Nasal Sinus Carcinoma Survivor Now A Professional Boxer
“Die with memories, not dreams”
“Having cancer showed me that I have limited time on earth and I’ve made every minute of my life count since the day I was told I had cancer.” Rob Guarino was diagnosed with nasal sinus squamous cell carcinoma in August 2017. He has successfully defeated his disease. He is a professional trainer, boxer and black belt.
“August 2017 I was told that what I thought was a cyst or ingrown hair in my nose was actually a 10 cm squamous cell carcinoma and needed to be operated on ASAP.”
“One day I was picking my nose and thought I found an ingrown hair or a pimple. After 2 weeks, my wife insisted that I go to an ENT. Another week later it started to bleed. My wife now took me to the local ENT. He looked at it and sent me to a specialist. The specialist looked at it and ordered an MRI and a biopsy. It came back as a malignant squamous cell carcinoma in my sinus cavity. The only good news was that it was encapsulated and had not spread to my lymph nodes or anywhere else. 2 weeks later, I had emergency surgery and it had been taken out without any incisions. Even though I had negative margins, my team at Mount Sinai played it safe and a month later I started low dose chemo and high dose radiation to eradicate any potential remaining malignant cells. 36 treatments of radiation later, I had lost 50 pounds and couldn’t drink water without painkillers, and was only able to drink shakes with the aid of magic mouthwash. It was excruciating to say to the least. The worst pain of my life. I started to feel human about 4 months after radiation had ended. I have since lost my sense of taste and smell, making food not enjoyable at all. My team said to give it 12-18 months to come back. And even then it won’t be back fully. But looking back I feel like I got the best case scenario and I’m thankful for my experience.”
Motivation to fight cancer
“My wife and kids. I love life and I want to experience more and at 47 I feel like I’m too young to roll over and give up. Plus I’m a fighter by profession so I will take any challenge.”
“Set aside the pain of radiation, the physical appearance was huge. My wife is much younger than me and the treatment had aged me and made me feel/look old, frail, and fragile. That messed with me more than losing my sense of smell and taste and also mentally ruined me for a while.”
Message for Cancer Fighters
“Positivity. Naturally, the support of your family and friends is needed. But you also need to have a good team of doctors that you can relate to and feel comfortable with. My team of oncologists, radiation oncologists, surgeons, nurses, and even scheduling staff were everything to me for about half a year. I was in contact with them almost every day. They should be polite and understanding. You should be treated with dignity, not as a number. Don’t ever let it stop you from living. There may be days or moments where you feel beaten and miserable and sick but you have to keep your chin up and like a rocky movie keep on fighting and going round by round without giving up.”
Tongue Cancer Survivor Shares Her Inspiring Journey
“It comes down to a simple choice really: get busy living, or get busy dying.” -Red from Shawshank redemption
Laurie was diagnosed with squamous cell carcinoma-tongue in 2013. She has successfully defeated her disease.
“In 2013 I had an ulcer on the side of my tongue that wouldn’t heal. It looked like a plain canker sore, and yet it didn’t go away. After months of ignoring it, I consulted an ENT who recommended a biopsy. Five days later I was told I had squamous cell carcinoma of the tongue and needed a PET scan, MRI and Surgery.”
“After my diagnosis, my scans were negative for metastatic disease. I had surgery to remove the tongue lesion. I also had lymph nodes in my neck biopsied to assure there was no spread. They were negative so everyone was reassured. Unfortunately, 9 months later I felt a small mass in my neck. Of course, it was cancer. It was in my neck after all but was too early to be seen on scans or biopsies. At that point, I was diagnosed with advanced Stage 3 disease and would require a large surgery to remove all of the 54 nodes in my right neck, as well as full head and neck radiation and chemotherapy. I had all of this in 2014 and the Radiation was by far the worst experience of my life. But I got through it. Four months later my scans were thankfully negative. They remained negative up until last year and now I’m followed just with exams. So I am now four years NED!”
Motivation to fight cancer
“I was only 41 years old and a mom of two small kids who were 4 and 8 years at the time. I wasn’t supposed to have oral cancer. I was a non-smoker and HPV negative and still, no one knows why I got it. I’m also a doctor and a wife and had so many things I still wanted to do. I needed to do whatever I had to do to survive, and that was that. What motivated me most was not abandoning my sweet children.”
“The side effects of radiation were extreme and miserable. I couldn’t eat or speak. I lost the ability to swallow and to taste. I lost 25 pounds. It was an utter disaster. I also was frequently depressed and anxious. I got through it by accepting every ounce of support from my family and friends.”
Message to other cancer patients
“You can do it. Accept the help when it is offered. You don’t have to do it alone. We tend to not want to accept help as we don’t feel comfortable taking from others. But humans want and need to help, that is how they cope with you being ill. It’s important for not just you but them. Also, when things are tough, take them an hour at a time, or even 5 mins at a time. Don’t think too far ahead or you may get immediately overwhelmed. Only think about what is immediately in front of you.”
Oropharyngeal Cancer Survivor Is Now A Professional Artist
“Be brave, be bold and thrive in the life you have. You never know when it’s going to change.”
Benjamin Prewitt was diagnosed with inoperable stage 3 oropharyngeal cancer. He also has young onset Parkinson’s. He has successfully defeated his disease and is an artist and a father now.
He was diagnosed with stage 3 inoperable oropharyngeal cancer on 5th November 2016.
“My journey with cancer has been a story of loneliness, fear, loss, true friendship and finally healing. I lost a lot of my friend group. People don’t like to watch what they can’t control”
From his blog:“November 5, 2016: I’m diagnosed with inoperable stage 3 oropharyngeal cancer. I’ve 2 tumors in my throat, but not metastatic lymph node and two tiny spots on my lungs. After a brief announcement period and a ton of best wishes, I find myself walking to the first day of Chemotherapy alone. This one simple act was to define my life for the next 10 weeks and possibly forever.
November 20/2016: Today I started 1 of 30 sessions of Radiation treatment. Then weekly infusions of a highly toxic and problematic chemotherapy drug called Cisplatin. I’m later to find just how nauseous a human can get.
Fast forward time to: January 25th. I’m finishing up almost 10 weeks of treatment and have 2-3 degree radiation burns on the inside of my mouth a throat. Surprisingly I find the next 2 weeks even worse as the doctors all warned me about, but you can’t really explain what “worse” is after someone has just been through what I’d been through. But he was right the pain was out of control. All I can say is the worst strep throat I’d ever had compared not even in the same league.”
Motivation to fight cancer
“I wanted to see my son again.”
“I was alone almost the whole time, except for a driver to my treatments. Every other weekend or so a friend would drop off some protein shakes.”
Message to other cancer patients
“Cancer doesn’t have you, you are going through a process with cancer and keep reminding yourself that the other end of this process is cancer free. One just has to live through the treatment.”
Vocal Cord Cancer Fighter Shares Her Journey
“Oh, my friend, it’s not what they take away from you that counts. It’s what you do with what you have left.” -Hubert Humphrey
Ashley was diagnosed with vocal cord cancer in June 2017. She is fighting her disease for the fourth time.
“I was diagnosed with cancer in June 2017. I went to an ENT after having a hoarse voice that progressively got worse over the course of at least several months. Biopsy results were positive for squamous cell carcinoma on my vocal cords, stage T2. I later found out that I actually had mucoepidermoid carcinoma, a salivary gland cancer.”
“I started radiation treatments about a month after my diagnosis. Radiation kicked my butt. After 29 treatments I was sure I beat the beast. At my 6-month follow up appointment, we saw growths on my right vocal cord. I wasn’t too surprised because I had felt pain in my throat on the right side for a couple of weeks before the appointment. I had another biopsy and my doctor confirmed the cancer had returned.
He recommended a total laryngectomy. I sought out three additional opinions at top-rated hospitals. I ended up having a supracricoid partial laryngectomy, where they removed my vocal cords and some cartilage. The surgical pathology results showed that I had mucoepidermoid carcinoma, which would explain why radiation wasn’t effective. Recovery was tough, but after 3 months I was able to successfully swallow while protecting my airway and had my feeding tube removed.
At my 4-month follow up appointment we saw growths in my throat again, just below the cartilage that was previously removed. A biopsy confirmed that I was facing my second recurrence. On September 10th I had a total laryngectomy where they removed the rest of my larynx, took tissue from my forearm to reconstruct my throat, and gave me a permanent stoma through which I breathe. Because of the persistent and aggressive nature of my cancer, I decided to go through more radiation and chemo treatments. My body handled the treatments like a champ but in just a few short months, a CT scan and biopsy showed that the cancer was back again. I am starting immunotherapy and praying that it works.”
Motivation to fight cancer
“All of the support and encouragement from friends and family has given me strength to continue with this fight. Making friends though online support groups who have been through the same things has been super helpful.”
“It is discouraging when treatment after treatment fails to stop the cancer from returning. My body has otherwise been strong and I hope it continues to fight with me.”
Message to other fighters
“Treatment is hard. Recovery is hard. But you can make it through this. Lean on those around you who want to help. Take it easy on yourself and listen to your body; rest when you need to. You may also go on an emotional rollercoaster, where you have both highs and lows. That’s okay. When you’re done with it all you’ll realize you’re one tough cookie.”
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