It was a regular morning and my usual routine of scrubbing off a night’s rest in my morning shower. I noticed that my scrotum felt larger and a visual in the mirror confirmed that something wasn’t right. Over the next few months, I had an ultrasound and met with a general surgeon and a urologist. They couldn’t decipher if it was a hernia or a hydrocele, so they decided on the surgical plan for both, once they could confirm what was causing the growth. Day surgery – it was supposed to be simple. Thirty minutes into the surgery my wife was told that they had to stop the surgery because they found a mass. In order to remove the mass, my right testicle would have to be removed as well because the mass had engulfed part of it. The urologist assured us that because the mass was outside of the testicle there was a less than 5% chance it would be malignant. “It’s most likely a benign growth.”, is what he said.

After the surgery to remove my right testicle, I went home to recover with a follow-up appointment 2 months later. July 2005, I remember how hot and muggy the day was. I remember little else, but the weight of the heated air has stuck with me all these years later. We had thought little about the follow-up appointment because the urologist had assured us that there was nothing to worry about. So, we promised to take our 1- and 3-year-old children to Pizza Hut if they were good during the quick appointment. The doctor told me that the pathology report said I had a ‘paratestiular liposarcoma’ and when I asked him what that was, he replied, “I know, I have never heard of it either and had to look it up in a medical journal!” I thought I was going to be ill. Shock, confusion and disbelief flooded my body, and I really don’t recall the rest of the conversation, except that I was being referred to my local Cancer Centre.

While waiting for my appointment at the Cancer Centre, I scoured the internet for any information I could find. There was precious little information or research and what I could find from online medical journals was horrible news. Few people in the world had the same or similar cancer, little research dollars were being spent on such a rare cancer, I had no one to speak to who had a similar cancer and my doctor had gone on summer holidays! I felt very lost and scared about how I was going to survive this… I was 37 years old and newly married with two young babies.

Fortunately, my local Cancer Centre referred me to Princess Margaret Hospital in Toronto where they have a clinic specializing in sarcoma patients. At this Sarcoma Centre I would be treated by oncologists who were leading researchers in the sarcoma field. My care involved a multidisciplinary team of surgical, radiation and medical oncologists who work together, locally and internationally, to advance the treatment for my type of cancer. I was informed that surgery was the “gold standard” of my cancer and so I had another surgery. My wife and I were able to breathe a bit deeper as we felt that we were in good hands and that, since I was young and healthy, I would be okay after this surgery. And I was okay… for a while.

Four and a half years later, the cancer had returned and I came to learn that sarcoma has a very high recurrence rate. Treatment involved radiation and a more extensive surgery that involved wonderful plastic surgeons rebuilding the right side of my pelvis! Cancer treatments became a part time job for a while, working as a Federal Government accountant in the morning and then driving 1.5-2 hours to Toronto for radiation therapy. It still amazes me what the human spirit can do once you set your mind to something!

When they say that “life goes on”, it truly does. After 3-4 months of recovery, my body began to heal along side my spirit. I spent the next 11 years thinking less and less about cancer because all my scans came back clean, and my children were growing bigger and needing me to chauffeur them here and there! I got very comfortable with the routines of a busy family life and a rewarding career and felt very grateful for the care and treatment I had received from Princess Margaret. It was behind me now. Or so I thought.

In July 2021 I was reading the results of a scan and said to my wife, “I think that my cancer is back.” She read the report and didn’t believe it. How could that be after 11 years? Sadly, though, the cancer had returned and in a location that gave me a very poor prognosis. If I was being completely honest, I felt this unbelievable grief and disbelief. I remember saying to the oncology team, “I come here to Princess Margaret because you always give me hope. Please don’t give up on me now. Just help me keep fighting.” For the past three years, I have been fighting hard! I have had chemotherapy that made me so ill I ended up in ICU from low blood counts, but the cancer remained. I have been on a clinical trial for targeted therapy that shrunk the tumours a bit and gave me 16 months of progression free survival, but the cancer remained. I have been poked, tested and trialed other chemo drugs with varying side effects, but the cancer has remained.

I am now 55 years old, and the cancer has been with me for 19+ years. I have lived with and fought liposarcoma for a long time. Surgery is no longer an option for me so I know that this cancer will remain with me, to some degree, for the rest of my life. However, along my 19-year journey I have picked up some other things that will also remain with me; gratitude, strength, faith, hope, resilience, patience, and joy. I have so much gratitude for all the doctors, nurses, pharmacists, health care professionals and everyone who even remotely helps maintain the dignity of a person suffering from cancer treatments. I have strength even in my darkest moments to rise back up and keep on fighting. I have faith in the expertise of these amazing researchers who are making medications to advance the treatment options for sarcoma patients like me. I have hope that someday soon I will be given a treatment that drastically shrinks or stabilizes my disease. I have resilience to walk into every blood test or treatment room even while I continue to have a fear of needles. I have patience as I wait for the results of tests or decisions of treatment options, knowing that each day should be celebrated. Most importantly, I have joy. Joy in all the little things that so many people take for granted. Joy in just sitting and breathing, going for a walk and getting the groceries.

I have a desire for more time with my family and friends. I want to continue to create memories for those around me. Living each day, one day at a time and making the best of a bad situation. My cup ishalf full, not half empty. It’s a mindset that I practice. It’s difficult at times. I’ve been angry at cancer, I’ve cried, my emotions twisted. I’ve also had a great support network of family - of my wife, kids and those around me who keep me grounded. If I had any advice for someone diagnosed with sarcoma it would be to develop your own support network where you can be yourself. Things don’t have to be perfect. Better, not perfect, is the Simoes Family motto! Ask your doctors questions, and ask again if you don’t understand something. Bring a support person with you to clinic visits. They can listen to the small details that you may have missed. Go to a high-volume Sarcoma centre for your care, such as Princess Margaret / Mt. Sinai hospital in Toronto. Live, laugh and love. Be hopeful. It’s not always easy but you can do this. I’m still needle phobic after all these years!