It’s safe to say everyone who has been diagnosed with cancer dreams of the day they discover they are in remission or have no evidence of the disease (NED). Celebrations ensue! Joyful social media posts are written! “Now you can go back to your regular life!” well-wishers exclaim. Except… life “after” cancer isn’t always so simple. While you and your loved ones may expect you to “move on” and return to being the person you were before, many cancer survivors realize that after everything they’ve gone through, they can’t just pick up where they left off.
During a time that we may often think of as celebratory, like receiving news of being in remission/NED, it may be surprising when feelings of anxiety, fear, depression, and anger still arise, Lauren Selfridge, an associate marriage and family therapist who supports people living with health challenges (and lives with multiple sclerosis herself), told The Mighty. But just because one aspect of the journey has changed doesn’t mean you aren’t still touched by the experience itself. Receiving a serious health diagnosis triggers a grief process that can include shock, numbness, fear, anger, sadness, and denial, and grieving things like your life before your diagnosis, changes in your physical appearance, and the emotions that go along with managing your huge life change.
“You don’t need to be living with active disease progression in order to still be feeling the effects of its impact on your life,” Selfridge said. “This can include the shifts in relationships with loved ones and at work, the physical aftermath of treatments, changes in how you see yourself and your life path, and the anxiety that goes along with not knowing when or if cancer will return.”
Of course, being in remission is a wonderful thing and certainly something to be celebrated. But that doesn’t mean we shouldn’t be open about the challenges you face once everyone assumes you’re “all better.” To shed light on this little-discussed aspect of cancer, we asked our cancer community to share some of the mental health challenges they experienced after entering remission. And keep scrolling to hear Selfridge’s advice for cancer survivors struggling with their mental health.
- “I had anxiety and depression before breast cancer diagnosis is 2014. Both are so much worse afterward. When I was diagnosed I didn’t have health insurance so money was and still is a constant stress. I fear I’ve become like a hypochondriac. I fear metastasis daily. I shame and guilt myself about what I am and am not doing to take care of myself. My family, friends and especially my kids keep me going on my very dark days.” — Amy S.
- “[I] experienced anxiety after I’d been treated for my original diagnosis. Now, my anxiety has increased after being treated for a recurrence. The pain from my aromatase inhibitor medication concerns me. There’s always that worry of a bone metastasis. The long stretches between follow-up appointments also makes things worse.” — Nicole D.
- “My doctors and nurses did such an incredible job prepping me for every step, but no one told me how hard it would be afterward. I knew exactly what was going to happen with the chemo, lasted longer than I expected but I knew what was going on. Same with surgery. Then I had all my post-op appointments, I was clear and they said, ‘Alrighty, we’ll see you in three months, go live life.’ After spending every week for almost a year at the hospital, with my same nurse, how, what, why, how could it possibly be that easy? For me, it hasn’t been this far. I can only take it one day at a time and some days are one hour at a time… some times that’s all we can do.” — Mandy N.
- “[I’m not] able to celebrate being cancer-free (after over five years of battling relapsed disease) because now I’m facing pressure to do additional toxic treatment that I’ve been steering clear of for the past six years.” — Kezia F.
- “I think ‘after’ cancer is actually much more challenging than when you’re in the thick of things. I’ve had cancer twice, and after I finished treatment for the first kind I struggled with the quiet and it fed into my depression and caused feelings of loneliness. You spend all of treatment surrounded by a care team and when treatment is over, you’re not around all those people anymore and you start to really think about what you just went through. My second go-around was with a leukemia and it resulted in a bone marrow transplant so I spent a lot of time in-patient and now my anxiety gets really bad when I have to meet with my care providers because I’m always scared I’m going to end up getting admitted again. My first admission was not planned, and therefore I’m always concerned it’ll happen again.” — Emily A.
- “Post-cancer has left my mind filled with equal parts relief and dread. For me, the hardest mental challenge of surviving is watching those who don’t. It has been heartbreaking (depressing) to watch friends and family die of cancer. Those deaths are a reminder of the internal ticking bomb (anxiety) of recurrence. Having talented mental health professionals in my corner has been a tremendous help. Building up mental resiliency is a crucial tool in surviving cancer.” — Laura G.
- “While I was thoroughly prepared for the mind-numbingly long list of potential side effects during treatment, no one prepared me for life on the other side of it. I had hoped that my life would return, for at least a few years, to a pre-cancerous existence. But there is regrettably something so traumatic that transpires when undergoing something as fear-inducing as chemotherapy that has left me, and many other ‘survivors’ with whom I have spoken, in some ways worse off than before treatment… Whatever the appropriate term, the unfortunate reality of having cancer is that it never truly leaves you. Even if one can rid the body of its nefarious presence, eliminating cancer from one’s mind is sadly not possible.” — Jeff N.
- “[One mental health challenge is] not being able to make plans in advance like a summer holiday in case it comes back by then. The elephant is always in the room.” — Gill A.
- “Once active treatment stopped, I had all this time on my hands to think and reflect. However, I also had none of those professionals around to facilitate processing all this emotion and the PTSD that I experienced. I was home alone trying to heal. I did seek out therapy through the cancer center and that was helpful to work through things. A big change after having cancer was that I’ve lost my innocence when it comes to my health. I no longer just get a sore armpit. I get a ‘sore armpit, maybe it’s a swollen lymph node caused by lymphoma from all that radiation’ or instead of having just a headache, I get ‘a weird headache that might be the start of a tumor caused by my cancer coming back.’ Thankfully those extra worries aren’t there daily anymore, they just pop up from time to time. It was much worse in the first year.” — Louise P.
- “I received the breast cancer diagnosis on my 39th birthday. Happy birthday to me, right? One year after treatment ended, I was diagnosed with Hashimoto’s thyroiditis, an autoimmune disease. It was a one-two punch to my gut. Between the two, my health declined so much that at the time, I could barely get out of bed and had to resign from my six-figure job. Instead of wallowing in self-pity, which was easy enough to do, I started practicing gratitude. Twice a day, I make a list of all of the things I’m grateful in life, both big and small. You see, there are scientific studies that prove how gratitude builds fortitude. It changed my life and is how I get through even the toughest of days.” — Holly Bertone
If you’re struggling to cope with feelings of anxiety, depression, stress or trauma due to your cancer experience, Selfridge recommends finding a mental health practitioner who can be with you for all the ups and downs and create a place for you to share your emotions unfiltered (Selfridge even created a free directory of mental health providers who specialize in chronic illness).
In addition, it’s important to build a loving relationship with ourselves.
“This means offering validation and understanding to our feelings that arise (for example, ‘Of course I’m feeling overwhelmed — this is a lot to handle,’ or ‘Of course I’m feeling alone — no one else is living in this body but me’), giving ourselves permission to be messy and imperfect, and giving ourselves room to step back from all the feelings and overwhelm sometimes,” Selfridge said. “That can mean watching TV, hanging out with friends, or just simply not thinking about (or discussing) cancer for a while.”
And if you’re reading this because you have a loved one who has recently gone through cancer, be sure to create space for your loved one to feel their full range of emotions, even if those feelings don’t make sense to you, Selfridge advised. Bring genuine curiosity and openness to your interactions, stay present and let them know that all aspects of their experience are welcome (if that’s something you can offer).
Good questions to ask your loved one include:
- “What’s it like for you these days?”
- “How is your heart doing?”
- “What’s the hardest/scariest/most confusing part?”
- “What are some questions you’re living with right now?”
- “What’s surprised you the most?”
- “What questions would you appreciate being asked?”
You’re not alone if you’re coping with mental health challenges in the aftermath of cancer. Check out these stories by members of the Mighty community who know what you’re going through:
- What 12 Months Post-Chemotherapy for Testicular Cancer Is Like
- 5 Things to Know About Returning to Work After Cancer Treatment
- Dealing With the Emotional Toll of Cancer