Frequently Asked Questions About Proton Therapy

Speaker 1: From the research bench to the patient's bedside, this is Bench to Bedside with your host, Vice Chancellor and Director of The University of Kansas Cancer Center, Dr. Roy Jensen.

Dr. Roy Jensen: This futuristic looking machine is the newest tool we have for fighting cancer. You are looking inside the Proton Center here at the University of Kansas Health System and it's set to open in just weeks. We are going to examine the impact it's having on patients lives now on Bench to Bedside. Good morning. I'm Dr. Roy Jensen, Vice Chancellor and Director of The University of Kansas Cancer Center. Joining me this morning to discuss proton therapy and what it is, who it can help, and how it is revolutionizing the way we treat cancers is Dr. Ronny Rotondo, Medical Director of the Proton Therapy Unit at KU Cancer Center. Also joining us is Myrna Palmer, a nurse and cancer patient who has under undergone proton therapy along with Karen Larson and Roma who underwent proton therapy when he was diagnosed. Good morning, everyone. I'm going to start with Dr. Rotondo. Could you tell us about this new facility?

Dr. Ronny Rotondo: Yes. Good morning, everyone. So we have built a proton center that is fully integrated into our previous existing radiation oncology department. And so, the facility includes proton therapy unit but also a number of additional expansions and additional facilities including dedicated recovery base for patients requiring anesthesia, particularly children, procedure room, and there's also dedicated patient... Sorry, child and family waiting room and toy closet and very child-family centric environment and there are also additional expansions that are being planned for the future.

Dr. Roy Jensen: So Dr. Rotondo, explain to our audience how proton therapy works for one and what types of cancer does it currently treat?

Dr. Ronny Rotondo: Proton therapy is a form of external beam radiation therapy, similar to x-rays. However, instead of using x-rays, it uses protons which are particles and they have mass and charge. And so, they interact with tissues in a very different manner than conventional x-rays. And so compared to x-rays or photons, proton therapy delivers a relative lower dose of radiation on the entrance path towards the tumor, delivers the majority of its radiation within the target, and then the protons stop right at the distal end or at the end of the target. And so, there's no radiation beyond that point. And so by leveraging or taking advantage of these unique physical characteristics with proton therapy, we're able to really deliver the radiation in a much more focused, precise manner, and limit the amount of radiation in the normal surrounding healthy tissues. And so, that allows us to effectively treat the tumor while minimizing potential side effects from treatment whether they be acute effects, things during treatment, or late effects, things that can occur in many months or many years down the line and that also translates into improved quality of life for patients.

Dr. Roy Jensen: Mm-hmm (affirmative). What specific types of tumors does this unit-

Dr. Ronny Rotondo: Proton therapy can, in practice, be used to treat a wide variety of tumors, really from head to toe. One indication or type of tumor that may stand to benefit the most from proton therapy are pediatric malignancies. Kids are particularly vulnerable to the late effects of radiation and even lower moderate doses of radiation can significantly impact children and impact growth and development. But proton therapy can also be used for brain tumors, skull-based tumors, spine tumors, ocular tumors, head and neck tumors, as well as potentially breast, lung, gastrointestinal tumors like esophagus or pancreas, and prostate cancer so there are many potential subsets of patients which can benefit significantly from proton therapy.

Dr. Roy Jensen: Myrna, thanks for joining us and welcome to the show. How are you feeling today?

Myrna Palmer: Oh, I'm feeling wonderful.

Dr. Roy Jensen: Excellent. Could you tell us a little bit about what type of cancer that you were diagnosed with and how you were treated with proton therapy?

Myrna Palmer: Okay, great. I had just been having some blood pressure issues and I was in nursing school. I was a little stressed and had some headaches and I thought maybe that was it. But leading up to that, I had gone in to get my blood pressure checked with my doctor and he got the MRI that led to talking with the... I was able to get in contact with Dr. Shaw who was at KU Med, neurosurgeon and we found a tumor in my brain. It was a Chondrosarcoma and the Chondrosarcoma had a hold of my carotid artery and that was causing the blood pressure. And so, we got into surgery very quickly and I was only having very minor symptoms of a little numbness on my left lip and that blood pressure.

We were able to get in, have that surgery, and I met Dr. Rotondo the day of my recovery, and he was introducing me to proton beam therapy. It was not available yet in Kansas but I was able to go to the Mayo Clinic in Phoenix and it was a wonderful experience. I just want to tell people that it was... With knowing now what that process is, I wanted just to encourage others with a wonderful experience because it is the... Going over to... I don't know if you want me to go into detail but we were able to go in and have a MRI and CT scan. They formed a mask over my head and pinned me, basically snapped me to a table, but I was told about what this would be and that they gave me so much confidence and just peace that this was going to be a good experience.

I really did try to hear or listen in while that was going on and I have to tell you that it was just an unbelievable thing. At one point, I saw a bright white light come from my right eye and then in another time it was a blue light flash. And other than a little popping in my ear, that was all that I was able to hear or feel during that proton beam experience. They give you some wonderful music to listen to, also your choice. But I just wanted to tell you that the type of cancer that I had was rare and it is... Especially where the location of it was in my brain, but I believe that through this experience, I have to tell you, I trusted the Lord and all of the contacts that were given to me both with the professional doctors, my friends, my family, they were just so supportive and I'll just say that it was just an unbelievable experience. I loved it.

Dr. Roy Jensen: Well, thank you.

Myrna Palmer: It was... Yeah.

Dr. Roy Jensen: So Dr. Rotondo, could you explain to us a little bit about the differences between proton therapy and traditional radiation and why was Myrna a good candidate considering her type of tumor and the location of her tumor for proton therapy?

Dr. Ronny Rotondo: Right. So again, proton therapy is a form of external beam radiation therapy. But again, it's a particle therapy as opposed to x-rays or photons. And so, because of the unique characteristics in which it interacts with tissue, again, it focuses the radiation. We're able to concentrate the radiation within the tumor and much more effectively reduce or limit the radiation exposure and the surrounding tissues.

And so, one area where proton therapy can offer significant benefit is in cases like her case with a skull-based Chondrosarcoma where these tumors tend to be relatively radio resistant in the sense that we tend to have to use much higher doses of radiation than we normally would but because of the anatomic location, there's a lot of critical structures in the vicinity including optic chiasm or nerves that are important for vision, cochlea for hearing, the brain and temporal lobe. And so, in such cases and particularly when we're going at high doses near those structures, proton therapy can more effectively concentrate those high doses in the target and spare those critical structures. Decreasing the risks of things like vision loss, hearing loss, and importantly, reducing significantly the dose to the brain which can help decrease the risk of neurocognitive effects so issues with memory, concentration, IQ. All of these things have a significant impact on quality of life.

Dr. Roy Jensen: Absolutely. Karen and Roma, thank you so much for joining us this morning. Roma, I want to start with you. Obviously, you were very young when you were diagnosed with your cancer and you were selected to undergo proton therapy. How are you doing today?

Roma: I'm doing great. Watching a lot of sports and playing outside a lot.

Dr. Roy Jensen: Awesome.

Roma:I can't really even remember when I was sick.

Dr. Roy Jensen: Did we get you out of school today for this interview?

Roma: No. We had school today.

Dr. Roy Jensen: Oh, okay. All right. Well, that's good. Could you take us back, Karen, to the day you found out about Roma's cancer and kind of what's your initial thoughts around all of that was?

Karen Larson: Well, Roma was three months shy of four years old when he was diagnosed with stage four neuroblastoma of the abdomen. It had spread quite literally head to toe. It was in his bone marrow, it was in his bones, he had hot spots all over on the tumor scan. We were given quite a discouraging, perhaps, diagnosis, prognosis. And so, we knew we had quite a battle ahead of us.

Dr. Roy Jensen: Mm-hmm (affirmative).

Karen Larson: Mm-hmm (affirmative).

Dr. Roy Jensen: Can you tell us about where Roma underwent proton therapy and a little bit about that experience?

Karen Larson: Yeah. Well, proton therapy was just one of five modalities that Roma went through. We started with chemotherapy, then he had an operation to... Chemotherapy to shrink the tumor, an operation to remove the tumor, a stem cell transplant to clear anything residual that might be left in his bones, and then we went to proton therapy, was the first modality, and we finished off with immunotherapy. So proton therapy was four of five modalities that we went through.

Dr. Roy Jensen:So-

Karen Larson:And I can easily say... Mm-hmm (affirmative). Go ahead.

Dr. Roy Jensen:Go ahead. No, go ahead.

Karen Larson:I can easily say that of those five, of course, it was a very challenging year for us. We were in the hospital for over a year but I can honestly say, of those five modalities, proton beam therapy was by far the easiest, the modality with the least side effects. We were able to completely live a normal life. We were home at night or at the Ronald McDonald house, I should say, but we weren't in the hospital overnight. Roma maintained great energy. His numbers were steady all through it. He never had a drop in any of his numbers that we were watching so closely through chemotherapy. He just did awesome. He was able to eat. And so, it was really just a... If you can have a wonderful experience in cancer, it was really a wonderful experience and I'm so happy that this is going to be available in the Kansas City area for other families as well.

Dr. Roy Jensen: That's great. Roma, how old are you now?Roma:11.

Dr. Roy Jensen: You're 11. It's hard for most people, I think, to imagine going through something like that. How would you describe your experience with proton therapy?

Roma: Well, you can't really feel it. I mean, I was only three, four, and I couldn't really feel it because of course, it's a whole different experience for an adult. Because for a kid, they put you on-

Karen Larson: Anesthesia.

Roma: Anesthesia to put you to sleep and I think that you don't really feel it in anesthesia, but that's a different story for an adult so it really does... You can't feel anything. So if you're a kid and you're about to go through it, I'm just telling you that it doesn't hurt at all.

Dr. Roy Jensen: I see. So Dr. Rotondo, could you tell us a little bit about how proton therapy impacts the quality of life for patients undergoing that modality and what do patients feel like after they have those types of treatments?

Dr. Ronny Rotondo: Sure. Proton therapy is an outpatient treatment so there generally is no hospitalization related to the treatment itself although some patients may be admitted if they're getting in-patient chemotherapy. Most patients don't feel anything, so you don't feel anything or necessarily see anything. What some of the patients have described in terms of it being the best part of their cancer therapy is a common thing we hear with proton therapy being very effective on the tumor but easier on the patient.

Depending on the location of the tumor, the benefits or impact on quality of life may be different. For instance, for a patient with a brain tumor it might be less hair loss, less fatigue, less nausea. For head and neck cancer patients, there's data showing that there's less pain associated with radiation for swallowing, less need for feeding tubes. For abdominal tumors or for instance, like Roma's, radiation significantly decreases exposure to the gastrointestinal systems so bowel and stomach and so forth. And so, that can significantly decrease, again, impact on nausea or bowel movements.

Overall, I would say that patients tolerate treatment quite well. Many of them are able to continue to go to school, continue to go to work, and live normal lives. And that in many instances, proton therapy, again, not only can improve quality of life with long term effects, but in many instances, also during treatment, patients seem to do better.

Dr. Roy Jensen: We know that for some of the folks in our audience, you're curious to see if you're eligible for proton therapy and we actually have a QR code on our screen right now that will connect you with our nurse navigator who can answer questions about our proton therapy unit and to make some determinations about if you might be eligible. We also have the phone numbers listed there as well if you're not able to successfully scan the code.

If you're joining us, we're here with Dr. Ronny Rotondo and Myrna Palmer, a nurse in cancer patient who has undergone proton therapy, along with Karen Larson and her son Roma who underwent proton therapy. We are discussing proton therapy as an exciting new tool to treat cancer. Remember to share this link with people you think might benefit from our discussion. Use the hashtag #BenchToBedside. So Dr. Rotondo, exactly when will the new proton center at KU be open?

Dr. Ronny Rotondo: The center will open on May 23rd and we expect to treat our first patient that week.

Dr. Roy Jensen: I see.

Dr. Ronny Rotondo: So we're very excited.

Dr. Roy Jensen: All right. Just a few weeks ago, we unveiled the new sign for the Proton Center and I suspect that was a pretty good feeling when that unveiling took place.

Dr. Ronny Rotondo: Definitely. Very exciting moment for myself, for a very large team, our department, the institution. So very excited, but also felt very hopeful. I think it was a sign of hope for a lot of patients in Kansas City and in the region who now have access to this cutting edge cancer treatment and are able to receive that, now here at home so, very hopeful.

Dr. Roy Jensen:What about the situation where someone has already had cancer and been treated with radiation? I know that lots of times that precludes them from getting additional radiation. Is proton therapy a potential exception to that general rule?

Dr. Ronny Rotondo: Right. Proton therapy may offer new opportunities for some patients who have received radiation previously and have a recurrence and may benefit from additional radiation. Again with proton therapy being able to focus that radiation more effectively within the tumor and limit exposure to surrounding critical organs and healthy tissue, it's an area where proton therapy may be able to effectively treat those cases while minimizing significant complication.

So one can imagine, for instance, a tumor that arose in proximity to the spine or the spinal cord and they've received prior radiation. With conventional radiation, it may not be feasible to re-treat because of already having received maximum dose of the spinal cord. Proton therapy may be able to overcome that hurdle. And so, it's certainly an area where there's a lot of research and very good consideration. So certainly, patients with recurrent cancer that would be good inquiry.

Dr. Roy Jensen: Mm-hmm (affirmative). Myrna, I know you had to travel to the Mayo Clinic.

Myrna Palmer: Mm-hmm (affirmative).

Dr. Roy Jensen: Karen and Roma, how about you? Where did you have to go?

Roma: Houston, Texas.

Dr. Roy Jensen: Houston, Texas. Okay. So hundreds of miles away for both of you. Myrna and Karen, could you both explain why you think it's so important to have this treatment close to home? Myrna, maybe we'll start with you.

Myrna Palmer: Okay. Well, I think that it offers so many. The availability of proton beam therapy and having it close to home, if you don't have relatives, I happened to have a sister who lived in Phoenix that I was able to stay with, and it was a wonderful, great time with her, but there's many that don't have those that they could go to. And it would take a hospital... I mean, a hotel room maybe? For that time. So to have it home, close to home, close to friends, is a wonderful thing and it's nice.

Dr. Roy Jensen: Yep. How about you, Karen and Roma, could you weigh in on that?

Karen Larson: Well in our case, Roma's not my only child. I have another son and in our case, we were, of course he couldn't go with us so I had to leave our other son with his grandmother, my mother, for the month that we were in proton beam therapy. So it's very... Cancer, in any situation, is hard on a family. And in our situation, it was triple hard because we were separated as well. We couldn't go home after his treatment, we couldn't... And it was, of course, difficult on our other son as well. So it's wonderful that it'll be available for families close to home so that they won't have to separate like we had to.

Dr. Roy Jensen: That's great. I want to get back to both of you in just a bit for your final thoughts. But Dr. Rotondo, before we get to them, could you tell us a little bit about our plans to incorporate proton therapy into our clinical research program and some of the studies that you have planned here at the KU Cancer Center for this device?

Dr. Ronny Rotondo: Yeah. As an NCI designated cancer center, in line with the rest of the cancer center, we have a very strong commitment with the proton therapy program to pursue cutting edge research. This will include a number of things. Perspective registry trial as part of participation in the PCG or the Proton Collaborative Group, which is a multi-institutional national consortium. And so, our goal is to register every patient that undergoes proton therapy on that prospective registry trial.

In addition, we will have clinical trials open with other national groups like the NRG or also collaborations with other institutions across the country for clinical trials which involve proton therapy, whether they're direct comparisons with photon therapy or trials that allow or include proton therapy. As part of our program, we've also included the capability to perform cellular and kind of small and large animal research. And so, we have the facilities and resources to be able to conduct those studies and those plans are actually currently underway.

Part of our research program will also include very active research program in the medical physics component of proton therapy including things like flash therapy. And so, we'll be collaborating with IBA to lead some studies in flash therapy as well. And so, very excited about our research program.

Dr. Roy Jensen: How do you see the role of proton therapy in clinical care evolving over the next 5 to 10 years or so?

Dr. Ronny Rotondo: I think proton therapy has evolved significantly over the last 5 to 10 years and more. And so, we started with passively scattered and then uniform scanning. Now we're at pencil beam scanning. It'll continue to evolve over time. At the moment, we have the most state of the art technology with pencil beam scanning, the most state of the art image guidance, and... But we expect that will continue to evolve. And so, we are very excited to have partnered with IBA, leader in research and development as the largest user group. We will continue to evolve our technology to remain at the forefront.

I think there will continue to be improvements in terms of image guidance, treatment delivery techniques, flash therapy, which is a term that people will increasingly hear of but it's a very exciting area of research where we may potentially be able to deliver entire courses of radiation in a single treatment or several treatments as opposed to many weeks. We're not quite there yet but I think there's some very exciting developments in the future for proton therapy.

Dr. Roy Jensen: We're approaching the end of today's episode and I have one more question for each of you. I'm going to start with you, Dr. Rotondo, why is a center like this so important to the metro region in a broad or catchment area?

Dr. Ronny Rotondo: Right. I think it was a lot of stakeholders that kind of benefit, the most important being the patients. And so, for years we've had to send patients hundreds of miles away for this treatment. There are many patients and families and children who were not able to benefit from this because of not being able to relocate. And so, this is incredibly important to the patients to be able to access the best treatment here. Of course, other benefits in terms for the institution and for research opportunities but also for the community. We've been able to attract an amazing team of people from across the country who've joined our city and our community and put us in a position to deliver world class proton radiation on day one. So, very exciting.

Dr. Roy Jensen: All right. Karen and Roma, you've already talked with this about the experience that your family had to go through for Roma to access this treatment. I'm wondering if you could maybe give us some advice or give someone advice who's been recently diagnosed and maybe overwhelmed about this whole situation and kind of questioning what to do next.

Karen Larson: My advice, and I think a doctor gave us this advice, was just to take everything day by day. As opposed to thinking we're going to conquer five modalities at one time, we're going to do this, then we're going to do this, then we're going to do this, just day by day, step by step. I think we're at a point right now in medicine where one should never be too discouraged because there's so many exciting developments happening.

I mean, I think the final thing to say about Roma and proton beam therapy is that he continues to grow at an average rate. He continues to... He's doing great in school. Most people would never have any idea at all, just by what he looks like today and his performance in school and he's active in sports, that he had gone through such a traumatic experience as a child.

I remember when we were initially consulted about radiation, typical radiation, not proton beam, they gave me a list of side effects that would happen after typical radiation. It was one of the most depressing conversations, I think, we'd had during his whole treatment. But the doctor said, at the time, if you can get proton beam therapy, that significantly lowers your risk of these side effects.

Now, of course they can't guarantee 100%, but it significantly lowers those risks. And so, for us that was a... We were lucky enough to travel for it, that was a no-brainer what to do. I guess in closing, I think Roma is a pretty good testament to how successful proton beam radiation can be as well as other medical development because he had a really tough diagnosis but he continues to thrive and has been in remission for six years now. So, very exciting.

Dr. Roy Jensen: Yeah. Well, it looks like the diagnosis was not just tough. Roma looked pretty tough too, it seemed like to me. So, good job there.

Roma: Thank you.

Karen Larson: He did.

Roma: Thank you.

Dr. Roy Jensen: Yeah. Myrna, you were doing a lot of nodding there so it sounded like that experience certainly resonated with you as well. Do you have anything to add to that?

Myrna Palmer: Yes. I just wanted to tell everyone that the experience for an adult is very, very comfortable actually. The most, I guess, the hardest part for me was to lay on a table still. But once you understand that this is a process and it was... I wanted just to let people know that it is a lot more comfortable than you could imagine. Just trust that the Lord has us in this journey and also, I would like to just encourage others that this is a new experience but they really should not worry about this because it it gives you so much more than the alternative, the proton. I mean, the photon. Sorry. And we have so much that is available for us with this.

And so, I would encourage others to look forward also for all the benefits that go with going through an experience with others and sharing with others. I think, in the waiting room, I was talking to other patients and just early on and later we were all helping each other just through this process and it was so interesting to hear how people were just very surprised at how comfortable the whole experience was and the wonderful benefits that we all got. I have a clear MRI and CT scan and someone would say it is inactive, but I claim no longer active. This is dead to me. And so, I go forward healed and it's because of proton beam therapy. I think-

Dr. Roy Jensen: Well, thanks so much.

Myrna Palmer: Yep.

Dr. Roy Jensen: Go ahead. Go ahead.

Myrna Palmer: And I'm fine, I just wanted to tell Dr. Rotondo, thank you so much for being the person that introduced me to this proton beam. It was not available in Kansas City at the time. Now, it can be available to so many and I would encourage those that have had an experience with this to share their story, to share the mask, and to show others that are going to go through this experience that there's nothing to fear.

Dr. Roy Jensen: That's some great closing remarks there. Thank you so much, Myrna, Karen, and Roma for being part of this week's episode of Bench to Bedside. To learn more about proton therapy, visit kucancercenter.org/healingprotons. That's it for today. Join us next week at 10:00 AM for Bench to Bedside. Thanks for watching.Subscribe to our Bench to Bedside podcast. Now, everywhere podcasts are available.