PODCAST

Your Stories: Conquering Cancer

Conquer Cancer, the ASCO Foundation | The American Society of Clinical Onco

Your Stories features candid conversations between patients, the people who love them, and the researchers looking for new treatments each day

Disclaimer

The purpose of this podcast is to educate and to inform. The podcast is provided on the understanding that it does not constitute medical or other professional advice or services. It is no substitute for professional care by a doctor or other qualified medical professional and is not intended for use in the diagnosis or treatment of individual conditions. Guests who speak in a podcast express their own opinions, experience and conclusions. Neither Conquer Cancer, the ASCO Foundations, nor any of its affiliates endorses, supports or opposes any particular treatment option or other matter discussed in a podcast. The mention of any product, service, organization, activity or therapy on a podcast should not be construed as an endorsement.


Pitching In
Nov 6 2020
Pitching In
Nancy and Alex Berry were shocked when their son, Jake, was diagnosed with testicular cancer during a sports physical. He was only 16. In this episode of Your Stories, the devoted parents discuss what it’s like to watch your child compete against cancer and share how the experience changed their family forever. Nancy and Alex Berry were shocked when their son Jake was diagnosed with testicular cancer during a sports physical. He was only 16. In this episode of Your Stories, the devoted parents discuss what it's like to watch your child compete against cancer and share how the experience changed their family forever. Jake is six feet, 10 inches tall and an incredible athlete. And with his athleticism, he's had a few injuries along the way, two knee surgeries. Jake was about to be cleared to go back to sports after rehabbing from his second knee surgery. So on this day in January of 2018, we went to the orthopedic surgeon and had such joy when we found out he was cleared to go back to sports. And then we were headed to get his physical. And I was asked to leave the room. I felt like he was in there with the doctor longer than normal. And when I came back in, the doctor said, there's something wrong. He needs to have an ultrasound as soon as possible. So no one said cancer, but I immediately thought cancer. The next day, I was able to get the ultrasound. And sure enough, the doctor said there appears to be a tumor in the testicle. And we were immediately sent to a urologist where they then confirmed that it was cancer. The thought of a 16-year-old having testicular cancer was completely foreign to us. Subsequently, as we found out, it really does change your life forever. The key point that I think was important for us is finding the right care. 16 is a difficult age because it almost doesn't fall into pediatric, and it doesn't quite fall into adult cancer. So initially, many doctors wouldn't see him because he was a child. A lot of doctors wouldn't care for him, didn't want to take him on as a patient. And then we found out about Dr. Lawrence Einhorn who created the cure for testicular cancer. I think in the '70s, it had a 5% survival rate. And after Dr. Einhorn came up with the chemo regimen, it was a 95% survival rate. So of course, we wanted our son to see him. At first, they said, well, we don't see adolescents. And so we were dismayed thinking about what we were going to do. And so we wrote a note. Or actually, you wrote a note to Dr. Einhorn. And we talked about Jake. And we also talked about not only what we had gone through, but we sent the lab work. And I'll never forget the morning he called us. He told us that he would take Jake as a patient and that I believe I can save your son. That was a huge moment of relief. And as I've come to know Dr. Einhorn and learn more about him, I think he helps anyone that he can. The regimen is brutal, and chemotherapy is brutal. And when someone in your family gets cancer, the whole family gets cancer. We brought grandmas and grandpas and support group to the first chemo event the first time he went. And so they put the drug in his arm for the first time. And he literally started shaking. His eyes rolled back in his head, and he got all red. And he was having basically anaphylactic shock. Sort of an allergic reaction. And so as a parent, you're thinking, oh, my god. He's not going to take it. He's going to die. We thought that there was a chance he wouldn't be able to receive the medicine, that he'd be allergic to it was incredibly frightening. But they do things. They give you Benadryl, and you get through it. When Jake was going through treatment, he was in a chemo room with many people. And to watch people of all ages and all demographics go through this experience of worrying about if they're going to live or die and also having to try and survive the treatment, which is so harsh itself, was extremely moving and painful to watch. For Jake, as a 16-year-old losing your hair and not being able to go to school and missing out on sports is an incredibly traumatic experience. Yeah, I think the hardest part for Jake was he felt isolated. And really, the chemotherapy made him look very sick. He had lost the color in his face. He certainly did not look like himself. And he's just such a vibrant, amazing kid. And there's so many things to be afraid of during the process-- getting sick or basically to survive the treatment. That was so anxiety provoking to watch my son go through it and worry on a daily basis. He got a mild pneumonia. I was constantly worried about infection. We had 10 weeks to get through chemo. And so I just focused on the end date. And that's what got me through it. The relief of him getting through the chemo and ringing the bell was he made it. He survived this horrible process. And that was such an incredible experience. Then you're waiting for tests. Did this work? We flew to Indiana, and we met with Dr. Einhorn. And he looked at the scans. And the best news we ever received in our lives was that Dr. Einhorn determined him cancer free. I think that was definitely the best memory, and then you move on. And I think that it's how you feel after. The little things to us don't matter. And you live each day to the fullest. You hug your kids. You hug your wife, your family. And you just have an appreciation for life that you might have taken for granted before. It really has changed me personally. I really feel a calling to help people going through this. In the '70s, somebody stepped up and gave Dr. Einhorn money to continue his research to try something that never been tried before. And it turned a cancer that was a death sentence into one of the most, if not the most, curable cancers on the planet. There's 100 cancers out there that don't have the same prognosis that somebody in some lab is thinking about ways to cure it. And if we can do our little part to help give back and fund that, but others to do the same thing, the research aspect is critically important. The main reason we got involved is how important research is and how fortunate we feel that testicular cancer has an incredibly high cure rate and how can we not contribute or help these other cancers to become more curable. And so that to me is a passion that I feel strongly about and has changed for me. And seeing your own child go through something like this, it's life changing. What really surprised you about the experience? I know my answer, but let's see if it's the same. Well, you go first. What surprised you? Just the outpouring of support and the community aspect of it. When somebody you love is going through something like this, just a text or a phone call every day, every other day matters. Just to let people know that you're thinking of them, that gave us and me a lot of comfort. And I got that every day. I don't know that I would say that this surprised me, but maybe what impressed me the most was how incredible Jake is and that he rarely complained and took this so well and was so confident that this would have a positive outcome. We drew strength from him. My hope for the future is that he just has a normal, healthy, happy life and achieves the things that he wants to achieve in his life. And that's all I can ask for. Today, Jake is cancer free and continues to advance his baseball career as a star member of his team. His parents support research through Conquer Cancer, the ASCO foundation, so other families can face cancer with the same hope they were given. To learn more about the latest cancer research, visit conquer.org. Hearing the experiences of others can help people cope with the challenges cancer brings. Help others find these inspiring stories by leaving a review of the podcast. And subscribe today on iTunes or Google Play to hear every new episode. Thanks for listening to Your Stories-- Conquering Cancer. The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.
Being Your Own Advocate
Oct 9 2020
Being Your Own Advocate
Kimberly Irvine was used to taking care of the people she loved.  Conquering breast cancer – twice – forced the young mom to learn how to take care of herself in a whole new way. In a conversation with fellow philanthropist Riccardo Braglia, Kimberly shares how cancer changed her family and offers advice for patients who meet cancer in the prime of their lives.   TRANSCRIPT PRESENTER 1: Life doesn't stop for months and dads when they hear those dreaded words, "You have cancer." But how do you take care of your family while searching for your own care team, scheduling doctor appointments, and dealing with the side effects of treatment? Kimberly Irvine has some tried and true advice. She was a young mother of two when she conquered breast cancer twice. In this episode of Your Stories, Kimberly talks to her friend and fellow research advocate, Riccardo Braglia, about why it's OK, even necessary, for patients to put themselves first during treatment and offers tips on answering the tough questions children have about cancer. RICCARDO BRAGLIA: Kimberly, tell me about your story. KIMBERLY IRVINE: I was initially diagnosed when I was 31 years old. I remember hearing those words, "You have breast cancer," and the first thought was, I knew I was going to have to have to go through surgery. And there's many different options. You can choose to reconstruct, or you can choose not to. And in my situation, it was kind of a wait-and-see approach. I had to reach out and navigate with the physicians, the health care team. I had no idea who those members of my health care team were going to be. I learned very quickly that I was the CEO of that health care team. Of course, they can give recommendations to me, but I was the person that was going to ultimately make those decisions. I went through surgeries, radiation, chemotherapy, and about three and a half years later the disease came back when I was 35 years old. I then endured more surgeries, chemotherapy, and hormonal therapy. And today I'm happy to say that I'm 42 years old, and I am healthy and very blessed. RICCARDO BRAGLIA: This journey through cancer-- there is also another issue that patients, and the caregiver, and the family member have to face which is not just relating to the choice of what treatment. But there are many other things to tell your kids. That was a big challenge. KIMBERLY IRVINE: When I was first diagnosed, my daughter was six, and my son was four. At that age, if they see you lose your hair they think, Mommy's sick. The second diagnosis-- I was 35. They were 10 and eight. Well, life was very different because they started to understand the difference between life and death. I had questions like, hey, am I going to catch this? Did I do something wrong? Is that why Mommy got cancer? Those are things that I just didn't really know how to answer. I had to educate myself. Now here we are. I'm 42. My daughter is 17. My son is 15, and we're in a completely different paradigm in terms of now their concerns are, gosh, is it going to recur for you? And then the biggest concern is, am I going to get cancer? I had two situations recently with each of my children. My daughter one day had come into a room, and she was crying. And she said, oh my gosh, mom. I feel this lump in my breast, and I think I have cancer. And I just kind of sit there for a minute. Then I thought to myself, you're 17 years old. How do you even have to think, the first thing is I have cancer? And we had a doctor check her out, and she was fine, but it just really allowed me to understand that perspective of that fear just doesn't leave them. And then yesterday I was sitting at dinner, and I got a text from my son. And it was the same kind of thing. It was, Mom, I have this bump on my head, and I think I have cancer. So that really does affect our family, and I'm 10 years out from my first diagnosis. And that fear, and that anxiety, and that uncertainty never goes away. RICCARDO BRAGLIA: The survival patients can be a great example but also a great tutor on what is the journey. KIMBERLY IRVINE: You really have to be your own best advocate. People don't take the proactive approach of wanting to take care of themselves. That's probably one of the biggest lessons that my kids have had to learn at a young age, that they really have to take care of themselves, and there are things that they can do in terms of lowering their risk. None of us know if it's going to happen to us, but we can certainly take some control back to what cancer tends to take away from all of us. I tell patients that the way that you can allow yourself to heal is to take that story and really apply it in a way that's positive and funding cancer research. RICCARDO BRAGLIA: Part of my life is to be involved in research. The result of research is there. Cancer, which was really devastating to all people 20 years ago-- today there are a lot of cancer that are treatable, like yours, and people are surviving. So in the future I see that cancer is becoming more a chronic disease than an acute disease. KIMBERLY IRVINE: The other piece for me was really about having some of those tougher conversations with children, how to have those conversations in terms of, Mommy, are you going to die? How do you answer a six or a four-year-old child not knowing what the right answer was? The question I get quite often is, how did you parent through cancer? And I'm still facing that. There's hope. When you have kids, and you're going through a diagnosis, and maybe they're very young, and you're overwhelmed, I want you to have hope because now my kids are 17 and 15, as I said. And my daughter wants a work in health care and really make a difference, and I think that's when it really hit me. It was unfortunate that these kids have had to endure a cancer diagnosis, not once, but twice. But they've learned resilience, and they've learned how to overcome adversity in a really powerful way. And I think that's what's made them who they are. Everyone asks me, how do you work in oncology? Is it challenging? And I often tell people, oh gosh, it's absolutely challenging. There are some days I go home and bawl my eyes out. I've met so many amazing friends and continue to make friends, and they are literally fighting every single day of their life. I've lost a lot of them. For me, personally, that survivor's guilt is immense, and I just come back to the reality of, I'm here for a purpose. If I can use my story and I can help educate others, then I can inspire them and help them realize that cancer doesn't have to define you unless you want it to. You can take it. RICCARDO BRAGLIA: But you should learn from that? KIMBERLY IRVINE: Absolutely, and I've learned a lot of lessons. I tell my children every day I didn't want the adversity to really break us. I wanted to use it for purpose. My hope is that our stories will, whether you're a patient, a care partner, or somebody within that support community, that you're able to identify how you're going to handle that adversity. And whether that's just pushing yourself to get through one more chemotherapy treatment, or considering a clinical trial, or allowing yourself to talk about your story to somebody else because it will give them hope, and strength, and courage, and the grace to get through it and maybe beyond that ignite a movement to really make a much more impactful difference, leaving a legacy-- I think that's powerful. PRESENTER 1: Like Riccardo Braglia, Kimberly is using her cancer story to inspire others and invest in cancer research. You can learn more about the latest cancer research at conquer.org. if you need resources on how to navigate cancer, visit cancer.net, which offers physician-approved advice on every type of cancer. It's funded through the generosity of Conquer Cancer donors. Hearing the experiences of others can help people cope with the challenges cancer brings. Help others find these inspiring stories by leaving a review of the podcast, and subscribe today on iTunes or Google Play to hear every new episode. Thanks for listening to Your Stories, Conquering Cancer. PRESENTER 2: The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.