"My life was saved thanks to a news story on Mako"
Translation of the the original article that appeared in Mako health magazine on 9/1/2016
"This treatment gave me back the smile I thought I had lost forever"
Keren suffered from a benign tumor in her brain that had taken away her ability to move half of her face to such a degree that she couldn't even smile.
"People think that only cancerous tumors are dangerous, they can't comprehend the fact it's entirely possible for a benign tumor to kill as well. The fact I don't have a cancerous tumor doesn't mean I'm safe; true, it hasn't spread in my body but it still could have destroyed my facial nerves," she says.
"The only treatment that was available to me in Israel was to have the tumor surgically removed, which would have left one half of my face paralyzed and caused me to be disabled for life. I weighed all my options prior to the surgery, I've seen dozens of experts and they all said the same thing. Not a single one of them offered me a unique treatment".
"Then, one day, I was browsing the web as usual and I came across a news story about proton therapy. I contacted Bar Sitton immediately who then connected me to Professor Hug, and within a single month I began treatment at ProCure's medical facility in New Jersey, US."
Keren's story is an optimistic one but it could have easily ended differently. Keren, 46, has a very rare kind of tumor, and most expert physicians who have seen her weren't able to provide her with enough information.
Keren has looked far and wide for the treatment that would have best suited her. Refusing to accept the experts' opinions, she has looked up medical studies and research, testimonies and experiences of other patients with a similar condition, and has even found a physician in the US who's an expert on the exact type of tumor that she had – Facial nerve schwannoma.
Bar calls this "being a Smart Patient." Patients who use modern day's infinite access to information in order to find the best solutions and treatments for themselves. "Israelis are very progressive, technologically savvy and unafraid to be pioneers, and they care about their health. Today, in the age of the internet, we can and we must do our own research and educate ourselves on our conditions and any possible treatments available to us – Just like Keren did." says Bar. "It's important to be stubborn when it comes to finding the treatment that suits your needs. At the end of the day, the patient is the one who needs to live with the results of the treatment, which is why you must take responsibility for your own health and do your research until you find your ideal treatment," Bar explains.
Keren was offered a surgery that would have significantly reduced her quality of life, she has chosen to doubt this solution that was offered to her by expert physicians and that's how she found proton therapy; that right there is the essence of being a Smart Patient.
When Keren initially contacted Bar, he was vacationing in Puerto Rico. "I was talking to Bar, I knew he was a cancer patient and that he was about to undergo treatment himself soon, and there he was, having the time of his life in Puerto Rico. I was stunned; that was exactly who I wanted to be," says Keren. "The most difficult thing I had to deal with was the possibility people would know I was ill and pity me for it. I realized I had to live my life to the fullest and have fun between treatment sessions. I've undergone 30 sessions in 63 days, and in between I spent time with my loved ones and tried to have as much fun as possible."
Prof. Hug tells us about the nature of Keren's tumor and the efficiency of proton beam in her case.
"After Keren and Bar made contact, it began with acquiring the medical information needed and perusing it. I believe it is crucial to respond to patients as soon as possible because people pin a lot of hopes on this."
"I looked at her file and saw that she had a tumor at the base of her skull, between her face and her brain, a very delicate area. Due to the sensitivity of the tumor's location, it was important that she would undergo the most effective and least damaging radiation therapy available. In her case, proton therapy was the ideal solution."
"It would have been possible to surgically remove the tumor, the question is what the consequences would have been for the patient," says Prof. Hug. "20-30 years ago, patients would have been grateful to survive cancer at all regardless of side effects or end results, they would have been grateful to simply be alive. But today medicine has evolved; patients want to live, but they want to live well and be able to progress and move on with their lives. We aim not to simply rid the patient of the disease but to restore the patient's physical condition as it was prior to the disease if possible."
Keren is a young, energetic woman who has a successful career as a real-estate agent and three talented children; she had chosen not to accept the treatment offered to her by her doctors, even though there are cases in which surgeries are the best possible solution.
"Every expert had recommended surgery to the point where I thought I had no other choice, and yet I stalled making my decisioneven though I had already talked about this with Shlomi, my husband, in case I would have decided to undergo this surgery," Keren tells us. "This surgery would have ruined my face, my life would have been over. I would have had difficulties with speech, I would have been deaf in my right ear, I would have had problems blinking and closing my right eye, my entire face would have become deformed. It would have caused partial paralysis in my face because they intended to cut the nerve. Best case scenario, I would have regained some functionality after four years."
Fortunately for Keren, the treatment seems to yield positive results so far. "The nervous functionality has improved significantly and continues to improve as time goes by. More important is the fact we could provide a treatment that wouldn't cause more damage than the tumor has caused," says Prof. Hug. "I'm very glad that the functionality has recovered, we can never tell whether certain functionality can recover after treatment or the damage is irreversible."
"I can smile, I couldn't smile before," Keren adds enthusiastically. "I couldn't smile for a year because of the tumor. I mean, I could only smile on one side of my face and it was very clear that something was wrong with me. But there was immediate improvement after only ten sessions. There's still more progress and improvement to come, but I don't feel as stiff as I did before my proton therapy sessions."
On Sunday (July 17, 2016), Prof. Hug arrived in Israel. Perhaps there's a reason to hope that more patients will have access to this unique treatment.
"What is very important to me is to provide proton therapy to patients who will truly benefit from it. I get many requests from patients who have looked the treatment up online," explains Prof. Hug. "Some patients have very good treatments available in their own countries so I wouldn't advise them to see me. My responsibility is to accept the patients who I truly think will benefit from this treatment and to collaborate with the local doctors to find the best solution."
Since the previous news story published in October 2015, Bar has connected potential patients from Israel with Prof. Hug and ProCure’s medical facility. Thanks Bar’s personal experience with ProCure’s procedure that had saved his life, Bar acts as a reliable source of information for Israeli patients who are interested in second opinion and proton beam therapy.
Thanks to Prof. Hug's visit in Israel and Bar Sitton's relations, a seven year old boy with a brain tumor had been flown to America to receive urgent treatment at ProCure's medical facility.
So who would benefit from this treatment?
"Proton therapy is mostly meant as treatment for the early stages of the disease. This is not a treatment for terminal cases, it is a lot more effective early on," explains Prof. Hug. "This type of therapy is best suited for patients with difficulty located or complex tumors who are, as a result, more vulnerable to damage from standard radiation. Age is also an important factor to consider. Children are especially vulnerable to radiation and may suffer significant, long-term damage when exposed to standard radiation while they are still developing."
Proton therapy currently treats a range of solid-tumor cancer types, and is indicated for some cases over others, however there are ongoing clinical studies examining the use of proton therapy for other cancer types.
More frequently, we are seeing that proton therapy is considered the "standard of care" or ideal radiation treatment for many children suffering from solid-tumor cancers. Established indications are tumors of the skull base and next to the spinal cord. However, they are also increasingly used to treat selectively patients in whom the tumor has recurred after conventional radiation treatment.
Proton therapy in Israel
Many Israeli patients might be hesitant to pursue proton therapy due to their lack of knowledge about the treatments accessibility, however, the possibility of undergoing this treatment is far from impossible - It is more accessible than ever and worth every effort!
ProCure's medical facility in New Jersey, US, cooperates extensively with Israeli insurance companies and HMOs, and Prof. Hug maintains constant communication with doctors in Israel which allows for consistent treatment, and ease of process for the patient and their family. The Proton Center provides excellent conditions for patients and their families, even offering Hebrew-speaking interpreters for those who need them.
"Many countries currently have proton therapy center projects, including several countries in Europe and in a growing number of states in the United States. Many medical professionals are in agreement that proton therapy is not the universal solution, but has many clinical benefits in selected patients. One of the issues is that it is currently more expensive. Israel is currently doing what other countries have done in the past – showing interest in the treatment and offering patients the option to undergo treatment abroad. Right now my main focus is to raise awareness among both physicians and patients. Some Israeli physicians are aware of proton therapy and offer it to their patients, but not all of them are, so not all of them do," says Prof. Hug.
"We're willing to look over every case that comes to us, and once we have reviewed the necessary information we can say whether the treatment will make a difference for the patient or not," explains Prof. Hug.
Indeed, even during the interview, Prof. Hug had received documents and CDs from cancer patients who are interested in proton therapy. Occasionally, during breaks in between questions, the dedicated professor had taken the time to look over the data sent from potential patients to see if he could help them.
Bar Sitton, who has maintained close relations with ProCure for the past two years, explains the significance of this matter. "People don't know enough about proton therapy, There's still not enough awareness of this in Israel," says Bar. "What we can do is tell and retell our stories and hope that this way there will be more patients like Keren who will learn from our experiences and find their ideal treatment."
Although Keren was apprehensive about exposure during the interview, one thing was clear – She must persevere and raise awareness of proton therapy, with the help and support of her husband Shlomi and their children.
"What I cared about most of all during my sessions was to keep functioning, and to not be sick. To not feel sick. I didn't let my disease dictate my life, I managed my disease and dictated my life myself. I kept on living, taking care of my kids, working, going to restaurants – I have decided to dedicate the time I spent in proton therapy to healing rather than sickness, and very few people in my circle of friends and family even knew I had a tumor," she says.
"Even when it became obvious to see the tumor's effect on my face, I didn't want to openly say that I was sick, but I promised myself, Bar, and Prof. Hug to reveal myself and my experiences so more people will be aware of this treatment. The price of exposure might make me nervous, but it's necessary for the sake of other patients."
What is proton therapy?
Proton therapy is a type of radiation that uses a beam of protons to irradiate diseased tissue, most often in the treatment of cancer. This procedure had been studied and developed for decades and has been proven to be effective for treating various types of cancerous tumors.
Like standard radiation, proton beam radiation destroys cancer cells by preventing them from dividing and growing.
Unlike standard radiation therapy, protons deposit much of their energy to the tumor site and then stop there – avoiding an "exit dose" and reducing damage to healthy surrounding tissue. Thanks to the protons' precision, doctors can target cancerous tumors in difficult or complex locations.