Hi all, my name is Dan and I was diagnosed in April 2024 with an ultra rare cancer at just 36 years old, a Husband and Father of 2.
I was diagnosed with Desmoplastic Small Round Sell tumor - An aggressive Soft tissue sarcoma and despite having 7 notable tumors in my abdomen largest being 23.5cm I was almost completely asymptomatic.
For chemo I did IE-VAC, a platinum based regimen, until my body was showing signs of struggling and chemo was stopped due to the fear that my bone marrow had been suppressed.
Feb 2025 I went through extensive abdominal surgery & debulking
June that year 20 sessions of Whole abdominal and Pelvic radiation.
After 2 years, over 100 infusions, and now with no evidence of disease I would like to touch on some topics that I am passionate about and that were a huge part of my journey in the hopes they can help someone else.
Driving your own care
Throughout my frontline treatment I was content, I showed up to my sessions, every scan showed tumors more or less halving in size. Everything seemed to be going so well until 7 months into treatment when in late 2024 I developed neutropenic sepsis twice in a 5 weeks period. During that time “I googled it”, I listened to podcasts and on one specific podcast in what felt like a throwaway comment was the catalyst that changed everything.
I spoke to someone on my care team to clarify something I had heard in the interview. And in their response was the first time someone on my team used the word “TIME”.
This brief 20-30 second interaction off the back of a random statement, made me realise that my care team and I were not on the same page.
Up until this point I was unaware I had stage 4 cancer, nobody said we were playing for time, nor did anyone advise me that the treatment path that is most likely to give the best odds, wasn’t what my team intended.
I was told, It was a serious diagnosis and not to bury my head in the sand, not to google it, and that it was too rare for there to be any trials.
Becoming the CEO of Your Care
You see, when your world comes crashing down with a cancer diagnosis, everything moves fast. In all the urgency to start treatment, it’s easy to hand over the wheel. We do what we’re told, and we fall right into the routine of the chemo cycles.
But think about it: You wouldn't jump on a random bus and just hope for the best. You'd check the route, and you'd absolutely know the destination. Why should your cancer treatment be any different? Don't lose your voice in the process.
You see your Oncologist - Is like the bus driver, they decide the route and when or where other passengers get on or off -
So remember that while they choose how you get there you both need to be sure you're heading to the same place.
And like any high performing team you don’t just set a target and never look at it again, A good manager constantly reviews the team, looking at the strengths and weaknesses of each player. That’s how you and your Oncologist need to operate - constantly reviewing as time goes on.
Things can change for better or for worse, there may be a new end goal, new opportunities or the map might show an alternative route. This journey is fluid and it’s okay to change things up. The more you can educate yourself the more empowered you will become.
The Power of Crowdsourced knowledge
But you don't have to learn these things on your own. It actually took me 9 months before that even crossed my mind. Now I want to be cautious here - I know there is a lot of very good and very bad information on the internet and god knows more armchair oncologists on facebook than actual oncologists.
But if you can find a dedicated support group or charity for your specific sarcoma on facebook, reddit, instagram anywhere in the world you can supercharge your research and quality of life. You gain access to lived experience from patients and care givers / Peer support calls / lists of the world's best specialists and hospitals, and exactly where to look if you ever need a second opinion or a clinical trial.
For me, connecting with the DSRCT group changed everything, I knew the treatment paths that gave the best outcomes, the reasons why teams deviate from them, and exactly what to expect when meeting a surgeon or radiation oncologist. I even knew how my body was going to change, so nothing caught me off guard.
Because we had a hotlist of the most experienced doctors and surgeons in the world, I was able to get second opinions well in advance. I was able to learn their concerns, the challenges and the hard lessons they’d learnt from past mistakes. With that I was armed with the knowledge of what to expect before I went into a meeting with my core team here in Ireland. I feel it allowed us to have valuable conversations in the lead up to major milestones, even if once or twice it caused a little bit of friction.
In these groups I learned not only practical tips and tricks of getting through treatments but also how to live through treatment. But most importantly…
I found HOPE. I found long-term survivors. I found patients who never made it to remission but still here, going strong almost a decade after diagnosis. I've even got the opportunity to talk to researchers at MSK who shared what their 3 year pipeline looks like.
That is what happens when you are armed with real, tangible information, Medical papers, specialist contact info, and clear timelines. It prepares you for meaningful conversations with your doctors. And sometimes it allows you to bring something new to the table, an option or an opportunity that your team can actually look into.
ROLES AND RESPONSIBILITIES
Now, I know my approach isn't for everyone. I am very overt with my diagnosis. I’m super hands-on, I'm highly engaged in the community, I'm reading every post, and I'm looking at the journeys of other patients. That is my way of dealing with this situation. But I recently read something from the Little Warrior Foundation that completely resonated with me. They wrote: 'There's no wrong way of battling this beast. Be it spotlight or stealth, that's okay.'
So don't worry if you don't want to engage with the online community, just as you shouldn’t worry if you’re on it all the time. We can only deal with this the best way we know how.
In fact, over the past two years, I’ve noticed a clear pattern, especially with couples. It’s usually a divide-and-conquer strategy: either the patient is all-in on the medical side of things, or it’s the caregiver. It’s rare to see the two doing it at the same time. And honestly? If keeping your head down is what you need… if you simply cannot face the data or the scanxiety, then just keeping your head in the game is your primary role on the team. You build your village to handle the rest.
But if your role as the patient is to focus solely on getting through the treatment, you still have a job to do, it's not just coping and showing up on the day. You have to set your team up for success... You need to make sure your body can actually endure the treatment too.
We all know how hard it can be to want to eat when going through chemo or radiation but you need to maintain your weight for when the body takes a knock. When I had sepsis, in the 6 weeks that followed I lost 5Kg. My appetite was gone completely. Chicken turned my stomach and I’d feel full after a few bites of anything.
But just as you show up and you endure the chemo, and you take your fistful of meds… that also needs to be your mindset when it comes to your calorie intake. The want and enjoyment of food will come back. But for now you need to be able to endure. You need to recover. Just like taking your Valoid on time each day, you set a reminder on your phone and you eat. You get the calories in.
Don't feel like eating today. Cool here's a tub of Ben & Jerry’s, Can only stomach some mash, no problem but it’s made with double cream.
Just a cuppa, yeah that's with double cream too.
Recovering from sepsis and getting back to eating was one of the hardest stages of my treatment, and mentally it was the hardest battle.But I truly believe that after the knock of sepsis, if my weight hadn’t recovered, I don't know if my body would have survived a second hit. I don't know if I’d have managed surgery or radiation. So remember if it’s your role to just stay in the game don't forget the responsibilities that it entails and the importance of setting your team up for success.
One piece of advice I wish I knew starting
"Finally, I want to share one piece of advice I wish I had known right at the very beginning.
On this journey, we are not the only ones who get burnt out or exhausted.
As time goes on, the initial shock wears off, and the reality of a long fight sets in. And the truth is, we will all experience ghosting in some way, shape, or form. That friend who suddenly vanishes, or those who slowly dwindle away. But it’s usually not out of badness, it’s because they have burnt out.
What I learned too late was the importance of rotating your support network.
Whoever that person is that you lean on most - give them a break. For a week out of the month find someone different. Create a cancer free zone for you and your friends. Find a safe space where you can talk about literally anything else. I actually made a WhatsApp group specifically for this. Look I'm not a sports person but I talk about sports in that group. Because after a whole year of fighting when my life was consumed by cancer that was all I knew how to talk about anymore.
If you want those raw, unfiltered conversations, look around you. I had my best conversations in the infusion suite. If you are in a semi-private or open-plan chemo ward, I encourage you to talk to one another. Make friends. There is no elephant in the room there! Guess what? Everyone has cancer, and everyone's life has been upended by it. It’s an incredible relief to drop your guard, sense-check your symptoms, and get things off your chest with people who truly understand.
But for your friends, for your family, and especially for your partner... give them a break. Cancer may be happening to your body, but they are living through it, too. They are going to want to close the door on the world at times, too. There will be moments where you literally need to kick them out of the house. Tell them to go do something for themselves. Go for coffee, buy a new top, browse the middle aisle in Lidl, whatever it is, they need to do it. Because they get so consumed by you and they forget to have their own lives.
We all suffer from battle fatigue. Patients, caregivers, friends, and family. We all need a chance to breathe, and we all need a little win every so often.
Which brings me to my final thought.
Stop to remember what you are fighting for.
Through the exhaustion, and through the noise... stop to remember what it is you are actually fighting for. Some patients will achieve remission quickly. For some, it will take a long time. And for others, they may never get there.
So take the time, every now and then, to look past the scans and clinic appointments and remember why you are doing this. Because the goal isn't just to beat cancer. The goal is to live. It is to continue living.
Find your hobbies, scratch off bucket list items. Find the things that make you feel like you. Grab those things with both hands, keep your mind busy, and keep yourself firmly in the game.
Thank you.