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Tag Archives: fecal immunochemical test


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Tests, treatments, and more tests – My Journey with cancer (Part 2)

In my last post, I told you about having been diagnosed with rectal cancer. That was on February 16. Hard to believe that was two and a half months ago!

Since then, I have had several blood tests; a diagnostic MRI and CT scan; and appointments with the colonoscopy doctor, radiation oncology team, the surgical oncology team, medical oncology (chemo) team, and my GP. I also had another MRI and CT scan – as prep for radiation treatment. At that appointment, I got three teeny, tiny little tattoos – one on each hip and one at the base of my tailbone. Not to mention a few rectal exams for good measure!

Through the jigs and the reels, here’s what we learned…Hmmm…let me pause here… I’m going to give details about what we’ve learned for the purpose of maybe it helping someone else somewhere along the line. If you don’t like medical details, though, you might not want to continue reading. Just because I have had to learn more about colorectal anatomy the past few weeks than I ever thought possible, doesn’t mean you need to! (I.E. Consider yourself warned. 😀 )

If you DO continue reading, I also need to provide the following caveat: All of the information I’m talking about is based on my understanding of what I have been told. I am not a medical expert. I am not an anatomy expert. This post is not meant to be read as any sort of reference or resource in that regard. I have very likely misunderstood some bits and am for sure oversimplifying many things. This is only meant to represent my own journey. If you want medical precision and exact details, you should definitely look to reliable sources. 🙂

Now…on with the show…

The tumour is about 4 cm long. It is towards bottom of the anal canal, about 1 cm above the interior sphincter. It has spread to a nearby lymph node, which is what has made it stage 3. Because it hasn’t gone any further than that, it isn’t stage 4.

When I met with the radiation team, they told me there were two options: surgery resulting in a permanent colostomy, or a clinical trial they were doing that was having really good results. That trial is called OPRA (Organ Preservation in Patients with Rectal Adenocarcinoma). I don’t know why there is only one P and not two (preservation and patients), but what do I know about creating acronyms and initialisms in the medical field? Whatever it’s called, I’m glad it exists because closing up shop in the back yard was not at all on my list of things to do during my 50s, so I was very happy for an alternative. If you are interested in reading more about it (the trial, not my back yard 😀 ), I am including some links below.

Essentially, in this treatment, I am doing what they termed as aggressive radiation and chemotherapy, following by intensive follow up. The radiation started on April 18 and is every day (Mon-Fri) for five and a half weeks. I am taking a “low dose” chemo drug during the radiation, as well, as it helps with the efficacy of the radiation. (I put “low dose” in quotes because it’s 1,800 mg at breakfast and another 1,800 mg at dinner – not normally what I would call “low”, but again, what do I know?) Blood work is every two weeks during this period and I will meet with the radiation doctor once a week. After this, there will be a break of about three weeks after radiation is done and then chemo will start. The details for the latter are a little uncertain at this point, but what I understand right now is that each week will involve blood work, treatment one day at the clinic, and then two bottles to come home with me. I’ll do that for four months. After that, there’ll be several more tests to see how it’s all worked and I’ll be meeting with the surgical team again. Probably with all of them, I imagine. Who knows! They’re a grand bunch of folks, though, so it’s all good. And by then they will all be very familiar with my back yard, so a reunion will probably be in order! ha ha ha ha ha

Assuming it all goes according to plan, I will then have tests and appointments of various sorts about every two months for… I can’t remember if they said two or three years. Then less frequently up to the standard tracking of five years. This treatment has a 50%-75% survival rate – meaning of me being alive in 5 years. There’s also a 50% chance that in 5 years I’ll need surgery and at that point the colostomy might be back on the table. The diagnostic MRI (or maybe the CT?) showed the tumour to be right on the interior sphincter. That was why the shut-the-back-door/permanent-colostomy was the other option. But the surgical folks were very…ahem…thorough in their…exam…and it paid off. They discovered that there is actually about 1 cm between the tumour and the interior sphincter.

I know…1 cm. Big whoop-di-diddly-do. What can you do with that? Turns out, kind of a lot. In case you don’t know, the rectum is not very long. The colon is about as long as from here to Mars. OK…not really. It’s actually about 5 feet or about 150 cm. (Interestingly, it’s about the same size in everybody – whether you are teeny tiny or biggie wiggie!) If you have colon cancer, they can frequently lop off 30 cm without too much trouble – taking the cancer cells and a decent amount of non-cancerous tissue on either side of it to be on the safe side (as in the recent experience of a friend of mine’s brother).

The rectum, however, is only between 10 and 15 cm long total. My tumour, as mentioned, is 4 cm long. That only leaves 6 to 11 cm of rectum to play with. If it’s on top of the sphincter, then the sphincter has to come out with the rest of the rectum and colostomy here we come.

However, the surgeons explained that even with just that 1 cm distance, if surgery is required at some point, it might not necessarily and automatically mean closing up shop and going with the permanent colostomy. They might (everything is still, naturally, maybe and might) be able to remove the tumour and the rest of the rectum and bring the colon down to join onto that 1 cm bit. There would be other physiological challenges – a colon is not a rectum, after all – but nonetheless it was music to my ears!

That’s all still a ways away, but I wanted this post to include everything I’ve learned up to this point about the treatments and options so there you are!

Before I close, I need to add that everybody I have dealt with medically at all stages in this journey has been absolutely lovely. Starting from the nurses and doctors during the colonoscopy to currently in my radiation treatments. Most of them are very personable, several of them have a great sense of humour, and all of them seem to be very competent and also very genuinely caring. The colonoscopy doctor was away on vacation the week that my MRI test came back and he called me the Sunday he got back because he saw the results were in and wanted to see how I was doing. Reread that if you need – a doctor called a patient on a Sunday for no other reason than just to see how I was doing.

In other posts I will tell you how I am doing (spoiler alert – it ain’t all rainbows and bluebirds, boys and girls!), but whatever else is happening or however I’m feeling, I am being well taken care of. I feel truly blessed to have all these different teams of people taking care of me.

Resources

As promised, please see the links below for information on the OPRA trial:

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Introduction – My journey with cancer (Part 1)

You are never really quite prepared for a cancer diagnosis. I certainly wasn’t. Yet, there I was on February 16, 2024, on the table at the end of what I expected was a routine “you’re getting old so it’s time” colonoscopy and that word was thrown into my universe and my universe was thrown upside down.

Here in Ontario, the health department sends out fecal immunochemical test (FIT) kits every 2 or 3 years once you turn 50. It’s not what I’d call “fun”, but it’s a very simple process to get a stool sample and send it off to the lab.

This time it came back with an “abnormality” and I got a call from a colonoscopy clinic to schedule that procedure.

The next day I got a call from my doctor to let me know that it was normal, nothing to worry about.

“It happens fairly often that blood comes back,” he said, “but it’s usually just something somebody ate. I’m not worried about it and don’t want you to be, either. However,” he continued, “if something does come back, then we are catching it and able to treat it early.”

I really wasn’t worried. Not at all. Well, not about the result. I had heard horror stories about the process to get ready for a colonoscopy so I wasn’t what you could call looking forward to that part of it, but I wasn’t at all worried that the result would be bad. Not like the mammogram scare I had had last fall.

That had also been another routine test. I do them dutifully (again another after-50 test encouraged by the health department) and never have a problem. I did it in October after I got back from a trip to Newfoundland. But this time it came back with an abnormality. Barely two days after the mammogram I got a call saying that I needed to schedule another one plus an ultrasound. THAT put me into a bit of a spin, I have to say.

Breast cancer is in Dad’s side of the family. Two of his sisters had it. Not till their late 70s or early 80s, but still it was there. It was pretty stressful. I was super relieved when I saw the doctor after the results came back and found out it was just a benign cyst – nothing to worry about. But it was a long few weeks between finding out there was an abnormality, doing the new tests, and getting the results. Once I got them, I was totally fine.

But there’s no history of colorectal cancer in our family that I am aware of so I had zero concerns about the FIT result abnormality. I fully expected the colonoscopy prep to be the worst part of this experience.

At the clinic, the anesthesiologist explained that while I would only be sedated, as opposed to being under general anesthesia, I wouldn’t be aware of most of the procedure. Towards the end of the procedure, she would bring out of the sedation and I would be aware of what was happening, which would be normal. I don’t remember going to sleep, but I do remember waking up.

There on the screen in front of me was the inside of my colon. The doctor doing the procedure explained what we were looking at as the camera wound around some of the curves. I was amazed at how clean it was in there! All the bother of the few days before had definitely paid off! 😀

Then he backed the camera up and stopped it so that this bumpy, blobby looking thing was on the right-hand side of the screen. I knew that sometimes they find polyps when they do the procedure, and they cut them out when they do. I thought they were smoother bumps, not like this, but still I expected him to say that’s what this was.

But he didn’t. He said, “And this is cancer.”

To say I was shocked would be an understatement. I remember the anesthesiologist gently and kindly squeezing my arm when he said it. I then thought, thankfully, “You need to focus now and pay attention to what he’s saying. You can worry about it later.”

Weirdly, because I’m curious about, apparently, everything, I also thought, “I wonder if I could get a still shot of the tumour?” I know. Weird. But I still wish I had asked. I was a bit groggy from the sedation and didn’t have my glasses on so I didn’t have a full, clear view of it. And I would like know more about this thing that’s been growing inside of me – to give it a face, so to speak. In any event, I didn’t ask.

I got dressed and once they cleared me from the sedation I met the doctor in his office. A friend of mine had brought me to the appointment (because you aren’t allowed to drive yourself home afterwards) and the nurse asked if I wanted them to ask her to come in for the conversation with the doctor and I said yes. I knew from things I had read about patient advocacy that it’s always a good idea to have someone with you when you are at a serious appointment. I wasn’t expecting that day to have a serious appointment, but there we were.

Carol came in and looked a bit confused. “Is everything OK?” she asked.

I pointed to a chair and asked her to sit down. “I have cancer,” I said.

Her eyes widened in likely the same disbelief that I was feeling. “The doctor will be in shortly to talk about it. I need you to listen to help make sure I don’t miss anything important that he says.”

He said that I would likely need some combination of surgery, chemo and radiation – possibly all three. It will depend on if it had metastacized (spread) or not. He was going to schedule a CT scan and an MRI. He also gave me a requisition for blood work that needed to get done. He explained that he had taken some tissue samples for biopsies and those would confirm 100% if it was cancer. From his experience and how it looked, he was about 98% sure it was. If the tests showed it hadn’t metastacized, he explained that it was very likely it could be cured. If it had spread, then it would depend on a bunch of things. The results of the tests would help determine the approach to take.

That was February 16. We are now at April 21. A lot has happened in the interim, but it’s too much to put in one post. I plan on doing a series on this. I had intended to start on it sooner, but, as you can probably imagine, there’s been a lot going on!

That said, I think it will be helpful for me and hopefully helpful for you if to continue to do this. We all go through health trials differently – life trials, for that matter – but it can still be helpful to learn from each other, how we each cope with these challenges that come our way.

On that note, stay tuned for more on this unexpected journey!

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