Lymphoma patient Jonathan chose proton therapy so he could have more time with his family

Lymphoma patient says proton therapy gave him chance at long, healthy future

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“We’re not promised tomorrow, but I didn’t want to make the conscious decision to take away tomorrow.”

– Jonathan L. on choosing proton therapy over traditional radiation

When Jonathan was just 32 years old, doctors discovered a large mass surrounding his heart. Being an otherwise healthy young adult, a diagnosis of Non-Hodgkin lymphoma definitely came as a surprise. Thankfully though, his prognosis was good. He had confidence in his treatment plan, a combination of chemotherapy and radiation. As he progressed through treatment, things were going off without a hitch, until one day – a curveball.

“I went in for my consultation for the radiation,” Jonathan remembers. “The doctor told me if I went through traditional radiation, it would likely kill my heart in 10 years.”

That’s when he learned about an advanced form of radiation therapy called proton therapy. His doctor explained why it would be a much better treatment option for him. Considering how close the tumor was to his heart and lungs, proton therapy was the only radiation treatment that could destroy the cancer cells without damaging those vital organs.

With a wife and two young children, Jonathan knew he couldn’t put his own future at risk, so he chose proton therapy. Now, he credits the team at Provision CARES Proton Therapy for giving him a shot at a long, healthy life. He says because of proton therapy, he’ll now have the opportunity to grow old with his wife, see his children get married, and maybe even meet his grandchildren someday. Because of proton therapy, he’ll now have the chance to do all the things young fathers dream about.

SOME CONFUSING SYMPTOMS

Jonathan says he first noticed some strange symptoms just as he was preparing to graduate from college. He woke up one night with a numbness in his arm and pain in his chest. It felt like he was having a heart attack, but with a big school presentation coming up the next morning, he just chalked it up to nerves.

Graduating from collegeOver the next couple weeks, the same symptoms kept coming and going, but never built up to a point where Jonathan felt like he needed to do anything about it. Until one day at work, he realized he might not be able to ignore them any longer.

“I was sitting there at my desk, not doing anything strenuous, and my heart was literally beating to where I could see it thumping through my shirt.”

It was at that point, Jonathan turned to God, asking for some sort of sign to make it clear whether or not he should seek medical attention.

“That night when I got home, we were at the table and my wife was telling me a story about a colleague of hers whose husband randomly started having chest pains, heart problems, etc., and they had to go to the emergency room,” he says.

Jonathan knew right away this was God’s sign, so he and his wife headed to the hospital. As it turned out, his symptoms even confused the doctors at first. After running tests on his heart, nothing seemed out of the ordinary. So, they ran a few more tests, including a CT scan, which finally caught something concerning.

“I’ll never forget what the doctor said when she came in,” Jonathan recalls. “She said, ‘The CT scan shows that there is a significant mass in your chest. We don’t know what it is, but we know it’s not supposed to be there.’”

THE WAITING GAME

Jonathan’s doctors discovered a large tumor behind his sternum. It was six inches by three inches (roughly the size of a 12-ounce soda can) and was actually wrapping itself around Jonathan’s heart.

“That was where all of the symptoms were coming from that it felt like a heart attack,” he explains. “It was increasing my heart rate because it was actually putting pressure on one of the chambers of the heart, which was making the heart start to work extra.”

PET scan of lymphoma mass surrounding the patient's heartRight away, the doctors suspected a type of cancer called lymphoma, but confirming those suspicions would take much more extensive testing. And even if they did confirm it was lymphoma, more tests would be needed to determine the specific type.

Lymphoma is a disease in which cancer cells form in the lymph system, which includes your lymph nodes, spleen, bone marrow, and tonsils. There are two main categories of lymphoma: Hodgkin and Non-Hodgkin. Doctors can differentiate between the two by detecting the presence (or lack thereof) of a specific type of abnormal cell. Both Hodgkin and Non-Hodgkin lymphoma have their own subtypes, and that subtype plays a major role in a patient’s prognosis and treatment plan.

In order to determine Jonathan’s diagnosis, doctors performed a chest biopsy, which came back inconclusive. Next, he underwent a surgical biopsy, but that sample had to be sent to California for testing, delaying the results even further.

“The most stressful part of the whole process was simply the waiting game,” says Jonathan. “From the day I went to the E.R. to the day that we actually knew that I had Non-Hodgkin lymphoma B-type was almost a month.”

THE FIRST PHASE OF TREATMENT

With a diagnosis in hand, doctors began to lay out their treatment plan. As they explained to Jonathan, his specific lymphoma wasn’t the easiest form to treat, but it wasn’t the hardest either. And at his age, there was a fairly high rate of success.

“They gave me pretty good confidence that we’ve got a plan, we know how to work on this, and we’ll check it along the way.”

Lymphoma patient during chemotherapyThat plan included six rounds of chemotherapy over a total of 18 weeks to shrink the tumor down as much as possible. Once chemo was finished, he would move on to radiation therapy to destroy any lingering cancer cells.

Jonathan described his time on chemo as a roller coaster, with side effects ranging from extreme fatigue to what he calls “metal mouth.”

“What I found was the first week (after each round of treatment) was going to be a rough week. I kind of got almost in a zombie mode. I felt lethargic. I didn’t feel like doing anything.”

He says the second and third weeks after each round weren’t nearly as bad, but it was difficult knowing he would have to go through the ups and downs over and over for more than four months.

A WRENCH IN THE PLAN

Following a long 18 weeks of chemo, Jonathan was inching closer to the finish line and feeling good about his next phase of treatment, radiation therapy.

“The information I had at the time was that radiation was a cake walk compared to chemo,” he remembers. “My understanding was that I would be doing traditional radiation right here in town. I would just be able to drive in, get my radiation, then come on to work and life would be good.”

“The doctor told me if I went through traditional radiation, it would likely kill my heart in 10 years.”

However, at his radiation therapy consultation, the doctor informed Jonathan that he could not, in good faith, recommend traditional x-ray radiation because the tumor was so close to his heart.

“There was no way for them to hit all the area of the mass they needed to hit without hitting chambers of my heart and my lung.”

He vividly remembers the doctor saying traditional radiation would likely kill his heart in just 10 years.

“At the time, my kids are 10 years old and I’m still a young guy. I want to see my kids graduate. I want to see my kids get married, see my grandkids, and stuff like that. We’re not promised tomorrow, but I didn’t want to make the conscious decision to take away tomorrow.”

A BETTER OPTION

Thankfully, Jonathan’s doctor recommended an alternative option, an advanced form of radiation treatment for cancer known as proton therapy.

Proton therapy uses protons, rather than photons, and allows doctors to precisely target a tumor, avoiding unnecessary radiation to nearby healthy tissue and organs. This lowers the risk of damage to healthy cells. It also reduces the risk of short-term and long-term side effects related to treatment.

Behind the scenes tour of proton therapy centerIn Jonathan’s case, traditional x-ray radiation would’ve gone straight through his chest, exposing everything in its path to radiation from the time the beam entered the body to the time it exited. On the other hand, choosing proton therapy meant doctors could destroy the cancer cells in his chest with pinpoint accuracy, focusing most of the radiation directly on the tumor and stopping it before it reached his heart.

“I was like, ‘Wow, that sounds like a lot better option. So, let’s do protons!’” Jonathan says. “So that was how we began our journey to proton treatment at Provision.”

Many of Provision’s patients call for the first time not knowing much about proton therapy, and our Cancer Care Experts take the time to speak with them about their specific diagnosis and help them determine how proton therapy can help. Having been referred by another physician, Jonathan was already well aware of the benefits of proton therapy and proceeded to schedule his consultation.

In February 2019, he made his first trip to Provision CARES Proton Therapy Knoxville for his appointment with Dr. Allen Meek, a board-certified radiation oncologist. Right away, he knew he’d made a great decision.

“You’re already anxious about your prognosis. You’re anxious about what’s going to happen. So, anything that is able to help remove some of that anxiety is definitely a plus. Our first trip down there, we get there and the facility was magnificent. The campus is landscaped wonderfully and the main lobby waiting room was super inviting.”

From that point on, through 25 proton therapy treatments over five weeks, Jonathan was amazed by the ease of treatment. He says he only experienced one small side effect, some shortness of breath a couple months after treatment. It was a trade-off he happily accepted considering the alternative had he attempted traditional x-ray radiation.

Running a 5K a week after completing proton therapy“Aside from that, I didn’t feel any side effects at all through the whole treatment,” Jonathan says. In fact, a week after he finished proton therapy, he ran a 5k race with his daughter. “I didn’t have chest pains. I didn’t have any pains at all. It was like I was back to my old self.

In addition to how good he felt physically throughout treatment, Jonathan says the love and care he felt from the Provision team made him feel just as good mentally.

“From the moment you walk in the door, I definitely felt like they cared about me as a patient. They remembered your name. They remembered your wife’s name. They remembered whether or not you had kids. Those type of things help you realize they actually do care.”

NEW OUTLOOK ON LIFE

After 18 weeks of chemotherapy and 5 weeks of proton therapy, Jonathan finished his cancer treatment on April 15, 2019. It was a fitting date for him and his family, considering both of his children were born in April, and the 15th also happens to be his wedding anniversary!

Friends and family gathered at the Knoxville proton center to watch Jonathan ring the victory bell and celebrate the end of a long, emotional journey.

“I’m not much of an emotional guy, but whenever you see your family out there, having supported you through the entire process, it got a little emotional.”

Jonathan says his cancer journey has changed the way he looks at cancer and allowed him to make a deeper connection with other people who are fighting their own cancer battles.

Lymphoma patient graduates from Provision CARES Proton Therapy“It definitely changed my outlook on things,” he says. “What this whole journey has done for me is really open my eyes to be empathetic with people going through similar situations.”

From the day he was diagnosed, Jonathan started a blog where he could keep a journal to update his friends and family on his progress. He was surprised, though, to find out complete strangers were reading the blog and expressing their sympathy and support.

Now, he hopes that blog can be a source of support and hope for other lymphoma patients who are researching their own diagnosis.

“It’s kind of like a pay-it-forward thing. I feel like I’m able to connect with them on a deeper level, to be able to help encourage them, support them, and pray for them.”

Jonathan says his own experience taught him a few valuable lessons from which he hopes others can learn.

“The number one thing is to just trust God and know that he is in control.”

He also encourages patients to embrace their support system. “Don’t go at it alone. If you are going through cancer, the more people you have praying for you, talking to you, and just encouraging you, the better off you are.”

Lastly, he wants to make sure cancer patients understand the importance of doing their research. That means learning everything you can about your diagnosis, asking the doctors lots of questions, and making sure you know all of the different treatment options available.

“Because I had never heard of protons and luckily God put me with a doctor who had,” Jonathan says. “He knew that traditional treatment was not going to be smart for me, and he told me to pursue the protons. So that’s what I did, and it’s turned out fantastic.”

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As part of the Provision CARES Cancer Network, Provision CARES Proton Therapy has locations in Knoxville and Nashville, Tenn. Whether you learned about proton therapy from your physician or are researching your own treatment options, we encourage you to call 1-833-6-PROTON. One of our Cancer Care Experts can speak to you about your specific diagnosis and help determine if proton therapy is right for you.