Stories of Hope
We offer these stories as a way to give HOPE to those currently battling this cancer. You are not alone. Visit the NUT Carcinoma Support Page on Facebook to connect with patients and families impacted by this cancer.
Lynsey
“As hard as it is for me to deal with everything, I realize what a gift I have been given. To survive this cancer is a miracle. One thing I thank God for every hour of every day. I try to be a symbol of hope and bravery for those around me.“
Joe
“I had two options: live out the rest of my days without the exhaustive side effects of treatment or fight. I said, “Do whatever has to be done.””
Catherine
“My husband and I lived in Boston for the two months of my treatment. It was one of the hardest things I’ve ever done and took a toll on my body, mentally and physically. I was spiritually strong, which helped me make it through. I also had the love and support of my family, my siblings, and many in my community.”
Amy
“Prayer, quiet excursions in nature, my physical therapist, and a support system of family and friends made the worst days bearable.“
Raquel
“While it was a curse at the time, it has since become a blessing to have this appreciation for the simplicities of this beautiful life“
Gabriella
“Gabriella is here and our family cherishes the fact that we are able to enjoy her every day, but our life will never be the same as it was before NUT carcinoma.“
Diedre
“People may stare or ask questions and it doesn’t bother me a bit. I will gladly share and tell you all about it. Why? Because I’m more than willing to share about this horrible cancer with everyone and more importantly because I’m here to do it.“
Jenna
“I pray that my story can be one more story to help. My second reason for writing this is to continue to heal myself. Being a survivor of a cancer that says you can’t survive, is something I’m still working to understand every day.“
Jimmy
“I would not have been able to get this far without my wife, children, family, and friends from all across the world and their prayers, as well as the doctors, nurses, techs, and therapists that carried me along the way.”
Lynsey‘s Story
This is Lynsey, from Iowa. Here is her story of survival:
My journey started in July 2014, right before my 29th birthday. My eye was watering constantly. This turned into some sinus trouble, which eventually caused horrific headaches. My doctor eventually referred me to an ENT who thought the fix would be a simple sinus surgery. After this surgery, the doctor delivered the news that what he found was cancer. At first I was in shock, not realizing just what that meant. I was 29 years old. I wasn’t supposed to have cancer. I had a 2 year old and a 9 month old at home. I had other things I needed to be concentrating on. After the cancer was found I saw several doctors. Ultimately I was referred to the University of Iowa hospital due to the complication of the cancer being located in the sinus area. In November that year I had a major surgery to have the remaining cancer removed in my face as well as some lymph nodes it had spread to in my neck. This surgery went well but was extremely difficult on me emotionally. A couple of weeks later, the doctor called to tell me they had discovered the type of cancer I had was NUT midline carcinoma and that the odds of survival were minimal. My world crumbled and that was the first point that I remember breaking down and realizing just how scary this was. Trying to figure out my treatment plan was put into quick motion as we knew we had to act fast. My doctors consulted with specialists in Boston at Dana Farber where we visited for consultation. In the end we decided to start treatment in Iowa City the last week of December. The plan included twice a day radiation treatments to the head and neck area as well as 3 doses of chemotherapy spaced through that time. It was difficult enough going through treatments, but being 2 hours away from my kids was emotionally draining as well. My family was amazing stepping in to help and my saint of a husband was by my side every single second. He continues to be my hero and my rock. Treatments ended in February 2015. I have since been cancer free. However I still struggle daily with so many side effects from treatments due to the location of the cancer. I have had trouble with my ears, eyes, nose, swallowing…just to name a few. As hard as it is for me to deal with everything, I realize what a gift I have been given. To survive this cancer is a miracle. One thing I thank God for every hour of every day. I try to be a symbol of hope and bravery for those around me. I spend many hours volunteering for the American Cancer Society as it really has been a big help in my healing process. I don’t know if I have be right words to say to the members of this group. I understand the heartache some of you have endured but I hope that hearing my story and those of other survivors helps bring hope and comfort. Hope that we will find a cure, and comfort that we can all be there for each other until that day comes.
Joe’s story
This is Joe, originally from Minnesota, but living in Los Angeles, California. Here is his story of survival:
When I was thirteen years old, I went in for a seemingly minor surgery in March 2008 to remove a cyst that had been protruding from my chest for the last four months. I was going to get three days off of school, and you better believe I couldn’t wait for that. I took my “happy juice” and don’t remember falling asleep. The surgeons did their work. I woke up in a tiny grey room, not long after the surgery had been performed. My parents looked worried and uncertain. All I wanted at that point was some food. I’d been up since six in the morning and we were well into the afternoon. I wouldn’t eat for another agonizing couple of hours. Tests were done: bone scans, CT scans, blood work, you name it, I likely did it. By the end of that week, my primary oncologist had diagnosed me with Midline Carcinoma, the fourteenth known case worldwide at the time, and then informed me that a fist-sized tumor had been aggressively growing behind my chest wall for the past four months. Surgery was performed by the end of that week. As previously mentioned I could not wait to get three days off of school. With this particular surgery, I was to be put into a medically induced coma for at least three days (I woke up in three hours). I bring that up again solely to put this all into perspective. I ended up getting the entirety of my final trimester off due to my illness and my inability to muster up enough energy between treatments. What I mean to say is do not wish time away in this life. We all want breaks, no doubt. There is nothing wrong with that. However, life is precious and I learned this at a very young age. I didn’t understand this right away, but the further away I travel from those truly tumultuous years, I am still unraveling the mystery of what it all meant for me. Bit by bit, though, I am able to grasp a little morsel of the meaning everyday. Though, I think the point is that I’ll never fully understand it. I’m okay with this.
In the year following surgery, I did over a year’s worth of chemotherapy including six weeks of radiation. By the end of it, my body did feel broken. Over and over and over again, I took the blows. I didn’t really know why. I remember my Mom said to me once on the way to treatment that she was surprised and inspired by my fighting spirit to continue moving forward with treatment even though the effects it had on my body. I recall my next thought as something like, “I didn’t know I had a choice.” If I wanted to see this through, I had to do all that was asked of me. A year before the surgery, I could barely take an Ibuprofen. At the height of my treatment, I was taking at least thirty supplements a day. I no longer felt scared of surgery. Neither the taste of nitrous oxide nor the feeling one gets after having to inhale it frightened me. I walked into each new hospital room and laid down on that bed because I had to, I just did. By July 2009, I had been in remission for the last couple months. My port had been removed. My Make-A-Wish trip to Washington D. C., only a day away. A simple check-up CT scan turned into perhaps the most difficult moment of my life to date. The scan revealed at least a dozen nodules on each of my lungs. Completely inoperable. My family and I sat in this room; the blinds were pulled to better view the computer screen that displayed the results. My oncologist’s voice sounded so far away in my head. Tears welled up in my eyes, though my face showed no signs of contortion. My hands shook. I vividly remember my Mom weeping, my Dad looking down towards the ground, his hand holding up his head, and my brother who wasn’t there because we were so sure that I would be all right. And I thought in that moment how much I needed him. I left that room, went inside a bathroom, and looked in the mirror, thinking to myself that I will die. I pulled myself together and went back into that room. I had two options: live out the rest of my days without the exhaustive side effects of treatment or fight. I said, “Do whatever has to be done.” When I returned home, I went on a walk with my brother and a couple of family friends. I can only describe the state I was in as a twisted, hellish version of euphoria. I did more chemotherapy, about a half-year’s worth. However after the first treatment, no evidence of disease showed up in the following scan. The nodules were gone. Before this scan, my family and I had gone down to a place in New Orleans. We prayed there. Together, we prayed deeply as a family, as human beings, and we truly hoped that it would have some effect on the outcome. I’ve never prayed more in my life than I did during those two years. After six months, my oncologist opted to cease all treatment as he felt that I was no longer at risk of disease developing again. Since August 2009, I have been cancer-free.
In August 2013, I got to do something I thought would never happen in March 2008. Attend college. There, I studied my passion for theatre and acting. And I gave myself to it, my whole self. I met lifelong friends and found a new home. Learned even more about myself and I met people that had no idea that I was ever sick. I truly never believed, in my wildest dreams, that I would be allowed to pursue this passion or anything for that matter. But here I am, I’m healthy, I’m happy, and I’m out here doing it. As a young teenager, I used to think luck had something to do with it. I’ve since realized that luck played no part in this. The love and support of my family and friends, the hands of the surgeons, the mind of my oncologist, the prayers that were quietly uttered by so many before bed, and the fact that I never gave up. All of this, and so much more is why I am here today. In the Summer right after I had stopped treatment, I was in a theatre camp in Chanhassen. I did the final monologue from The Glass Menagerie. Last Summer, I took on the role of Tom Wingfield on stage and performed the monologue again. There’s a line in there, “For time is the longest distance between two places,” and it has never been truer for me than it is today.
Catherine‘s Story
This is Catherine, from Oxford, Mississippi. Here is her story of survival:
In late August of 2013, I noticed some swelling in my upper right gum, surrounding my teeth. I was 56 years old at the time and thought maybe it was a part of aging. I had no pain. Could my teeth be shifting? NOTE: Six months prior, I had a routine dental exam and nothing showed up on my x-rays. This indicates how quickly this cancer can appear.
I went to my dentist. After taking x-rays, he noticed something unusual. He sent me to an Endodontist, thinking I might need a root canal. That was not the problem. My Endodontist then sent me to an Oral Surgeon who did a biopsy on my gum. On September 4, 2013, I received news of a MALIGNANT TUMOR in my upper right jaw and maxillary sinus. I was stunned. I was in disbelief. I was numb with fear. I was the healthiest person I knew! I was a yoga instructor, a vegetarian, walked daily, did regular meditation, never smoked, didn’t drink, rarely took ANY kind of medication…. HOW COULD I HAVE CANCER?!?
My husband and I live in Oxford, Mississippi. A surgeon in Memphis, Tennessee was recommended to remove the tumor. After a consultation with him, I declared I could not go through with the very radical, invasive surgery that would need to be performed in order to survive. It required removal of my upper right jaw and sinus…possible feeding tube…possible tracheotomy. I was told that if I did nothing, I had six months to live.
Our daughter and her husband researched the best possible hospitals in the country. We decided on Johns Hopkins in Baltimore, Maryland, with a scheduled surgery of September 23, 2013.
NOTE: All these doctor appointments occurred over a span of four weeks….from discovering something was wrong, to diagnosis, to surgery.
Please hear me: Time is of essence with this cancer.
After an 11-hour surgery of removing the tumor, and rebuilding my jaw, a pathologist at Johns Hopkins discovered that it was not the original diagnosis I had received. Yes, it was still a malignant tumor, but the pathology report was NUT Midline Carcinoma. Of course, we had never heard of it, and at the time of my diagnosis, there were less than 200 cases worldwide. None of the news the doctor gave us was good. My reconstruction surgeon handed us a sheet of paper with Dr. Christopher French’s name and contact information. He said, “We don’t know much about this cancer, but this man does.”
My husband immediately contacted Dr. French at the Brigham and Women’s Hospital in Boston, who set us up with Dr. Nicole Chau, a head and neck oncologist at the Dana Farber Cancer Institute in Boston, Massachusetts. She would be my lifesaver for the next five years.
After many tests and scans at Dana Farber, Dr. Chau made the recommendation of 32 radiation treatments to my mouth, in conjunction with 5-6 chemotherapy treatments. This took place six weeks after my radical surgery at Johns Hopkins. My husband and I lived in Boston for the two months of my treatment. It was one of the hardest things I’ve ever done and took a toll on my body, mentally and physically. I was spiritually strong, which helped me make it through. I also had the love and support of my family, my siblings, and many in my community. I finished treatment right before the Christmas of 2013 and went home to recover. It took me most of 2014 to fully recover.
For 5 years, my husband and I have made over 20 trips to Boston for checkups and scans. I’ve had a few “scares” which involved a few biopsies, but I remain cancer-free with no recurrence. There are few survivors of this cancer, and I have met most of them, so I can say with certainty that most of us who have survived NMC have scars and side effects from surgery and treatment that are daily reminders of what we have been through. Even surviving is not easy.
Many ask me how I did survive this often-fatal cancer, so I will summarize it for you:
1) EARLY DETECTION: As a yoga teacher, I always emphasized to my students to “Know Your Body”. This advice served me well in my case, but this can be difficult when NMC presents itself in an organ such as the lungs because often the patient (especially if they are young and healthy) thinks they have bronchitis or pneumonia, or some other respiratory infection that can be cured with antibiotics. They try meds and then discover they have not gotten better. Many times this cancer is too advanced and has spread by the time it is accurately diagnosed. Also, oftentimes this cancer is misdiagnosed, which poses problems, but hopefully more hospitals now know to test for it.
2) RESECTION OF TUMOR: This needs to be done as soon as possible, before it has a chance to metastasize to other parts of the body. Do not postpone surgery!
3) RADIATION, in combination with CHEMOTHERAPY TREATMENTS: After the successful removal of my tumor, we wondered why radiation and chemotherapy were necessary. Because this cancer is so aggressive, my doctors at the DFCI knew we couldn’t take any chances and had to target any hidden cancer cells.
4) WORLD-CLASS MEDICAL CARE: If you are not able to travel to one of the bigger hospitals in the country, make sure your doctors are in contact with those who are familiar with this cancer! I highly recommend the Dana Farber Cancer Institute, as they know the most about NMC and they also have the NMC National Registry.
5) A LOVING AND SUPPORTIVE COMMUNITY OF FAMILY AND FRIENDS… This was vital to my wellbeing and I was carried by the love of so many. NOTE: I believe in God, but I do not believe that God chose me to live over others diagnosed with this same cancer. I’ve met many along this path that I would have been willing to trade places. My heart breaks every time we lose someone to this awful cancer. As a survivor, I give thanks for my life by giving back.
Speaking of giving back…We have Holli Nelson of Minnesota to thank for our Facebook support page. She started it after her husband, Jon, died of NMC in 2012. In the middle of my treatment, I vowed that if I survived this cancer, I would spend the rest of my life helping others diagnosed with NUT Midline Carcinoma. I have kept my promise. I manage the NC Support Page on Facebook and keep track of all the families in this small cancer community of ours. It is my sacred honor to do so.
Amy‘s Story
This is Amy of Bryan Mawr, Pennsylvania. Here is her story of survival:
My name is Amy Haugh Dodds, and I am grateful to be a four-year NUT carcinoma survivor and offer this brief synopsis of my experience if it may bring hope to others. A multitude of details and emotions are truncated here for clarity, but I’m eager to share whatever details a reader seeks if it may bring more clarity or comfort to you or your loved one’s journey. My NUT carcinoma story began in spring 2019. I had been sensing a lump when I swallowed and saw a local ENT when I discovered a palpable lump in my right neck. The ENT immediately scheduled an MRI and sent me to my lifesaving otolaryngologist and oncology team at Jefferson Hospital in Philadelphia, Pennsylvania. A biopsy confirmed cancer and surgery was scheduled to remove the tumor from a lymph node in my neck. I underwent an extensive partial right neck dissection which eliminated the tumor and removed surrounding tissue, with my suspected tonsils also removed. The hope was possibly a few rounds of chemo and nothing more. The tonsils ended up being healthy. Cancer was confirmed as NUT carcinoma with unknown origin. I completed 33 days of radiation punctuated with two horrible rounds of Cisplatin chemo… I could write endlessly about those days. My radiation team was incredible. My lowest point emotionally was towards the end of radiation when eating was impossible, my neck was burnt, raw and painful, and my mind would not rest. Mindfulness, prayer, family, friends, and time spent in nature, punctuated with a few psychotherapy appointments and anxiety medication all kept me sane. I am also grateful for my physical therapist who assisted me in maintaining my initial range of motion and provide me physical and emotional support throughout.
Round two occurred during the initial months of COVID-19, adding another layer of concern – would the hospital consider my surgery essential? Would I and my surgical team remain healthy? A long existing lump on my scalp had been biopsied in Feb 2020 and found to contain NUT. Two straightforward surgeries resulted in a clean margin with no further treatment needed. This is now thought to have been the original site of my cancer.
Through routine PET scans it was apparent that NUT had returned in spring 2021 to my right parotid gland. COVID-19 concerns still clouded the healthcare scene. Round three involved surgery to remove the tumor and a novel procedure of placing radioactive cesium beads in the tumor bed. Same fabulous otolaryngology surgery team and – no follow up treatment needed!! I was radioactive for several weeks but never felt ill from radiation. All scans since have been clear! Continued physical therapy and daily stretches help with residual tightness and associated nerve pain in my right neck. I’ve also lost my perfect hearing thanks to Cisplatin treatment, but don’t believe my hearing is unlike that of many people my age. Visible neck scars from surgery and radiation are slight and I wear them with pride – they mark me as a survivor. Remarkably, my initial cancer journey coincided with my enrollment in a long anticipated 8-week mindfulness course that brought an immeasurable sense of peace to my thoughts and allowed me strength in my journey. Prayer, quiet excursions in nature, my physical therapist, and a support system of family and friends made the worst days bearable. I am followed by my otolaryngology surgeon who I see every three months, and my once quarterly scans are now an every 6-month occurrence.
I am optimistic that others here will be survivors of NUT and the next to share their stories, and that medical knowledge will continue to provide us successful, less invasive treatment of this horrid cancer.
Raquel’s Story
This is Raquel of Tell City, Indiana. Here is her story of survival:
“….you have NUT Midline Carcinoma. It’s a rare and aggressive form of cancer…due to a gene mutation…you need to go to a university research hospital for treatment…”
Those were the words coming from the other end of the phone to me on this warm summer day. I was confused and doubting the accuracy of these results of the biopsy that was performed on me just a week or so prior.
I was a 47 year old woman. I felt perfectly fine, other than this nagging persistent sinus issue I was having for the past 4 months or so. Of course, as I know that I should not have done, I researched the internet for information. I discovered, as I read the apparent same article that my ENT had just verbalized to me, that this cancer is often resistant to treatment..and prognosis from onset was 6-7 months.
And of course…I was floored. I was confused and angry…thinking there is no way possible that I have this. As my ENT Dr advised me, I contacted Dana-Farber Cancer institute in Boston, Massachusetts. Being from a small town in Indiana, it was a huge leap of faith that I was encouraged to take from family and friends.
As I was there, sitting with the doctors I was relieved to hear that they believed with surgery, radiation and chemo..that I should be able to survive this cancer.
This initial consult was August 31, 2020…and yes, I am still here! Three years ago, and I have survived.
The tumor was located in my left nostril. I underwent surgery to have it removed. I also had several lymph nodes in my neck removed as well for extra precaution. The surgery was pretty intense. The surgeon performed a forehead flap surgery after removal of the tumor. After about a week in the hospital, I was sent home to heal for 6 weeks. After which time, I would then begin my 30 rounds of radiation and 6 rounds of chemotherapy.
“Home” at this time was Boston, Massachusetts. At that time, my husband and I had a 20 year old daughter starting her second year at Indiana University, and an 8 year old daughter who would turn 9 years old just 3 days after my initial surgery.
As my husband stayed home with our daughter, my sisters accompanied me on this adventure. One at a time..each for approximately 6 weeks. I was blessed and grateful and ever thankful for that, as well as all my other family, friends and coworkers who were rallying behind me. That is one of the most powerful and positive things of being just a small town girl…everyone knows everyone..and no one fights alone.
Luckily, I was able to return back home to my small town for 3 days before I had to begin my treatments. I was overwhelmed with all the love and support for me and my family that it energized me to stay positive and keep fighting like the warrior that they believed was in me, of which I too felt, was now a part of me…my new identity.
So, back to Boston I forged on. My oncologist warned me that at approximately half way through the treatments would be when I would begin to feel the ill effects. And he was right. I was exhausted, my mouth was full of sores, and I was nauseous. Unable to eat or drink anything of much substance, that morning of my 4th round of chemo I asked to see my doctor before receiving anymore treatments. While I wasn’t wanting to walk away from the treatments, I knew I was failing with my nutrition part. I asked my doctor to place a feeding tube in me, because I didn’t feel like I was gonna survive otherwise.
Of course, my doctor agreed with my request and needs. This time I had to spend approximately 2 and a half weeks in the hospital. My numbers had to be right for the surgery, and then there was the factor of my body accepting this new nutrition drink. During this process, I continued with my radiation treatments, however the chemotherapy treatments were stopped.
After all this, I was free to return home December 21, 2020. It was the best Christmas gift ever to be at home and alive with my family around the tree and lights and all. Not only was it a time of healing and adjustments, but it was also a time of personal reflection and gratitude for just the absolute simplicities of living.
February of 2021, I would return to Boston for my first of what ended up being, several reconstructive surgeries. I ended up having 9 total surgeries that year. Due to the radiation in the thin sensitive nasal area close to my eye, the skin and nerves would not heal properly. Within about 2 weeks of the operations, the skin would open and I would have to return to Boston once again.
Finally, in December of that year, I researched other options. I decided to visit Medical Arts Prosthetics in Madison, Wisconsin. There, I saw an anaplastologist who designed a nasal implant for me. I was relieved and grateful to have found him.
I returned to work full time in February of 2022.
I have since had numerous scans and check-ups, and I am proud to report there have been no signs of reoccurrence as of yet. I know see my local oncologist every 4 months. I feel stronger and more healthy than ever in all of my, now, 50 years of life.
I never forget, nor take for granted, that I am one of the lucky ones to have survived this cancer. It wasn’t easy..and some days I still struggle with the after effects. I would never wish this, or any other cancer on another person, ever.
But, if anyone ever needs a lesson on life and what is important and what is insignificant, have them sit in a room with one of us warriors for an hour. I know my soul and spirit has been forever changed. While it was a curse at the time, it has since become a blessing to have this appreciation for the simplicities of this beautiful life.
My advice for those of you or your loved ones going through this..follow the doctor’s orders. But, listen to your own body and gut. Speak up, and don’t ever give in to this beast.
Know your people, and love ’em hard and never be afraid to do the hard things. One day, you may need them to get you through this hell, just like they may need you someday in return.
I’ll just add one more thing, not all of us get to sit here and speak of this trial, so speak it for them loud and proud…And never fear your scars or what you may think are imperfections. In the end, it is what makes us even more beautiful.
Gabriella‘s Story
This is Gabriella. Here is her story of survival:
Gabriella Heidorn, now 16 years old, was diagnosed at age 13 with NUT carcinoma. The tumor grew in her submandibular salivary gland and she had a resection removing her salivary gland, tumor, and all lymph nodes on her left side on December 28, 2017 at St. Louis Children’s Hospital. Due to the aggressiveness of the cancer, she went through 33 radiation treatments and was admitted into the hospital for a five day regimen of twelve chemotherapy treatments every three weeks for nine months.
Gabriella was an energetic, outgoing and creative young person. She played competitive softball and volleyball. Her artistic abilities are amazing. She has been drawing since she could hold a pencil and has had many paintings, drawings, and creative pieces of artwork highlighted at her school district since she was in kindergarten. Most impressive of all, however is the fact that she self-taught herself how to do many difficult gymnastic moves. She fell in love with gymnastics in mid-2017 and was able to do an aerial, back handspring, back tuck and much more. Gabriella is an inspiration to so many people who know her. Unfortunately, her cancer treatments halted a lot of that. She is a survivor of NUT carcinoma but was not able to be competitive in her sports like she was pre-cancer.
NUT carcinoma is devastating and the treatment to rid the body of it is just as devastating physically as it is mentally. Gabriella is here and our family cherishes the fact that we are able to enjoy her every day, but our life will never be the same as it was before NUT carcinoma. Gabriella is a thriving 16 year old who has a job, friends and is an honor student. She is going to do great things with her life. We thank God every day that the one doctor at Washington University who was educated on NUT carcinoma and sent her biopsy off for a secondary lab test. If not for him, she would probably not still be here. Our family truly hopes this helps all those whose lives are touched by this deadly disease.
Diedre‘s Story
This is Diedre. Here is her story of survival:
Hello, My name is Deidre Reisinger. My story is somewhat of a cautionary tale. The moral of this story? Trust your gut instincts and always advocate for yourself.
My official date of diagnosis was February 26, 2020. But first, let me tell you how we got there:
In November of 2019 I started having a strange sensation in a tooth in my upper left jaw. I went to the dentist and they found nothing out of the norm. I was told it was probably just sensitivity and to try changing to a sensitivity toothpaste. Fast forward through the holidays and all the business that entails to January with no improvement and a new symptom of some slight facial swelling. Back to the dentist to be told that I had a “gum” problem not a tooth problem and needed to have two teeth pulled. He said that something probably got behind the tooth and caused an infection which was causing the swelling in my face. Two teeth pulled, antibiotics prescribed and home I go. Two weeks later and no change, back to the dentist. I was put on a different antibiotic and told the infection was probably just drug resistant. A few days later with no improvement and now a bump in the roof of my mouth, I decided there must be something else going on and went to the emergency room. And off we go…
Get checked in at the emergency room, have a CT scan and then get the most terrifying news I’ve ever heard to this point in my life. There is a growth in my left maxillary sinus cavity. It has eroded the bone in the bottom of my eye socket and upper jaw. That is why my tooth felt strange because there was no longer enough bone supporting and the teeth never should have been pulled. Which will become a moot point in a couple months anyway. I was referred to an ENT. Saw him and was scheduled for a biopsy on February 19, 2020. Got the call that the results were back and scheduled an appointment to discuss those results on February 26th. I was told “You have a very rare and aggressive cancer. It has a 37% survival rate outside of one year.” The official diagnosis I was given was Sino-nasal NUT Midline Carcinoma. And everything changed.
Now that we had results, I was referred to an oncologist and scheduled for a consultation on March 9th. My father told a friend, who had a friend that worked in oncology at Banner University Cancer Center in Tuscan, Arizona. When she heard my story, she called my dad and said “Nope, she’s coming here” and had me scheduled for an appointment with the Banner University Cancer Center the next day. This is where I begin thanking God for taking control of everything that follows.
I quit my job that day and was determined to fight with everything I had in me. I saw oncology at Banner, was referred to their ENT (who it turns out, trained the ENT I was first referred to!), referred to surgery. Enter Covid. Surgery scheduled and then rescheduled. Lots of protocols, testing and isolation and we are finally cleared for surgery on April 3, 2020. Surgery entailed the removal of my left eye, sinus cavity, half of my upper left jaw and lymph nodes in the left side of my neck. A flap to fill the void was taken from my left thigh. Ten days in the hospital with no visitors due to Covid protocols and then home to recover. A couple weeks to heal up and we start 30 rounds of radiation therapy and 3 rounds of chemotherapy. Which kicked my butt! Constant fatigue, nausea, vomiting and loss of appetite not to mention hair loss and 50 pounds dropped. Fast forward another couple of months and I’ve survived but we weren’t done yet. In July I noticed a small lump just in front of my left ear. In for scans and found that my left parotid gland was involved. I did receive the good news that the doctor’s didn’t believe it was a new occurrence but rather something that was missed because it was so close to the periphery of what was removed in the first surgery. I was scheduled for a second surgery to remove it and 5 more rounds of a higher dose radiation treatment. Another short hospital stay and home to recover. Or so we thought…
A few hours after my discharge I got a phone call that they had seen something on the scans they did before I was released. I had a pulmonary blood clot and needed to come back in immediately to be readmitted and started on blood thinners. After my release, I would have to continue the blood thinners at home via self-injection for six months. I recovered from all that only to develop a C. Diff infection and spend another few days in the hospital on IV antibiotics fighting that.
It’s now November and I’m doing really well. I’m scheduled for a small sinus surgery to try and keep my left nostril open and improve my breathing. The holidays were the best we’ve had in years. We were all so appreciative and truly grateful to even be all together. In January 2021 I went back to work and in June, I bought myself a survival gift and got a new car.
After many, many appointments, multiple PET scans and MRI’s, I had one more surgery (in April 2023 to debulk the back of my flap and remove scar tissue from my sinus cavity). I am now breathing great and doing wonderful, living life more grateful than ever. As of April 2023, I am cancer free 3 years and counting. I have had clear scans and been given the ok to discontinue PET scans. I have a CT scan and MRI scheduled for May 2024. I have diminished hearing in my left ear, limited range of motion in my jaw, which makes eating interesting and some scar banding on the left side of my neck. My thyroid is no longer working correctly and at 50 years old, I am in menopause (thanks to the radiation and chemo). I might look a little different but I AM ALIVE.
I have been called a miracle, my medical journey has been shared at multiple tumor board meetings and published in medical journals. None of which would have been possible without the most amazing teams of doctors and nurses at Banner University Medical Center (both Hospital and Cancer Center), my family, friends and most importantly God. If it wasn’t for all the support from my husband and father, the dinners and encouragement from my family and friends, I don’t dare to think how different things could have been. I am thankful and beyond grateful for every day that I wake up and am given the opportunity to appreciate the beauty and possibilities around me. People may stare or ask questions and it doesn’t bother me a bit. I will gladly share and tell you all about it. Why? Because I’m more than willing to share about this horrible cancer with everyone and more importantly because I’m here to do it.
Jenna’s Story
This is Jenna. Here is her story of survival:
My name is Jenna Thurin, and I am a NUT Carcinoma survivor. We are few, but we exist. I have written this story for two purposes. First and foremost, to offer Hope to a community that desperately needs it. I joined this community three years ago when I stumbled upon it during my desperate google searches about NUT, because I. Was. Scared. When I read Catherine’s story, I found a glimmer of hope. I scoured the NUT Carcinoma page for more stories of hope. There is very little out there to help when you find out about NUT. I pray that my story can be one more story to help. My second reason for writing this is to continue to heal myself. Being a survivor of a cancer that says you can’t survive, is something I’m still working to understand every day. So here it goes…
I was 36 years old when I found out that I had cancer, in October of 2020. I just had a new baby boy about 6 months before my diagnosis in March. I also had 3 more sons (at the time, ages 3, 11 and 13). The tumor that I noticed in July of 2020 was on the roof of my mouth, off to the left side, right where my soft and hard palate come together. In the approximate 3 months leading up to my initial cancer diagnosis, it looked like a canker sore on the roof of my mouth, but it continued to morph and change to the point that I knew I should get it looked at. I showed it to my dentist, who then sent me to an Oral Surgeon to have it biopsied. They both thought it looked very much like Necrotizing Sialometaplasia, but they had it biopsied to be sure of it. On October 8th I received the call that I had Cancer. My original diagnosis was “Squamous Cell Carcinoma Undefined.” I was then sent to Froedtert and the Medical College of Wisconsin to see their Head and Neck Oncology team. The Oral Surgeon assured me that they were the best and that I would be in good hands.
Once I met my Oncology team, things moved FAST! I had a Head & Chest CT done on October 19th, and met with my doctors on October 20th. They came up with a plan to immediately remove the tumor. Following this appointment, I also had an Ultrasound done on my neck to take a closer look at my lymph nodes, and a biopsy done on my thyroid. My surgery was on November 2, 2020. I was in the hospital for a week, away from my family which was HARD. I had babies at home. The surgery was very successful; they ended up removing 21 lymph nodes from the left side of my neck, the 4 cm benign mass from my thyroid, and the 2 cm cancer tumor from the roof of my mouth. The surgery took about 9 hours in total. Afterwards, I was placed on a feeding tube, due to the new “skin flap” that was now on the roof of my mouth from my arm and the extreme difficulties I would have with eating. My left arm had 20 staples, a vacuum dressing and multiple drain tubes. The same was true for my neck. All of this was extremely scary to wake up to, but they told me the Cancer was GONE! I had a long recovery road ahead, but getting home to my family was exactly what I needed to raise my spirits.
About a month later at my first surgery follow-up appointment, my doctor told me things were looking good, but that she was still trying to pinpoint the exact mutation that my mouth tumor was. They were still waiting for my final pathology report at that time. She expressed that my lymph nodes looked clear. She also alluded to the fact that things weren’t necessarily adding up for how quickly my tumor mutated, and she wanted to know about how aggressive this tumor was. She told me she would hopefully know more at my next follow up appointment. They removed the 20 staples from my arm and snipped the stitches in my neck incision.
Then on December 1st, 2020 I had my second follow up with my surgeon. She explained that they had sent my tumor out to Mayo clinic because something was just not adding up. It was on that day that they re-diagnosed me with NUT Carcinoma. I was told that it is a very rare, very aggressive type of cancer. So rare, that there are very few cases to compare to. I was warned not to Google it, but I did…. They reminded me that I am not just a statistic on Google, I am me. She reassured me that all 21 lymph nodes were clear, and that her margins around my tumor were clear on both sides. She also explained that it had not invaded any muscle or bone. These were all good things but the facts of NUT were too scary to ignore. They named my cancer a Stage 2 cancer. Due to this new diagnosis, my original plan of just having surgery changed. Immediately they wanted a full body PET scan within the week, as well as being set up for Radiation.
After this, things moved quickly again. I met two new doctors that advised me to do 6 weeks of radiation to my mouth and both sides of my neck. They did not recommend chemotherapy at this time. I was petrified, but one of my favorite nurses reminded me that it is good to have a plan. December 4th, 2020 I was fitted for my radiation mask. I had my PET scan on December 9th, and was probably just as nervous for this as I was for my surgery. On December 11th my nurse called to tell me that the results of my dreaded PET scan were in, and that I could come in or hear it over the phone. I decided to take the news over the phone, but waiting for my doctor to call me back was grueling. Waiting, I learned, is one of the hardest parts of a cancer journey. Sure the medical parts are terrible, but it’s the time spent waiting for something to happen, to learn something, to find something, that really plays with your head. Finally the call came through from my doctor, that my scans were CLEAR!
Before any treatments began, I wanted to talk to a doctor from the Dana Farber Cancer Institute in Boston, who specializes in Rare Head and Neck Cancers. On December 16th, Joe and I had a virtual consultation with Dr. Glenn Hanna from DFCI. Thanks to Covid (yes I did just thank Covid for something), we were able to meet him virtually out of the comfort of our own home, rather than fly out to Boston and make millions of arrangements for our family! In conjunction with my amazing team at Froedtert, talking to him is just what we needed. He had studied all of my scans, my surgery, and all the notes that go along with it, and said Froedtert, the Oral Surgeon, and even my Dentist did 100% all of the right things in handling this with such speed. Even though they weren’t aware at the time of how aggressive this cancer is, they quickly did everything they needed to, to get it out of my body.
He completely agreed that it was best to radiate the areas that the cancer was, as well as both sides of my neck. He also said that doing chemotherapy (Cisplatin), coupled with radiation 1x a week (for 5-6 weeks) was non-negotiable. Those were his words, non-negotiable. He said to take no chances with this sneaky cancer. So there it was, the complete plan to keep me cancer free; 30 rounds of radiation and 6 rounds of chemo.
On December 17th I began my first day of radiation, and on December 22nd I started my first round of Chemotherapy. These six weeks were LONG. These six weeks were not pretty. These six weeks I had the help of so many to keep our family afloat. Radiation is not nice, especially when radiating your head and neck. Eating was almost impossible eventually, but I followed the nutritional goals they set for me even though it was hard. Chemo was not fun in any way shape or form either, but I just wanted to get it done and over with. I wanted to fight.
On January 14th, Dr Hanna called to tell me that he had the findings of my NUT tumor from Dr. French’s pathology report. He went over the molecular level findings of my tumor that Dr. French dug deeper into. It turns out that my protein rearrangement that caused this cancer to grow is not the common rearrangement (but I was told this was a good thing with a better prognosis). He also said that I would be a good candidate for immunotherapy about 2 months after my radiation and chemo treatments end, pending a clean PET scan. Dr. Hanna shared all of this with my team in Wisconsin, and we added Immunotherapy (Keytruda) onto my plan.
On January 25th I finished my last chemo treatment, and January 29th my last radiation treatment. Ringing the bell for both of these occasions was momentous, emotional, and an experience I will never forget. I lost hair, my face and body changed, my scars were a daily reminder of what I had just gone through, and it was something my memory can never erase.
I had a small break in treatments, then on March 23, I started my Keytruda Immunotherapy treatment. When I tried to learn more about why I was doing immunotherapy, I learned that they were able to see what immune levels were present in my body when my tumor appeared. They said it was on a scale of 1 to 100, and my body was showing at a 30. This meant that my body was trying to fight my cancer! My doctors said for a NUT Carcinoma patient that is high (which is good), and that it meant I would be a good candidate for immunotherapy. The immunotherapy would help boost my body’s ability to fight any cancer cells. I continued doing Keytruda for a whole year. Walking out of that infusion room for the last time was strange. It had been a place for me for so long. Fast forward, I continued having CTs every 3 months for the first year. Then every 6 months for the second year. This past year I have continued every 6 months by choice, and I will move to yearly scans starting in February 2024.
This was a long story, so thank you for sticking with me till the end. NUT Carcinoma is a terrible disease, and an unknown disease. If you’re searching for answers, light, hope, or community, I hope you find it here or somewhere. I could never have done this alone. There are approximately 500 known cases in the world and less than 20 survivors. This doesn’t sit well with me and I hope we can continue to fight this fight together as a community. Please feel free to reach out if you need support, an ear, or anything else.
Jimmy’s Story
This is Jimmy. Here is his story of survival:
My name is Jimmy Kudakachira, and I am a NUT Carcinoma survivor. As a promise to my friend and hero, Catherine Burke Crews, who is completing her life’s journey, I have decided to share my story. As all of you know, this disease is very aggressive, and the likelihood of survival is very minimal. I won’t get into the statistics because many of you have already experienced tragedy and grief from the journey. On July 4th, 2017, my wife and I were blessed with our first daughter, Jiya (pronounced Gia). Within a few months of her being born into this new world, I was hit with the shock of my life. I had an incidental finding in my sinus after an injury during a pick-up basketball game at a local gym.
Fast forward: we get an MRI, a biopsy, and the most shocking diagnosis and prognosis that could possibly exist. When we heard the statistics, we had to accept the fact that we were on the clock. During that journey, so many people contributed to keeping up our hope and keeping faith alive, most importantly Catherine Burke Crews. We live near Philadelphia, so our hospital was Penn Medicine, and their team did an extraordinary job with a cancer they had never treated. With the help of the tumor control board, Dr. Christopher French, and others from the Dana Farber Cancer Center, we got the tumor out and did both radiation and chemotherapy.
This year will mark 7 years since the discovery of the cancer. I have so many post-treatment symptoms, including a loss of energy, taste, and smell. That doesn’t include the mental toll this has taken on with depression and anxiety. But on the flip side, I am still here today to complain about those issues when so many others do not have the same luxury. On July 15, 2022, we were blessed with another daughter named Kayla. After several months, we realized she had special needs and was diagnosed with genetic testing for a rare disease called Pitt Hopkins syndrome. The first thing we did was ask if there was a link to my cancer. So far, they have found no correlation between the two. Maybe this is the reason God chose to keep me around a bit longer? Either way, I would not have been able to get this far without my wife, children, family, and friends from all across the world and their prayers, as well as the doctors, nurses, techs, and therapists that carried me along the way.
My heart shattered when Catherine told me her journey was coming to an end. But she also reassured me that the choice was hers and not the actual return of the NUT. I respect and actually understand that decision. I wish my friend the best, and I send my love and prayers to all those who have suffered along the way and/or have only started their journey.