Why Are You Still Doing Chemo?
There is much confusion around the term "adjuvant chemotherapy" and what it actually means for the patient.
In September of 2022, ten months after my diagnosis of Stage-4C colon cancer, I heard the most wonderful words any oncologist and surgeon can ever speak: "no visible signs of disease."
When I heard those words, I did not react with enthusiasm or relief. I didn't know what it would mean for me in the coming months (or years), but I knew that everyone was already talking about "the next phase" of my treatment.
Adjuvant Therapy is defined as "a therapy given in addition to the primary or initial therapy to maximize its effectiveness. An example of such adjuvant therapy is the additional treatment usually given after surgery where all detectable disease has been removed, but where there remains a statistical risk of relapse due to the presence of undetected disease." The term is most commonly used to describe cancer treatments.
Sitting in my oncologist's office and hearing him explain what my adjuvant therapy would entail, I felt comforted -- I was not going to be patted on the head and sent on my way as if nothing had ever happened. When a person has gone through cancer treatments, it is not uncommon for them to be afraid when treatments stop. I was stressed during the 12 weeks between the end of my chemotherapy and the start of radiation. Was the remaining cancer growing out of control now that there were no drugs flooding my system? Even after radiation, while I waited for my next PET/CT scan and my 4th surgery, I was anxious, hoping that nothing was developing inside of me while we waited.
"No visible signs of disease," means just that: no one can see cancer cells. If there is any cancer left in my body, it is too small to see with the naked eye or with a PET/CT, which uses radioactive glucose to stimulate any hypermetabolic activity in cancer cells. Just because they can't see it, doesn't meant there may not be any more left. Personally, I am not willing to bet my life on that. It is also why, less than a year after that statement was made, no one is using words like "remission"* and no one will ever use the word "cured."
One month after I heard the words "no visible signs of disease," I began on a 3 week cycle of two drugs: Xeloda (Capecetabine) and Zirabev (bevacizumab-bvzr) which is commonly known as Avastin. The Avastin is given by infusion at the cancer center on the first day of the cycle, while Xeloda is a pill, which I take twice every day for the next two weeks. The third week of the cycle, I have a break from all the drugs. Xeloda is basically 5-FU (which I was given during my FOLFIRINOX chemotherapy in the spring of 2022) in pill form, and it comes with all the same side effects, though they are muted and much easier to live with. Avastin comes with the lovely side effect of bleeding, so I am covered in small bruises caused by any little ding or bump; I have small broken blood vessels on my face; my gums bleed every time I brush my teeth; and my nose is constantly running and/or bleeding. Again, nothing I can't live with.
What is this Adjuvant Therapy supposed to accomplish? Imagine my situation: I had metastatic colon cancer which means that cancer cells were circulating through my entire body and eventually took up residence in my liver and various other organs. This is where the "4C" part of the diagnosis is important. Simply put, this means that the cancer had spread to a distant organ, several lymph nodes, and the peritoneal wall. FOLFIRINOX chemotherapy appeared to knock out the liver metastases as well as the primary source in my pelvis. Surgery had removed 6-inches of my colon, a section of my peritoneal wall, and both ovaries. Radiation bombarded the remaining visible cancerous tumors in my pelvis and, according to a scan and a surgeon, appears to have removed them.
Knowing all this, now I pose to you a question: would you walk away after hearing "no visible signs of disease" feeling confident that all the cancer is gone? Might you always wonder if there were more tiny cancer cells inside your body which the PET/CT and surgeon couldn't see? How trusting are you?
Me? Not so much. Despite my diet, exercise, and healthy lifestyle, I still got late-stage cancer. How can I be expected to trust in anything ever again? I did everything right, and still got this thing which I was supposed to be at low risk for. I also read an outrageous statistic: 75% of colon cancers occur in people with no known risk factors. (ahem, me)
So, when the oncologist said, "We're going to start an adjuvant chemotherapy for at least a year," I was happy, willing, and enthusiastic to do it. With the high probability of microscopic cancer cells still floating around inside me, you better believe I'm going to do everything possible to wipe them out. My internal environment is toxic (I'm pretty sure any mosquito that bites me dies soon after) with the hopes that nothing can grow out of control.
How long will I be on the drugs? That's an interesting question, to which no one really has an answer. One to three years was the initial estimate by my doctor. I've been told that no one really knows how long someone my age should remain on the drugs. Historically, colon cancer is an "older person's" disease -- the average age of colon cancer diagnosis has been in the mid-70s. By the time someone goes through their primary treatments, they are in their late 70s, they have other health issues, and although they may go on adjuvant therapy for their colon cancer, they may die from a heart attack or stroke within 5 years anyway. Beyond this measure, no one really knows the risks of remaining on the drugs long term, or, more importantly, how many years beyond treatment before a recurrence of the cancer happens?
When translating this over to someone in their 40s, the doctors are just guessing. We are their "clinical trial" whether we like it or not. Personally, I like it. I am happy to take the drugs, side effects, inconvenience, and all, and hope that this will knock out the last bits of cancer for a long long time. Some people choose not to go on or remain on the drugs, which is their prerogative, but this was my choice.
After we announced my doctors' "all-clear," many people immediately questioned why there was more treatments to be had. I have heard the words, "But, why?" more times than I can count when it comes to the current drugs. Simply put, cancer is not like a bladder infection where you take an antibiotic, in a few days you're "cured," and then you stop the drugs and go about your business like it never even happened. Cancer is much different physically and emotionally. The drugs can act as a sort of training wheels for the patient, easing back into a life without heavy drugs and weekly doctors' appointments. But they really are doing something inside our bodies. They are working to prevent a recurrence of the cancer in the immediate future. Hopefully giving our bodies a running head start of years (if not decades) to get ahead of any possible new cancers popping up.
I know it's confusing to find out a cancer survivor is still going through treatments after it all seems to be over; I know it's disappointing that they are not celebrating their supposed clean-bill-of-health; but I also know that it's not obvious why the cancer survivor isn't sharing much about this part of the treatment. I have chosen not to share much of this part of the treatment plan publicly because it's exhausting to continually explain what's happening. But it's also frustrating to explain why it's happening. I have chosen to keep much of this journey to myself -- and it's been an emotional year on these drugs.
What would help the cancer survivor during this phase of their treatment is to remember a few things before you ask, "Why are you still on chemo? I thought they said there were no visible signs of disease?"
Learn about Adjuvant Chemotherapy and why it's used. Some cancers have very specific regimens, while others do not. If your friend is on these drugs, it will help if you understand why.
Remember that cancer is not "cured" nor does the survivor just return to their normal life. They are traumatized by the experience, and in some cases (like me), they feel safer on more drugs.
Acknowledge that their journey is not over. Remain supportive. Help out however you can. The important thing is not to ask "how can I help?" but to suggest specific things you are willing to do. "Can I drive you to one of your appointments?"
Don't keep asking, "How long do you have to be on these drugs?" The answer is usually in terms of years, not weeks or months. It's a long haul for the survivor, they don't need to be reminded every step of the way just how much farther they have to go.
*Learn more about post-treatment classifications
