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Being diagnosed with cancer is a life-changing experience that comes with many emotions, questions, and decisions – but you’re not alone. Others are facing the same challenges, and they’re finding ways to talk about them online.
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Are you a current or recent ProCure patient? Sharing your experience with proton therapy and ProCure could help inform and inspire others.
If you’re looking into proton therapy for you or a loved one, it may be helpful to talk to someone who’s been through it firsthand.
To connect with a former ProCure patient, please give us a call at: 1-888-847-2640.
One morning, Amy and Brian Brennfoerder found their two-and-a-half year old son
Kaiden having a seizure in his bed. When neither they nor the paramedics could get
it to stop, little Kaiden was rushed to the hospital and immediately given medicine
for the seizure, and a CAT scan. “They saw something in his head that wasn’t
normal and told us that they needed to investigate more,” said Brian.
An MRI showed a tumor the size of a golf ball in Kaiden’s brain. Fortunately,
it was right on top, directly beneath the bone. “They decided, ‘Let’s
get in there and get it out,’” Brian said. “Whether malignant
or not, no one wanted it in there. Plus, it didn’t look like it was wrapped
around anything critical.”
At that point, surgery was the best option for removing Kaiden’s tumor, which
turned out to be malignant. “They said normally they would treat first with
radiation and then follow up with chemo,” Brian said.
“But they wanted to wait as long as they could. They know that radiation can
often stunt or ruin brain development in young kids, so they wanted to hold off
at least until he was three.”
After surgery, Kaiden underwent four months of chemotherapy. During that time, a
friend in Oklahoma City contacted Amy and Brian and asked if they’d heard
about proton therapy, encouraging them to look into it as an option.
“We were drawn in by the descriptions, testimonials, and information we found
on ProCure’s webpage,” said Brian. “So we asked our main oncologist
what she thought about proton therapy and if she knew anything about it. She told
us that she had worked with the people at ProCure before and that, in her opinion,
proton therapy was at least as good as standard radiation, and had huge benefits
of potentially reduced side effects.”
“At that point, we had already convinced ourselves that what we saw on ProCure’s
website made sense. We didn’t want to give up any of his cognitive abilities.
We needed to make sure that everything we were doing would cause as few problems
as possible later.”
Once Amy and Brian made their decision, their oncologist and the Children’s
Medical Center worked with ProCure to get Kaiden in. “We kind of expected
a depressing place,” Brian said. “Because you hear from people who went
through radiation that it’s harder than the chemotherapy. Some people come
out burned and depressed, emotionally and psychologically.”
But the ProCure Proton Therapy Center surprised him. “People were walking,
talking, and smiling. They have a big waiting room where families can sit and chat
while their loved ones are receiving treatment. It gave us a lot of hope for Kaiden’s
We went to listen to one of the graduates speak about how well it has gone for her,
how she hasn’t had a single side effect, and was able to continue working
all the way through the treatments. In our minds, this solidified our decision.
It seemed to us that people undergoing proton therapy not only had success stories
about the cancer not returning, but their lives had barely changed. That’s
exactly what we were looking for.”
While Kaiden was going through his six weeks of treatments, he, Amy, and Brian stayed
in Oklahoma City with the family who first told them about ProCure. “Every
morning Kaiden was excited to go to ProCure,” Brian said. “Even on the
weekends when we didn’t go there, he would ask, ‘Are we going to ProCure
today?’ It made us happy when he’d run in the door and greet the receptionist.”
”The team at ProCure took awesome care of Kaiden.
They also prepared us well. They told us that Kaiden’s hair would fall out
because the tumor was almost 100% at the surface, and they taught us how to treat
the bald spot with lotion. We knew that nausea and some other side effects could
happen, even though we didn’t see a lot of them. The anesthesiologist did
a good job too — Kaiden doesn’t handle masks well, but he didn’t
have the opportunity to get anxious and scared. They found a back door way to keep
him from feeling like he was undergoing a scary treatment.”
“Looking back, it was just so easy. He was sleeping well and eating well.
He never lost his appetite.”
Now Kaiden is in remission and continues to act like a three-year-old: he rides
his bike, plays with toy cars, and generally makes mischief. “As far as we
know,” said Brian, “he’s going to be able to put this entire thing
behind him and be a normal kid.”
During his annual physical one summer, Derek Rose told his primary care physician
he’d been having trouble urinating. After a few PSA tests showed elevated
levels, he was referred to a urologist. “The urologist said that I was young
and healthy, and it was probably nothing, but that they just needed to check it
out,” said Derek. But when six out of the twelve samples from his biopsy came
out positive, he was diagnosed with prostate cancer.
“The urologist started talking to me about surgery and radiation therapy,”
he said. “And while I was doing my own research, my sister-in-law, who lives
out in California, told me about proton therapy. She’s in the medical industry
and said ‘you really need to take a look at this.’”
When Derek mentioned proton therapy to his urologist, he said that there wasn’t
a lot of research to support it and that it wasn’t something he could really
So Derek took a trip out to California to consult with a well-known urologist in
San Francisco. “He gave me the same treatment options as other doctors I’d
spoken with,” said Derek, “but was positive about proton therapy.”
“All the information I had read online about proton therapy had been positive,
but none of the doctors were actually recommending it,” Derek said. “So
when I found out that he was for protons, I was like, ‘well, there you go.’”
“So, I called ProCure in Oklahoma City, and told them I was curious about
proton therapy. The representative told me what information they needed from me
and to expect a ProCure information package,” said Derek. “After I sent
out the information they requested, ProCure talked to my insurance company.
They received pre-approval very quickly. From this point on, it seemed like the
process was smooth and seamless. Every time I had a question, ProCure was there
to answer it. That really made a difference.”
“People were extremely nice. I mean out-of-their-way nice. And during my first
pre-treatment visit they made it very easy to find a place to stay that had a great
price. They have an affiliation with a number of hotels in the area. I ended up
staying at a Holiday Inn Express for a couple of days. The initial consultation
and procedures were quick and easy. About a week after that first visit, ProCure
was ready for me to begin treatment.”
So Derek packed up his car and headed back to Oklahoma. During treatment, he continued
to do his real estate work. “I work for myself,” said Derek, “so
my job allowed me to do many things remotely. But my decision to relocate during
that time was based on the treatment.
When you have cancer, you’re willing to do pretty much anything to get rid
of it. And when you have a solution like proton therapy that allows you to maintain
your quality of life, well, it was just a pretty easy decision for me to relocate
myself for nine weeks.”
“The treatment was very effective. My PSA has dropped from 10 to 1.8, and
I have had virtually no side effects,” said Derek.
During his treatment Derek wasn’t all work and no play, though. He attended
luncheons, played golf, and supported other patients who were finishing treatment
at their ProCure patient graduations. And he managed to make a few great friends
along the way.
Retired golf professional Larry Fryer was diagnosed with stage II prostate cancer
during an annual check-up with his primary care physician. When he was told about
his treatment options, the side effects that came with them seemed less than ideal.
So Larry got a second opinion. And a third.
The third oncologist told him about proton therapy. Even then, Larry continued to
do his research. “When I asked different prostate patients about their treatment
choice, there was never any hesitation from proton therapy patients,” said
Larry. “They all told me they would do it again.”
Initially, Larry and his oncologist discussed treatment at Loma Linda University
Medical Center, the first hospital-based proton therapy facility in the nation.
But through another oncologist, they learned that ProCure’s Oklahoma City
facility — just minutes from Larry’s home — was almost finished
“I knew the Oklahoma facility was opening but I didn’t think it would
be in time for my treatment,” said Larry. “After I found out it would
be open in August I bugged them until they let me in.”
Larry received 44 treatments over nine weeks. “From the time I walked in the
door for my treatment to the time I left, only 35 to 45 minutes had passed,”
he said. “The actual treatment took less than two minutes. There is no pain,
no invasive procedures. It’s just a wonderful deal. Physically, I felt the
same as I did going into it.”
During his treatment, Larry participated in weekly luncheons at the facility and
continued to play golf on the side. “I played golf the entire time I was going
through treatment. I didn’t slow down one bit,” he said.
Now that he is done with his treatments, Larry spends much of his time fishing,
hanging out at the country club and, of course, swinging those golf clubs any chance
he gets. He joked, “I’ve continued golfing since proton therapy, but
it hasn’t helped my game.” While his game may not have improved, Larry’s
health remains on par. “I haven’t had any pain or symptoms since this
started,” he said. “It’s just a wonderful treatment. I would recommend
it to anyone who has prostate cancer.”
Helping others communicate in a crisis is what Richard is trained to do. An electronic communications technician, Richard provides the technical infrastructure needed for cleaning up oil spills. But when Richard was diagnosed with prostate cancer in 2012, he turned to others for advice on his own health crisis.
"It all started in 2010 when my company started to offer men a free annual PSA screening," he said. "At the first screening, my PSA was at a 1.8, which wasn't alarming. However over the course of 24 months, we discovered that it jumped to 10.7 and that I would need to do a biopsy."
A few weeks after the biopsy, Richard's doctor confirmed that Richard had prostate cancer and should begin considering treatment options. Richard's doctor, a surgeon, recommended robotic surgery to treat the cancer.
The doctor also offered to arrange for a second opinion with another physician to learn more about conventional IMRT (intensity-modulated radiation therapy) and brachytherapy, which involves the placement of radioactive cancer-killing seeds in the prostate.
Since Richard's cancer had not spread beyond his prostate, time was on his side. He used this to his advantage to research all possible options and any side effects associated with the different treatment modalities.
"I told the doctor 'I'll get back to you' and then left to do my own research," he said. "Knowing I had time to investigate my options, I joined a prostate cancer support group and began talking to men about the treatment they had and any side effects they were experiencing."
Being active and outdoors was an important aspect of Richard's lifestyle. Also, he was concerned about the risk of dealing with incontinence as side effects from treatment. "I knew there had to be a better solution out there that would work with my lifestyle, not against it," he says.
After reaching out to a former coworker who battled prostate cancer, Richard learned for the first time about proton therapy. He was inspired to research this form of treatment further and began reading books about protons. Richard reached out to additional survivors, and planned a trip to visit a proton therapy center.
"One of the articles I read during my research mentioned there was a center opening soon in Seattle, and for me that's when I knew my decision was made. I chose proton therapy."
The SCCA Proton Therapy, A ProCure Center, opened in the spring of 2013, and Richard began his treatment at the new center. Given the center's convenient location, he was able to maintain a sense of normalcy during his outpatient treatment, living in his home and continuing to work five days a week. Richard experienced virtually no side effects during treatment. He even decided to surprise everyone at his last treatment by riding his bike more than 20 miles to the treatment center from North Everett where he lives.
"Life is a journey and how we choose to live our lives will determine our future," he said. "As I ended this part of my journey with cancer, I knew I was moving forward to bigger and better things."
Despite being a reserved person by nature, Richard is passionate about sharing his journey with others. He believes that most men do not want to talk about the health challenges they face, and too often just go along with whatever first advice they receive from their doctor.
"I truly believe that doctors are extremely smart and have the best of intentions, but it's important to be an active participant in your own care," he said. "Question what you're being told, get a second opinion, and make sure you're comfortable with the treatment plan being created. It's your health, it's your life, and it's your choice."
One of the things Richard appreciated most about the care he received at SCCA Proton Therapy was the sense of community and experience-sharing the staff created. From dinner meet-ups outside of the hospital campus to afternoon chats while he waited in the lobby before his therapy session began, Richard found immense value in talking to men going through the same ordeal. It was comforting to know that he was not alone.
"I still find myself returning to the center from time to time to talk with others," he says. "While my treatment has ended, the survivor community that I am now a part of is just beginning."
Elementary school physical education teacher Tammeria Fade had been suffering from
extreme migraines for years before doctors found the cause. “I had gone to
an allergist, but it wasn’t getting any better. And then the allergist sent
me to an ear, throat, and nose guy who told me that he couldn’t find anything.
And, basically, this has been my joke: ‘It’s all in my head.’
And it really was,” laughed Tammeria.
While Tammeria can laugh about it now, the real reason for her pain was that she’d
had a tumor in her brain for many years. Though she’d never previously known
of its existence, the symptoms were suddenly impossible to ignore. Tammeria began
getting MRIs twice a year to monitor the growth of the tumor.
“I had been suffering from the tumor for about five to six years, and for
the first few years it was growing really slow, but this past year it just got severely
worse,” she said.
“It’s around my auditory nerve and my motor skills nerve, and the nerve
I use to speak and chew and swallow. My symptoms were really bad. I was slurring,
I was dragging my foot, and I couldn’t hold on to anything. The ringing in
my ear was unbearable, and I was drooling too. I would be fine one week then be
in pain the next.”
Tammeria sought the advice of her physician, though his recommendation was not something
that she was at all prepared to hear.
“My doctor told me that if I have surgery, I will to lose the ability to speak
and chew. My mom was sitting in the room with me and we both just went white,”
said Tammeria. “I’m only 40-some-odd years old, and I don’t want
to live like that. I have my students at school, my own children, and grandchildren
someday. I have to talk, I have to be able to converse with my kiddos and do the
things I need to do. I have got to find something else.”
At the time, ProCure was building a proton therapy center in Oklahoma City. It was
Tammeria’s daughter who first mentioned it to her, and then many of Tammeria’s
friends encouraged her to look into the center as well.
“In October when I went and had my MRI with my doctor, I asked if he could
get me an appointment with ProCure because I didn’t want to do surgery. So
he sent me to ProCure, where the radiation oncologist performed another MRI and
said that I was a candidate.”
Tammeria went through several weeks of proton therapy at ProCure without missing
a single day of school. Not an easy schedule to manage, but according to her, she
wouldn’t have had it any other way.
“Living with a condition like this, I realized early on that I couldn’t
just curl up and feel sorry for myself, I couldn’t have an attitude that the
tumor was going to eat me up. I have a determination and drive to live and I refuse
to be defeated by a tumor.”
Tammeria credits her ability to sustain a positive attitude and a belief in her
recovery to the staff at her ProCure facility. “The people at ProCure were
awesome. They were so caring and giving and made me feel at ease.”
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