This is dedicated to our angels; every name mentioned here has being an angel for us on the difficult journey of fighting for a cure, fighting for life. Thanks, angels.
It all started at the end of 2012. My husband, Isi, was 52. He fell down during a “musical chair” game at a party. A woman fell over him trying to catch a chair. From that moment the lower back pain started. My husband was a very dynamic and athletic person; he had a gardening company and worked physically as well. It was strange that the pain did not disappear after some days.
During the next months as the pain increased, we consulted an unlimited number of physicians from many specialties. All attributed the pain to the trauma. We even went to a senior orthopedist who asked for a CT scan, whose images came in three disks. After looking at the second disk, his diagnosis for Isi was a lumbar herniation. The orthopedist did not look at the third disk, and the time passed.
Our small daughter was already five years old; her father lived in great pain and was not able to lift her in his arms.
I remember as if it was today: On a Friday morning, we called our physician and good friend, Dr. Haim Stroh, who knew Isi from childhood. Dr. Stroh said it didn’t make sense that such an athletic young man was in pain for so long, and asked for the most simple thing that no one had asked for before – an X-ray of the back.
Dr. Stroh has been with us during all this journey, taking care of medical details, helping, caring, supporting.
Dr. Stroh was worried about the X-ray results, and he asked to do a bone density test, which showed osteopenia, not common for a healthy young man. That led to performing a CT scan, on which a mass was already visible. Then, it all started: looking for a specialist, an MRI, a biopsy. Thanks to my sister Jenny and Dr. Michal Guindy who engaged on this project and helped, we got access to the best physician in the area: Professor Kollender.
Chordoma is a very uncommon illness; in Israel (where we live), there are very few cases a year. However, already on the MRI the radiologist suspected sacral chordoma. Dr. Friedman, one of the best radiologists in Israel (thanks Michal for contacting him), deciphered the MRI. Until the biopsy results another theory was explored, a myeloma (blood cancer). However, Dr. Erdan, a very special hematologist who sadly passed away later, ruled out myeloma. A blood condition called MGUS was discovered, which we’ve followed up on since then on a yearly basis with a hematologist. But that did not explain the tumor.
Later, the biopsy report confirmed the diagnosis: advanced chordoma of the sacrum. Then the race began: exploring, looking for expertise, learning, reaching for help all over the world. Our main physician, Professor Kollender, suggested a surgery combined with radiation — surgery that could leave Isi with serious handicaps or even the loss of his ability to walk.
I myself became a “lion” and sent letters and emails to all the experts in the world, including Professor Varga in Hungary, Dr. Friedlander and Rav Firer in Israel, and many others. It was the common opinion to perform en bloc resection of the tumor, a complicated surgery with lots of risks and many functional handicaps. On December 31, 2013, after a second opinion from an expert in Tel Hashomer hospital, my husband said he did not want to undergo surgery — he preferred to die and not be “half a man.” He smoked in the car with the windows closed; I was not able even to say a word.
Two hours later my sister Jenny called me and said, “You have to meet Professor Boriani from Italy. He is an expert who performs surgery in Israel. Go find him.” With very little information I tried to get Professor Boriani’s phone number. I called all the Boriani’s I could find on the internet until finally I reached his wife in Italy. It was not easy to convince her, but finally she gave me his number. I called him and he said he wouldn’t have time to meet me, since he was leaving for the airport in a few hours. I begged him to wait. He did, and the miracle started.
I drove like crazy to his hotel, and since I am very organized, I had all the images and exam results on my laptop. Professor Boriani carefully reviewed the images and though he is a surgeon, he said, “If it was me I would do carbon ion therapy, which can stop the growth and shrink the tumor.” He explained that the therapy was relatively new and only available in a few places in the world, with the most experienced center in Japan, but he recommended Heidelberg Ion Beam Therapy Center (HIT) in Germany, as it would be more accessible for us. He gave me the details and he flew home. This was the evening of December 31, 2013. And the race started, trying to reach the carbon-ion centers, sending the information they requested, mailing images, getting acceptance for the therapy, getting approvals from our physicians in Israel, and of course – from the insurance. With HIT, we needed to wait with lots of patience as they were on new year’s break. After they returned, it was very difficult to reach them. I even asked my very good friend Debbie who lives in Frankfurt to talk to them; she went personally to HIT, and then they reacted!
The center in Japan agreed to perform the treatment, but we hesitated as it was very complicated to move to Japan for almost two months — what could we do with our small daughter? How would we communicate with people there? Finally, HIT accepted us as well, and the race for getting insurance coverage started. Thanks to Freddy Rosenfeld, who was kindly mentioned by Professor Boriani, we received approval from our private insurance. Freddy contacted the Rav Firer, who is an authority in major illnesses and treatments. Before Rav Firer gave his acceptance, one Friday morning Freddy called me and said, “Go get a tumor tissue sample and bring it to Rav Firer right away. A rabbi will take it to Mayo Clinic.” We did not hesitate even a second, and drove to the laboratory in Ichiliov. Friday is not a working day in Israel, so the laboratory was almost closed. We managed to find someone there (an angel), and explained to her what we needed and somehow she agreed and we literally STOLE a tissue sample of the tumor from the lab. In a few hours, the tumor sample was in the rabbi’s hands on the way to USA. Mayo Clinic confirmed the diagnosis, and Rav Firer’s contacts gave their blessing for the carbon-ion beam treatment.
Our angels Igal and Carmit worked with Freddy to get the insurance acceptance and very good coverage. Sadly, the public insurance did not accept the treatment, though it was Isi’s best option.
At the end of January 2014, Isi started carbon ion therapy in Heidelberg, as part of ISAC trial. Dr. Matthias Uhl led the treatment. We left our small daughter with my mother in Israel and moved to Heidelberg for a month and a half. The treatment consisted of six weeks of radiation and then an additional week to stabilize before returning home.
Heidelberg is a beautiful town 30 minutes from Frankfurt. A river and mountains surround it. As there is an important university, the city is full of young people riding bicycles. In Heidelberg, we rented a very cozy and modern apartment from Mr. Chandler, who was always very kind to us. Every morning I brought home a fresh hot baguette from the bakery downstairs. Thanks to Debbie, Leo, Vivian, and Matthias who helped us during our stay in Heidelberg and after the treatment ended. The treatment was not easy at all. Isi suffered from intense pain and cramps that increased with the time. At least he did not lose function.
After the treatment, Professor Kollender, Dr. Stroh, Professor Boriani, and Professor Debus’ office in HIT performed close follow-up. Isi was the first Israeli patient treated with carbon ion therapy. Since his treatment, more patients have been referred to carbon and proton ion centers; in that sense, we are very happy for our contribution to other’s health care.
During the following seven years there were ups and downs. Each MRI brought with it lots of anxiety and stress. Though the tumor was stable, in 2017, Isi underwent a control PET-CT scan, and a mass on the lung was discovered. That led to new examinations and consultations. Professor Merimsky, our oncologist, was our guide in that new chapter. As nothing is common for us, it was not possible to perform a biopsy due to the localization of the mass, so the only option was surgery to remove it. During the surgery, the frozen section biopsy confirmed lung cancer, but Dr. Paz, the surgeon, decided to wait for the biopsy results. The surgery to extract the left lung’s upper lobe continued two weeks later.
Both the lung cancer (adenocarcinoma) and the chordoma are primary cancers; there is no relation between them. I must say that probably and ironically, chordoma saved Isi’s life, as the lung cancer was discovered at an early stage during a PET-CT scan intended for monitoring the chordoma progress. Isi recovered from the two chest surgeries. It was not easy but over the time, he became strong again.
Going back to chordoma, over the years, Isi lost muscle mass and nerve function on his left foot. Nevertheless, he’s able to walk and we are convinced that the chosen treatment was his best available option.
We are continuously in touch with the Chordoma Foundation, especially with Shannon, who has been truly supportive. We met in the Foundation incredible people like Josh Sommer, Patty Cogswell, the late Hans Keulen, and many more. We joined two conferences in Europe organized by Hans, but since his death, the activity of the Foundation in Europe decreased. (Note: Better serving patients everywhere is among the Chordoma Foundation’s top priorities in the year to come. View our growing number of international resources here.) Isi donated tissues from his tumor to the Foundation for research, and took part in U.S. National Cancer Institute’s natural history study recently.
During the summer of 2021, an MRI showed a new mass on the right section of the sacrum. The discovery brought again fears and stress. Again, I kept the anxiety separate, and started researching, finding, reaching. The options were to “do nothing and wait,” or start systematic treatment with Glivec (Gleevec/imatinib). As always, we consulted with Professor Boriani, who said doing nothing was not an option, that Glivec would probably stop the growth for a while but with side effects, and that it was time to perform the en bloc resection or radiation.
The idea of the surgery paralyzed me for some time; I was not able to breathe. Reading between the lines, I decided to explore the radiation option. In Germany, they ruled out that option, saying that a second course of radiation would not be possible. I was not happy with that answer and somehow decided to call Freddy Rosenfeld. Again, the miracle started. Freddy immediately reached Professor Hug, the radiation oncologist who is leading MedAustron, an ion therapy center in Austria. Prof. Hug took action quickly, reviewing the images with Dr. Fossati, a radiation oncologist. Their opinion was that a second carbon ion treatment was viable, with the need of a spacer to protect the rectum.
A second course of radiation is uncommon; I think Isi is the first patient in the world who received two carbon-ion radiations for sacral chordoma. Professors Boriani and Kollender were very confident in the approach, and then Freddy and Igal helped again to get the insurances approvals. In no time, we were in Austria ready to start the treatment. As it was during a COVID-19 wave, we moved to Austria with all of our three children, who continued working and learning remote from the small town of Wiener Neustadt.
This journey was longer, since Isi needed the spacer surgery before the radiation. There was no certainty the surgery would succeed, but without the spacer there was a big risk of rectum perforation due to the radiation. Dr. Viragos in Wiener Neustadt performed the surgery. Dr. Viragos explained the surgery risks, including a possibility for opening the abdomen to insert the spacer. Dr. Viragos succeeded to place the spacer, and that was by laparoscopy without opening the abdomen, thank God! Dr. Viragos not only succeeded in inserting the spacer, he also managed to separate the tumor from the colon, making Isi feel more comfortable.
During the five days of hospitalization in Wiener Neustadt, visits were only allowed a half an hour per day due to COVID restrictions. Those were difficult days, though there was big relief knowing the spacer was placed and the radiation should be safer. Then a few days after the surgery, the radiation treatment started at MedAustron. MedAustron is an incredible facility, managed by the best of health care professionals. They took care and helped us with everything, including housing. They adopted us and made us feel safe. From the treatment and finding books in Spanish, to finding a swimming pool for my training, they took care of every detail. I am sure that their hospitality contributed to the positive results of the treatment.
Though the radiation intensity was higher than the treatment in HIT, the side effects and pain was much lower than they had been in Heidelberg. Not only has the technology advanced in seven years, but also the professionalism and dedication of Prof. Hug and Dr. Fossati contributed to the positive treatment outcome. Dr. Fossati carefully planned the treatment, explained to us all the details, and made sure to minimize the impact of the radiation on nerve roots. As it was the middle of August high season in Austria, it was difficult to find accommodations. For the first two weeks we stayed at the Hilton in the center of Wiener Neustadt. It was not easy for a family of five to live for 14 days in two hotel rooms, but we managed after all to have a good time walking to the city center, discovering small restaurants, and tasting the Austrian cuisine. Between hospital visits and radiation, we also managed to do small trips to Vienna and the surrounding areas. Austria is a beautiful country and the people are very nice. After two weeks, we moved to Manfred’s house. We had space, rooms, a garden, and even a pool. Thank you Manfred for your hospitality and making us feel at home. Manfred’s house was our home and office for a month. We converted the living room into a home office, each of us working and learning remotely while Isi received treatment.
The treatment finished and we returned to Israel. Now, Isi is undergoing an MRI every three months. Meanwhile it is going well and we’re hoping for stability over time. Since the new tumor is on the right side, now the pains and cramps are in both legs. Isi’s spirit never breaks; he swims and does physiotherapy to strengthen his body. Isi is going on in spite of the difficult path and obstacles. That good spirit is a lesson for all of us, day by day and not thinking too much. As problems come, we resolve them and move on.
The future is unknown; every day that we are together and we are able to breathe is a miracle.
I would like to mention many more angels other than the names above:
- Dr. Elias Castel, our dearest friend and more than that a brother, always listening, advising, helping, and caring.
- Dr. Mike Cusnir, my dear cousin and a brilliant hematologist, helping and guiding us.
- Dr. Paul Translateur, our dear friend and a great orthopedist.
- All of my sisters, each of whom are my support.
- My mother, for taking care of Michelle when she was a little girl and we were away on treatments.
- My big children Jonathan and Debbie, caring for their father and supporting me with all these uncommon journeys.
- Michelle, my 13 year old. From her early childhood surrounded by her parents, who were busy with tests, talks, and all related to living with a hard disease.
- My boss Eli, supporting and guiding me on the next steps.
- All our friends and family, understanding and caring so much – thanks.
Tell us your Uncommon Story
Telling your chordoma story in your own words can help others in our community feel more connected and prepared to take on whatever may lie ahead. We invite you share your experiences and insights with others, who can benefit from knowing they’re not alone.