Each and every survivor is critically important to our search for the cure. Help us reach out to newly diagnosed patients, form a community of champions, and explain the importance of our uncommon cause by sharing the story of your chordoma journey. Tell us:
- The uncommon qualities that you use to fight chordoma (courage, determination, hope, love, etc.).
- Who or what was most helpful during your diagnosis and treatment.
- How you plan to continue fighting chordoma.
- What you would say to a new patient to help them feel like they can beat chordoma too!
Below, you can read the stories of some of the people who are determined to fight back against this disease. Share your story and be a part of our Uncommon Cause!
Remaining positive while dealing with recurrences
My chordoma story started in 2000 when I felt a pain at the bottom of my back while sitting. My pain gradually worsened over four weeks, so I decided to see my doctor. My doctor couldn’t determine the cause of the pain and prescribed Ibuprofen. I spent the next several years seeking help from different medical professionals – physiotherapists, chiropractors, and acupuncturists – who were unable to resolve my pain.
Five years passed, and my daughter, Gemma, suggested I go back to my doctor and request further investigation into what could possibly be causing me so much pain. Finally, in August 2005, my doctor arranged for me to have an MRI at Warrington Hospital.
Two weeks after the MRI, my wife, Gill, and I returned to Warrington for my results: I had a ball of matter the size of an orange attached to my coccyx. I was then referred to Royal Orthopaedic Hospital for further tests and a biopsy. The next two weeks spent waiting for the results felt like the longest of our lives.
Following the scans, we met Professor Grimer, who was to become my surgeon. Mr Grimer explained that I had a rare form of cancer called chordoma, and the way to treat it was to have it surgically removed. The tumour was very close to my bowel, and I would need to have a colostomy bag that could be reversed at some time in the near future if all went well. He told us that I was to undergo a major operation that would take about 10 hours to perform and result in a very large wound running up my back. I would be in the hospital for about three weeks and would need to learn to walk again.
I woke up from my surgery on January 4, 2006, to see Gill and my two daughters, Gemma and Gina. This was a very emotional time for us all. The next week was spent in bed until I was well enough to learn to walk again. Twelve days after arriving in hospital, I was allowed to return home. During my first month at home, I had my wound dressing changed and repacked every day at home. In the meantime, I was getting used to my colostomy bag and beginning to go outside for short periods of time. Finally, after about six weeks, I started to ride my bike again and gradually spend time at work. I was determined to stay positive throughout my journey, despite several setbacks along the way.
In April 2008, it was discovered that my tumour had recurred. It was the size of my thumbnail, and it was decided by my medical team my surgeon would try to remove it during a CAT scan. When I woke up from the anesthetic, I was told that the operation was unsuccessful and that they would try again in a month’s time when the tumour had grown a bit more. In May 2008, I had the second tumour removed successfully.
I had another recurrence in June 2011 and a successful surgery to remove it in July 2012, at which time it was decided that I was a good candidate for proton beam therapy. Proton beam was not (and is not currently) available in the UK, but the National Health System approved funding for my treatment to be carried out over three months in Florida.
I have since had clear scans, and Professor Grimer made me feel fantastic at my consultation in October 2015 saying, “Gary, if there was ever any evidence that chordomas can be cured you are the living proof.” Today I remain symptom-free.
Throughout this journey, I have always remained absolutely positive that I will beat this cancer. I am eternally grateful to my wife who has shared this entire journey with me and has always been with me during my treatments, consultations and scans. I can’t thank her enough. I am also grateful for the love and support from my two daughters (Gemma and Gina) and grandchildren (Liam, Leah, Lexie and Lacey). I now look at myself as a cancer survivor and would like to share this story with other people diagnosed with chordoma – I am living proof that it can be defeated. I hope this encourages people to remain positive throughout the journey. Here’s to the future.
The collective support of this group was a lifeline through some of my darkest of days
On a Friday afternoon in the fall of 2011, on my way to lunch with my husband Sean, I made a quick stop to pick up a copy of an MRI taken a year prior for increasing and changing migraines. Sean waited in the car while I ran in to pick up the records. In addition to the CD, the envelope included the radiologist’s report which I pulled out to read…just out of curiosity since my neurologist had, after all, told me many months before that my scan was just fine. The report was short, only a few lines. It stated that I had a lesion in the base of my skull, in something called the clivus. The differential diagnosis – a short list of the most likely diagnoses – listed clival chordoma at the top. We didn’t make it to lunch…
Over the course of that weekend, I learned that this type of tumor was not just uncommon, but exceedingly rare, occurring in only one in a million people. While the radiologist viewing my film had correctly identified the tumor, my treating neurologist failed to see it and inform me. I learned that many patients similarly confront delays in diagnosis and chordomas are often mistaken for other types of tumors.
Information was hard to come by and what little I could gather was not promising. Treatments sounded dreadful and the prognosis dismal. The compounding impact of being diagnosed not only with a life threatening disease but one that is so very rare is difficult to put into words. Even among top neurosurgeons, few see more than a handful of chordoma cases in their entire careers. No one was going to have stories of family members, friends or co-workers that had gone through this before. I was alone and walking a completely unknown path. That would, however, soon change.
One of my very early searches led me to the Chordoma Foundation and a strong, knowledgeable community of survivors. Within days, I was in touch with other patients and gathering information that simply wasn’t available anywhere else. Most importantly, I came to understand just how critical my first surgery would be and not to rush into treatment. Fortunately, chordomas are usually slow growing. I was rescanned within days and thankfully, the tumor had not changed over the course of the year since it had shown up on the first MRI. The migraines were unrelated, this was an incidental finding. The collective support of this group was literally a life-line through some of my darkest of days. Not only was I able to keep moving forward, I now had a plan.
The next few months were spent consulting top neurosurgeons and oncologists who had experience in treating chordoma. I covered all the bases, got answers to my growing list of questions and with the encouragement of family and friends (many of them now virtual) I made my decision.
My tumor was resected in March of 2012 by a very experienced team of doctors in Pittsburgh. My neurosurgeon had operated on over 100 chordomas. I recovered quickly but there were a few bumps in the road. Decisions needed to be made about radiation, unforeseen complications occurred, treatment plans changed at the 11th hour and I required a second surgery to have a shunt placed. My gratitude to the phenomenal medical team who continues to get me through this with a promising prognosis is indescribable.
For many months, I did a lot of wishful thinking, not wanting to face any of it. Heading into brain surgery wasn’t easy and living with a disease carrying such a high recurrence rate has felt, on some days, to be more than I can bear. I am not particularly brave or courageous, but they say courage is not the absence of fear, it is doing what is necessary in spite of the fear. In the words of Robert Frost, “the best way out is always through”. These words have helped me find the courage needed to face the hard things that come with a disease like this. I am reminded of them every 6 months when I board another flight to Pittsburgh, when I walk through the hospital doors with the worst kind of nausea, when I lie on the table and slowly slide into the MRI tube and during those endless moments of waiting for the results. My anxiety ebbs and flows, but thanks to the Chordoma Foundation, research is accelerating and with exciting new findings, there is real hope for desperately needed treatments.
As I approach November 11th this year, 3 years from that day that I first read the words clival chordoma, I reflect on my continuing journey and how one’s perspective alters over time. In the early days, I was certain that I would never be the same. I experienced profound grief for the “old me” and my “old life.” And while it is true that I am not the same and life is different now, I am still me and life continues to hold much happiness, laughter, joy & possibility. I certainly wouldn’t have chosen this journey and I am not a “silver-linings” kind of girl, but it’s hard to deny the unique intensity and beauty of life that comes with a real understanding of how fleeting it all is.
This challenge helped me become even more of who I could be
My name is Heather and I am a Chordoma Survivor. Never did I think that, just over a year ago, I would be starting my cancer warrior journey. In October of 2012, I woke up with severe pain in my lower back and in my glutes. These episodes required painkillers to get through and usually a few days to recover. I finally went to see my doctor. He thought it might be piriformis pain and sent me to see an orthopedic surgeon. The orthopedic doctor too wondered if this was just muscle pain that I needed physical therapy for. The next step in my journey would be the turning point to discovering the cancer. An unrelated illness caused me to end up in the ER with a small intestinal blockage. The doctors did a CT scan on my abdomen and pelvis. The blockage cleared within 24 hours but shortly after my hospital stay, the doctor caring for me asked me to come into his office. He’d found something, they asked me to have an MRI. I was terrified but knew I had to find out what was going on. For me, faith was integral part of staying calm as I did a lot, I mean a lot, of waiting.
I recall the surreal feeling of visiting my oncologist’s office the first time. Surrounded by the beauty of Seattle, this building was filled with people with in their own cancer story. I even recall the hospital band being placed on my arm. I felt marked, and it felt ominous. When we finally sat down with my oncologist, he said that the MRI results indicate a cancer called Chordoma. I had no idea what that really was. I had done some researched but had decided to take what I learned one step at a time. Next, I was sent for a biopsy in order to get a more definitive diagnosis. The week of waiting seemed like an eternity. I considered this journey and prayed a lot and talked a lot and tried to process the potential diagnosis that could change my world. What will I become after this? I even thought that I might be preparing to fight a battle that would also be my end in this world. The day finally arrived and we waited, nervously, but with a strange peace, to hear what this THING that was growing in my body is. The answer came. “Heather, you have Chordoma.” I said very calmly, “Ok, what do we do?” My doctor informed me that I would need surgery to remove the part of my spine that had been invaded by this unwelcome visitor. “What does this mean, what is going to happen to my body, how will I be when it is done?” The questions swirled in my head and I spent a lot of time writing down my questions and asked them and noted the answers. I was determined to be as prepared as I could be. As I prepared for the surgery, I thought about who I wanted to be during this fight. I wanted me to shine through no matter what and remain true to myself and that faith and strength and courage would carry me!
One of the most heart-wrenching parts of this battle was sharing this diagnosis with my family and friends. This proved to be what would help me be brave. My husband and son were my primary support system here, and my daughter, who lives in another state, could not be here but sent love and support that I needed. My friends and family created a Facebook page for me where they would send messages of and love and support. The messages gave me courage and helped me remain me, not just a woman who has cancer. I didn’t want to be labeled or hold the cancer diagnosis too close. It would be something I would come through and not stay in.
Surgery day came and I felt more peace than ever and was ready to face this challenge. I was very blessed to have my husband stay by my side through it all. My brave teenage son held down the home front and cared for our dogs while I was in the hospital. My very best girlfriend came to stay with me in the hospital too and helped me keep my sense of humor as I learned what this surgery had done to my body. The doctors were confident that the surgery had accomplished what they had hoped – clean margins and no evidence of cancer! Part of my sacrum was gone- S3 down to my tailbone. I woke up from that surgery delighted that everything seemed to work and move well!
I discovered that I was able to keep laughing, keep believing that I could beat this cancer and come out a better more true self. It took a long 4 months for my surgery wound to heal, but all the while I knew that I could and would get through this. Starting in late January, I began 32 treatments of IMRT radiation. I gained strength even just walking from my car to my appointment. I came to love my team who helped me through this part of my cancer experience. Laughter, smiles and lots of gentleness kept me going. I found an invincible part of me could help me stay true to me and this challenge helped me become even more of who I could be. Ringing that bell at the end of radiation treatment seemed to release me back to life. I have grown stronger and more determined to take each day as it comes and beat this cancer. If I can do it, anyone who is visited by this cancer can do it!
Having a great outlook on life and keeping yourself busy is 3/4 of the battle
My journey with Chordoma started on October 29, 2004. The doctors in my state give me a 50/50 chance of survival. The doctor at Memorial Sloan Kettering gave me a 80/20. No brainer there, so On December 29, 2004 I had a 11.5 hour surgery and they removed a vertebrae that the tumor was grown around and put in an artificial one. I have 2 titanium rods with a cross over that holds me together. I then had 35 treatments of radiation. It took me a year to recuperate. It returned again in 2011, when I had another small surgery and a small patch of radiation. This was a walk in the park compared to the first surgery. In 2013 I had a chordoma tumor that started growing on my side. They removed it and put in a wire mesh. Now in 2014 I have 3 more small spots in my back, so they are getting ready to do radiation on me in that area. It is so close to my spinal column and nerves they have to be extra careful not to damage them with the radiation.
I was a wood worker by trade and had to give up that part due to a weight limit of 30 lbs for the rest of my life. However, I can still do small and light stuff with wood and being able to do this has given me great joy. I believe having a great outlook on life and keeping yourself busy is 3/4 of the battle. Having awesome doctors and believing in a much higher power through God and lots of prayers to get us through this trial in our life. Now I have a granddaughter and that makes me want to fight harder so I can be here for her as she grows up.
We are moving closer to a cure
It was a long road to recovery after I was diagnosed with chordoma in 2009. Following surgery to remove a large clival tumor, I spent four weeks in ICU, underwent radiation treatment and battled with side effects that lasted long after I left the hospital. Having had the benefit of world class surgeons and a superb radiation specialist, I began to consider what I could do to help the broader chordoma community.
After meeting with the founders of the Chordoma Foundation and learning more about their model for advancing research and the progress they were making, I realized that this small organization was going to have an exceptionally large impact. My wife, Shari, and I began providing regular financial support to the Foundation and, in 2011, I joined the Board of Directors.
Several things have particularly impressed me about the Foundation – the incredible research it has sponsored and promoted; the applicability of this research to more common forms of cancer; how the Foundation has become a model for other rare and orphan diseases; and how the Foundation is increasing its commitment to education and outreach to ensure that every patient has the information and ability to make the best treatment decision.
I am excited knowing that the Chordoma Foundation has made remarkable strides toward new treatments that will mean better outcomes for everyone affected by this rare disease. We are making great progress and, together, we are moving closer to a cure.
We are determined to beat this cancer
On December 19th, 2013 I started to have health complications which included severe double vision, dizziness and nausea. Over the course of the next week, Sarah (my wife) and I made visits to different doctors and specialists. It was explained that I am suffering from ‘6th nerve palsy’, which means something was affecting the nerve that controls the movement of my right eye. I was scheduled for an MRI on December 26th. The very next day, I received a phone call that would immediately change our lives. I was told that I had a large tumor in my head pressing on the nerve behind my right eye. The doctor then scheduled a meeting with a Neurosurgeon a week later. On January 3rd, I met with the Neurosurgeon and the news he delivered was what we feared most. He explained that my tumor was not benign, but, in fact, cancerous. It is called a chordoma tumor, located at the base of my skull. The 2-inch wide tumor is positioned between both of my carotid arteries, below the pituitary gland, and in front of the brain stem, so the surgery and radiation is very risky due to all of the major structures which are located around the tumor. Over the next week, Sarah and I did everything we could to find the best doctor/surgeons in the country to remove as much of the tumor as possible. We are hopeful that a total resection will happen, and then proton beam radiation therapy. We have our good days and our bad days. We sometimes wonder why this would happen to us. But we have faith that God will see us through this. We have faith in God’s perfect plan and that He will give us the strength we need during this journey of ours. We are determined to beat this cancer through our faith in God, our diet and personal fitness. We are so lucky and blessed to have amazing support and love from friends and family across the states and around the world. I am most thankful and blessed for a wife that has amazing strength and hope. I would never be able fight this without her. We are determined to beat this and we WILL beat this!
If you stay positive through your fight, you will be an inspiration for everyone else!
I was diagnosed in June of 2009 at the age of 26! I had been complaining for over ten years of extremely bad back pain. They had told me it was because I was overweight. Finally, in March of 2009, I found a doctor that would do an MRI and not just give me some pills. By April I was having back surgery because they thought I had a blown disc. When an amazing doctor went in and did surgery, he came back and said in his 40 years of practicing he had never seen gunk like that! They sent it off to the lab and in June I got the call that I had chordoma. They told me there was nothing they could do and no cures so just go home and live every day like it was my last. Well, being a single mom of a 5-year-old that just wasn’t acceptable! In September of 2010, after lots of blood, sweat, and tears, I learned about a treatment called proton beam radiation at Loma Linda University. In January of 2011, after fighting with insurance companies, I finally got an appointment. In February I was seeing another surgeon to see if they could remove more of the cancer. By March I was having another surgery and in May I started proton beam radiation. It was 40 session, 5 sessions a week. That meant raising money, moving to a big city for 3 months, leaving my daughter with my parents, and going through it alone! Thankfully, I made lots of friends at Loma Linda that were having proton treatment for prostate cancer. It wasn’t the same cancer but they knew what I going through. I am now stable. The cancer is still there but it hasn’t spread thank God! Just try to remember if you are down everyone around you is going to be down, so if you stay positive through your fight, you will be an inspiration for everyone else!
I am so excited about the possibilities for future treatment
In 1998, I developed double vision while visiting with my wife’s family in Mississippi. Several MRIs later, surgery was scheduled to remove what was thought to be a pituitary adenoma. Dr. Mark Krautheim discovered that this was not a pituitary adenoma and stopped the surgery to await pathology results. It turned out to be a clival chordoma. I scheduled a minimally invasive procedure with Dr. Hae Dong Jho and followed this with Gamma Knife with Dr. Dale Lunsford and the tumor remained stable for 5 years. At 7 years post diagnosis I had another minimally invasive procedure to reduce tumor size. Over the years, I’ve had several more procedures, some complications, but overall, I was able to continue ski instructing, fishing, hunting, and enjoying life.
In 2010, my physical abilities were compromised after the cranial bleed. I developed hydrocephalus and dysmetria. It is now 15 years since my diagnosis. Last year, I had my first open craniotomy and followed that with Proton Therapy. In August of 2013, I entered a clinical trial for the brachyury protein at NIH. My tumor has been stable for over a year.
I do have physical impairments, but with some minor assistance I can care for my basic needs. I have a sense of humor and enjoy people. My dancing has slowed a bit, but I still enjoy music and a few slow steps. My wife and I travel a lot…usually adding days to medical trips. It has been wonderful to attend family weddings, to enjoy our nieces and nephews, and to visit with friends all across the U.S. Our faith is strong, our physicians have helped us throughout this journey, and our 33 year long marriage supports us in the difficult times. Dr. Jho told me that no one knows how long we have, but we do have choices about how we live what time we do have. I know that I will continue to fight to live, and I am so excited about the new research and possibilities for future treatment. While the diagnosis of chordoma is scary, there is hope for a future, and a good one at that.
I gained a tremendous sense of self
Like most single, young women living in a big city on their own, I couldn’t foresee anything threatening the bright future ahead of me. But my life turned upside down one morning when I woke to a blurry vision. Within an hour, the symptoms progressed to severe headache and nausea, and a brief episode of numbness in my left hand. The instructions from my doctor’s office were straightforward: Come here now. Don’t drive your car. My doctor performed standard neurological tests in her office, but couldn’t find anything suspicious. She said she rarely ordered MRIs, but wanted me to have the test to put her own brain at ease. A few days later, I got a call at work I was never expecting: “It’s a good thing we did that MRI after all. You have a mass in your brain, and it needs to come out.”
The next day, a local neurosurgeon explained that the tumor was on a bone at the base of my skull called the clivus, measuring 3x3x3 cm. Still dumbfounded, I saw three additional neurosurgeons from top medical institutions, who all suggested different approaches with varying prognoses. With no consensus, I realized it was up to me, a layman, to make a medical decision that would affect the rest of my life. Research led me to an expert who was confident that I had a chordoma, a rare, slow-growing tumor comprising just 0.2 percent of all brain tumors, less than 200 people a year. He told me that my treatment, involving surgery and radiation, would consume the next year of my life. Armed with this information, I refocused my search and sought a fifth and final opinion with a brilliant and compassionate team of surgeons – Drs. Chandranath Sen and Peter Costantino.
It took a tremendous amount of strength for me to schedule the surgery, and even more to walk through the hospital doors. After waking from the nine-hour operation, I wiggled my fingers and toes. Yes! I’m OK! But unfortunately, only half the tumor was removed and I would have to return six weeks later for another surgery of the same magnitude. I was devastated that I had to do it all over again, and almost gave up. Walking into the same hospital for the second time was the worst kind of déjà vu I’ve ever experienced. But this time I woke to good news: they got the whole tumor out! I followed my surgery with proton beam radiation at Massachusetts General Hospital, which at the time, was one of only two centers in the country offering the specialized treatment. I was humbled by the other patients I saw over the two months, some who were on the road to recovery like me, and many others, who were still at the beginning of their journey. My treatment culminated with a flight home from Boston on May 18, 2004 exactly one day shy of a year from that one and only day I had symptoms. As a side effect of the surgery, I permanently lost my sense of smell; but gained a tremendous sense of self. Years later I married the love of my life, and delivered a healthy, beautiful baby girl.
We were able to meet this situation head on…and beat it.
Dad was diagnosed in July 2012 when an MRI identified a tumor on L1 – L2. I reached out to the Chordoma Foundation via Facebook in search of advice on how to proceed. The Foundation responded very quickly with your phone number. During our one phone conversation, CF was able to provide me with some meaningful and actionable guidance. Some of this included the importance of seeing a doctor with specific experience in treating chordoma, such as the surgeons at Johns Hopkins. The Foundation also advised us to seek out multiple opinions on treatment plans and to not necessarily go with the first surgeon we met.
Together, the two surgeons, a radiologist, and a team of other doctors devised a plan for pinpoint radiation (cyber knife) followed by back-to-back surgeries in September 2012. During the first surgery, which took about 11 hours, they put two titanium rods through eight vertebrae. On day two, the surgeons removed the tumor and two impacted vertebrae, and installed a mesh cage to fuse the remaining sections of his spine. This second surgery lasted about six hours. Dad stayed in the post-surgical unit for a few days, then recovered in the rehab wing for about two weeks. His total stay at the hospital was only three weeks.
The operations were deemed successful at removing all signs of cancer and minimizing collateral damage. Dad was walking carefully on his own when he left Hopkins. By Thanksgiving, he was fairly mobile and going up stairs. By Christmas, he was back to cooking as usual and hosted our family for Christmas dinner! Today, 10 months after surgery, he still has numbness in his quadriceps, some swelling in his lower legs/ankles, and stiffness in his back. But he remains in control of all bodily functions and is back to his optimistic, sarcastic self. Actually, I think he remained optimistic and sarcastic the entire time.
While we aren’t sure if Dad will be able to play tennis again, he can certainly drive a car, fly fish, cook delicious meals, enjoy a good microbrew, and teach his granddaughters to sketch beautiful drawings. We are blessed by the results of his surgeries and rehab, and I am so thankful for the guidance and support CF gave me last summer. Thanks to the Foundation’s encouragement, we were able to meet this frightening, intimidating situation head-on…and beat it.