Q: I’ve just been told I have colon cancer. Now what?
A: Step 1: don’t panic.
I know that is easier said than done. So let’s take a moment to catch our breath together.
The first thing I tell all my patients when they come to the colorectal cancer clinic is that they will leave the clinic with an action plan. I reassure them that the chaos that has dropped onto their life in the preceding days will gain order and direction; we will make a plan together and the order will bring clarity, and clarity will bring control, and control will – I hope – bring peace.
This sounds vague. But I’ve sat across from hundreds of patients right after their colorectal cancer diagnosis, and listened as they express fears of imminent death and a lack of control. In the vast majority of cases, neither of those two fears will come to fruition.
Most people are told this terrible news right after a colonoscopy that was ordered for either screening or symptoms. After the scope is finished, you are sitting in the recovery area with the analgesia wearing off, and a physician whom you just met that afternoon begins to tell you that they saw a “lump” or a “mass” that has the typical appearance of a cancer and so they did biopsies to confirm. The doctor reassures you that they will make a speedy referral to a surgeon; she does her very best to settle your nerves and present a plan but in the moment, you don’t even know what questions to ask. And on the way home, you can’t remember anything that was said after the word “cancer”. So how can you not panic? How, with so little information and such a terrifying precedent, can you not be completely petrified of the future that lies ahead?
The answer, I have learned, comes with expeditious intervention and a clear understanding of the action plan. Now, I know you can’t control the speed of your referral or treatment. So after a pause and a deep breath, let’s focus on what you can control: understanding the plan. We’ll call this Step 2.
When I meet you as patient for the first time, my goal is to very clearly articulate a plan that makes sense and is linear, so that we can approach the problem step-by-step, with you always knowing the next step, and knowing that you are in the driver’s seat.
To help you take the wheel at your initial visit:
- Bring at least one close family member or friend to support you.
- Assign your companion to write everything down so you don’t have to.
- You can also record the discussion so you can be sure you remember all the details (Some hospital policies differ on this — be sure to always tell your surgeon you are recording!)
- Ask questions about ANYTHING you don’t understand. This is your body and your life; you have to understand what’s going on, and if you don’t, it’s because the surgeon hasn’t explained it well enough yet.
- Ask about minimally invasive surgical options if surgery is being proposed.
- Make sure you are comfortable and have established a trusting, confident relationship with the surgeon. This is a critical step to controlling anxiety.
- Ask for a second opinion if you feel you want more answers or if you’re not fully convinced of the proposed plan.
- If feel extremely anxious, ask your surgeon or nurse navigator for other support services. Most cancer centres have social workers, dietitians, psychologists, psychiatrists and more professionals available to assist you.
Before you leave your initial consultation, be sure you know exactly what tests are next and why you need to undergo them. For any new colon cancer diagnosis, we need to understand the disease both ‘locally’ and ‘distantly’. That means we want to know the exact anatomy of the cancer itself; it’s size, location, proximity to other organs in the body. This is called local staging. We also want to know whether it has spread to other organs. This is called distant staging and cancer that has travelled to other organs is called metastasis. In order to complete this staging, your surgeon will order a CT scan of the chest, abdomen and pelvis. We also need to confirm the exact location in the colon that the tumour is growing. To do this, I’ll often repeat the colonoscopy in order to tattoo the tumour by marking its location from the inside of the colon; the tattoo goes through the wall of the colon to ensure that I can see it’s location from the outside of the colon during the potential operation.
Knowing what tests come next and what your care team will do with the results once they have them can help restore your control.
Once all these initial tests are done, you’ll be seen again in the cancer clinic and a definitive plan will be established. In most cases of newly diagnosed colon cancer, the next step would be a minimally invasive surgery to remove the tumour and restore the bowel’s function. Your plan will be unique to your specific needs.
Hearing the “C” word likely stopped you in your tracks. Take a moment, and take back the driver’s seat: ask as many questions you need to so that you understand what comes next in your treatment plan.
Links to Resources:
Patient and Family Support Program at Odette Cancer Centre