Bone Cancer Survivor Stories

Here we share 6 stories of bone cancer fighters and survivors and their favourite quotes.

Ewing’s Sarcoma Patient Shares His Journey

Favorite Quote

“Try to change what you CAN control, not what you can’t control” –Tim Likos

Tim Likos was diagnosed with Ewing’s Sarcoma in April 2016. He successfully defeated his disease but was again diagnosed with cancer in April 2018.

Diagnosis

“In April 2016, diagnosed after pathology results from skull resection came back positive for Ewing’s sarcoma. They couldn’t tell on the scans what it was.”

The Journey

“Up and down. I think being treated at Peter Mac has made a massive difference to my journey. They have a great support system for patients which I have utilised. It’s been tough to go through it physically and also mentally and watching my family worry about me.

I’ve had 2 surgeries on my skull, 14 rounds of chemo and 5 weeks of  radiation (2016-2017), then re-diagnosed in April 2018 when I had a distal femur resection, emergency surgery for a massive bleed from a vessel in my leg where I lost 2 L of blood. Still have ahead: surgery to remove 2 spots on my lungs, radiation to my left hip, a stem cell collection, high dose chemo, then the stem cell transplant all to come.”

Motivation to fight cancer

“My family and the need to beat it to watch my kids grow up!”

Biggest hindrance

“I didn’t expect the recovery from my leg surgery to be so brutal. It’s been a battle learning to do things differently as I can’t do half the stuff I used to be able to do.”

Message to other cancer patients

“Believe, stay strong but also know its OK to have your shit days too.”  

Ewing Sarcoma Survivor Now An Author

Favorite Quote

Do not make permanent decisions based off of temporary feelings” -Brandi Benson

“My journey of cancer was scary as we all can imagine. I was just 24 years old and was deployed fighting for my country. I discovered the tumor on January 17th after a workout I had and, this discovery propelled me into action. I was sent to Baghdad, Germany, and then finally Walter Reed in DC – where I received nearly 90 rounds/cycles of chemotherapy, where I learned how to walk again and where I had to test both my mental strength and faith. It was at Walter Reed where I made some great friends that would all pass away due to their cancers and where I discovered a new passion for my life.

During my time here, I wrote a journal that detailed my daily routines, my secrets, my failing marriage, my fears and my happy days. I vowed to myself that if I lived, I would turn this journey and journal into a book. I am proud to say I kept my promise to myself. I have published my book, and it is titled “The Enemy Inside Me” and can be purchased on my website: www.BrandiLBenson.com . My hopes of this book are to encourage others and not to get lost in the clouds of depression.

I was faced with a very rare and aggressive cancer. The doctors were scared for me and even threatened to amputate my entire left leg starting at my hip bone. They said I would never run again. They said my life would change forever. I am a testament that with my strong faith and my amazingly supportive family, I lived. And not only did I live, but I have my leg, I compete in long races, and my life is better after cancer. I was not ready to let the blanket of death cover me. My will to live was too strong and so should everyone!”

Motivation to fight cancer

“My motivation to fight cancer was my family. Particularly my nephew, Donavin. He was three at the time and I wanted to watch him grow up and play sports and be great. I did not want to leave this earth and my nephew barely knowing me or having any memories with me.”

Biggest hindrance

“My biggest hindrance with this journey was my faith. This event truly tested my faith. Before this experience, my faith in God was not strong, but I am here before you now to say that there is a higher power and a spiritual world at work that our five sense cannot comprehend. After this traumatic event, my goal is to become an ambassador and talk to patients and survivors to give them real hope and real advice.”

Message to other cancer patients

“My message to others going through this patch in life is: never give up. We are the masters of our lives. We say when it is over. Our bodies are created to heal ourselves. When we get a scratch, a scab grows. Our mind and body are strong than we think and know.”  

Osteosarcoma Survivor Now A Talented Dancer

 

Favorite Quote

“Dance, dance for today and dance for tomorrow.”

 

Valory Newton was diagnosed with osteosarcoma on November 19th, 2014. She has successfully defeated her disease. She is a dancer and a “Dancers Against Cancer” junior hope ambassador.

 

The Diagnosis

She was diagnosed with osteosarcoma on November 19, 2014, in left lower leg.

 

The Journey

 

“On November 19, 2014, I was diagnosed with osteosarcoma of the left lower leg. I was just 9 years old at the time. I had to travel to Columbus Ohio to visit a specialist in bone cancers. On December 6th, 2014, I started my first chemotherapy and after several treatments on February 27th, 2016 I had limb salvage surgery to remove the tumor and a portion of my lower leg bone along with the nerve that runs down the lower leg.

 

Approximately one week later my mom got a call from the specialist saying they got most of the tumor and while the tumor was 95% necrotic the 5% that wasn’t necrotic was up against the other bone in my leg that wasn’t removed, so myself and my parents made the decision to amputate just above the knee to reduce the chances of recurrence of the tumor. So on April 23, 2015, I had an above the knee amputation and we had a specialist that had never done surgery on a kid and only on wounded soldiers get special clearance to so nerve innervation post the amputation.

 

At the time of the surgery, I was the only kid in the world to have this nerve innervation done and only ten had been done in the United States and only 100 in the world at the time so I considered myself fortunate and special. After my surgery, I continued to finish my chemotherapy and on December 21, 2015, I finished my chemotherapy. Today I am 3 years cancer free!! During my chemo and surgeries, I continued my passion of dancing and competing the dance community has been one of my biggest supporters.”

 

Motivation to fight cancer

“My motivation was my family and my love of dance.”

 

Biggest hindrance

“Being away from family and friends and spending the rest of one year in the hospital.”

 

Message to other cancer patients

 

“Love every day like it’s your last and enjoy now.”  

Chondrosarcoma Survivor Now A Block Print Artist

 

Favorite Quote

“You must do the thing you think you cannot do.” –Eleanor Roosevelt

 

Meredith Winn was diagnosed with pelvic bone cancer in 2016. She has successfully defeated her disease. She is now a freelance writer and a block print artist.

 

The Diagnosis

“I was forty-one years old when I was diagnosed with chondrosarcoma. My son likes to say that yoga saved my life: I went to the doctor after experiencing limited mobility in yoga class. What I assumed was a labral hip tear turned out to be a rare form of pelvic bone cancer.”

 

The Journey

 

“It’s quite possible that I unknowingly lived with a slow growing pelvic tumor for twenty-five years (beginning in puberty). I learned of its existence and lived with the knowledge of having bone cancer for forty-five days before it was cut from me. My type of bone cancer was not receptive to chemo or radiation so surgery was my only option. I had four inches of my pelvis removed in 2016 with a limb salvage surgery that allowed me to keep my leg while removing a grapefruit sized tumor from my pelvic bone and inner thigh. One large skin graft and 180 stitches later, I re-learned to walk and am now two years cancer free.”

 

Motivation to fight cancer

“There are still so many thing I want to experience in this life, so many things I want to share with my kids!”

 

Biggest hindrance

“Wrapping my head around all the unknowns was challenging. Giving up control and surrendering to anything and everything that was happening felt impossible. Most days I felt like I was a bad actress in a terrible movie. I also had no idea what “recovery” looked like after my surgery, so embracing the “new normal” through recovery was something I had to practice.”

 

Message to other fighters

 

“Be gentle with yourself. Find others so you don’t feel alone. Allow yourself a full range of emotions. Find what motivates you and fight for your life!”  

Ewing Sarcoma and Leukemia Survivor Shares her Journey

Favorite Quote

“ You are a child of the universe, no less than the trees and the stars; you have a right to be here. And whether or not it is clear to you, no doubt the universe is unfolding as it should.” -Max Ehrmann

 

Catalina Ritzinger was diagnosed with Ewings Sarcoma and Leukemia. She has successfully defeated her diseases. She is a fighter and writes about her life in her blog.

 

The Diagnosis

Ewings Sarcoma -August, 8, 2008 Leukemia- February, 26, 2010

 

The Journey

 

“When I was 15, I have diagnosed with Ewings Sarcoma. I was in my modern dance class when my femur snapped. I had been having pains for a year and multiple misdiagnoses before my tumor finally broke. I had 8 rounds of chemo and then I had the resection surgery. The doctor took out my femur and 60% of the surrounding muscle to make sure he cleared the margins for any leftover cancer cells. After the surgery, I was tested and we had determined that there was no evidence of disease left. However, since there is limited research for childhood cancer (especially Ewing’s) the doctors continued with 8 more rounds of chemo.

 

All the research had shown that with that amount of chemo it was least likely to return. I made it through the second half of vigorous treatment and made it to my final chemo celebration. I spent the next year rehabilitating and trying to catch up in high school. At the beginning of February 2010, I was packing my bags with my family to go on my Make-A-Wish trip to New York Fashion Week. I had the most magical time, I go saw shows for Michelle Smith, Tracy Reese, Vera Wang, Betsey Johnson, Gwen Stefani and my favorite, Naeem Kahn. Although New York was the most amazing experience, the entire time I was fighting a miserable cold. Two days after my return from NYC, I was diagnosed with Leukemia, due to too much chemo from the Ewings.

 

I started treatment on the day of my diagnosis. After three months of chemo, I had found a very generous bone marrow donor for my bone marrow transplant. She is a selfless, kind, woman from a small town in Germany. On the June 10th, 2011, I received my bone marrow transplant. On June 11th, 2011 I graduated from high school via Skype. In two days I had a lifesaving treatment and accomplished one of my only goals during all of my medical battles. There are so many more complications and side effects that I didn’t even begin to mention. Most people don’t realize that cancer is so horrible not because of actual cancer, but because of the chemo and the unimaginable side effects. Every day you are pumping poison straight into a central line that goes directly to your heart. It’s jarring to think that you are healing yourself while killing all your cells. There is just too much information and way too many details for this long paragraph to do my story any justice.”

 

Motivation to fight cancer

“My main and only motivation to fight was my family. I fought for my parents who didn’t leave me out of their sight. I fought for my two younger sisters who lost their childhoods being passed from neighbour to neighbour so my parents could be there with me the whole time. I fought for the possibility to one day have a family of my own.”

 

Biggest hindrance

“I cannot even begin to list them all. I have had so many side effects and surgeries and V.O.D and two bouts of graph versus host disease. I have extreme osteoporosis and osteonecrosis that have caused me to have several joint replacements. I also now have ovarian failure and cannot have children.”

 

Message to other cancer patients

My message to fellow cancer patients would be: Allow yourself to feel all of your feelings. We are so often told to be positive and to ignore our feelings of anger or sadness because “Being positive is half the battle!” If you don’t want to grin and bear it, then don’t. Your feelings are valid and you need to feel them in order to heal.” 

Ewing’s Sarcoma and Lymphoma Survivor Story

 

Favorite Quote

She never seemed shattered; to me, she was a breath taking mosaic of the battles she’s won.”

 

Nicole Munoz is a Lymphoma and Ewing’s Sarcoma Survivor. She is AYA (adolescents and young adults) Cancer Voice/Advocate. She also runs an amazing blog by the name, “crazy cancer lady”.

 

The Diagnosis

“Hodgkin’s Lymphoma: January 2009, age 16. Diagnosed after having severe chest pains. Discovered a tumour in my chest that was later confirmed as HL stage 3b in the abdomen, chest, neck, and face. Ewing’s Sarcoma: October 2015, age 23. Diagnosed after having my stomach extending. Initially misdiagnosed as a 5 & 1/2 month pregnancy. Instead, a very large tumour was found attached to my uterus and other organs in that area. I had to have a total abdominal hysterectomy in order to remove a tumour safely, leaving me infertile. It was confirmed as Uterine Ewing’s Sarcoma, a very rare case with not many cases out there.”

 

The Journey

 

“My journey with cancer was difficult, but it gave me such an appreciation for life. When you almost lose your life you realize how quickly it can be taken away and how valuable time is. I still have my moments of sadness and I am still discovering myself after having two cancers, but every day is truly a gift.”

 

Hodgkin’s Lymphoma – January 2009 to June 2009

“My journey with HL began Thanksgiving Day in 2008 and I did not even know it. I started having severe chest pains and had to miss the holiday to spend it in the ER. After a long visit, I was diagnosed with pleurisy (a chest infection) and given steroids. The steroids took the chest pains away and I felt back to my normal 16-year old self until January 2009. The pains returned in the same spot but they were much more intense. I also could not hold any food down. I returned to the emergency room and they began testing, thinking I possibly had a blood clot in my chest. When that was ruled out, they continued testing and found a large mass in my chest that was also crushing my esophagus.

 

The pain stemmed from the mass and I could not hold food down due to the mass blocking it from being digested. I was admitted and the doctor came to tell my parents and me that there was a chance I could have lymphoma. I had NO IDEA what lymphoma was at the time, so when he then said cancer we were shocked. I was transferred to Advocate Children’s Hospital in Oak Lawn, IL (then called Hope Children’s Hospital) because they had an oncology unit there that could better assess and diagnose me.

 

A lymph node biopsy was needed to determine if it was lymphoma. We first did a chest biopsy but unfortunately, that came back inconclusive due to the steroids I took back for the initial misdiagnosis of pleurisy. A few days later we did a neck biopsy that was successful. On January 27th, 2009 I was officially diagnosed with Hodgkin’s Lymphoma Stage 3b in the stomach, chest, neck, and face (sinus area). The treatment plan included 3 cycles of chemotherapy followed by 28 sessions of radiation.

 

The tumor in my chest was still present and my team decided not to operate on it and let chemo shrink and break it up. The surgery was too risky and required a large incision and recovery. If we needed to do it down the road we would, but luckily that was not necessary. HL is one of the cancers out there that is very treatable and has a successful cure rate, however, treatment needed to happen ASAP and the chemotherapy was very physically intense. I was given information, had my PICC line inserted, and prepped for this huge event in my life. I had to miss the second semester of my junior year of high school, but I did work when I was feeling well enough and caught up in time to go back to start my senior year. I immediately reacted to the chemo and experienced just about every side effect I was told would happen: hair loss, body pain, weight loss, nausea/vomiting, immunodeficiency, mouth sores, fatigue, etc.

 

I ended up admitted to the hospital after each round due to catching a fever. Radiation was much easier on my body. 14 sessions were done to my stomach and chest at the same time and then 14 sessions were done to my neck and face at the same time. The main side effects I dealt with was fatigue and nausea. I finished my last radiation session and went into remission on June 26th, 2009.”

 

Ewing’s Sarcoma – October 2015 to October 2016

“I went into surgery to have my hysterectomy on October 2nd, 2015. Dr. G was also a surgeon and I was so grateful that he performed the surgery. The prep was absolutely terrible, my vein/IV blew out right before I was heading into the operating room, and I was all sorts of nervous/anxious/sad/etc. What scared me the most was how rare this tumor was, my doctor had never seen anything like this and I really did not know what to expect. Surgery was expected to take 2 hours and it took over 4. The mass was huge (18cm) and extended my cervix like a 5 & 1/2 month fetus would, which is why I looked pregnant (pics of my tumor are in my blog post about my hysterectomy if you are interested). Since it had attached itself onto other organs in my body, he also had to work around that and cut some of them and put them back together.

 

I had many friends and family in the waiting room and they were just as nervous as I was. When I started to wake up, the first thing I asked my friend (which I don’t remember because of all the drugs) was if they were able to save my ovaries. I did not get the answer I was hoping for. My ovaries would have needed to stay in place for 6 weeks for the freezing process, but it was too risky. I would never have a child using my own eggs. The complete term for my procedure was a total abdominal hysterectomy (meaning they cut open my stomach to perform the surgery) and bilateral salpingo-oophorectomy. In simpler terms, everything was removed: uterus, cervix, fallopian tubes, and ovaries. I also had lymph nodes removed, stated in my medical notes as pelvic and periaortic node dissection.”

 

My team decided to follow the standard protocol for Ewing’s with the exception of doing the surgery first. So I had 17 straight cycles of chemotherapy ahead of me, wondering if it was even going to work for a case like mine. This cancer diagnosis came when I was an adult, so I did have the choice to not do treatment. And I’m not going to lie, I considered it. Since the cancerous tumor was removed from my body and there were no signs of cancer to the naked eye, I had the choice to leave it at that and see what happens. However, there could be a microscopic piece left there and I did not want to take that chance of having such rare cancer grow back. So I made the choice to go through the chemo, and I am beyond blessed that the treatment protocol worked for my rare case.”

 

Motivation to fight cancer

“I knew deep down it was not my time to leave. I have things to do, people to be here for, and dreams to chase! “

 

Biggest hindrance

“Depression and losing my fertility.”

 

Message to other cancer patients

“Always remember that YOU have cancer, cancer DOES NOT have you!”

 

Ewing’s Sarcoma Survivor Runs A Blog To Spread Awareness

“I had cancer but cancer never had me.”

Julia Spurge-Salerno was diagnosed with Ewing’s Sarcoma on November 6, 2016. She has successfully defeated her disease. She runs an amazing blog- thesarcomadiaries.

The Diagnosis

“I found my lump accidentally because I bumped into it when getting up from my couch. The lump was located in my breast and chest wall. I went to 3 different doctors to confirm that there was definitely a lump and was sent for various tests including a mammogram, ultrasound, and biopsy. As I suffer from panic disorder, I told my dr when he received my results to tell me over the phone regardless of the outcome. He told me I had cancer over the phone. At first, my diagnosis was metaplastic breast cancer but after 3 rounds of chemo to shrink my tumor I had surgery. Following surgery, they examined my tumor further and changed my diagnosis to Ewing’s Sarcoma.

The Journey

“I went through 9 rounds of aggressive chemo that was 3 days per month and 9 hours per day. I also had a lumpectomy to remove my tumor that was located in my left breast and chest wall. My final diagnosis was Ewing’s Sarcoma. I lost all of my hair after my first round of chemo. I also dealt with extreme fatigue, stomach cramps, headaches, body aches, bone pain, chemo brain (forgetful and confusion), numbness in my hands, and anxiety.

It was extremely hard on my children and family as cancer takes its toll on the entire family. I was lucky that my chemo worked and I was able to pull through. I had amazing doctors and nurses who helped me through the entire process as well as my counsellor who treated myself and my family to cope with all the changes and fear. I am now cancer free for 1 year and 4 months.”

Motivation to fight cancer

“My motivation was definitely my 3 children. I needed to fight my hardest to beat my cancer so I could be with them as long as possible.”

Biggest hindrance

My biggest hindrance I would say was the emotional side of things. It can sometimes be very hard to stay positive when you are basically at war with your own body. You have to find ways to cope and power through because it can be very easy to succumb to depression. It is ok and very normal to have bad days but if you feel it’s getting out of hand you need to seek out help. I started counseling during this time by myself and with my family. That helped immensely as did my writing.

Message to other cancer patients

“Listen to your gut always. If you feel that something is wrong, please get it checked out immediately. Fight with everything you’ve got and don’t surrender to this disease. Seek out support from those who have been there or are still going through it. I used online support groups and they definitely helped me to see there were others just like me and that I was not alone. You can’t be positive all the time and if you have a bad day it’s okay and completely warranted.”

Bone Cancer Survivor Shares His Motivational Journey

Favourite quote

“If it doesn’t work today, doesn’t mean it won’t work tomorrow. It means, keep doing good things and focus on healthy lifestyle. Even if we got sick”

Alvin was diagnosed with bone cancer in April 2018. He has successfully defeated his disease. He is a fitness enthusiast.

The Diagnosis

“April 2018. I had bumps on my ankle since November 2017”

The Journey

“It started at Oct 2017, sometimes I felt pain on my right ankle

At November 2017, appeared bumps on my ankle

At December 2017, It got worst, I can’t use shoes

At January 2018, I did ankle roentgen and there was fleck above my calcaneus bone

At January – February 2018, done several treatments from doctors

At March 2018, done MRI and several blood test. And the result, led the doctor to diagnose Bone Tuberculosis

At April 2018, underwent Debridement Surgery (the removal of damaged tissue or foreign object from a wound) and doctor took sample to biopsy

After a week, the doctor gave the result of biopsy, it was Chondrosarcoma grade 3

I checked several doctors in Indonesia, KL, & Penang and the result still the same.

Every doctors gave me 2 solutions:

1. Calcaneus Bone reconstruction (10-15% recurrence)
2. Amputation (0% recurrence)

Did PET scan, and the result was no spread of cancer cell

And I got amputation surgery on June 2018”

Motivation to fight cancer

“I’m not ready to die. I wanted to survive and be the living proof of cancer survivor. So, I can help others to fight against cancer”

Biggest hindrance

“Choices of Reconstruction or Amputation.”

Message to other cancer patients

“First of all, we should be ‘accepting’. Accept that we are in sick condition. If we are accepting our condition, then we can be positive. We can focus on healing process. It will be helpful. Don’t regret for every single choice that we make, just be thankful.”