Late-Stage Colorectal Cancer: What to Expect

October 12, 2021
Late-Stage Colorectal Cancer: What to Expect

Written by Mike Rohan

You will remember the day you’re diagnosed with colorectal cancer for the rest of your life. With the diagnosis, your life is utterly transformed.

In this article, I’ll draw on my own experience being diagnosed with late-stage colorectal cancer at the age of 33 for specific examples of what you might face. Everyone’s cancer journey will be unique. But I hope I can help allay the fear, confusion, and helplessness you feel early on.

Listen to your body and listen to your partner

Many people experience few or no symptoms of late-stage colorectal cancer even though their cancer is at an advanced stage. Pay attention to unexplained weight loss or any blood in your stool.

In my own case, I had a recurring small amount of blood in my stool, which I ignored. Luckily, my wife didn’t. She urged me for months to get it checked out, even though I was sure it was hemorrhoids. After about six months I went to my general practitioner and he did diagnose the mass in my rectum as hemorrhoids. But we were both wrong. Fortunately, I kept seeing blood in the stool, and my wife kept asking me to get it rechecked. I ended up seeing a gastroenterologist, who correctly diagnosed the mass. Bottom line: listen to your body and your partner.

Get multiple opinions

The first misjudgment that patients make is to rush into their choice of hospital and treatment, as well as the surgeons who will operate on them. This misjudgment is understandable because you are scared, confused, and getting a lot of info thrown at you at once. But it is vital that you step back, evaluate your options, get second opinions, and not agree to the first protocol presented to you. With colorectal cancer, you often have a bit of time to find the best option.

In my case, the initial diagnosis was made in 1994 at a fairly large but average regional hospital. They wanted to do major surgery the next day to remove the tumor. Time was of the essence, they said. I declined to have the surgery so soon, wanting to explore other treatment protocols. 

A treatment protocol is nothing more than the sequence in which your care will be given. For example, with colorectal cancer, the protocol might be radiation first, then chemotherapy, then surgery. In other cases, only surgery is needed. Each hospital follows its own protocol. What I learned is that better hospitals offer better protocols, leading to better outcomes. This is hugely important. An outdated or incorrect protocol can be the difference between life and death.

This is why I urge you to explore all options before deciding on a treatment. Don’t go to get operated on just because the hospital is only five minutes from your house. I see friends and relatives still make this mistake. Get a second or even third opinion on your care. Visit multiple hospitals. Interview — yes, I mean actually interview — different surgeons until you find one you are comfortable with.

We decided to go to a large, well-known teaching hospital over an hour from home. It ended up being a fortuitous decision. The protocol that the smaller hospital wanted to use (surgery first) was outdated. The new protocol was chemotherapy and radiation to shrink the tumor, then surgery months later. This one decision was probably the best we made. 

Mistakes will be made

When I started my cancer journey, I thought that doctors, especially surgeons, were gods, and that hospitals rarely made mistakes. Sad to say, I was wrong on both counts. Even at the best hospitals, mistakes and misdiagnoses will not be rare. 

I received excellent care, but a 2–3 year treatment cycle is bound to include human error. The errors pile up. You and your loved ones must be your own advocates to minimize mistakes.

Be vigilant, ask questions, and take nothing for granted

The first major error was my GP’s misdiagnosis with hemorrhoids, which delayed my treatment by six months; by the time I was correctly diagnosed, the tumor had begun to metastasize. 

The errors continued from there. For my first surgery, the protocol was an epidural from waist to legs to ensure I’d feel no pain. But I woke up from the operation in extreme pain: I felt like I was being stabbed in my abdomen. Since the doctors believed the epidural had been properly administered, they didn’t understand why I was in such pain so soon after surgery. I spent the night without any pain medication. The next day, after consulting with a pain doctor, they realized the epidural was improperly placed — I’d received little or no pain treatment at all.

Two weeks after my sixth surgery, I was still on heavy pain medication. My oncologist thought that I should’ve been off pain medication by then, and he was ready to cut it off, though I continued to experience persistent, severe pain. Fortunately, my surgeon came in unexpectedly, and I explained the problem. He did a physical exam, found a fistula, or hole, that had formed after the operation, and scheduled an operation to correct it. If he hadn’t done the exam, I would’ve been taken off the pain medication prematurely, and faced potentially life-threatening complications from an undiagnosed fistula.

In a perfect world, sometime in the future maybe, cancer care and treatment will be pain free.

Unfortunately, in most cases, pain is still something to be dealt with.

Please don’t let the fear of pain deter you from following the course of treatment outlined by your care providers. Pain is usually well-controlled in most healthcare regimens. If the pain is not well controlled, you or your support team must advocate for further relief.

Ask for, and accept help

One of the many ways in which cancer changed me was in my ability to ask for help when needed, and to accept it when it was offered. I guarantee you will need help, too.

My wife gave birth to our second child the week before I was diagnosed. She also worked full-time and had a 2-year-old to care for. This did not stop her from doing most of the heavy lifting in my care. I was supremely fortunate to have her and a supportive family that I could depend on.

If you are the kind of stoic, I-can-handle-anything type of person, as I was, try to get over yourself as quickly as possible. You will have so much on your plate that you will need substantial help. If you are offered help, take it. Most people who offer help do mean it.

Pain will be a constant companion throughout your journey. So as you progress in treatment, mental state might be the most important of all.

The journey towards freedom from cancer is similar to the journey through grief from the death of a loved one. First, there is denial (it can’t be me), then anger (why me) and eventually, acceptance. I urge you to try and progress towards acceptance as soon as possible. The sooner you get past wallowing in self-pity, the sooner you will be on the road to recovery. I know how hard that journey is, and I also know it is easier said than done. 

Whenever I had a difficult surgery coming up, I tried to look past the surgery as much as I could, and think instead about how much closer I would be to being cured. Many times during the course of treatment I would lay awake all night, unable to sleep, usually because of pain. On these nights, I usually said to myself, “Just hang in til dawn.” I didn’t know why. Nothing was going to change. No new pain relief was coming. It would just be another day of treatment.

But now I understand why I wished for dawn. It was my way of trying to move forward, no matter what. I could either dwell on the present pain, or try to look past it, toward the next chapter. 

Even though the treatment is extremely difficult, there’s no prize at the end, and no halos are awarded. But of course, it changes you.

Survival & Gratitude

As he was undergoing treatment for cancer that would eventually take his life, the musician Warren Zevon said “Enjoy every sandwich.” As a survivor, I understand why. Surviving cancer makes you more grateful for the little things, as well as the big things. The prize is survival. My prize has been 25 years and counting of sandwiches, sunsets and my family’s smiles.

I wish you a speedy cancer journey. The road is long and painful, but it’s worth it.

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