Making Renal Medullary Carcinoma (RMC) Invisible No More

Kidney cancer changed my life forever when my brother Herman, was diagnosed with a rare and aggressive form called renal medullary carcinoma (RMC) in April 2012. Months leading up to his diagnosis he was experiencing bad back pain and it wasn’t until he found blood in his urine that he knew something wasn’t right and went to the emergency department. That’s where they did an x-ray and told him he had a mass that was consistent with kidney cancer but he needed to follow up with a urologist to get a definitive diagnosis. Herman had begun searching the internet and found Dr. Nizar Tannir who told him chemo was the first step. Herman’s local oncologist told him that chemo was not an option. In fact, I’ll never forget the day our local oncologist looked at him and my mom telling him there was nothing they could do for him. It felt like my soul left my body. I couldn’t think and just broke down and cried. I refused to believe my brother was going to die. The very next morning we drove 17 hours to Houston, Texas and that’s when our fight began; traveling back and forth to Texas every two weeks for my brother’s treatment and doctor’s appointments. Some days he was very sick and not up to the 2 hour and 30-minute flight, but we have to say it was all worth it because today he is a survivor. Not only is he a survivor, but he has remained cancer free for almost seven years! We believe God intervened and placed us exactly where we were meant to be from the start and worked through the doctor’s there because when you read the statistics, he shouldn’t be here but as I’ve learned, despite your diagnosis, there is always hope beyond what you see.

To have a center of excellence like MD Anderson accept Herman in such a desperate time of need was a blessing. And while Herman’s story brings hope to those diagnosed with RMC, the statistics are still sobering. This is why I established RMC Support, a foundation dedicated to renal medullary carcinoma in 2013. Early detection is critical and can play an important role in the outcome of patient survival. I never imagined I would have been in contact with so many people from all over the world. I remember the feeling of hopelessness and I didn’t want anyone to experience what we did, which is why I created a social media platform where others can get connected and know that they are not alone in this fight.  

Through this community we launched a petition in 2016 gaining over 6,800 signatures asking the President to help ensure that individuals who carry sickle cell trait will be screened. We also created a registry for doctors to analyze information about people with renal medullary carcinoma. The goal is to gather info that can be used to estimate the number of cases of RMC each year, estimate the number of people with RMC at a specific point in time, better understand who gets RMC and what factors affect the disease, examine the connection between RMC and those who carry the sickle cell trait and improve RMC treatment. One of our greatest strides thus far was helping enact a bill in the State of South Carolina, which ensures parents of newborns born with sickle cell disease or trait receive educational information on sickle cell disease and trait associated complications.  

ARMC Network Manager at the Patient Empowerment Network, I have also helped launch the RMC Invisible No More Campaign. Raising awareness never stops. We hope to encourage those who are unknowledgeable about RMC to become knowledgeable and see how it is hurting certain communities. Through this campaign, we’d like to reach those who are living with probable sickle cell disease and/or trait, but are unaware of their status. Knowing your status is knowing your risk. Pattern.org is also highlighted throughout this campaign which is a big driver in rare cancer research. Pattern allows cancer patients to send in tumor tissue samples to be studied.  

One of the most significant things my brother’s cancer journey has brought me to has been meeting so many incredible people from all different walks of life. I feel incredibly blessed to be able to provide some source of hope and encouragement to patients, their families and loved ones. Herman is an inspiration to many, and I believe God has used him as a vessel to show other’s there is hope!  

No matter how rare a disease may be when we come together, we can make our voices heard. Never forget, you are your biggest advocate and all things are possible! 

Armia’s Story

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

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 flight 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 wanna 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 gonna 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 gonna 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 gonna get everything negative under the sun, but it is very important to be informed properly based off what you’re gonna 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 gonna 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 wanna compartmentalize those feelings and those emotions because it doesn’t go anywhere, it just kind of pester, it’s like sweeping it under the rug, it’s gonna 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.