move beyond that first line of immunotherapy-based combinations, we really don’t know exactly what to do beyond that. Meaning, if somebody got an immunotherapy-based combination, and then the kidney cancer got worse, what do we give next? And generally, we’re giving more of these vascular inhibitors, these targeted therapies. And the latest advancement in this area, in the refractory setting, in other words post immunotherapy-based combination is the introduction of a new medicine called belzutifan (Welireg), which is not a classic vascular inhibitor, but is something called the HIF-2α inhibitor.

It’s a very well-tolerated therapy in many of the patients. And it does have activity in the right patient. And it’s now FDA-approved relatively recently for patients who have already had an immunotherapy-based combination. So that’s kind of the major update. The post-surgery treatment with immunotherapy, long-term data for immunotherapy-based combinations in the metastatic setting, and a novel therapy, a new mechanism of action with a pill with a therapy called belzutifan for patients whose kidney cancer is getting worse despite standard treatments upfront.

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Kidney Cancer Patient Expert Q&A: Start Here Resource Guide

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Kidney Cancer Patient Expert Q&A Start Here Guide

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See More from START HERE Renal Cell Carcinoma (RCC)

 

Becoming an Empowered and [ACT]IVATED After a Renal Medullary Cancer Diagnosis

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Patient Empowerment Network (PEN) is committed to helping educate and empower patients and care partners in the renal medullary carcinoma (RMC) community. Renal medullary carcinoma data around prevention, treatment and research is ever-expanding and it’s important for patients and families to educate themselves with health literacy tools and resources on updated information in RMC care. With this goal in mind, PEN initiated the [ACT]IVATED Renal Medullary Carcinoma (RMC) program, which aims to inform, empower, and engage patients to stay updated about the latest in RMC care.

The [ACT]IVATED Renal Medullary Carcinoma program can benefit all RMC patients, sickle cell trait patients, and patient advocates. [ACT]IVATED helps patients and care partners stay updated on the latest treatment options for their RMC, provides patient activation tools to help overcome barriers to accessing care and powerful tips for self-advocacy, coping, and living well with cancer. 

Renal medullary carcinoma is a rare kidney cancer, and it’s essential that patients with sickle cell trait stay alert for symptoms of RMC. Flank pain and blood in the urine are warning signs that should be checked out immediately. Some research also recommends that individuals with sickle cell trait should also try to take precautions against extreme intense exercise due to a possible link to RMC.

RMC [ACT]IVATED Tip

Renal Medullary Carcinoma Disparities

PEN is fortunate to have an experienced RMC patient advocate Cora Connor  as part of the team. Cora serves as the RMC Empowerment Lead. Cora’s brother Herman’s RMC diagnosis led her to found the advocacy organization R.M.C. Inc. when she decided she wanted to help raise awareness for other patients and families. She is so grateful that Herman’s RMC is now cured after successful treatment and hopes more effective therapies for RMC will be developed. 

Cora interviewed expert Dr. Nizar Tannir from MD Anderson Cancer Center in several RMC programs. There are many Black, Indigenous, and People of Color (BIPOC) groups who experience healthcare disparities as RMC patients. Dr. Tannir explained how he’s cared for many Black, Hispanic, and other people of color patients who have experienced healthcare disparities and a lack of insurance coverage and access to quality treatments. “We need to remove those barriers and that’s the only way we’re going to address healthcare disparities, is by making it not disparity anymore. And how you do that, you give healthcare access, equal healthcare access to those individuals, because those individuals want to live, people want to live, people want to take care of themself, of their bodies, their health, they want to live longer, they want to be cured if they have cancer. But we have to provide them the access to the best, be it the treatments that are available right now, even clinical trials, even clinical trials of drugs that may not be FDA-approved, they should have access to those as well, they’re equal citizens in this country.”

Lack of health insurance is a common barrier to care for RMC patients. Dr. Tannir shared about this issue. “Unfortunately, there is another side of that story that is common to patients with RMC because they are young and many of them are either students or they’re working at different jobs, they don’t have…many of them do not have health insurance unless they serve in the military.”

RMC [ACT]IVATED Tip 2

Solutions for Improved Renal Medullary Carcinoma Care

Clinical trial participation is one approach that can improve care for RMC patients. It’s also key for patients to learn more from credible resources, asking questions to ensure your best care, and helping to educate others about renal medullary carcinoma for education and empowerment of the RMC community.

Clinical trial participation by diverse populations is important to develop new and refined treatments –- as well as toward a potential RMC cure. Dr. Tannir explained how treatments need to advance past chemo. “…we can’t stop with just chemotherapy, we can’t just have chemotherapy. We need more effective drugs, we need more drugs, because, unfortunately, not every single patient with RMC will respond to chemotherapy like Herman did and be cured and alive and are living well 10 years, 11 years and beyond.”

Dr. Tannir further explained about clinical trial participation and learning about the benefits and risks – and also expressed his hopes for an RMC cure. “…you should not be afraid of trials, you should embrace them and you should participate in them. But, of course, you know the role of the physician is to explain the rationale and the potential benefits and potential toxicity, because everything has a price. Unfortunately, there are some drugs that could cause side effects, but hopefully it’ll be worthwhile to achieve to break the barrier of cure.”

Raising awareness about a lack of insurance coverage for RMC patients is another key to improving care. Dr. Tannir shared advice for others to advocate for RMC patients and to raise awareness. …“work with your congressmen and congresswomen, work with patient advocacy programs, raise awareness. Let’s get everybody the healthcare insurance that they deserve, like members of Congress so that nobody is turned away from going to the best facility that can help them. I hope before I retire that I will see this achieved. Because that’s really, I think if the number one on my list of things to do is this…is have equal healthcare access to everybody with an RMC diagnosis, so that they get the best care they deserve.”

RMC [ACT]IVATED Tip 3

[ACT]IVATED Renal Medullary Carcinoma Program Resources

The [ACT]IVATED Renal Medullary Carcinoma program series takes a three-part approach to inform, empower, and engage both the overall RMC community and patient groups who experience health disparities. The series includes the following resources:

Though renal medullary carcinoma needs more research and treatment advances, patients and care partners can be proactive in gaining knowledge to help ensure optimal care. We hope you can benefit from these valuable resources to aid in your RMC care for yourself or for your loved one.

[ACT]IVATION Tip:

By texting EMPOWER to +1-833-213-6657, you can receive personalized support from PENs Empowerment Leads. Whether you’re facing a renal medullary carcinoma diagnosis, or caring for someone who is, PEN’s Empowerment Leads will be here for you at every step of your journey.

How Do You Explain RMC to Newly Diagnosed Patients and Families?

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How Do You Explain RMC to Newly Diagnosed Patients and Families? from Patient Empowerment Network on Vimeo.

What’s most vital for renal medullary carcinoma (RMC) patients to know? Expert Dr. Nizar Tannir explains the urgency of RMC diagnosis and shares advice for patients and families to find the best possible care.

Dr. Nizar Tannir is a Professor in the Department of Genitourinary Medical Oncology, Division of Cancer Medicine at The University of Texas MD Anderson Cancer Center.

[ACT]IVATION TIP

“…tell the patients to seek care if or when you have the diagnosis of RMC at the best place, hopefully you’ll be able to have access to an institution, an academic institution, or a hospital that has the expertise, that has the experts in medical oncology and in surgery and radiology and all the nursing staff, the support staff to get the best care…Time is of the essence.”

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Related Resources:

What Do Renal Medullary Carcinoma Patients Have in Common?

What Do Renal Medullary Carcinoma Patients Have in Common?

 Renal Medullary Carcinoma Treatment Options for Newly Diagnosed Patients

Renal Medullary Carcinoma Treatment Options for Newly Diagnosed Patients

 Biomarker CA-125 and Renal Medullary Carcinoma: What Do We Know?

Biomarker CA-125 and Renal Medullary Carcinoma: What Do We Know?

Transcript:

Cora:

Dr. Tannir, how do you explain RMC to your newly diagnosed patients and families?

Dr. Tannir:  

I explain RMC to my patients and their families as it’s an aggressive cancer that afflicts young people. And, of course, by the time they come to me, they know already they were sent with that diagnosis. Often the diagnosis has been made before they come, but if they come with a suspicion, we proceed and do the workup, the biopsy and prove that this is what it is. You explain it to them as an aggressive cancer that requires urgent treatment. This is where urgency comes in. RMC is not a diagnosis that you can sit on for months and delay the initiation of effective important therapy so you explain it to them as a cancer, that in the vast majority of patients, by the time it’s diagnosed, it has already spread outside the kidney to organs, to lungs, or bone or liver, lymph nodes invariably, the vast majority of these patients will have metastasis or spread of the cancer to lymph nodes.

So you have to be honest with the patient and you tell them it is advanced. And the treatment would be after we establish the diagnosis with a biopsy to initiate our first-line therapy. For patients with RMC, unlike common types of kidney cancer, the most common is clear cell, where the treatment there is totally different, it’s not chemotherapy. For RMC, it is chemotherapy.

So my activation tip is, tell the patients to seek care if or when you have the diagnosis of RMC at the best place, hopefully you’ll be able to have access to an institution, an academic institution, or a hospital that has the expertise, that has the experts in medical oncology and in surgery and radiology and all the nursing staff, the support staff to get the best care. That’s really the activation tip once a patient is faced with the diagnosis of RMC, but it is cancer arising in the kidney and it’s aggressive, and, but there is hope and we have a plan, and the treatment plan should be initiated on an urgent basis, there’s no time to be wasted when a diagnosis of RMC is made. Time is of the essence, that’s my activation tip. Time is of the essence and valuable time, unfortunately, can sometimes be wasted, trying to get to the right place, especially if the patient doesn’t have insurance. I think this is really the urgency that patients and their loved ones have to really be aware of.

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What Are the Symptoms of Renal Medullary Carcinoma?

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What Are the Symptoms of Renal Medullary Carcinoma? from Patient Empowerment Network on Vimeo.

What renal medullary carcinoma (RMC) symptoms do high-risk patients need to be aware of? Respected expert Dr. Nizar Tannir shares common symptoms that can signal RMC and advice for patients to help ensure they receive urgent care when needed.

Dr. Nizar Tannir is a Professor in the Department of Genitourinary Medical Oncology, Division of Cancer Medicine at The University of Texas MD Anderson Cancer Center.

[ACT]IVATION TIP

“…if an individual who has sickle cell trait sees blood in the urine or they have flank pain, that those are warning signs, they need to seek medical attention, they need to contact their physician or go to a local emergency room or healthcare facility, and be checked. They can start with having an ultrasound or a CAT scan to really evaluate the kidneys, to look at the kidneys.”

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See More from [ACT]IVATED RMC

Related Resources:

What Is Renal Medullary Carcinoma?
How Is Renal Medullary Carcinoma Diagnosed
 What Are the Challenges of Diagnosing Renal Medullary Carcinoma?

What Are the Challenges of Diagnosing Renal Medullary Carcinoma?

Transcript:

Cora:

For those who may be considered high-risk, what are the symptoms of renal medullary carcinoma?

Dr. Tannir:

RMC, is the most aggressive type of kidney cancer so as any kidney cancer, the symptoms relate to the tumor in the kidney, so there will be blood in the urine, that’s one symptom another symptom is pain, flank pain or abdominal pain, belly pain, those are the symptoms related to the, these are local symptoms related the finding of the tumor in the kidney, but if there is a spread of the cancer and RMC, the reason it is one of the most aggressive cancers any person can get, and the most aggressive kidney cancer type is because of its propensity to spread to organs, and, of course, if there is a spread of the cancer or RMC to organs, there will be symptoms related to the spread of the cancer to these organs, for example, if they cancer spread to the lungs, the patient or the subject, we have cough or shortness of breath, or chest pain, if it spreads to bone they have bone pain, they may have weight loss and fever, and these are called constitutional symptoms.

So fatigue, so these are symptoms related to advanced cancer as it is with any advanced cancer, but specific local symptoms related to RMC would be flank pain and or blood in the urine. These should be warning signs. So my activation tip is if an individual who has sickle cell trait sees blood in the urine or they have flank pain, that those are warning signs, they need to seek medical attention, they need to contact their physician or go to a local emergency room or healthcare facility, and be checked. They can start with having an ultrasound or a CAT scan to really evaluate the kidneys, to look at the kidneys. So this is an important activation tip for individuals who see, who experience or encounter any of those symptoms I just mentioned.

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What Is Renal Medullary Carcinoma?

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What Is Renal Medullary Carcinoma? from Patient Empowerment Network on Vimeo.

How is renal medullary carcinoma (RMC) defined? Expert Dr. Nizar Tannir explains RMC, who is most often impacted, and the risk factors for developing RMC.

Dr. Nizar Tannir is a Professor in the Department of Genitourinary Medical Oncology, Division of Cancer Medicine at The University of Texas MD Anderson Cancer Center.

[ACT]IVATION TIP

“for individuals who have sickle cell trait, first is to not panic, please. Sickle cell trait is very common as we know, at least 3 million in the United States have that. Vast majority of patients will not develop RMC. So people with sickle cell trait should not panic that they will…they are destined to develop RMC, because only very, very few will develop it.”

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See More from [ACT]IVATED RMC

Related Resources:

What Are the Symptoms of Renal Medullary Carcinoma?
How Is Renal Medullary Carcinoma Diagnosed
 What Are the Challenges of Diagnosing Renal Medullary Carcinoma?

What Are the Challenges of Diagnosing Renal Medullary Carcinoma?

Transcript:

Cora:

What exactly is renal medullary carcinoma? And is this disease exclusive to those with sickle cell trait?

Dr. Tannir:

Renal medullary carcinoma is the most aggressive type of kidney cancer and it afflicts young people who are African American in the United States, and the vast majority of these patients or these individuals, have sickle cell trait. But the reason the vast, and I would say 95 percent of subjects or patients who have RMC have sickle cell trait, is because sickle cell trait is much, much more common than sickle cell disease. And so statistically-speaking, sickle cell trait is much more common than we see, the vast majority of patients with RMC have sickle cell trait. So sickle cell trait…but in general, a broader sickle cell hemoglobinopathy is the most important risk factor for developing RMC. That’s the link, the most important link between the renal medullary carcinoma. That most aggressive kidney cancer type and sickle cell hemoglobinopathy.

There is a close type of kidney cancer where individuals will have similar tumor type. Aggressive, but they don’t have the sickle cell trait or other sickle cell hemoglobinopathies and that entity is called renal cell carcinoma, unclassified with medullary phenotype. Medullary phenotype is the resemblance with the RMC. My activation tip for individuals who have sickle cell trait, first is to not panic, please. Sickle cell trait is very common as we know, at least 3 million in the United States have that. Vast majority of patients will not develop RMC. So people with sickle cell trait should not panic that they will…they are destined to develop RMC, because only very, very few will develop it. So, I think it’s important to be aware of that link of RMC and sickle cell trait but not to really make it, and worry every day that this is…that they’re doomed.

I want people to really not panic and understand the link and have the awareness, and if they haven’t been tested for sickle cell trait, they should be tested. And I think nowadays all hospitals test the newborns for sickle cell trait, but it should not be a scare for people who have it already. 

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RMC Patient Profile: Lamar Valentina Part 2

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Read the first part of Lamar’s RMC journey here…

Part of Lamar’s cancer treatment occurred during the COVID-19 pandemic. He had to quarantine to keep himself safe, and it was scary to him at times. “But now that COVID-19 has subsided a little bit. It’s still around, I recommend doing some things that you enjoy. Don’t let cancer take away the joy that you still have. If you’re someone who’s active, maybe you just need to scale back on how active you are. Of course, you want to be safe. If you’re someone who likes to travel, find ways that you can still do it safely.”

Lamar found some activities that were helpful for him physically and mentally. “What helped me was being more involved in nature. I would do walks. I would sit outside and watch the clouds. I’d watch the stars at night. And I try to still continue to play basketball with my son. Obviously, he’s starting to get a little better than me. He’s getting bigger and faster, and I’m a little weaker. But I try to still do things that are fun and enjoyable.”

During part of COVID-19 restrictions, Lamar started missing the ability to do things, being self-sufficient, and even getting back into work. People asked why he was in such a rush to get back to work, but work helped him feel a sense of purpose. He felt like he had become a burden to his loved ones who had to cared for him. Lamar recommends striking a balance between accepting help and doing some things yourself. “Let others who want to help you actually help you. If you feel up to doing other things on your own, don’t shy away from that. Don’t let cancer take away a little bit of independence or a little bit of your purpose that you feel. I enjoy doing these PEN interviews, because I think we need that voice, and people shouldn’t shy away. Obviously, I’m not saying go out and be reckless. Be safe but try to do the things that bring you joy.”

People often tell Lamar that he looks so healthy and that he doesn’t look sick, which can be frustrating, since he wakes up with pains and has tumors all over. His biggest takeaway from this journey is how resilient he is. Lots of people tell him that he makes cancer look easy but don’t realize that it’s very difficult. “I just feel like life is short as it is. We all have an expiration date, and we don’t know when it’s going to come. And that’s the only thing guaranteed in life. For me, I really just feel like I want to live each day as if I’m trying to make a mark, at least be as happy as possible, chasing my goals and my dreams. I try to make sure with every encounter that I have with people that I’m not angry or bitter. I don’t want that to rub off on them, so I try to make sure that I greet everyone with a smile.”

If people don’t know specifically from his appearance since his eyebrows and hair are gone or know from someone else, Lamar prefers others to not know what he’s going through. “I don’t want people to feel sorry for me. Just treat me like a normal person, and hopefully I can pass on some positive energy and some happiness to everybody else regardless of what they’re going through to make it a kinder place here on earth.”

Lamar feels blessed about his overall quality of life. He’s at work and still travels for work as a flight chief in the Air Force. I’m not as physically active as I’d like to be. He’s doing chemo every three weeks, and will be starting radiation soon for a spot that’s remaining. The ultimate goal is to achieve no evidence of disease. He’s been in outpatient care for his entire treatment process and has been able to go to the hospital for chemo and then returns home and to work. “It’s been an absolute blessing that I cannot take for granted. But I still go through ups and downs. I have slight pains here and there. I’d love to be able to work out three to four days a week. But I’d rather take it easy and focus on my body healing from the inside out, and I’ll get back to working out more sooner or later.”

His biggest advice to renal medullary carcinoma (RMC) patients and cancer patients is don’t give up hope. “A lot of this fight is mental. Your body follows physically what you think mentally. So speak positive affirmations. Every day when you wake up even on the tough days, speak healing into your body. What you’re eating, whatever you’re drinking, it’s going to provide healing and substance. It’s going to rid your body of cancer. No matter how dark it looks or how dark it gets at any point, do not give up hope. Do not lose your spirit. Make sure you’re smiling and laughing and doing the things you love with the people you love.”  

Lamar looks forward to ongoing research of RMC. “This has been a huge purpose added to my life. Anything I can do while I’m here, I’ll do it. I’m a big advocate for more support and more research for RMC. I know each day we’re getting closer to a cure, and hopefully this won’t impact families as negatively as it has in the past.”

What’s Lamar’s parting advice to other patients? “When you come out of the storm, you won’t be the same person that walked into it, that’s what the storm is all about. When you can’t control what’s happening to you, control how you respond to it, that’s where your power is.”

RMC Patient Profile: Lamar Valentina Part 1

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When Lamar Valentina shares his renal medullary carcinoma (RMC) patient journey, you can tell that he loves serving and helping others in his work and free time even as a cancer patient. As an active duty Technical Sergeant in the U.S. Air Force, Lamar has continued to work throughout his cancer treatment. When a lump on the side of his neck combined with extreme abdominal pain and flank pain concerned him, Lamar decided to have his symptoms checked out at the hospital. His RMC diagnosis came shortly before he turned 35, and his chemotherapy started about two weeks after his diagnosis.

Lamar is fortunate to have some friends who work in cancer centers, and they were connected with experts at Dana-Farber Cancer Institute, which is in Boston where his son also lives. The COVID-19 pandemic created a delay for some of his chemo, but it ended up as a benefit to give his body a break. Lamar recalls feeling some measure of relief about his tumor scans, “…we saw that there was a little bit of growth, it wasn’t alarming growth, but there was some growth, but it still hadn’t gone to where it was when I first was diagnosed, so that was the good thing that it wasn’t as aggressive as it’s known to be.”

After the things he’s gone through during his cancer journey, Lamar feels he has much to share to help other patients with what they’re going through. For newly diagnosed patients, he recommends that patients take advantage of resources and oncology therapists that most cancer centers provide. “Take the time to process the news of your diagnosis. I was sort of like a deer in headlights. Everything went blank, and I felt like I was in a nightmare of a dream, trying to wake up. So process your diagnosis and go through the emotions. You’re going to feel sad. You’re going to be depressed. You’re going to be angry. You’re going to be curious as to why you. But once you process those emotions, make sure you don’t compartmentalize those emotions and you express them to somebody whether it’s a friend, a caregiver.” 

Early after his diagnosis, Lamar decided to go full-on vegan and lost a lot of weight. “It was very frightening, because losing weight made my body become a lot more frail and weak. So I started to eat fish and chicken. His advice to other patients, “I think specific things like that definitely talk it over with your primary doctor, your medical team to make sure you’re doing what’s best for yourself and that you’re not going to hinder your treatment.”

Lamar feels fortunate to have connected with the Patient Empowerment Network (PEN) RMC Empowerment Lead Cora Connor through a Google search and found R.M.C., Inc. He also feels that the RMC community is a very tight-knit community, “I really like to pay homage to those we have lost. One of the first friends I met was Chad Alexander, Ava Cummings, Kai Penn, Da’Corey Kimbrough, Seth Calhoun, Caleb Wheeler, Feninna Vasilou, and there are so many other people I’ve met…they’ve since passed away. These are a few of the RMC warriors we have lost. I continue to fight for them and to everyone still battling RMC, I wish nothing but clear scans as we fight on the front lines together! Finding people who are going through this whether RMC or another form of cancer, I think you can relate more to cancer patients, because they understand what you’re going through.” 

Lamar advises patients to empower themselves. “You want to be able to at least know what questions to ask. And it starts with educating yourself. So I think you want to be able to go into those appointments and know what questions to ask, know if you get a certain answer to that question to know what a good follow-up question would be.” Early on in his care, he would record his conversations with his doctor to ensure he got all the information. Lamar also advises writing down questions before you go to your appointments to make sure you don’t forget about them. 

According to Lamar, being involved and learning about trial treatments are vital ways for patients to take part in their own care. “A lot of people have asked me about my treatment plan, but we’re all different. Our bodies are different. The way we can handle certain treatments are very different. So I try not to compare my care and the chemotherapy to what other people had. Because if you go based off that, you may turn down a treatment that may possibly work better for you with your genetics, and it may not have worked well for someone else, and you deny that based off their reaction to that treatment when it could be really helpful for you.”

Read the second part of Lamar’s RMC journey here…

Armia’s Story

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Armia’s Story | Renal Medullary Carcinoma from Patient Empowerment Network on Vimeo.

Renal medullary carcinoma (RMC) patient Armia Austin was diagnosed at age 21. Watch as she shares details about her diagnosis and treatment journey, advice to others for sickle cell trait testing, and hopes and goals for the future.

Transcript:

Armia Austin:

I was diagnosed with RMC back in May of 2020. I was 21 years old when I was diagnosed and I was at college when I started getting symptoms. The timing couldn’t have been better because I had symptoms and then it was spring break and then the pandemic hit. So, I was able to come home, be with my family, and be able to attend all these doctors’ visits, ’cause I had to get CT scans, MRI all that kind of stuff. So, the timing was good because I was able to come home from college and get the testing that I needed to see exactly what was going on. Finding a doctor was very simple, because I went through my primary care doctor, and then I was referred to a doctor for my urinary tract, so I saw someone to get a CT scan on my bladder and all that stuff, and then they saw a tumor on my right kidney, so they didn’t know what it was, and they didn’t care if it was cancerous or not, I’d see a neurologist for that, so they didn’t care if it was cancerous or not, they just wanted me to remove the kidney all together as soon as possible because of the size of my tumor. So, in May, I got the kidney removed, my right kidney removed, and then I followed up with the doctor who removed my kidney, my urologist, and they noticed that it was called renal medullary carcinoma, that was the type of tumor it was, and they followed up with an oncologist that I was able to meet with immediately because they wanted me to be watched regardless if it has spread or not.

So, my treatment path was, it was a pretty easy transition because I was able to have a urologist set up right away. So it was actually, I’d say after three months of not having or, of getting my right kidney removed, I was set up for a CT scan three months, fast forward three months from the surgery, but I started getting symptoms probably three weeks after my kidney surgery. I had a very rough chest pain, it was very heavy on my chest, I had issues breathing, so I… fast forward, I got another CT scan and there was fluid, they were fluid all over my chest in the CT, it filled my entire right lung, so it went from my right kidney all the way up to my right lung and it filled the entire lung, so I was breathing off of one lung at the time, and I would have anxiety attacks, panic attacks, everything because it was so hard to breathe on its own, so it would freak me out, but then I was able to get tapped in my back, so they would numb my back and then drain the fluid so it would release the tension in my lung area, but then I was able to get on chemotherapy by August, I had an event where my friends came over and they all shaved their heads for me, so that was really nice.

So talking to friends and family was definitely a huge benefit for me because people were always praying, leaving me messages, checking in on me, making sure I was okay, and when you are a cancer patient, it’s really hard to understand or wrap your head around the fact that you actually are

sick in a sense of like it’s very different from anything, any kind of sickness you have encountered before, so it was hard, but definitely talking to friends and family made the difference. My advice to others is definitely get tested for the sickle cell trait as soon as possible. I think that is the most important thing because that’s where it all starts. So even if you have the sickle cell trait, it doesn’t necessarily mean that you will be prone to this cancer, but it’s definitely good to get the test so that if it were to come up in the future, you would know how to handle it sooner.

So, my hope for the future, I’ve been on chemo for about six months now, and it’s been going very well for me. I’m still a college student, I never took time off from classes, so I never took not even a summer off when I was diagnosed, I was still in summer classes, finished fall semester, and now I’m in Spring, so I will be scheduled to graduate this May, May of 21, and then eventually I plan to go to medical school and become a doctor myself. Because I love the idea of helping other people who are unable to help themselves, and I feel like if we have more leaders in the healthcare field who can relate to a perspective, then we’ll have a lot more better doctors in the world because of the relationship and the perspective of being on the opposite end of the spectrum.

Never take life for granted because you never know what will come out of it. And I can say that from my experience, cancer isn’t what I planned for myself. I never thought I would be diagnosed at 21 years old, but it really shaped me as an individual as far as how important and how crucial life is, and how important is to stay on top of your health and you know just life is very important and whoever is going through something, just be grateful that you have the chance to get the help you need and that it’s not too late to get help from any type of medical professional because everyone’s life is important, everyone’s life is crucial.

And renal medullary carcinoma should not go unnoticed because it’s a crazy and it’s a crazy cancer, but with more research and more help and people who are more informed because of the cancer, I feel like we’ll be able to stop a lot of cases in the future.

What Health Disparities Exist for Patients with Renal Medullary Carcinoma?

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This video was originally published by Diverse Health Hub here.

What Health Disparities Exist for Patients with Renal Medullary Carcinoma? from Diverse Health Hub on Vimeo.

Dr. Pavlos Msaouel broaches the disparities that exist for patients with Renal Medullary Carcinoma (RMC). He contends that RMC afflicts a very vulnerable population, that is young African Americans. The disparity exists due to the young age of these patients who aren’t part of a work force with health insurance. Secondarily, this has caused RMC to be underdiagnosed, preventing optimal treatment for patients.

On a global scale, Nigerians face the same disparity, as traits of RMC affect a large number of the population. There are virtually zero reports of its existence and patients again are underdiagnosed. Dr. Msaouel argues we need to research questions that answer where and how RMC affects particular populations in order to equalize the disparity of underdiagnosed patients. Currently the US is gathering data and creating RMC patient communities and advocates. Dr. Msaouel stresses this research is needed on a global scale as well.

Transcript:

Rebecca Law:

Dr. Msaouel, what disparities exist for patients with Renal Medullary Carcinoma?

Dr. Pavlos Msaouel:

Now that is a wonderful and very important question because there are certainly disparities in caring for individuals with RMC (Renal Medullary Carcinoma). Think about it these are people who are young and young people in general — you know they do not have necessarily for example, in the U.S. that kind of insurance when they’re in their twenties or teenagers that they will have later in life or even you know are not part of the work force in that sense. But it’s even more challenging if you think that the vast majority of individuals with RMC are young African Americans. So, this is a disease that particularly afflicts a very vulnerable population, so there is no doubt that health disparities afflict individuals with RMC and this may be part of the reason why for many years this was an underdiagnosed disease.

Dr. Pavlos Msaouel:

We are finding out now that this cancer is more common than we originally thought. It’s still a rare cancer, there is no doubt about that, but it is more common than we originally thought to the point that nowadays in our clinics we see about 1 new case, 1 new patient with RMC per month. So that’s certainly more common than the about 100 cases that have been published thus far in the literature—there are many more that we do not know of. And think about it also in a different way, from a more global perspective. So, there is about let’s say 3 million individuals in the U.S. who carry the sickle cell trait. Most would be African Americans, other ones will be Caucasians so there are many different people who can have the sickle cell trait, but it’s mainly African Americans, but there are 300 million people in the world that carry the sickle cell trait — mainly in Africa.

Dr. Pavlos Msaouel: 

So, let’s take for example, Nigeria – there are many people in Nigeria who have the sickle cell trait yet how may reports are there about the existence of this cancer in these countries, essentially almost 0 and so that is a disparity in itself. This is a cancer that can be difficult to diagnose especially if you do not know about it, if you’ve never heard of it, but even if you do – even if a physician or healthcare personnel knows about this cancer it still needs specific tests to be done and many of them cannot be done in most countries so that’s also a disparity.

Dr. Pavlos Msaouel:

So the mere fact that this cancer cannot be diagnosed in many countries in the world is a disparity in itself, so if we were able to correct this and understand more about where it happens and how often it happens we know much more nowadays thankfully through the work of many people in the U.S. now that are becoming passionate about helping individuals with RMC (Renal Medullary Carcinoma) so we are gathering a lot of data, a lot of information, we have patient communities in the U.S., we have patient advocates that help immensely in the U.S, but this is very likely a global phenomenon, so that’s a disparity that will need to be addressed.

How Can Providers Combat Inequities in the Care of Renal Medullary Carcinoma Patients?

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This video was originally published by Diverse Health Hub here.

How Can Providers Combat Inequities in the Care of Renal Medullary Carcinoma Patients? from Diverse Health Hub on Vimeo.

Dr. Msaouel tackles the question of how providers can combat inequities in the care of Renal Medullary Carcinoma (RMC) patients. He states that patients go undiagnosed because providers don’t know about the disease. Dr. Msaouel urges that healthcare providers raise awareness about RMC and in doing so be diligent about screening patients with particular symptoms.

According to Dr. Msaouel, young African Americans possessing sickle cell traits and blood in the urine must be taken seriously and screened with ultrasound to check for suspicious kidney masses. They must be thoroughly checked with proper diagnosis. Dr. Msaouel says providers in the US know more about RMC but efforts must be increased to raise optimal awareness not only here in the states but around the world.

Transcript:

Rebecca Law: Dr. Msaouel, what can providers do to combat inequities in the care of Renal Medullary Carcinoma patients?

Dr. Pavlos Msaouel: So that’s a wonderful question. One way to be able to address this is to help as a provider raise awareness. So, one of the things that is happening is that very often in these cases, patients with RMC are undiagnosed because people don’t know about it. So, if healthcare providers know about this then they can think about it, and then they can start having it in mind. And so, if a young individual — especially if it’s a young African American who has the sickle cell trait — comes with blood in the urine in the ER you have to take it seriously.

Dr. Pavlos Msaouel: You have to do potentially an ultrasound of the kidney and if you do an ultrasound of the kidneys and you find something that’s suspicious like a mass, you have to take that very seriously. This is thankfully happening more and more often in the United States, but not necessarily always and it needs to happen more often around the world as well. So, that’s a simple step that we can do to address the inequity for this cancer.