I am surviving Stage-4C colon cancer. What this means and why you should care.
The conversation around a new cancer diagnosis usually involves two parties: the patient and a friend/family member. At the time of the diagnosis, the patient is generally just beginning to learn about the world of cancer terminology, while the friend or family member may know even less. There are a lot of confusing bits of information coming from all directions, so while the patient is learning about cancer and their upcoming treatments, everyone else is mostly stuck in an information blackout. That is unless they take it upon themselves to research on their own. Realistically speaking, people may not have the time or interest to do a deep dive into what sort of cancer their friend is dealing with, so they rely on the patient to tell them what's going on. It can be confusing for everyone, so let's break this down in ways everyone can understand (hopefully without being frightened).
Cancer Staging Basics
The new patient is often told they have Colon Cancer along with what stage that cancer is. There is a difference between clinical staging and surgical staging. Clinical staging is done using diagnostic tests like a physical exam, biopsy, and imaging (CT, PET/CT, MRI, etc.). Surgical staging (or pathological staging) is exactly what it sounds like: the cancer stage is determined by examining tissue removed during an operation.
For the patient, knowing the staging is very important: it guides what sorts of surgeries and treatments they will have to have. It also gives everyone involved an idea of survivability. For the friend hearing the staging, though, it means almost nothing. I think most people intuit the higher the number, the more serious the cancer, even if we have little idea of what these numbers and letters actually mean.
My surgical/pathological staging: pT4a pN2a pM1c meant that I had Stage IVC colon cancer -- primary cancer had grown through the wall of the colon or rectum (T4a), it had spread to 6 nearby lymph nodes (N2a), and it had spread to distant parts of the peritoneum (the lining of the abdominal cavity), and to a distant organ (liver) (M1c). Read more about Colon Cancer Staging
I know that sounds confusing; it was overwhelming the first time I looked at the information as well. The advice my surgeon gave to Louis while I was still recovering from anesthesia was, "Don't think in numbers." We tried to hold on to that statement as we navigated the pathology reports and formulated our questions for the oncology team. Saying Stage IVC meant much more to us than it did to pretty much everyone else we told this to. Other cancer patients, survivors, and caregivers knew what I was up against.
Overall, though, I felt as if I was facing death alone because the majority of people were texting "You got this!"
This is serious
I was not being melodramatic when I wrote about my mortality being months away. If you clicked on the cancer staging link above, you'll see that Stage IVC is the last stop on the train to nowhere. It is a heavy burden to think that if I hadn't gone to the doctor when I did, I may have died before anyone figured out what was wrong with me. How do you sleep at night with that thought floating around your brain? You don't. I had to remind myself that everything happened the way it was meant to happen, and I was placed in the care of the best oncological team at the right time for them to make sure I lived.
Long after treatments were done and I was recovering from my colostomy reversal surgery, I finally got my doctors to tell me that which they had hidden from me so well for over a year: they didn't think I would live 6 months past my diagnosis if treatments didn't work. By that point, I was ready to hear this (having outlived that expiration date by 9 months) but realized that there were several important points I needed to make to my friends, family, blog readers, and book buyers.
Did you know the 5-year survival rate of Stage IV colon cancer is roughly 10%? If you wake up at 2:30 a.m. on any given night, know that I'm likely to be awake as well, mulling over this statistic. Now, to be fair, the ACS says that these rates don't take a lot of things into account, including your age, overall health, tumor response, tumor location (right or left colon), and genetics of the cancer. And, ironies of ironies, they are 5 years behind in their data.
The cancer in my body responded well to all the treatments that were thrown at me. During my first surgery, the surgeon removed every bit of cancer he saw except for a big mess in my lower pelvis (inaccessible) and the metastases on my liver (too deep within the organ, would have required a bigger, separate surgery). Chemotherapy removed all that but left behind implants (tiny micrometastases that broke away from the original cancer, embedded in the surrounding tissues). Intensity Modulated Radiation Therapy (IMRT) burnt those away. I had a colostomy which was able to be reconnected/reversed in a surgery during which a hidden metastasis called a Krukenberg tumor was discovered in my ovary. I am on adjuvant chemotherapy at least through December 2023. Piece of cake, right?!
I was so lucky it was hard to convey the unreality of this situation. For many people, one round of chemo doesn't cut it (I have a friend who has faced three rounds -- 18 doses -- of this same chemotherapy) while for others they have to have radiation at the same time as chemo. People may not have the option of having their colostomy reversed. Basically, there are too many outcomes possible for any of us to feel confident that things are going to work on our first try. And we can never base our expectations on what someone else went through.
I was exhausted. I was beaten up. My body is different from what it was when I was being wheeled into the operating room for my first surgery in December 2021. None of this was easy. My experience was the way that it was because I am me, not because of some magic drug or treatment, or because there is something special about me.
Just because I was candid about my experience to an audience on my blog and in my book, it doesn't mean that what I went through wasn't difficult. And it doesn't mean that Stage IVC colon cancer is easy. And it doesn't mean, if you meet someone in the future with Stage IVC colon cancer, that they will do as well as I did. I really really hope they do. And you should hope for that as well. But, please be realistic about it. Understand that they are actually facing death. They did not have a polyp removed during a colonoscopy and told to return in 5 years for another look. These are people who are facing doctors who shake their heads a lot, who say things like, "We're going to hit it with everything we've got," and who get sideways glances from the nurses every time they show up for treatments. I remember the way the nurses would say, "Lisa?" when they came into the waiting room to collect me for my next blood draw -- as if they were afraid to see what the most recent treatment had done to me.
Be Realistic, Supportive, and Educated
I am still alive. It hasn't been 5 years yet. But I am still alive. And I am using this time to speak and educate those around me. You don't need to become an expert on colon cancer to appreciate the message of this particular blog entry. Do not assume that everyone with Stage IVC colon cancer will have the same experience as me. You could be placing very unrealistic expectations on your friend/family and denying them the very real support they need from you. Understand how serious cancer stagings are to the mental health and outcome of the patient. Arm yourself with knowledge and empathy, and always follow your friend's lead in how they want to be supported during this excruciatingly frightening and painful part of their lives.