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

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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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Author: Lucy C

I am an avid reader and learner who, not surprisingly, also loves to write!

10 thoughts on “Tests, treatments, and more tests – My Journey with cancer (Part 2)

  1. Naomi Yocum's avatar

    It makes me so happy to know that you are in kind and capable hands. Yay for that one centimeter!!

    Liked by 1 person

  2. Kim Parmar's avatar

    Thank you for sharing. I’m walking with my mom through this journey now. It’s amazing how someone’s journey can help another. Sending hugs and keeping you in my prayers. Kim (Schau) Parmar.

    Liked by 1 person

    • Lucy C's avatar

      Hi Kim…thank you for reading and for your kind words. I totally agree how we can each learn from one another’s journeys. I wish you and your mother strength and healing and beautiful memories amidst all the icky stuff that comes with it!

      Like

  3. Hugo's avatar

    Thanks for sharing your journey, my friend. It seems you have a great team of medical staff taking care of you. Today and everyday is a gift. Sending you big hugs.

    Liked by 1 person

  4. Leslie Belyea's avatar

    Sounds like your doctors have everything in hand (not that you want some of those things in their hands 😮 lol). I’m glad there’s a straightforward plan, that always helps me feel better about things.

    Is there anything that I can be doing for you? I’d love to get together, but with dad in the hospital and us going back and forth every day, I’d hate to give you any germs. If there’s anything else I can do for you though, please let me know ❤️


    Liked by 1 person

    • Lucy C's avatar

      Thanks, Leslie… 🙂 Yeah…I’m being careful. Not a monk, but trying to reduce chances of catching something. We’ll have a great visit when we’re both through all this hoo-hah! xl

      Like

  5. Germain's avatar

    How are you doing, sorry you are going through this, it appears your medical team is treating you well 🥳… let me know what I can do? Bring you to appointments etc…. I am sending positive thoughts your way 🙏🏽…

    Like

    • Lucy C's avatar

      Hi Germain! Thank you for all the positive thoughts… I’m doing OK. Just finished radiation this week. Symptoms will get worse for 2-3 weeks and then I will start to heal before chemo starts. It’s a rough road, but I am very blessed to be so well supported. Once this healing stage is done, let’s get together! xo

      Like

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