Entering Long-Term Cancer Survivorship

You’re a cancer survivor, maybe even a two or three-time cancer survivor. That’s great! Congratulations! You’ve passed those first few years of excessive worrying, continuous scans and heavy monitoring, and oh, those pesky treatment side effects. You’ve faced fears of recurrence, intense scanxiety, and started to find your new normal. You had so many questions and concerns about cancer that led to increased anxiety, stress, and possibly depression. Lastly, you’ve started healing the physical and mental scars from the life-changing event that is cancer. 

Cancer treatment is one of the most stressful and traumatic times of your life, and the first five years after aren’t much different. In the moment, the years drag on for what seems like forever. Your life is consumed with so many new milestones to your new normal and healing journey. Looking back, they actually passed a lot quicker than you remember. 

During those fresh cancer survivorship years, some are heavily involved in cancer-related activities as part of their new normal. These include being active in health studies, research surveys, and other cancer community outreach projects. Others find that the new normal involves personal life changes such as a job switch, returning to school for a degree or certification, moving to a new town, or a changing financial situation.

You’re busy with all the new normals, consumed with it daily. All leading to one day - BOOM! You’re no longer in the early stages of life after cancer. You look back to see that you’ve walked all the way to the line of long-term survivorship. How did this happen? How could this be? Where did the time go?! Year after year of counting cancerversary dates like birthdays…heck you may have celebrated every single cancer and chemoversary. You’ve come this far! Amazing!

Entering long-term survivorship gives you an even deeper appreciation for life, especially the number of years you’ve lived as a cancer survivor. However, your celebration is still often interrupted by the long-term side effects of cancer and its treatments.

I am almost a 9-year cancer survivor. Wow. 9 years. My cancer survivor title comes from a rare placental cancer called choriocarcinoma from a complete twin molar pregnancy. My 9-year-old daughter is the surviving twin from that molar pregnancy. Recently, I received an email from a cancer research organization asking cancer survivors to fill out a survey. The catch - the survivors had to be within 5 years of their last treatment to qualify for submission. It suddenly hit me that I’m no longer in the early stages of cancer survivorship. What?! After years of doing these, I was a tad bummed that I could not put my feedback and experience to use for the study. I was thrilled though, to actually know that I was beyond that timeframe and had advanced to a new stage of survivorship!

Entering long-term survivorship gives the perks of being somewhat settled into your new normal, things that can only come with time. These perks allow you to lead a more relaxed life with continued maintenance of cancer side effects, knowing the do’s and don’ts of those side effects. This more comfortable management of your “new normal” allows additional free time for you to live life outside of the lingering effects of cancer.

Nevertheless, the long-term side effects may not disappear completely, and new ones may pop up over time. Acknowledging this reality takes you into a new shift of self-recognitions, and there is always a possibility of a new or secondary cancer creeping up because of the chemo treatment you received for past cancer.

When reflecting on my own cancer journey, there are many times now that I no longer had that continual reminder that I am a cancer survivor. I actually forget and feel like a ‘normal’ person most of the time. But then something comes up, say a simple illness, a pain or some side effect issues, and um, well, labs. 

During cancer, I received weekly chemo and was inpatient for 3-4 days every other week for a total of 6.5 months of active cancer treatment. My blood was always being drawn and sent off to the lab. I spent countless hours waiting for results in the oncology department, just to find out whether I could move forward with my treatment plans or if we had to take a step back. Once the chemo treatments were finished, I was still being sent to the lab for heavy monitoring. I went from weekly labs, to bimonthly, to monthly, to every three months, to every six months, then only annual labs for a few years. That shift was extremely hard, and for another story!

Those famous lab draws. Even after almost 9 years out of active cancer treatment, scanxiety is still present at my annual lab appointments. There is a lingering amount of PTSD from the initial traumatic experience of cancer. I can even remember the feeling of those first labs, which brings up PTSD all over again. It may not be as strong as before, but it is still there, and all it takes is a little bit of it to bring back those recognizable feelings. The good side? There are tools for you to be able to handle PTSD better. I looked at it as training for something like a dance routine. The more time and practice you put into it, the more you are able to control and manage your mental health during labs.

So what can we take away from all of this? Well, long-term survivorship has a fine balance between pros and cons. For some, there are more pros than cons. Here’s my list:

Pros

• Improved maintenance of long-term treatment side effects. 
• Diminishing short-term treatment side effects.
• Settling into your new normal following your cancer diagnosis and treatments.
• Had time to heal physically, mentally, emotionally, and sexually (especially for survivors of reproductive system cancers).
• Gained knowledge and experience leading to a new you, a new life (such as a career change).
• Giving others in the cancer community hope, even without realizing it.

Cons

• New side effects or health issues arising from cancer and/or treatment, and having to adjust your new normal.
• Continuation of cancer/cancer treatment-related health issues.
• Secondary cancers resulting from prior cancer treatments.
• Not qualifying to volunteer for some cancer research/surveys due to being too far out from your last treatment.
• Lingering PTSD
  
  

Embrace how far you've come. Celebrate how far you've come. You deserve to celebrate your survivorship and declare it to the world to give hope to others that are behind you in their cancer journey. Celebrate YOU! Celebrate LIFE!

Photo courtesy of author.