My Cancer Treatment Is Over, Now What?
You’ve finished treatment for your cancer and your oncologist has declared that you have no evidence of the disease. Now what? Stay tuned because in this video I’ll be talking about what to expect next, from the follow-up appointments to treatment recovery. If you’re new here I want to welcome you to my channel Life as a Cancer Survivor. My name is Jelena, and in May of 2016 I was diagnosed with stage 3 rectal cancer. For my treatment, I went through 28 days of radiation and oral chemotherapy, I had a Lower Anterior resection or LAR surgery, which is where they remove your colon/rectum and I had an ileostomy created during that surgery, I went through eight rounds of the IV chemotherapy FOLFOX, and had my ileostomy reversed. So let’s get on with what happens after that treatment is over with.
My last round of IV chemotherapy was on March 28, 2017, and I was disconnected from the pump on March 30th, and on that day I was officially done with chemo. My treatment with my oncologist was complete so he basically said, “Bye, see you in three months!” When you’ve gotten used to going to the cancer center every two weeks for blood draws, pre-chemo appointments, chemotherapy, pump detachments, it’s a little weird knowing that you don’t have to go back for three months. Yes, I still had my ileostomy reversal surgery in two months but I didn’t have any more oncology appointments. No more visits to the cancer center. It’s a little nerve-wracking not being under constant surveillance and not actively working on killing cancer in your body. Now it’s time to attempt to heal for good.
The National Comprehensive Cancer Network has guidelines published for guidance on 
what a recommended follow-up schedule is for colorectal cancer patients that were diagnosed from stage one through stage four. Here’s the table that I’ll walk you through. There’s one column for patients that were diagnosed Stage one then another for Stage two, three, and four patients. For stage one, if you aren’t having any symptoms then the only recommended follow-up treatment is a colonoscopy after one year. If that one comes out clean, another one in three years, and if that one is clean another one in five years.
The follow-up schedule for patients that are diagnosed Stage 2-4 is much more comprehensive. First, we’ll start out with the appointment schedule with your oncologist. The first two years post-treatment is an appointment with your oncologist every three to six months and having your blood drawn every three to six months to get your CEA checked. CEA stands for carcinoembryonic antigen and it’s a protein in your body that in many people rises when cancer is present. It’s the least invasive and safest way to frequently check patients for whether or not the cancer has returned. After those first two years then the CEA checks and appointments get spread out every six months for the next three years. Since I was diagnosed at a young age my oncologist preferred to see me every three months for that first year and then he only moved it to every four months for years 2, 3, and 4. This past August was my most recent appointment with my oncologist and since my CEA has been consistently low and my CT scans have shown nothing, this was the first time that he felt comfortable spreading out my appointments so that they would be every six months.
Then for patients that are diagnosed at Stage 2 or 3, the follow-up appointment schedule for CT scans is every 6 to 12 months for 5 years. I had my first CT scan the day after I finished chemotherapy because I was hospitalized for an intestinal blockage, so that was kind of unintended, then I had another one 6 months after that and both of those they came back showing no cancer and my CEA agreed with that, so my oncologist then moved my CT scan schedule to once every year. For Stage 4 patients it’s recommended that you get a CT scan every 3-6 months for the first two years and then every 6-12 months for the next three years.
The final part of the follow-up schedule is a colonoscopy and it’s the same whether you 
were diagnosed at Stage 2 all the way through 4. If you didn’t have a colonoscopy at diagnosis, then it’s recommended that you get one 3-6 months after your treatment ends. For those that did get a colonoscopy before treatment, you wait a year for that first one. For me, I had mine one year after my surgery which was six months after my treatment ended. If nothing is found during the colonoscopy then you get to wait three years before you have to go in for your next one. If an advanced adenoma is found, which is basically a pre-cancerous polyp, then you only get to wait one year before the next colonoscopy. Of course, if the cancer returns then you stop this and you get back into treatment but this is what your schedule is going to look like for the next five years. Five years is the magic number because that’s when most cancer recurrences happen, so if you make it past that five-year mark without having any cancer detected then you’re done with your follow-up schedule. You just go in for annual physicals and you need to still follow what a non-cancer patient would follow as far as colonoscopy schedules go.
So you’ve got this follow-up schedule that sounds pretty intense but compared to being in the midst of cancer treatment it seems like nothing. You have to shift from actively going to appointments to kill the cancer in your body and having doctors and treatments rule your life to supposedly being in charge of your life again and going back to normal. I say supposedly because cancer treatment has most likely made some permanent changes to your body and that old normal can never be reached again. For me, I reached that finish line 
of treatment with scars from surgery, part of my colon and rectum missing, over a dozen lymph nodes gone, thinning hair, no menstrual cycle, neuropathy in my feet that caused constant tingling, and after the ileostomy reversal surgery, I was left with frequent bowel movements that required multiple medications to control. Three years after treatment has ended I’m still struggling with a white blood cell count that’s below normal and lymphocytes that are right at the bottom of the normal range which is great to have in the midst of a global pandemic. When I started treatment I naively thought that after treatment was done I would just magically be back to normal. Well, you don’t magically and instantly heal after having gone through multiple rounds of chemotherapy. There was no way that I felt like my pre-cancer self.
The mental game of trying to not wonder whether or not the cancer is growing back in between appointments can be tough. It’s not something that I thought about a whole lot, but it hit me front and center anytime I had to go into the cancer center to get my blood drawn and/or for scans. There’s actually a word for it in the cancer community and it’s called scanxiety. After attempting to move on with life you’re thrust back into the cancer center getting poked, prodded, and scanned. Your mind goes back to when you were first diagnosed, that uncertainty of how much cancer has ravaged through your body and wondering if it’s doing it again. After a few good scans and CEA test results you’d think that the scanxiety would let up a little. For me it did a little, but each test is different. Some tests don’t bother me at all now and other times just talking about it like right now has created a ball in my stomach. There isn’t just one magical thing that makes it easier either, because like I mentioned sometimes I feel the scanxiety and other times I don’t. You just have to come up with your own coping mechanisms of what helps to calm your fears a little bit. Fresh air, exercise, meditation, journaling, medication, alcohol, and marijuana are the most popular ways to cope and it’s usually not just one but a combination that works the best.
Another battle that you have to deal with in between your follow-up tests is your mind constantly questioning whether or not any new thing that’s happening in your body is a result of the cancer returning. It doesn’t help that a lot of the side effects from cancer treatment, like changes in your bowel habits and fatigue, are signs that colorectal cancer is returning. Your bowels do a lot of changing and adjusting after treatment so with each change you wonder whether it is a result of the chemotherapy or your ileostomy reversal surgery or if it’s the cancer returning.
These things are exactly why you shouldn’t assume that things will just go back to normal and your mental health will be perfectly fine. You’ve been through a traumatic event and it takes time to heal from trauma. It doesn’t mean that you’re weak at all. Your body has betrayed you so feelings of anger, sadness, and resentment are totally normal. If you’re one of the lucky ones that survived a diagnosis and treatment, happiness and gratefulness are totally normal, but survivor’s guilt also is if you’ve made friends along the way and they haven’t been as fortunate as you.
So what can you expect post-cancer treatment? Well, the follow-up schedule is one concrete thing that you can count on. Beyond that, the physical and mental side effects can ebb and flow for years. Try to do your best to make your health a priority so that you can make it through life post-treatment. My next live stream will be on Thursday, October 15th at 7 pm Mountain Time. So if one of those things that’s helping you out is watching my videos to help you feel less alone through your cancer diagnosis make sure that you’ve clicked the subscribe button and hit the bell so that you’ll receive the notifications when I’m going live and when my future videos are posted. Go on and click the like button down there too if you enjoyed this video. Thanks for watching.
*This video was originally published on October 9, 2020