Gary Sinise's Son's Cancer Battle
- Actor, musician, and humanitarian Gary Sinise revealed in a touching tribute that his son McCanna “Mac” Sinise has passed away from a rare bone cancer called chordoma, something he was diagnosed with five years ago.
- Mac chordoma, a rare type of cancer that occurs in the bones of the skull base and spine. It represents about 1%-4% of all primary bone tumors.
- According to the National Cancer Institute, Chordoma, which is also called notochordal sarcoma, “is a slow growing cancer of tissue found inside the spine.”
- Being a parent to a child with cancer is an emotional undertaking; make sure you’re checking in with yourself throughout, and taking care of your own mental health, too.
- Losing a loved one to cancer is an incredibly emotional time that comes with grief. The grieving process comes in stages: denial, anger, bargaining, depression, and acceptance. These labels help us frame and identify what we may be feeling, and these stages can occur in any order.
- New York-based clinical psychologist Dr. Marianna Strongin says it may be helpful to remind yourself that these feelings are “meaningful yet temporary.”
Mac passed away at age 33 on January 5, 2023, Sinise revealed on the Gary Sinise Foundation website. His son battled chordoma, a rare type of cancer that occurs in the bones of the skull base and spine. It represents about 1%-4% of all primary bone tumors.
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The dad of three, who also has two daughters Sophie and Ella, explained, “Our family’s cancer fight lasted for 5 ½ years, and it became more and more challenging as time went on. While our hearts ache at missing him, we are comforted in knowing that Mac is no longer struggling, and inspired and moved by how he managed it.
“He fought an uphill battle against a cancer that has no cure, but he never quit trying. Mac loved movies, and we always told him he reminded us of the soldier at the end of the extraordinary film 1917, running through the battlefield, bombs going off all around him, knocking him down one after the other, yet he keeps getting back up, refusing to quit and keeps running forward.
“I am so blessed, fortunate, and proud to be his dad.”
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Looking back on how his son’s August 2018 cancer diagnosis followed his wife’s stage 3 breast cancer diagnosis that same year [she has been in remission, after surgery, and months of chemotherapy and radiation], Sinise admitted he had never heard of the disease his son was diagnosed with.
“I had never heard of this. And two cancer patients, mother and son, within two months of each other? A real punch in the gut. I went online to see what I could find. Chordoma is a one in a million cancer. Originating in the spine, Chordoma affects, on average, only 300 people in the U.S. per year. In 70% of the cases the initial tumor can be removed, and it is cured. But in 30% of the cases, perhaps about 90 people per year, the cancer returns.”
Max needed surgery to remove his initial tumor back in September 2018 and a spine procedure in February 2019 to get rid of what seemed to be an infection.
However, a follow up scan in May 2019 revealed his Chordoma returned and was spreading, Sinise said, adding, “This began a long battle that disabled him more and more as time went on. The cancer fight was getting harder, but throughout most of 2019 he was still able to come to the GSF [Gary Sinise Foundation] office, until a third spine surgery in November of that year.
Helping You Cope With Grief
While his son, a graduate of the USC Thorton School of Music, was recovering at home, he spend his time contributing to the Gary Sinise Foundation podcast.
Mac had is fourth spine surgery in January 2020 and soon focused on his full-time recovery and rehab, leading up to his fifth spine surgery in June of that year, in addition to radiation and more chemotherapy.
Although Sinise’s son had been left paralyzed from the chest down amid his fight with chordoma, he began working on music project called “Arctic Circles” because “still had limited use of his right arm, and fingers on his left hand.”
“Being right-handed, he would strap a stylus to his right hand, and he could punch letters and notes into his phone or iPad. He also had a small keyboard he laid on his hospital bed table that he used to work on his music,” Sinise wrote in his son’s tribute.
Understand Chordoma, The Rare Cancer Sinise’s Son Battled
According to the National Cancer Institute, Chordoma, which is also called notochordal sarcoma, “is a slow growing cancer of tissue found inside the spine.”
The disease can occur anywhere along the spine and is most often found near the tailbone (called a sacral tumor) or where the spine meets the skull (called a clival tumor).
“Chordomas form from the left-over cells that were important in the development of the spine before birth. These cells are called notochord cells. When the notochord cells don’t disappear after birth, they can turn into chordomas,” the NCI explains.
“Chordomas grow very slowly. Many people don’t notice any change in their bodies for years. When they do start to have symptoms, it can take a while for the chordoma to be discovered and diagnosed.”
SurvivorNet experts explain, that Chordomas can arise at any age but are most common in adults aged 50 to 80. Interestingly, it’s found to be slightly more prevalent in men than in women. It also affects only 1 in a million people each year globally.
Remember that while chordoma is indeed a rare and complex disease, it’s not insurmountable. With a solid understanding of what it is and how it works, you’ll be better equipped to navigate the journey. Not only does knowledge empower you, it can also help to alleviate the fear and uncertainty that often accompany a diagnosis.
Identifying Symptoms and Diagnosis
Identifying the symptoms of chordoma is the first critical step in diagnosis and early treatment, which can increase the likelihood of success. However, one has to keep in mind that chordomas are slow-growing tumors and often don’t present symptoms until they are quite large, leading to difficulties in early detection.
The symptoms can vary widely and mostly depend on the tumor’s location:
- If the chordoma is in the skull or neck (cranial or cervical chordoma), symptoms can range from headaches, double vision, blurry vision, and facial pain or numbness.
- If the tumor is in the spine (vertebral chordoma), it might cause back or neck pains, weakness or numbness in the arms or legs.
- And finally, if the chordoma is in the lower part of the spine (sacral chordoma), symptoms can include lower back pain or tailbone pain, decrease in bowel or bladder function, a lump you can feel through your skin, numbness or weakness in legs
As for the diagnosis, it involves a series of tests. Often, the journey starts when you visit your doctor after experiencing any of these symptoms. A detailed medical history and physical examination can give your doctor critical insights to proceed further.
Your doctor might recommend imaging tests such as X-rays, magnetic resonance imaging (MRI), or computed tomography (CT scan). If a tumor is suspected you will likely be referred to a bone cancer specialist. To confirm a diagnosis a biopsy is performed, where a small sample of the suspected tumor is taken for further examination.
Remember to always discuss any unusual symptoms you might be experiencing with your healthcare provider. While the symptoms of chordoma can mimic many other common conditions, it’s important to rule out or confirm chordoma to initiate the right treatment approach.
There are definitely challenges in diagnosing chordoma because of its slow growth and location. But partnering with a healthcare team familiar with rare diseases can improve the diagnosis process and ensure that your health is managed effectively.
Coping With A Child’s Cancer
When your child is diagnosed with cancer it may seem that the dreams you had for your family are falling apart. It’s important to to the best of your ability try to keep a level head after you’ve fully felt all of your emotions around the diagnosis.
You’re not alone in this journey your child’s oncologist and care team are there to guide you and provide information and answers. Oncological social workers are a fantastic resource to help you sort out the financial aspects of cancer treatment, as well as other cancer-related issues. Skilled psychologists and counselors can be accessed to help you maintain good mental health through your child’s cancer journey, to the best of your ability.
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And, don’t be afraid to reach out to your support system friends, relatives, etc. for help through this process. No one expects you to handle everything on your own.
SurvivorNet wants you to know that grief may look different for everyone if you have lost a loved one.
The stages of grief are denial, anger, bargaining, depression, and acceptance. These labels help us frame and identify what we may be feeling. These stages can also occur in any order.
The time it takes to navigate these stages can also vary, so giving yourself grace and patience while navigating your feelings is important.
“It often gets better over time, but on certain days, it can look like depression, and on other days, people look perfectly normal and can function,” Dr. Scott Irwin, a board-certified psychiatrist and Director of Supportive Care Services at Cedars-Sinai Medical Center, previously told SurvivorNet.
Dealing With Grief Related to Health Problems
Dr. Irwin added that grieving people are coming to terms with “the change in their life; the future they had imagined is now different.”
New York-based clinical psychologist Dr. Marianna Strongin says it may be helpful to remind yourself that these feelings are “meaningful yet temporary.”
“If you approach them with compassion, kindness, and eventually acceptance, you will come away from this period in your life more connected to your resilience and strength,” she wrote for SurvivorNet.
The Power of Music
It’s truly inspiration to hear of Mac’s determination through the tough times, especially to create music, something he loved doing.
Art therapy such as music, painting, and dancing can really lift up spirits during treatment. It’s not uncommon for those battling cancer to experience emotions such as anger, confusion, and sadness. So, the opportunity to express these emotions through artistic outlets can be extremely helpful music is one of those outlets.
Two-time cancer survivor, Bianca Muniz, turned to music as an outlet during her experience with cancer. Her cancer journey began at just 11 years old when she was diagnosed with ovarian cancer. Then, at 22 years old, she was diagnosed with breast cancer. Bianca says that undergoing numerous different treatments did have an impact on her voice, but she never let that get in the way of her love of performing, and cancer actually served as a muse for creating new music.
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“This experience has had two different effects on my creativity and my music, so I’ve gotten a lot of inspiration from it,” Bianca told SurvivorNet in a previous interview. “But also the side effects of treatment, of chemo, and surgery have definitely had a little bit of a negative effect on my voice. Then again, I love performing. I always feel happy after I’ve performed.”
Have a Rare Disease? Here are Some Resources
All sorts of feelings of anxiety, fear, and loneliness can come with the diagnosis of a rare disease. But it’s important to know you’re not alone. Below are some helpful resources for the many people affected by lesser-known or less-researched diseases.
Academic Centers and Comprehensive Care Centers
For some rare disease warriors, community centers provide great treatment options. But for people with rare conditions, cancer or otherwise, more specialized care may be required. In that case, the most effective place to find a specialist is often at academic centers and comprehensive care centers.
In a previous conversation with SurvivorNet, Dr. Kenneth Miller, director of outpatient oncology at the University of Maryland’s comprehensive cancer center, explained what differentiates a comprehensive cancer center from other treatment providers.
Seeking Care at a Comprehensive Cancer Center
“Pretty much automatically, there’s going to be a team approach [to your care],” Dr. Miller said. “Surgical oncology, medical oncology, radiation oncology, and all the support services- and also wonderful pathology and radiology.”
Dr. Miller added that at a comprehensive cancer center, all of these different specialists work together as a team to help you find the best course of treatment for your specific kind of cancer.
“We call it a tumor board, a group to go through all the details of your case, so you get a group of very smart people coming up with a plan together that is hopefully optimal and gives you the best chance of doing well.”
Clinicaltrials.gov and the SurvivorNet Clinical Trial Finder
Another place to turn to when you’ve been diagnosed with a rare disease and you’re considering experimental treatment, or trying to find specialists, is clinicaltrials.gov – a database maintained by the U.S. government that compiles privately and publicly funded clinical trials conducted around the world.
Clinical trials themselves are research studies that compare the most effective known treatment for a specific type or stage of a disease with a new approach.
Clinical Trials Can be Life-Saving for Some
Clinicaltrials.gov can help you explore possible treatment options by looking at trials that are actively recruiting. The site also provides the information of some of the most specialized doctors in a specific field since they often end up leading clinical trials that advance our understanding of diseases.
By searching your disease on Clinicaltrials.gov, you will usually come across a list of many studies. The lead researcher will be listed under the heading, “Investigators.” Lead researchers in studies on rare diseases are typically doctors who have specialized in the study of that condition.
And if you’d prefer to search for clinical trials on a more user-friendly site, try SurvivorNet’s new A.I. driven tool built on top of clinicaltrials.gov: the SurvivorNet Clinical Trial Finder. This tool is updated daily and gives users access to more than 100,000+ individual clinical trials to help them find treatment options.
To use the SurvivorNet Clinical Trial Finder, simply answer some basic questions using our custom-designed chat feature and we’ll send clinical trial options within your region right to your email. In simplifying the search, we hope to offer multiple opportunities for clinical trial sponsors and clinical research organizations to engage with patients.
“Clinical trials are critical to the development of new therapies, and as we live through this extraordinary revolution in genomics, immunotherapy and targeted therapy, it’s clear that one of the most pressing needs for patients, clinical trials sponsors, and researchers is simply a better way to find patients,” SurvivorNet CEO Steve Alperin said. “Even one percent more people successfully enrolled in clinical trials can change the world.”
PubMed
Similar to clinicaltrials.gov, PubMed is another place to turn if you’re looking to research your rare disease. This website includes more than 33 million citations for biomedical literature from MEDLINE, life science journals, and online books.
If you type in your disease, you’ll see a list of studies and articles about the condition. You can even add a filter to only look at clinical trial information.
By looking at the doctors associated with the published clinical trial results and other articles, you may be able to find doctors that specialize in research for your disease.
Newly-Developed Drugs
For those who’ve been recently diagnosed with a rare disease, we also want to highlight reasons for hope since there is something of a revolution going on in the development of drugs for rare diseases.
The sequencing of the human genome has enabled doctors to take new approaches to treating some of these uncommon conditions. One step you may take after being diagnosed with a rare disease is looking into the drug companies developing drugs to treat your condition.
Compassionate Use and Off-Label Use
Drug companies may be able to help patients enroll in clinical trials, and in some rare cases, they may even be able to offer “compassionate use.” Compassionate drug use makes a new drug that has not been fully approved available to a patient facing a serious illness. This only typically happens when a patient has exhausted all other treatment options, but it is an important option to understand.
Similarly, researching drug companies may be a path to “off-label” drug use. Off-label drug use involves taking a drug that has been approved for treating one condition in the hopes that it may treat another condition that it has not yet been approved for.
Contributing: SurvivorNet Staff
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