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Living Life Under Cancer Surveillance

Updated: Jul 5, 2023

The Battle Nobody Talks About


A computerized tomography (CT) scanner.
A computerized tomography (CT) scanning machine. Commonly used for cancer surveillance to identify inflammation and changes in the body.

What is Cancer Surveillance?


Cancer surveillance is a term that might sound a bit intimidating at first. It's like a watchful eye, a sentinel in the night, a guardian of health. But what does it really mean?


In essence, cancer surveillance is a treatment plan that involves closely watching a patient's condition sometime after a cancer diagnosis, but not giving any treatment unless there are changes in test results or in body scans that show the presence or worsening of disease. Surveillance can happen before or after surgery, chemotherapy, or radiation.


Each person's cancer surveillance journey is unique. It can depend on factors such as the type of cancer, the stage at which it was diagnosed, the treatment received, and even the specific oncologist (a doctor who specializes in cancer) or hospital involved. Some people might need scans every few months, while others might only need a check-up and blood work once a year. Surveillance is often ongoing for up to five years after diagnosis, sometimes even longer.


Personally, I've seen my oncologist for blood work five times and for scans two times in the one year since finishing treatment.


Regardless of the specifics, the goal is the same: to monitor for any signs of cancer recurrence and to ensure the best possible health outcomes.



Finishing Treatment: Only Half the Battle.


When a cancer patient finishes treatment, it's a significant milestone, often marked with relief and celebration. This could be after surgery, chemotherapy, radiation therapy, immunotherapy or even a combination of them.


Cancer patient finishing his last day of chemotherapy treatment.
My partner and I celebrating my last day of chemo treatment, despite feeling like shi* after 20 days of treatment over three months.

But the impact of cancer doesn't magically disappear with the final round of chemotherapy or the last radiation session. The persistent thought that it may come back, the mental struggle of navigating life post-treatment, the constant "scanxiety" every time a check-up is due, these are all part of the reality of living life under cancer surveillance.


Living life post-treatment is a delicate balancing act. On one hand, there's the desire to maximize the time we have, to live life to the fullest. On the other hand, there's the ever-present shadow of cancer, the fear of recurrence. It's a struggle, a challenge, but it's also a testament to the resilience and strength of those who have faced cancer and continue to live their lives.


For me personally, when I had a down day during the early days after finishing treatment, I felt like I was wasting my opportunity to live life. But then I realized that down days are a part of life. My body needs to have a lazy day every once in a while because it gives me the energy to live life. It’s not easy though, because there’s the constant knowledge that I’m still in active cancer surveillance.


Scanxiety: Cancer Surveillance Scans and Anxiety.


After surgery, I had underwent chemotherapy treatment as a CT scan of my abdomen, pelvis, and chest showed enlarged lymph nodes all throughout my body. The cancer had spread to the lymph nodes causing them to grow or become inflamed. After treatment, a CT scan showed that they had resolved, shrinking back to their normal size as the cancer cells had been killed due to the treatment. Then began the next battle: cancer surveillance.


I remember my very first surveillance scan, just four months after getting the “green” light from the oncologist. My scanxiety was probably at an 8 out of 10. The most likely time for cancer to return is in the first couple years after finishing treatment, so yea, I was nervous.

Definition written out for Scanxiety

The CT scan reinforced my anxiety by showing a potentially new and enlarged lymph node near my liver. I can’t explain how hard it is to keep your mind from going into a black hole, but that’s what I attempted to do. We pursued an additional MRI to get a better picture of the lymph node, which should’ve taken weeks to schedule, but somehow, there was an opening for the very next day. Waiting for results can wreck havoc on your mental life, so this expedited MRI was truly amazing.


Based on the results of that MRI, the doctor decided to simply monitor it, offering the tiniest sigh of relief. I say "tiniest" because it obviously is great to not continue treatment, but until the next set of scans, you will always be wondering about that "lymph node by my liver..."


MRI scan, potentially of the liver.
1 of 1,386 MRI images of my body.

Four months later, during my next set of scans, which now included an MRI, the lymph node near my liver had completely resolved. It was likely enlarged due to a simple stomach bug, or maybe something I had eaten the day before, or because it was just doing what lymph nodes do on a daily basis, defend our bodies from the little things.


This is the reality of cancer surveillance. Because we are monitoring everything so closely, little things that show up on a scan or in blood work due to 'living life', like a stomach bug, make your scanxiety go haywire as you immediately think the worst. It's a unique struggle that cancer patients have to deal with every time they go for scans, or every time they feel sick, or anytime they have night sweats.

"Is it lymphoma? A secondary cancer from treatment? Or a recurrence? Why do I feel tired? How come I have a fever? Is this a symptom???"

Separating 'life' from 'cancer' is ongoing. But that is what it's like post-treatment. The mental war of living life under cancer surveillance is tough, it's omnipresent, and it takes a whole lot of courage to push through it. Many of these thoughts pass through my mind and sometimes I look into the 'night sweats' more than I should. But I have found ways to allow the thoughts to pass and to move on with living (I slept with a comforter the first summer night...).



Managing Scanxiety: Strategies and Tools.


Scanxiety never really goes away. It's a constant companion, a reminder of the toughest days during treatment and the vigilance needed to keep cancer at bay. During treatment, cancer is an all-consuming aspect of life. But the further out from treatment you get, cancer becomes a smaller piece of the whole.


When surveillance comes up on the calendar though, cancer has a way of becoming everything again. It's a cycle, a rhythm of life post-cancer. Scanxiety kicks in during the week or two before when it all becomes real again. But there are resources and ways to help manage and reduce scanxiety. I personally sought out a therapist who specializes in chronic illnesses who I met with during treatment and post treatment for about one year. It was one of the best decisions I made for my overall health, and I highly encourage others to do the same as soon as possible. It’s easy to wait until you think you need therapy, but it’s best to seek it out before you find yourself in a black hole. Start therapy now, decide whether you need it later.

Hiker in Glacier National Park.
Backcountry camping in Glacier National Park shortly after finishing treatment..

Since making the decision to put therapy on hold, I’ve found solace and strength in outdoor activities and building my business, Odd Balls. Pushing myself physically and mentally keeps me focused on the present. But still, there's scanxiety when the time comes for more cancer surveillance.


During those weeks, I try to remember why I need surveillance. "It's to stay on top of my health. It's to proactively get ahead of any potential recurrence. It's a good thing." I waited too long before seeing the doctor when I first noticed my odd ball, so now I try to think of surveillance as an opportunity to get out in front.


Managing scanxiety is not easy, and there's no perfect solution. But there are strategies that can help.


One of the most effective ways I've found is using mindfulness techniques like meditation and journaling. These practices help me stay present, focused, and grounded, even when the fear and uncertainty threaten to take over. I cannot recommend them enough. I don't implement these strategies everyday as I should, but I'm working on it.


Cancer Happened For Me, Not To Me.


I've had a case of the cancer and there's no going back.


Now, I choose to work hard on my own health and to not take my time for granted. I've stopped drinking alcohol, adopted a vegetarian diet (I still eat chips...), kept up on my cardio and strength training, and focused on keeping my mind clear. All of this takes more effort and time, but is worth it to me. To be clear, none of these are sure fire ways to prevent a recurrence. Cancer does not discriminate (I hadn’t seen a doctor in about a decade prior to my diagnosis). But I do know that if I'm to go through treatment again, I want to be as healthy as possible so that I can give myself the best odds.


The cards have been dealt. It's up to me to play my hand wisely. I didn't have a choice when it came to cancer, but I can choose my perspective. When I choose to see cancer as something that happened for me, rather than to me, is when I start to see all the opportunities. It's not a perfect solution, and it wont work for everyone, but it's the mental game that I'm choosing to live given my circumstances.


Surveillance: A Catalyst for Change.

In the end, cancer surveillance is not just about monitoring for signs of cancer. It's a constant reminder to live life to the fullest, despite the challenges. It's about finding joy in the everyday, even if it’s a down day, because that’s part of life. Pursuing passions and making the most of the time we have is a worthy effort, but not easily attainable.


Friends backpacking in front of a lake in Glacier National Park.
Backpacking Glacier National Park with good friends.

I don't know when my time will come, or if cancer will have it's big comeback, but I can choose how I perceive my own reality. I choose to see this as an opportunity. A chance to do something with my life, to give back to my community, and to enjoy my time while I can. And I absolutely do not execute all of this to perfection, because I'm still living life, which has it's own struggles separate from cancer. But I will try damn hard to make it happen. Remember the resilience, strength, grit, and desire for life that carried you through treatment and apply that to the present. It doesn’t make the scanxiety go away or change your predicament, but it does push you forward and get you through your next surveillance date on the calendar.


So, here's to living life under cancer surveillance. Here's to the challenges, the victories, the struggles, and the triumphs. Here's to the journey, and to all of us who are on it.


Remember: You are not alone.



Resources:

4 Comments


Morgan Parham
Morgan Parham
Jul 05, 2023

Thank you for sharing your words and perspective! The world needs to know your story so we can tackle the cancer journey together! ❤️

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Odd Ball Jon
Odd Ball Jon
Jul 05, 2023
Replying to

I really appreciate your kind words. Thank you!! Let's kick cancer in the ball*!!

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David Ersland
David Ersland
Jul 05, 2023

Well said! I’m almost 4 years out from treatment and still get anxious about regular check-ups with my hematologist. I don’t get CT or MRIs because I had a type of blood cancer, but the anxiety is still the same.


I couldn't agree more that cancer happened FOR me rather than TO me. I know it’s odd, but getting cancer is one of the best things that happened to me. It put life into perspective, challenged me to grow myself to be the best I could be, and cherish all the beauty in the world.

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Odd Ball Jon
Odd Ball Jon
Jul 05, 2023
Replying to

Thank you for sharing! It's so inspiring to hear that you are 4 years out!


And it's strange how something so terrible can bring such a positive change to our lives. It's not easy to always see it, but if you are open to change, the impact can be life changing for the better.


Thanks again for sharing!

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