Pre-diagnosis

Initial Symptoms

My story started when I was 36. I was a healthy, active, very typical 36-year-old adult. I was in the prime of my life. I was happily married and work was going well.

I started getting very minor abdominal cramps and pains that I’d never really felt before. I thought it was stress, something I ate, or a pulled muscle. I didn’t think anything of it.

Then I started to have a little bit of blood in my stool. It was very, very minor. It could have very easily been passed off for hemorrhoids, an inflammation in the intestine, or an infection in my GI tract.

But when I was searching “abdominal cramps, blood in the stool” on Google, colon cancer kept coming up. It wasn’t on my radar, to be honest, but the fact that it was there got me thinking about it. I got concerned when that started popping up over and over again.

My tumor was quite small. It was only about 2 x 3.5 cm. Because of the size and where it was, which was in my sigmoid colon, my doctors don’t believe that a lot of that pain even had anything to do with that. At the time of my diagnosis, I had a very physical job. I was running and working out all the time so it could have been anything.

My GP is awesome. We have a great rapport. She has my back and has always taken good care of me. The day I went in, it was clinic day and they had residents working with the doctors. I got to meet one of her residents who was probably around the same age as I was.

He did everything I was expecting. He asked all the questions. “How long have you had the symptoms?” “Are they impacting bowel movements?” “Are you eating?”

Because of the blood, he did a digital rectal exam, but he didn’t feel anything nor was there anything odd so he left it as potentially an infection. It could be an inflammation from a hundred different things. Hemorrhoids and stress came up, the typical stuff you hear when you have things going on in your stomach. But I pushed back a little bit because I was concerned that I kept seeing colon cancer come up every time I searched on Google.

Diagnosis

Going to the Emergency Room

My situation unfolded a little bit differently in the sense that this was all during the pandemic so everything was a little bit delayed. I had a little bit of a wait to get a colonoscopy because I wasn’t presenting urgent symptoms. It was more exploratory.

I was on a two- to four-month wait to get that colonoscopy done. However, my GP is an ER physician as well in the hospital and said, “If it’s getting worse or you want to get this solved quicker, go to the ER so you’ll have access to this a lot quicker.”

After a couple of weeks, my anxiety was getting quite high and I was getting worried. My wife had very gently encouraged me to go to the hospital and get it looked at for the good of my mental health. There was too much waiting and I wasn’t doing well with it.

I ended up in the ER because some of the symptoms were getting a bit worse. Again, I was looked at as a healthy 36-year-old adult. They did a physical exam. My blood work came back perfectly. My CEA was 1.8. It’s never changed. It’s always stayed at that so they were leaning towards diverticulitis, stress, inflammation, and everything they consider before cancer because of my age and my health.

Getting a Colonoscopy

I didn’t have a colonoscopy until after they found the tumor on a CT scan.

Colonoscopies are not scary at all. They’re pretty smooth and painless. To be honest, the most uncomfortable part is the prep to clean out your bowels but, at the same time, it’s not that bad. You have to drink a whole bunch of liquid that doesn’t taste very good.

Would I rather not have to do them? Absolutely. But at this point in my journey, I’ve had about 3 or 4 of them.

When you get the procedure done, you’re comfortable. I didn’t feel a thing. The staff was great. They gave me the choice to be awake or be totally out based on my comfort level.

The whole procedure lasted about 25 minutes. In my situation, I found it neat and a little empowering because I stayed awake. My surgeon did my colonoscopy and showed me my tumor. She explained where it was exactly and gave me an idea of what was going on, which I thought was cool because you never really get that perspective.

A procedure that could save someone’s life or make a drastic difference in an outcome is a no-brainer. I talk a lot about colonoscopies because a lot of people are scared of them or don’t want to do them. There are so many myths about them, but they’re quite simple, pretty comfortable, and quick procedures to get done.

Getting a Sigmoidoscopy & Biopsy

When I woke up, the general surgeon was very open with me. He said that he was 99% sure that we were looking at cancer. I was coming out of sedation so it didn’t hit me how it necessarily would if I wasn’t. Luckily, my wife was there.

Breaking the News to Family and Friends

The toughest part was having to tell people because there’s very little cancer history in my family. I didn’t have any predispositions to anything that made sense.

Having to tell my family and friends was quite the thing. My wife played a huge role. She told a lot of people because I didn’t know what to say. I couldn’t have those conversations at that time.

Colon Resection

They weren’t sure if the lymph nodes they were seeing were involved. They couldn’t confirm that at that point. But what they did know was the tumor was small and in a place they could reach very easily. They can take a few inches of my large intestines out and reconnect everything.

Between the first week of December and about mid-January, I was doing pre-surgery workups, like blood work and pulmonary tests. They checked my heart and my lungs. I met with the anesthesiologist and the prep nurse. I had two MRIs because my stomach was not behaving and there were motion artifacts so they had to redo it.

Following that, I had a colonoscopy so they could go in, take a look, and mark the tumors because that’s how they locate them when they do the surgery laparoscopically. They also wanted to check the rest of my colon. Everything was clear. There were no other areas of concern.

I had my surgery on February 19th and it went smoothly. There were no issues. The surgery was about 3 1/2 hours. They were able to do it laparoscopically so it was minimally invasive, which was great. They ended up taking out about 6 or 7 inches of my large intestines and were able to reconnect the plumbing, as my surgeon called it.

After I got home, they called me because a nurse that I had tested positive. Luckily, I was negative, but it was a pretty stressful situation because I’d been home for a week already and my family was around me. Everything was great, but that was a stressful little situation after a pretty stressful situation of major surgery.

I was active during my recovery. Some days were more difficult and there was a little more pain. The first couple of weeks especially were frustrating. I’m active and independent. I work out, run, and lift weights, but for six weeks, I couldn’t even lift the laundry basket. I took handfuls of laundry in little scoops at a time. We went to buy groceries and I was able to carry in one item at a time. 

That was quite challenging mentally. Going from being strong, healthy, and independent to suddenly being unable to do anything for yourself. That was tough, but I got through it.

I had a lot of support. My family was great. During that time, I found great social and emotional support groups that helped me during that time. Getting onto some Zoom calls, talking to other patients, and making those peer connections definitely made recovery a lot easier.

FOLFOX Chemotherapy Regimen

My diagnosis was stage 3B colon cancer. After recovery, I was lined up for six months of FOLFOX (folinic acid, fluorouracil, and oxaliplatin).

A couple of days before my first treatment, I went to the cancer center to do my chemo education. The first time I walked in, everything hit home. Up until that point, it was scary and traumatic. Hearing I had cancer was huge, but the surgery was like any other surgery. There was nothing different just because it was cancer surgery. The recovery was very smooth.

Walking into that cancer center and being a patient, not going there to visit someone or cut through to go to another part of the hospital, was quite the gut punch. That was a very big moment.

The beginning was a very interesting experience. The staff was amazing. They took great care of me. They took me on a tour. They educated me about my chemo and helped me choose if I wanted a PICC line or a port.

The friends I made in Man Up to Cancer helped a lot because I was able to talk to them about that stuff. I quickly realized that it’s a widespread experience for a lot of people, especially younger adults. When you realize you’re not necessarily alone, it makes it a little bit easier to deal with.

Any colorectal cancer person is very familiar with the chemo regimen I did. I did six months of FOLFOX. I did 12 treatments.

I know I did a lot, but I got very lucky. My body took to it very well, fortunately. The major side effect that I had was fatigue. I had quite a bit of fatigue.

My skin was not happy. I have sensitive skin as it is, but it did a number on my skin with rashes, dryness, and cracking. I had a pretty rough time with that at some points.

The neuropathy was not fun. Anyone who’s done FOLFOX knows that neuropathy from oxaliplatin can get pretty nasty, but I did a lot to counter it. It wasn’t too bad.

I don’t know the detailed science behind it, but essentially what it’s supposed to do is help with the cold sensitivity because it restricts blood flow to your extremities. It shrinks your veins and arteries down so you don’t get as much blood flow in that area. I guess the theory is not as much chemo gets to your hands and feet so it lessens the cold sensitivity effects.

I’d put my hands in the freezer, pick up frozen food, and be okay. Patients who didn’t do that couldn’t even touch a cold cup. You’d get shocks and it would be extremely painful. I would take all these videos to show to my oncologist and he loved them because it’s not something that he was familiar with at that point.

There’s so much stuff out there and it’s not his fault. It seems a lot of stuff from the States comes to Canada 3 to 5 years later. It hasn’t gotten here yet, but it’s becoming more common. I’m happy that I got to try it and it benefited me so it’s going to benefit a lot of other people that come after me, too, which is cool.

Taking Time Off Work

After that scan, I took time off work to recover because I’d been working through everything. Once that scan came back clear, it was like the weight of the world was lifted.

I realized how tired and burnt out I was from the year and a half of appointments, treatments, procedures, and operations so I decided to take a couple of months off work.

During that time, we adopted a little girl. She was one. That was something we put on hold when I got this diagnosis. We were in the process of becoming adoptive parents when we found out so we had to put that on pause.

Two weeks after my last treatment, we got a call that we were matched with this one-year-old adorable little girl. Two weeks after that, she was living with us. I went from a year and a half of being a patient to a dad in two weeks. There was no time to process anything.

It was this amazing, life-changing thing after a year and a half of this difficult, life-changing thing. It was exactly what my wife and I, and our family needed to have something great happen and get back to living.

Everything changed. I was a first responder before and I was always a big risk taker and helper. After this, I realized, all my priorities had changed. Your outlook on everything is different.

I had to give myself time to heal both physically and mentally but also to figure out who I was, what I was going to do, what I wanted my life to look like now, and what was the healthiest thing for me moving forward. Working through all of that and trying to navigate some of the chemo side effects took a good chunk of the next year.

I was getting scans every three months for the first year. Then I moved up to every six months. I had one six-month scan that was clean.

Discussing Treatment Options

Luckily, I had a lot of options. I had a whole bunch of tests done. It was an isolated incident and there was no spread anywhere else. Everything else is still great. 

After meeting with a thoracic surgeon, the first go-to will be surgery to take it out. I did a PET scan, which came back great. I had a brain MRI, which was clear. I did a CT scan, a cardiopulmonary test, EKG, and all the pre-surgery stuff.

Because of the location, even though it was a small 18 mm tumor, they were going to have to remove my whole lower lobe because it was quite central. They couldn’t do a wedge resection. They would have had to take too much out so it was safer to take the whole lobe.

From the time that lung nodule popped up on the scan, within a week, I had four procedures booked and done. I had a consult with a surgeon the following week.

My oncologist is great. He goes to bat for me, which helped as well, but I was on the phone daily, calling the offices. “Do you have my file? Has it arrived yet? When’s my appointment? Book me in.”

My oncologist called me that week, saying, “Who are you calling? I’ve been getting messages about you all day and I don’t understand where these are coming from.” We had a good little chuckle.

What that ended up doing was getting my second opinion quickly and getting it moved to the tumor board the very next day.

Side Effects of SBRT

I had very little side effects. I had a little bit of fatigue immediately after each session, a little bit lethargic, but that’s it.

It’s quite amazing that 45 minutes of treatment could replace losing a whole lobe of your lung. They’re as effective but on opposite ends of the spectrum with invasiveness so I’m fortunate for that second opinion.

My surgical oncologist would have come to that anyway, but that second opinion sped the whole thing up.

My next scans are in January 2024. Those are going to be big ones. Everybody gave me the holidays off. They said, “SBRT takes some time to work so let’s push the scans back a couple of weeks. Enjoy the holidays with your family. You don’t need test results hanging over your head. We’re going to scan in the second week of January and ensure that the SBRT did what it was supposed to do.”

Knock on wood, it’s shrunk, it’s dead, it’s stable, whatever they need to see. If it did grow at all, I do have the option of doing another round of SBRT on it.

Technically speaking, they don’t know 100% if it’s a CRC met or if it was potentially a second primary cancer in the lung. My staging is not necessarily changing. They’re not rushing to jump on anything. It’s essentially a stage 3B with an unconfirmed met in the lung essentially. I’m in a weird gray zone, I guess you could say.

The way I see it is I can still be NED from my stage 3 colon cancer and have a stage 1 lung something and they blast it out with SBRT. Both of those have extremely high cure rates and success rates. The worst case is that it was a met. It was isolated, the rest of me is clear, they blasted that away.

Do your research. Talk to organizations. There are great organizations out there. Get a network built around you.

Don’t hesitate and don’t be scared to say you don’t understand something, don’t agree with something, you got an idea from somebody, or you heard of a study, new treatment, or what have you. Don’t think that bringing that to your team is going to hurt their feelings or insult anybody.

At the end of the day, it’s your body and it’s your outcome. Doctors are amazing, absolutely. I love my team. There’s a very mixed bag of oncologists and doctors. People have very different experiences. But at the end of the day, they are not the be-all and end-all.

We cannot do this alone. Supporters and caregivers are often not talked about enough. They get as affected as we do. Maybe not in the same ways, but they experience this with us. When one of us has cancer, the whole family does. Don’t forget about those people. Everybody’s trying to help. Surround yourself with good.

There are a lot of amazing organizations out there. I used Young Adult Cancer Canada, Colorectal Cancer Canada, Man Up to Cancer, and CCRAN.

Surround yourself, educate yourself, and be knowledgeable. Don’t put your head in the sand and isolate because that’s not going to go well. Find your people and latch on to what helps. That community will help you get through this.