SHARED EXPERIENCES ON LIVING WITH COLON CANCER

The colon is also called the large intestine. The ileum (last part of the small intestine) connects to the cecum (first part of the colon) in the lower right abdomen. The rest of the colon is divided into four parts:

• The ascending colon travels up the right side of the abdomen.
• The transverse colon runs across the abdomen.
• The descending colon travels down the left abdomen.
• The sigmoid colon is a short curving of the colon, just before the rectum.

What follows is a story about a young man 30 years of age. While there is 55 years between the two of us, his story could well be mine too...We both live with stage 4 colorectal cancer.

Brendan Menapace leaving
treatment centre.

It is an intrusive, worrisome, messy, at-first sickening way to live out one's life. We become self-conscious and prefer to withdraw from society whenever possible. Clothing hides a lot...Too bad the same cannot be said for a permeating odor that is a dead giveaway in close encounter situations. The last thing we want to do is talk about it...But someone has to.

Colon cancer, it seems, is no respecter of age.

“I just turned 29, so I didn’t really think colon cancer,” the now 30-year-old  Brendan Menapace told TODAY.com. “All the symptoms really got worse, so I knew something was wrong, and I needed to find an answer.” After testing, Menapace learned of the devastating results.

“It was definitely surprising,” he says. “It hit me pretty hard.”

In the summer of 2021, Menapace experienced pelvic pain, constipation, bloating and fatigue.

“I would eat and then pretty much immediately, felt drowsy and wanted to lay down,” he says. “I felt terrible.” He also noticed blood in his stool and couldn’t sit for more than an hour and a half, which he noticed while driving his car.  

“In retrospect, it was pretty much the textbook things they say to look out for,” he says.

He visited a doctor who sent him for a colonoscopy in early October 2021. As soon as Menapace gained consciousness in the recovery room, he knew it was bad. “They told me there was a plan in place pretty much immediately.”

Two weeks after his test, he started chemotherapy from the end of October until January. Then he underwent 20 radiation sessions to his pelvis until March.

“From there, basically things had shrunk enough that surgery was viable,” he explains. “But chemo and radiation take a toll on your body, so I was in pretty rough shape.”

In May, doctors surgically removed his rectum, part of his colon and lymph nodes, and he received a temporary ileostomy bag as his colon recovered. In July, doctors reversed his ileostomy, and by October, a PET scan showed no evidence of disease.

“Until you hit that five-year mark, you’re not considered cured or cancer-free,” Menapace acknowledged. “Because of the way it spread, it wasn’t as simple as just cutting out the tumor or declaring me cancer-free.”

A recently published report from the American Cancer Society shows that the rates of colon cancer in young people are increasing. The reason for the increase remains a mystery.

Current screening recommendations for colon cancer are, starting at 45, people need to undergo a colonoscopy every 10 years. With colonoscopies doctors can detect precancerous polyps and remove them before they become cancer. 

The key for now is education and that’s not just educating people that are younger, but educating their health care providers that if someone comes in with blood in their stool or some of the symptoms, they might need to move screening for colorectal cancer higher on the differential.

Finding colon cancer earlier often means surgery alone can remove it. As it metastisizes, it becomes more difficult to treat. Once it spreads to the liver, the chance of it being curable is much lower.

Brendan Menapace experienced neuropathy when he underwent chemotherapy but is lucky that it stopped after treatment ended.

“It has been a huge learning curve and just the trauma to my colon and lower digestive system — things are never going to be the same,” he says. “There’s a new normal that I’m working toward and that takes a lot of work in its own right. I have to be careful eating.”

He returned to work and exercise, resuming as much of a "normal life" as he can.

“When I leave the house, I have to know where a bathroom is. It’s something in the back of my head, and I have to think about something that I never had to before,” he says. “It’s hard to fathom the idea of something being different forever.”

With the help of his partner, friends, family and therapy, Menapace is trying to grapple with the changes he faces due to cancer. He encourages others to talk about their symptoms with their doctors, no matter how strange it might feel.

“You’re trained not to talk about your poop. You’re trained not to talk about your butt. This is not what you talk about in polite society. At first, I would rely on euphemisms and be kind of fake and make jokes,” he says. “But if you’re not frank in explaining what you’re going through, you’re not going to paint the right picture for your care team. You’re not going to get the right care...and your friends will never understand.

UPDATE FROM DICK: At least Brendan's cancer was detected in the early stages and he has recovered sufficiently to resume reasonably normal activities, albeit a mere shadow of his former self. I keep my fingers crossed for him.

Unfortunately for me, following an emergency ileostomy December 19, 2019, daily chemotherapy treatments combined with radiation for a six-week period and a subsequent colonostomy when it was determined that complete reversal was not advisable at my advanced age; I ended up with permanent need for an ostomy bag attached to my stomach and a living hell for the rest of my days.

Two new cancer tumors were detected late last year (one internal near the rectum and the other growing externally at the site of my stoma where the ostomy bag attaches) and I resumed chemotherapy treatment in January. I consulted three oncologist surgeons, all of whom deemed my tumors inoperable and mutually suggested chemo and radiation as the only means of giving me "better quality of life".

Long story made short, I have opted out of any further chemo and radiation treatments. Having been there and done that before, why should I make myself sicker all over again when my fate has already been sealed.

I really have no pain or discomfort to speak of, just the ultimate in every day worry and inconvenience associated incontinent needs. I can live with that. I've been doing it all along!

Just one imposing obstacle though...The astronomical cost of assistive devices required to keep my ostomy draining adequately -- a two-piece skin barrier, an ostomy ring barrier and a two-piece drainable pouch, being the main component parts. 

I never know how long a complete appliance application will hold up...Some times just one day, other times three or four days if I'm lucky. Conditions have to be perfect and they are not always. A single minor variance can result in a faulty and short-lived application. 

I figure that each change costs in the neighborhood of $60. I order ostomy supplies for a two-month period (see photo below) at an average cost of $650 (or close to $4000 for the year). A government assistive devices program initiative reimburses me $480 twice a year. Well received but a drop in the  bucket overall.

The tumor, growing as we speak, engulfing the stoma and impeding its ability to drain, poses an ongoing problem and in the end will undoubtedly do me in. One centimeter larger in circumference and there will not be an ostomy device on the market designed to fit over the imposing growth. That's an inevitable bridge awaiting crossing.

In the end a Go-Fund Me promotion page may eventually be an option. But over my dead body!

Shown here is a two-month supply of ostomy assistive devices at an average cost of $650.00. I also had to fork out $400 for a special tailor made belt to help minimize unavoidable leakage at the stoma attachment site.

Now you know the other side of the story!