According to the National Cancer Institute, as of January 2019, the United States had 16.9 million cancer survivors and estimates that number will increase to 22.2 million by the year 2030.1 Although I’m still technically in active treatment until I complete radiation therapy, I’m now considered NED (no evidence of disease) a.k.a. “cancer free,” a survivor. While it would seem that being a survivor is just one big party, I’ve found myself seeing from a perspective that people who haven’t gone through cancer may not consider. Today, I have a few thoughts on survivorship that I wanted to share – it’s a long one, but an important one so get comfy…
Survivor or Thriver?
In the true sense of the word, a survivor is someone who’s overcome hardship or who copes well with the challenges they’ve been given. For some of us who’ve lived or are living through cancer, surviving doesn’t quite describe what it’s like to take on a complex illness and somehow maintain a semi-normal life. That’s why many in the cancer community now prefer the term “thriver” because they choose to continue to not only survive, but thrive through and beyond a cancer diagnosis. It’s not about getting through it without complications, but rather just living as normally as possible during treatment. Being a thriver means rolling with the punches, accepting what you have to do to get through it all, and getting to live how you want despite your diagnosis.
Being a thriver takes on a whole new meaning, though, for someone with metastatic/stage IV cancer. As of now, there’s no true cure for Stage IV cancer and treatment continues until the cancer doesn’t respond anymore. However, many people live for years on palliative treatment since research and treatments continue to advance all the time (#StageIVNeedsMore). In the meantime, there is always normal life running parallel to someone’s diagnosis. The world doesn’t just stop turning. I bring this up only to remind you that everyone’s diagnosis is different – not everyone can be cured, and it seems unfair to put “surviving” on a pedestal when, honestly, what it takes to thrive after a cancer diagnosis is so much more honorable.
If you’re interested in donating to support Stage IV breast cancer reseach, click here.
Mental Health after Cancer
Despite much stigma around mental illness in the past, I think the narrative about mental health issues is gradually (thankfully) starting to change. Many of us experience some degree of mental health concerns throughout our lifetime, but there are a few specific things that someone with cancer may go through after diagnosis and especially in the years after someone may be considered NED.
Scanxiety is the term used by cancer thrivers to convey anxiety around pending imaging (mammogram, CT/PET scans, etc.) or about the results of them. Imaging is the first stop on the cancer diagnosis train and so repeating this process every six months to a year can bring up a lot of emotions, even if it’s expected the scan results will all be normal. It’s important to recognize these feelings are normal and expected (especially in those first 5 years after diagnosis when the likelihood of recurrence is highest), and this would be a good time to throw your toxic positivity out the window. Here are a few ways to be there for someone preparing for follow up scans:
“Everything will be fine…”
“You have nothing to worry about…”
“It’s just an MRI/CT/mammogram…”
“Stay positive – negative thoughts only lead to disease…”
“I know you’re worried about your tests/results, do you want to talk about it?”
“It’s ok to feel [insert emotion here] after all you’ve been through.”
“Do you want to go for a walk/coffee/other activity to take your mind off all of this for a bit?”
Post-Traumatic Stress Disorder, another anxiety condition, is widely publicized as something that combat veterans get after serving in war. Fun fact – anyone who has been through any kind of trauma can get PTSD. After being diagnosed with cancer, there are so many things that can trigger anxiety and panic attacks. A few of my triggers include hearing of someone young who died of cancer, upcoming medical appointments (particularly with new doctors or doctors that don’t know my recent medical history), and especially blood draws, but other events or news may trigger someone differently. Please be kind and allow space for others to feel their stress and anxiety.
Another thing I’d like to address is actually the first thing I experienced after surgery confirmed I was NED. Survivor’s guilt. I was surprised that I felt this since I was very confident in my doctors and myself that I would get through this (I guess when you’re doctor writes on your FMLA paperwork that your cancer is “curable” it leaves you mostly hopeful). But this “guilt” hit me hard and unexpectedly and so I’ve taken some time to sit with it and understand it.
Truthfully, I don’t actually feel guilty that I survived cancer. I know many other survivors and have met many amazing women this year who’ve overcome a breast cancer hurdle, and they never talk about feeling guilty to be alive either. So I came to the realization that what I’m feeling is actually empathy for those still in treatment and compassion for those who will always be in treatment or for whom treatment didn’t work. Being a survivor is a strange position to be in, but I’m hoping that my experience will only make me a better friend and clinician when I have the opportunity to support someone going through a similar experience.
Expectation of Transformation
The one last thing that’s been on my mind is this idea that because I’ve survived cancer, I must be a changed person. Cancer is eye-opening in many ways, that’s true, but it’s not like Cinderella putting on that glass slipper. I don’t suddenly have this new lease on life, and I don’t feel newly inspired to pick up the torch and run wildly toward some new life where every experience is profoundly meaningful and joyous. That’s great if someone else does have a big transformation, but for me (and likely many others) it’s just not the case. Instead, I feel a bit more reserved. I want to live a simple, mostly happy (sometimes messy) life focused on loving the people I surround myself with and learning as much as I can with whatever time I have left here on this Earth.
I don’t strive to be an inspiration and I hope everyone can recognize that a diagnosis isn’t a definition. I had cancer. I am not defined by that or limited to that. I share my experience because I hope it can help someone else who’s going through it. While I’ve learned a lot, I’m not going to dwell on the experience. Instead, I’ll take what I’ve learned and get back to my life, applying that new knowledge whenever I get the chance. I hope you’ll all hold me accountable to that.