Asa Newell shares how he survived testicular cancer on this episode of the Cancer Interviews podcast with host Bruce Morton, using Bleomycin, Etoposide and Cisplatin chemotherapy treatments, otherwise known as BEP chemotherapy regimen.
Asa Newell was only sixteen when one day in August 2020 he felt this sharp pain in his testicle that radiated all the way up to his neck. He didn’t say much about it at the time, and retrospect said he should have spoken up; but weeks later it came back, and he took himself to an urgent care in his hometown of Mount Vernon, Illinois. There he was told he had some sort of infection, warranting further investigation.
Asa said it was on September 11, 2020, when he was seen by a urologist who looked at the results of a scan and told Asa he had testicular cancer. At first, Asa joked about it, but his mother cried as she listened to the doctor and took notes when he relayed his findings. Then his father began to cry as well. Asa kept a stiff upper lip realizing if he couldn’t support his parents, they wouldn’t be able to support him.
His aunt is a pathologist who was able to get him seen at University of Indiana Health in Indianapolis. That happens to be where a cure for testicular cancer was found. It is called BEP. It is a platinum-based chemotherapy, consisting of bleomycin, etoposide, and cisplatin, and it is administered in dosages of three rounds. Like any chemotherapy, this regimen was not pleasant.
Bleomycin is the ‘B’ in BEP. It is administered with a syringe, a process that takes about ten minutes, but Asa said he had quit that after the first round. So, instead of three rounds each of bleomycin, etoposide and cisplatin, once he stopped taking the bleomycin, he had to go forth with four rounds each of the etoposide and cisplatin, each of which took about an hour to administer. However, he turned out to be allergic to one of the two, and that IV took about twice as long because it had been given very slowly so Asa wouldn’t have an allergic reaction.
While getting BEP, Asa said he had been so tired and nauseous in his life, but it appears the bleomycin, etoposide and cisplatin, did its job, as since then he says he has had only good scans and no reoccurrences. However, after the second round of chemotherapy, doctors found a fungal infection in his lungs as well as cancer in his lungs, but a series of surgical procedures cured that. Although he was sore after the removal of the cancerous testicle, Asa said he felt great. The chemotherapy did result in some hair loss, which he experiences to this day, and it affected his appetite because he says he had some craving “for some weird foods.” The chemotherapy also resulted in some cognitive issues, and, still in high school, Asa said his teachers were great at helping him through this very difficult time.
There are stigmas attached to certain cancers like lung cancer and men’s breast cancer. Asa says the same can be had for testicular cancer. Specifically, people who don’t know better think it is something that is sexually transmitted, like an HPV virus, when in fact, science is still baffled as to the exact cause of testicular cancer. According to Asa, the best way to overcome the stigma is through education, because most people know little or nothing about it. With education, more guys would know when to seek medical attention and that would greatly increase the possibility of early detection and a good outcome.
By way of advice, Asa Newell says if one is diagnosed with testicular cancer, they should be positive and stay positive through the journey, and don’t quit, even after one has reached survivorship.
Additional Resources:
Support Group: Testicular Cancer Society https://www.testicularcancersociety.org
Support Group: Epic Experience https://www.epicexperience.org
Asa Newell’s Facebook Page: Kicking Cancer One Ball At A Time
Transcription:
Bruce Morton: Greetings and welcome. This is the Cancer Interviews podcast, and I’m your host, Bruce Morton. Testicular cancer doesn’t get the attention other cancers get, but it becomes extremely significant once you are diagnosed with it. There’s the matter of the cancer journey, plus dealing with those who don’t understand the disease. Our guest is testicular cancer survivor Asa Newell of Mount Vernon, Illinois, and he is going to tell is about his journey. Here he is, Asa Newell, and Asa, welcome to Cancer Interviews.
Asa Newell: Thank you. I’m happy to be here.
BM: Asa, it is our custom to start by learning a bit about our guest, so if you would, tell us about where you are from, what you do for work and what you do for fun.
AN: I am from Mount Vernon, Illinois and there is a lot of industry here, but there is a lot of agriculture and I have been around agriculture all my life. I currently work as an international locomotive parts dealer for National Railway here in Mount Vernon and when time allows, I like to go to St. Louis and watch a good Cardinals baseball game every now and then when the season’s going.
BM: That sounds like a nice existence in terms of work and play, and there was a time of course in your life when you had not heard of testicular cancer. Would you say that prior to your diagnosis you were in good health?
AN: At that point I felt like I was in pretty good health. I did feel like something wasn’t quite right in the time leading up to my diagnosis and it was these subtle hints that kept popping up over and over again, which I didn’t think about much about my doctor told me I had testicular cancer. After doing research, I thought, “Oh, my gosh! I do have testicular cancer and I have been having these signs for almost a year.”
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To get back to your story, obviously you noticed something was wrong, but when you did, how did that manifest itself?
AN: I would say it was probably in August of 2020, which was about a month before I was diagnosed, I had awakened and I was going to spend the day with my dad, and when I was out with him and I was doing some stuff with his work, I had gotten this intense pain in my testicle and it wrapped around my back. That was pretty much the point in time I knew something was wrong but didn’t really know what it was and didn’t know the severity of it. The pain was pretty intense, and I should have gone to the hospital that day, but I decided I would do so the next time I got this pain I will go to the hospital and finally get it checked out. Before then I had no idea what was going on. Sometimes I would get these sweats at night or get pain in my back or my testicle, but I thought, hey, I am a 17-year-old guy, I probably am just having some puberty issues that I really didn’t want to talk to my parents about.
BM: But something inspired you to go the hospital. What was it?
AN: After experiencing some pain, I decided to go, I was on the back of a tube going around a lake being pulled by a boat. I had hit a wave and went up and landed back on the water, and when I landed on the water, I just had this intense pain. It was that pain again and I had promised myself that next time I felt that pain I would go to the doctor. I had yelled for them to turn off the boat, I got out, I swam back to shore, I took myself into Mount Vernon and went to my local urgent care. They said you probably have some sort of infection, but we want to get it further checked out. From there, I visited doctor after doctor and I we finally got it figured out.
BM: It’s different for everybody because each person, each diagnosis is different. Obviously, learning you have cancer is a horrible day, but for you, what went through your mind when you got this awful news?
AN: I was diagnosed on September 11, 2020, so already, it’s not a good day for anybody because it is a day of remembrance for 9/11. Fortunately, I had already been scheduled to go into my urology appointment to kinda figure out what was going on. The doctor, he looked at me after going through the scan and told me I have testicular cancer. He was very somber. I was still 17 at that point in time, so my parents had come in and they were in the doctor’s office with us when they had heard the news, and I looked over at my mom at one end of the doctor’s office, and she’s crying and she’s trying to write down everything about what doctor she needs to talk to; then I looked at my dad, he’s hitting his head, he’s crying, he’s unable to console, and I thought to myself I have seen hundreds and hundreds of people get diagnosed with cancer and be completely resilient about it. I realized that those who are resilient about it have so much more of a better chance than those who curl up in a ball and hide from the world. So, I thought to myself that day I am going to make this as best as possible. That’s when I launched my Facebook page, “Kicking Cancer One Ball At A Time” right after that doctor’s appointment and I have always tried to make it a positive thing even from my date of diagnosis. In the doctor’s office I told my parents, “I guess you’ll be able to give me some pretty funny nicknames from now on, since I’ll be losing a testicle,” but that was before we knew the severity of it, and I had no idea what I would be facing. Looking back at it, I probably looked at it in a very immature aspect, but I am happy I looked at it the way I did because it provided me more comfort than probably what I should have had at the moment, but it has also helped me to inspire others to stay positive through their cancer journey.
BM: Asa, I am going to guess that as time went on your parents ended up being a tremendous source of support for you, but in those early days it almost seemed like you were a source of support for them.
AN: Yeah. As I was lookin’ at ‘em, and I thought if I am not able to support them, they won’t be able to support me. Throughout the entire journey, no matter how sick I was, I was always saying, “We gotta keep goin, we gotta keep goin’,” even if I didn’t want to keep goin’. I have lived by the motto that every day you need to get outta bed and you just need to start walkin’ because you never know when your last day of walkin’ is gonna be. Also, from that experience and having my parents behind me and being a source of motivation for my parents, I feel like I am able to live a fuller life now, even after my cancer diagnosis and being held back by having cancer.
BM: Each cancer is different, and there are more than 100 types of cancer, but in your case, where treatment was concerned, did you have options?
AN: With testicular cancer, there are a lot of different treatment options, but we wanted to make sure that we had it right the first time and nip it in the butt. At the time I was a young guy, and I didn’t want to have something reoccur. Fortunately, my aunt is a pathologist up in Peoria and she works very closely with the medical staff at University of Indiana Health in Indianapolis. That happens to be where a cure for testicular cancer was found, and it’s BEP, three rounds, and I was lucky enough to get in and get the three rounds. I will tell you it’s the cure, but it’s not an easy cure by any means and it is a pretty hard dosage to go through. I actually had to stop the blyomecin, which is the ‘B’ in the serum, and I had to do four rounds of etoposide and the cisplatin. Let me tell you, it took me for a whirlwind. I had never been that exhausted and nauseous in my life, but the good part is that it was the cure, and it was right for me, and so far, I haven’t had any reoccurrences and I have had only good scans.
BM: Asa, there are going to be people who have just been diagnosed with testicular cancer, or fear they might be diagnosed and they might want to know more about BEP, so if you would, tell us more about it, and in easy to understand terms.
AN: BEP is probably the best hope for a cure that we have in probably any form of cancer. It is bleomycin, cisplatin and etoposide. They are all different types of chemotherapy, a platinum-based chemotherapy. The bleomycin takes about ten minutes, and it is in a syringe. The others, etopsode and cisplatin, they take about an hour each. In my case, I happened to be allergic to one, so the whole day ended up taking me about eight hours because they had to pump it in twice as slow so I wouldn’t have an allergic reaction, but it is just an IV or a pick line or a port and they just do a slow drip of it, and it’s not really too bad. It just takes a lot out of you, energy-wise.
BM: Now, exclusive of this form of chemotherapy, once you found out you were going to have one testicle, how did that feel? For those freshly diagnosed, this is stuff they want to know.
AN: Right after the surgery, I was pretty sore, but eventually felt fantastic. Usually, the process is, you will have your testicle removed and then two weeks later, you go back for scans and blood work to make sure that it hadn’t traveled before the surgery. In my case, it was the best I’d felt in like forever after I’d had my testicle removed, and even up until the second round of chemo I had felt fantastic; but once the second round of chemo hit, I started dealing with some heart issues I didn’t know I’d had. I had a fungal infection in my lungs as well as cancer in my lungs, and so I had a bunch of surgeries for that. They ended up getting me down quite harshly. Usually, guys don’t take BEP that hard, but unfortunately, I was one of the harder cases. I felt fantastic up until about the second round when I had other medical issues start to come up as well.
BM: BEP, as you said, is a form of chemotherapy, and there are certain very unpleasant symptoms that accompany chemotherapy. For one thing, your sense of taste. Then there is the prospect of hair loss. Were either of those issues for you?
AN: I still deal with a bit of the hair loss. I am starting to get more hair like my dad. I am 20 years old, and I have a hairline like my dad, and he is almost 50. I have got a nice bald spot on the back, but it varies through genetics and different aspects, like how your hair is lost and when it will come back, but hair loss is a thing and it is almost a psychological thing because if you have hair your entire life it is almost like it is a part of you and whenever you see it leave, it can be hard to deal with; but it is something you have to realize when it comes down to it, I would lose my hair again if I got to live. That’s one of the things I had to come to terms with, even if I have to lose my hair, I’ll be fine. On the taste side of things, I did lose taste for certain kinds of foods. I ate a lot of macaroni and cheese and drank a lot of pineapple juice. It does some weird things to your appetite, and I definitely had some cravings for some weird foods.
BM: We talked about outside your head, but what about inside? Did you have any cognitive issues?
AN: There’s definitely ‘chemo fog.’ That’s where chemo will come up and cloud your brain a little bit and your judgment is not as good as what it was as before and maybe your motor skills. That took me about a year to get over completely, but I took my SAT with my chemo fog on the brain and still scored pretty good. I knew I could have done better, but I had chemo fog on the brain. Thankfully the town I live in is such a small town that my teachers were able to understand, and they were very easy on me about rehabilitating intelligence-wise and as well as physically.
BM: There are certain types of cancers that have additional problems tacked onto them and for absolutely no good reason. One of them is lung cancer. If Person ‘A’, diagnosed with lung cancer tells Person ‘B’ he or she has been diagnosed, it is almost inevitable that Person ‘B’ will ask Person ‘A’ how many packs of cigarettes a day he or she smokes, when in fact many people diagnosed with lung cancer have never touched a cigarette in their lives. What about testicular cancer? Do people diagnosed with testicular cancer run into stigmas they shouldn’t run into?
AN: Yeah. Well, you know testicular cancer probably the most common cancer in men from age 15 through 35 and whenever you think of a young man and you think of the words ‘testicles’ or ‘testicular’, for some reason the general population will revert to some kind of perverse connotation about the disease that it is sexually transmitted and I have had countless people ask me if it something like an HPV virus that caused my cancer, and the honest truth is no. The cause of testicular cancer is unknown. It’s just like breast cancer in that regard, but because it is not as common, people have a certain ignorance as to what it is exactly is because of how unpopular it is, but it is like breast cancer, it is just a normal thing that happens to someone. There is no reason why. But, yes, there is a lot of stigma around it.
BM: Asa, in your perfect world, if there was something that could be done on a widespread basis to combat this ignorance, this stigma, what would it be?
AN: Probably just education would be the best thing. Education about testicular cancer would remove the stigma. It would allow young men if they are diagnosed with testicular cancer to catch it early and then also it would result in more awareness in the cancer overall regarding the mental aspects these cancer survivors are going through. Testicular cancer survivors, they feel like they have lost a part of their manhood when they have had a testicle removed, then they have to go through the chemotherapy, and it can be hard mentally as well as physically. It’s the education in my perfect world that would be able to shape the knowledge and the growth and the understanding about how testicular cancer really affects our general population and how we can make it easier for those it does affect.
BM: We talked about education, and we briefly talked about support, but I want to talk a little bit more about support. Asa, there is an organization based in Cincinnati, Ohio, the Testicular Cancer Society. Have you had much in the way of dealings with TCS, and if so, how has it helped you?
AN: Yeah, the Testicular Cancer Society has been a really great group for me, and it has put me in contact with probably seven of my best friends that I made last summer. Mike Craycraft is one of them and he introduced me to another organization called Epic Experience. We were able to get several testicular cancer survivors together and get to know each other and have another group in which we can support each other in a week up in the Colorado Rockies. That’s just of the things that the Testicular Cancer Society has done for me. Mike Craycraft found me and was messaging me, asking me if I needed any kind of financial assistance as well as emotional support because he allows other survivors to meet with those who are on a testicular cancer journey, and he tries to pair ‘em up. The Testicular Cancer Society is fantastic. It has a website, www.testicularcancersociety.org.
BM: Now it’s time to conclude this episode, and we always try to wrap things up the same way. Asa, if you found yourself speaking one-on-one to somebody who had just been diagnosed with testicular cancer, you might have a message for that person. If there is one part of the message that outshines all other parts, what would it be?
AN: I’d probably have to say that it seems pretty dark right now, but tomorrow will be a better day, so don’t give up today, don’t give up tomorrow, don’t quit until your journey is done. Keep it going and stay positive as long as possible.
BM: Which obviously is something that you have done, and we are finding out how well that has worked. Asa Newell of Mount Vernon, Illinois, thanks very much for sharing your story with us, thanks for being with us on Cancer Interviews.
AN: Thank you, guys, for having me, I am happy to be here.
BM: And we want to remind you as we always do, if you or a loved one are on a cancer journey, you are not alone. There are lots of people like Asa and organizations like the Testicular Cancer Society that are standing by, ready to help. So, until next time,we’ll see you on down the road.
Additional Resources:
Support Group: Testicular Cancer Society www.testicularcancersociety.org
Support Group: Epic Experience www.epicexperience.org
Asa Newell’s Facebook Page: Kicking Cancer One Ball At A Time
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