Tag Archive for: renal medullary carcinoma diagnosis

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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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 Challenges of Diagnosing Renal Medullary Carcinoma?

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

Renal medullary carcinoma (RMC) diagnosis may sometimes run into changes, but what are they? Expert Dr. Nizar Tannir explains what healthcare providers examine in RMC diagnosis, diagnosis challenges that can arise, and advice to patients to ensure they receive standard testing.

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

“…make sure that they…with that suspicion of having a mass in the kidney, blood in the urine symptoms, et cetera, to if they have not already known about their sickle cell trait status, to really have the test, which we call hemoglobin electrophoresis.”

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Related Resources:

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

Transcript:

Cora:

What are the challenges with diagnosing RMC?

Dr. Tannir:  

RMC is a rare tumor and it requires a special stain as well as the knowledge the clinical knowledge that comes with it. So to make the diagnosis of RMC, we typically get a biopsy of the mass in the kidney and/or a metastatic site, a site that the cancer has spread to, let’s say the lymph node. And then the pathologist examines this material, the specimen under the microscope, and the diagnosis is confirmed when the pathologist reads that the tumor is poorly differentiated, because that’s what RMC looks like under the microscope and is described by the pathologist as poorly differentiated adenocarcinoma. But the specific strain that clenches the diagnosis is called I-N-I 1.

INI1 and that is negative or worse. So when we see poorly differentiated carcinoma from a lymph node or a biopsy of a kidney mass, and then we have to link it with the history. And it’s important to ask then the subject, the patient, if they have sickle cell trait or if they’re aware that they have some sickle cell hemoglobinopathy. And if they do have sickle cell trait or another sickle cell hemoglobinopathy with that finding and the biopsy of poorly differentiated carcinoma, INI1-negative, that’s then it confirms the diagnosis of RMC. My activation tip is for the subject to make sure that they…with that suspicion of having a mass in the kidney, blood in the urine symptoms, et cetera, to if they have not already known about their sickle cell trait status, to really have the test, which we call hemoglobin electrophoresis. So that’s actually an activation tip for the provider when they face a patient with suspected diagnosis of RMC. If that information is not already known is to order the hemoglobin electrophoresis, which will then tell them that the patient, the individual has sickle cell trait or not. So, I think it requires awareness by both the individual, the subject as well as the healthcare provider.

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How Is Renal Medullary Carcinoma Diagnosed?

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

Renal medullary carcinoma (RMC) diagnosis involves testing that patients may need to follow up on. Expert Dr. Nizar Tannir explains common RMC symptoms, typical imaging tests that are involved, and advice to patients to be proactive to ensure their best 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

“…follow up after they have that imaging study…I would like patients to be aware and to be informed of what the symptoms mean. And that warning that blood in the urine or pain needs to be followed up and should not be dismissed or assumed that this is an infection or a stone that passed and you’re young, you don’t have to worry about cancer. They need to really follow up if that facility, that physician did not order the test, they need to follow up with their personal family physician and obtain those tests.“

Download Guide  |  Descargar Guía

See More from [ACT]IVATED RMC

Related Resources:

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

What Are the Challenges of Diagnosing Renal Medullary Carcinoma?

Transcript:

Cora:

Given how rare RMC is, we know many people have a long road to diagnosis, like my brother Herman, which can cause tremendous stress. How is renal medullary carcinoma diagnosed?

Dr. Tannir:  

Renal medullary carcinoma is diagnosed by imaging. Symptoms typically include pain, blood in the urine, and, of course, if the cancer has spread to organs, cough, fever, weight loss…so the diagnosis is made by imaging first. And typically this is done at a facility, hospital, clinic or emergency room, with an ultrasound or a CAT scan or an MRI, which typically shows a mass in one of the kidneys. Renal medullary carcinoma arises more commonly in the right kidney than the left kidney and three-quarters of the time it arises in the right kidney. So, but it can arise in the left kidney. So once there is a mass in the kidney, that obviously needs to lead to a biopsy.

And ultimately the diagnosis of RMC is made by obtaining a piece of that tumor, whether it’s from the mass in one of the two kidneys or a biopsy of a site that the cancer has spread to. So my activation tip is for a patient who has these symptoms and they seek medical advice at a hospital or a clinic or emergency room, is to follow up after they have that imaging study. Occasionally the facility may report the findings on the CAT scan, let’s say, but patients may not get that report; and, unfortunately, this may not be followed later with a phone call to the patient or family to alert them about the findings. So they need to…

Patients need to be proactive and participate in their care by getting the report, by finding out, by following up what showed up on the CAT scan or ultrasound or MRI, and then follow up further with a facility that is specialist in this type of disease.  So my activation tip is be involved, be engaged, be proactive, follow up after you had a test. And if you..if the patient goes to a facility and they just get dismissed without doing the test, because unfortunately I’ve seen it in my practice time and again, where a patient goes to a facility complaining of blood in the urine or pain, and they’re treated with antibiotics and they’re told that they have an infection and the patient doesn’t follow up and they haven’t done an imaging study, a CAT scan or an MRI or ultrasound.

So I think it is important, I would like patients to be aware and to be informed of what the symptoms mean. And that warning that blood in the urine or pain needs to be followed up and should not be dismissed or assumed that this is an infection or a stone that passed and you’re young, you don’t have to worry about cancer. They need to really follow up if that facility, that physician did not order the test, they need to follow up with their personal family physician and obtain those tests. So that’s really my activation tip for patients. 

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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.

Lamar’s Story

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

Renal medullary carcinoma patient and active-duty U.S. Air Force member Lamar Valentina shares important pieces of his RMC journey. Watch as he discusses the symptoms that led to his RMC diagnosis, his treatment journey, things he found helpful for support, and his hopes for how to educate others about sickle cell trait and RMC for better health outcomes.

Transcript:

Lamar Valentina:

I’m Lamar Valentina, I was diagnosed September 25th, 2019. What prompted me to be checked was I had a lump that was literally right here, it kind of protruded out, and I had some really bad abdominal pain as well as flank pain on my left side, it was really unbearable, so those three things combined — I got really concerned and decided to go to the hospital.

I’m in the military, active-duty military, so working out and kind of taking breaks, it’s common for me to get lower back pain, but it was definitely a different lower back pain, and then with the added lump that was between here, it was literally right here. And this kind of has actually gone down, so that’s a sign from my oncologist that says that the cancer is shrinking based off treatment. So diagnosed on September 25th, 2019. I started chemotherapy on October 11th of 2019. There were a few options. I had some friends that work in cancer centers, and my ex-wife actually works with foundation on medicine, and they had connections at Dana Farber in Boston, and that’s where she lives with my son who’s 12, who will be 13 in March. Starting chemo on October 11th, the first cycle that I was on was Carboplatin-Taxol, I did that for about six cycles, and there was shrinkage, but due to COVID, we took a break to give my body a break, ’cause chemotherapy did a big number on my body, I lost a lot of weight, obviously my hair and my eyebrows, my hair is still gone, my eyebrows are still gone, and it just…

With my body adjusting to chemotherapy was pretty rough, but I handled it well, so actually that break… During that time, I said about three months, two months through my break, I want to say we did that until about February, and then we started back up in April, so about three months and that was more so because of COVID and creating delays in between. But once we got a scan and 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.

Throughout this whole ordeal, it’s been family, friends. Throughout the beginning, you know you have a lot more support and it kind of balances out, which is fine, ’cause I’m a pretty introverted person anyway, but I have a great immediate circle that’s there to share positive affirmations and positive vibes and positive energy. And that’s honestly what helps me through that, along with music and staying productive, I’m still actively in school and still in the Air Force, active duty, I make 14 years, and next month in March, and my hope is that through this campaign and through everything else, we just continue to raise as much awareness as possible. I was always told growing up that sickle cell trait really was nothing to worry about, unless if I had a child with someone else that had the sickle cell trait, and then our child would be fully diagnosed with sickle cell, so I’ve never really even thought to be concerned about having a trait of sickle cell, so my hope is that through this campaign and through other everything else, we’re able to raise as much awareness as possible to grab the right people’s attention that are going to continue to put forth the proper research to help save more lives and of course, to live my life as long as possible, for as long as I’m here, and if I can hopefully inspire and motivate others along that through my hardships, hopefully that’ll help them to create a survival guide for their own lives moving forward. Whatever it is they may go through, but especially with RMC.

For anyone who’s recently diagnosed, my best advice is lean on your support team, your support circle, it’s going to be very, very hard, don’t be so quick to Google everything, but do try to make sure that you’re as informed as possible about your diagnosis about RMC, and then finding a community that fits. That’s exactly what I did as soon as I was diagnosed, of course. I did what I’m telling people not to do by Googling and everything, because once you Google everything, you’re going to get everything negative under the sun, but it is very important to be informed properly based off what you’re going to be going through, you’re down for the moment, but you’re not out, you just got a dig deep and make sure the people around you are sharing that positive energy and those positive vibes to continue to provide you with the motivation and then at a strength and the courage to fight, and it’s also okay to deal with the emotions that you may be going through. Some people feel that, “Oh, you got to be strong.” Being strong doesn’t mean not crying or not feeling sad, you’re going to feel every emotion imaginable once you are diagnosed.

So, it’s okay, the best thing is to do is to process that and hopefully have an outlet or somebody that you can share that with, and you can kind of unload it ’cause you don’t want to compartmentalize those feelings and those emotions because it doesn’t go anywhere, it just kind of festers, it’s like sweeping it under the rug, it’s going to pile up and just really, really become a lot.

So really, really lean on your support system, and if you don’t have a support system, I guarantee if you research it like I did. Reaching out to Cora Connor has been amazing, ’cause they put me in touch with other people that were going through what I’m going through, and talking with people who are going through, who can relate to what you’re going through is way different than talking to people who don’t really have an idea of what it is that you’re going through, not saying that they can’t help and they can’t be there for you, but it’s just, it’s a different type of comfort that comes from knowing someone that is literally sharing the same symptoms or going through the same treatment, or may have gone through the same treatment or the same procedures that you may be up against, and you can ask some questions and get a realistic answer from somebody with experience as opposed to getting assumptions or things from other people, but I would say stay positive. Stay as positive as possible. Don’t give up hope. Don’t give up hope.

It doesn’t have to be a significant other for other people that are going through if you’re single, it could just be your best friend, it could be a friend. Motivation and inspiration comes from the most strangest of places, and I’ll be witnessed. I’ll be the first to admit to that on the top of having someone, but there’s times when you often feel alone and you kind of think about how this impacts and affects them, those closest to you as well. So, I think taking that into consideration is something that people who are really diagnosed as well to guess we are the center of it, were the ones who actually are going through it, but the people that love and care about you, they’re going through it in a way as well too, they’re definitely affected and impacted by this too.