Counseling Today, Features

Life after cancer

By Laurie Meyers April 29, 2020

To the uninitiated, a favorable cancer prognosis may appear to follow a challenging yet relatively linear path ending on an upward trajectory: diagnosis, treatment, elimination, champagne.

After all, what’s not to celebrate? Treatment is over! You’re cancer-free! Everything is great! You may now return to your regularly scheduled programming.

You are ecstatic, right?

For most people completing cancer treatment, the answer is: It’s complicated. And bewildering, because almost no one talks about the messy reality of “after.”

These are some of the unspoken truths about life after cancer:

  • The end of treatment is a cause for celebration and a time of uncertainty and fear.
  • The end of daily, weekly or monthly medical visits can leave patients feeling as though their safety net has been removed.
  • The emotional support that patients receive from those around them may shrink — sometimes dramatically — once their cancer is “gone.”
  • Surgery, chemotherapy and radiation may be over, but treatment is not; patients still require regular scans and, in some cases, pharmaceutical maintenance regimens.
  • Pain, neuropathy, fatigue, mental fogginess, physical restrictions and other side effects often last long after treatment is completed.
  • After months or years of focusing on cancer, survivors can struggle with a sudden loss of structure and purpose.
  • Physically or metaphorically, cancer patients have lost pieces of themselves.
  • Scars, hair loss, skin changes, bloating, weight gain or loss, medical devices such as intravenous ports or ostomy bags, and other changes in appearance frequently have a negative effect on body image.
  • The physical and psychological effects of treatment can cause lasting intimacy issues, both physically and emotionally.
  • A professional clinical counselor can be the one person who never tires of hearing about the individual’s cancer experience and helps the individual make meaning of that experience and find their new “normal.”

Seeking solid ground

Cancer patients are often surprised by their reaction to the last day of treatment, says licensed professional clinical counselor Cheryl Fisher, a private practitioner in Annapolis, Maryland, whose specialties include counseling clients with cancer. Most cancer clinics have some kind of ceremony — a bell to ring or a certificate to present — so there is a feeling of celebration, she notes.

But then? Fisher says these patients often have a sudden realization: “Oh, crap. Now I’m on my own.”

The medical support group that has sustained those in treatment week after week, month after month, suddenly is no longer there, notes Fisher, a member of the American Counseling Association. Yes, the physicians and nurses are still available, but those reassuring regularly scheduled visits that provided a consistent sense of forward momentum are over, leaving patients unsure of what comes next and whether they’ll truly be OK.

During treatment, patients are essentially swept along, focused on navigating the tasks placed in front of them, Fisher explains. “What do I do next? What do I do next? OK, tell me what do I do next?” she says. “You’re just going through the motions almost on autopilot.”

And then, suddenly, the merry-go-round stops, and survivors are left standing still, yet psychologically awhirl with everything they’ve lived through. “Your body, your mind, your neurology is still trying to catch up with all that has happened,” Fisher says. “You’re still processing it.”

ACA member Mary Kathryn Rodrigue, a licensed professional counselor who is certified in psychosocial oncology with a focus on young adults, agrees. Many of the clients who come to her practice after completing cancer treatment are just beginning to process their grief, she explains, because they felt compelled to put everything else — financial worries, job concerns, questions about fertility, relationship concerns — on the back burner during treatment.

Rodrigue, founder and co-owner of The Wellness Studio, located in Baton Rouge and Covington, Louisiana, uses the Functional Assessment of Cancer Therapy-General, a scale that measures physical, social/family, emotional and functional well-being, to help determine her clients’ needs. In addition, she administers standard depression and anxiety assessments.

Many of her clients present with anxiety surrounding “what if” scenarios. Rodrigue describes exploring these fears as “peeling back layers of an onion.” Follow-up tests are a frequent source of anxiety. “I have a scan coming up. … What if the doctor doesn’t call right away? How will I cope?”

Rodrigue frequently uses journaling with her clients and says that “worry journals” can be very effective. “It’s allowing you to tangibly take that worry that feels like it’s on a ticker tape and put it somewhere else,” she says. Clients might also use their journals to play out the worst-case scenario, imagining that a scan shows evidence of cancer, taking stock of their support systems, and attempting to formulate a plan. Examining that fear and planning possible responses keeps clients from “back burnering” their fears and letting them build momentum, Rodrigue says.

She also teaches clients mindfulness and grounding techniques such as environmental awareness — noticing the temperature of a room, focusing on the feel of clothing against the skin, and identifying the textures and tastes of the food they are eating, for example.

Fisher, who is also the director of the online master’s program in clinical counseling for the California School of Professional Psychology at Alliant International University, says scan anxiety is a constant concern for many of her clients, some of whom face scans every three months. When the first scan comes back clear, Fisher says, clients begin “just testing the toe on the water, trying to gain some semblance of this new normal. What does it look like?” But then, as the next scan time approaches, their anxiety amps up again. Fisher helps clients develop tools to manage their fears without derailing the process of reengaging in life.

She recalls one client whose scans indicated a small recurrence of cancer on the lung. “There’s this little, teeny, tiny spot. It’s not growing fast. They’re actually not going to do surgery. They’re just going to watch it,” Fisher explains. And, so, the client had to make peace with the unknown.

Fisher asked the client what she was feeling.

“I’m afraid,” the client said.

“OK, great,” Fisher responded. “Acknowledge that you’re afraid. Call upon it, sit down, have a conversation with it [through journaling or self-talk]. What’s the fear about? What’s the greatest aspect of the fear? What is it telling you, teaching you? How would it ask you to live your life differently now, with the unknown? What would that look like?”

The client was anticipating the birth of her second grandchild and was afraid that she wouldn’t be around to experience it. So, Fisher asked the woman to think about how her plans might be altered by knowing there was no guarantee she would be in the child’s life. The client decided to make some preparations for the birth of the child. She had previously been putting off her plans, paralyzed by fear of the unknown. As it turned out, the woman’s follow-up scan showed no sign of any growths.

“What we do with fear,” Fisher says, “is tell fear, ‘OK, I know you’re going to co-journey with me around this. I know you’re going to be there, but you cannot lead it. You cannot be the leader of my life. What I’m going to do is … to pull you out periodically. We’re going to have a conversation. I’m going to allow myself to experience you, cry, be angry, journal, do some work around it. Then I’m going to tuck you back in and tell you [that] you have to walk beside me, not in front of me.’”

Fisher emphasizes that this intentional practice allows clients who have experienced cancer to decide what is essential — the nonnegotiable things they want to experience no matter what.

All that you can’t leave behind

As clients learn to negotiate their fears and reengage with life, they will inevitably need to reevaluate. Everything. But especially the people in their lives.

“Your whole world turned upside down,” Fisher asserts. Clients’ perspectives are altered — sometimes radically — by what they’ve been through. “Now you’re really evaluating people, places, things, and how they’re serving you in your life,” she explains. When assessing relationships, clients are seeking reassurance that the people around them are able to allow them to move forward while still understanding — and respecting — the radical life changes cancer has brought on.

Rodrigue was struck by a presentation she attended in 2019 on issues affecting young women with breast cancer that described three different categories of relationships and the need — particularly in times of significant change — to do an inventory of the people in one’s life and where they fit. The first category comprises the closest relationships — those built on unconditional love in which people willingly make sacrifices for each other. The speaker emphasized that it is essential not to have too many of these relationships because it is easy to spread oneself too thin. The second category consists of reciprocal relationships — people who do things with you and for you, Rodrigue says. And the third category of relationships includes people in your life by default — family members, friends you’ve known for a long time, individuals with whom you were brought together by a crisis or a project, etc.

Major life changes and shake-ups tend to call attention to those relationship lines, Rodrigue says, explaining that it is not uncommon for people who have recently gone through cancer treatment to feel anxious about their relationships. She encourages clients to ask themselves several questions: What is driving their anxiety? How are relationships not meeting their expectations? Is there a lack of reciprocity? A tendency to be unavailable or unsupportive? Perhaps a previously unnoticed pattern of negative and undermining comments and behavior? Is the pattern a new development caused by a change in friendship dynamics, or was the relationship never based on equal footing?

In many ways, cancer survivors have an even greater need for support once they’ve finished treatment. Not knowing whom to count on or being betrayed by someone who seemed like a trusted ally can have a significantly detrimental effect on clients’ emotional and physical health. Taking a relationship inventory that allows clients to recognize the need to “refile” or even release a relationship can reduce anxiety and help eliminate unnecessary conflict.

Both Rodrigue and Fisher say another significant challenge cancer survivors encounter in their relationships is everyone else’s need for them — the patient — to be “OK.” But they’re not. At least not all of the time.

This inability on the part of others to consider the person as anything less than “good as new” sometimes comes from a place of selfishness or ignorance, but it can also come from fear, Fisher says. Those close to the client have endured months or even years fearing the loss of their loved one, so they desperately want to believe the person will be fine, she explains.

And cancer survivors often want to ease that burden, to say they’re fine even when they’re not, Fisher continues. “Oftentimes, we still are in that protective role, where we’re like, ‘Yeah, yeah. I’m good. I’m fine,’ rather than saying, ‘You know what? I could still use a weekend away,’ or ‘I don’t know if I can take on my full life right now in one swoop.’ … So, now it’s like, OK, on your mark, get set, go. It’s too much. It’s overwhelming.”

This is where counselors need to step in and educate their clients. Fisher tells her clients that their A-game no longer looks the same; that there is no “back to normal” — inevitably, it is a new normal; and that finding secure footing on the path forward takes time. People will want to assume that the person who went through cancer treatment is fine, so it is up to that person to set boundaries, to let others know when they need time off or to say, “I can’t deal with your bull,” Fisher asserts.

Sometimes, helping clients manage others’ expectations requires bringing in the third party. Fisher had a client who was a cancer survivor and a widow. The woman’s daughter would come to town to visit and had a hard time hearing that her mother had bad days. During one of these visits, the client asked Fisher if she could bring her daughter to a counseling session so that they could work on expectations together.

“That was where, of course, the daughter was able to break down and say, ‘I’m scared. I can’t stand the idea of seeing Mom vulnerable. I have to see her as super mom,’” Fisher recounts. “Mom is crying, saying, ‘I would love to be that super mom, but that’s not my M.O. anymore. I learned that trying to be super mom actually was killing me. I need you to know honestly that some days are great, some days are not great. I need to have the ability to do what I need to do on those not-so-great days without worrying that it’s upsetting you.’”

The elephant in the room

Life after cancer treatment means reengaging not just in platonic relationships but in intimate ones as well — if and when the survivor is ready, Fisher says. Again, it’s complicated.

Survivors are scarred and often not comfortable in their bodies, Rodrigue explains. It’s hard to reclaim your body when part of it is missing, especially in cases with mastectomies, she continues. Survivors need a safe mental health setting in which they can express their rawness and grief over the loss.

Fisher notes that breast cancer survivors with hormone-positive cancer grapple with an additional complication — hormone-blocking pharmaceuticals such as tamoxifen or aromatase inhibitors. Tamoxifen usually forces women into early menopause and the physical aspects that come with it, such as hot flashes, dryness and discomfort.

Many survivors aren’t even ready to think about a sexual relationship at that point, but if they have a partner, the topic comes up sooner rather than later, Fisher says. For women who don’t have partners but are interested in a sexual relationship, the process of finding one may feel more complicated. Fisher quotes one client as an example: “The next time I’m going to be sexually intimate with somebody, I’m going to have to feel safe enough to tell my story.”

“It really requires trust to be able to expose the scars, talk about the scars, experience a relationship with somebody in the scars,” Fisher says.

Too often, survivors struggle alone with reestablishing their sexuality. Even clinicians are often hesitant to address sexuality after cancer, Fisher says. She asserts that counselors should be asking these clients about their body image and their identities as sensual and sexual persons.

“Talk to me about what you’re experiencing now. What are your fears? What would you like it to look like?” Questions like these will open the door and allow clients to talk about their sexuality, Fisher says.

Counselors should also make sure they are up to date, comfortable with and educated about the aftermath of cancer treatment and reengaging in sensual, sexual, and body image components, Fisher says. “Sexologists, sex therapists are excellent resources,” she suggests. “The interesting thing is, finding them is kind of challenging at times. [Find] out who’s in the area so you can refer clients. Then, hey, you know what? Normalizing [with clients]. This is really normal stuff.”

She also recommends that counselors consult with physical therapists who are knowledgeable about pelvic rehabilitation. “They educate you from A to Z in terms of what could possibly be interfering with both physical and sexual functioning.”

Again, it is about getting clients back into contact with their “new bodies” and embracing the changes — not just in terms of sexuality but in redefining their own beauty, Fisher says. She finds yoga and breathwork to be particularly effective ways for clients to reconnect with bodies that they may feel betrayed them.

Rodrigue has had many clients tell her that they no longer feel beautiful or even functional. It was such a common refrain that when it came time for her to open her practice, she made a specific request of the interior designer — a friend and former Project Runway winner. “Everything is made from repurposed materials, stuff people threw away,” she says. Rodrigue encourages her clients to see themselves in the materials — not broken but rather remade with a new purpose.

Fisher has a similar view of the healing process. “When is it over? I don’t think it’s ever over,” she says. “I think you just get to the other side of it, and it’s repositioned and informed your life. … Just because the treatment is over doesn’t mean the processing and healing are over.”

 

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Laurie Meyers is a senior writer for Counseling Today. She was diagnosed with breast cancer in February 2019 and finished active treatment this past January. Her discovery that there is no survival guide for life after cancer inspired this article. Contact her at lmeyers@counseling.org.

 

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Opinions expressed and statements made in articles appearing on CT Online should not be assumed to represent the opinions of the editors or policies of the American Counseling Association.

5 Comments

  1. Amanda Linder

    I don’t have first-hand experience as a cancer patient,, but my husband and I have lived through some of this as parents of a cancer survivor. It hits home for sure-the support wains and the worry increases without regular tabs on our daughter’s health.

    Reply
  2. Diane O'Brien

    As a “recovered” cancer patient, I just want to thank Laurie for this insightful and timely article. It has helped me to normalize much of what I am feeling and I will now seek out my own counseling to deal with all of it.

    Reply
  3. Gerard FitzGerald

    Very good article, it is amazing that we sometimes do not understand what a person might be experiencing with a potential life ending disease or illness.
    I do not have cancer but I do have neurofibromatosis type 1 which the etiology suggests that it starts on the number 8 chromosome, science has done extensive research on this, it manifests itself by allowing tumors to crow along the peripheral nerves, subcutaneously , I have thousands of tumors and they grow on every part of my body, sometimes the pain is intense especially on the soles of the feet (50 or so each foot) palms of my hands and even in the irises (also known as Lisch nodules, but it is part of my journey in life and something that has allowed me to learn empathy and compassion .
    If you are interested in this, a google search and check images
    Even though I have this, I do not and will not allow it to interfere with my life, as long as I am breathing and can get out of bed, I am moving forward

    I am a licensed clinician or LCPC and working on my doctorate, we can do this together

    Reply
  4. Jen

    I am a addictions counselor and I am a ten year survivor of BC. Finally someone is talking about my life. Yes I made I am good ! But there are so many after effects that no one tells you about even ten years later! I’ve lost time and energy my body image my skin hair etc. It’s a lot and it’s not always easy. Am I grateful to be alive , absolutely without a doubt, but the chronic pain and the little fear in the back of my mind of recurrence, My life is beautiful and I will continue to fight for it every day!!

    Reply
  5. vernaize Coleman

    Excellent Article. Thank you so much I am in remission from Stage 2 basal cell cancer. I was diagnosed 09/2019, immediately went into treatment to prevent any further spread. The article touches on the reality of life after cancer. I am suffering from the side effects of the radiation. Due to the current crisis I am unable to go to therapy for lympodema in the neck, one side, no taste, loss 35 pounds and cannot gain a pound, the treatments were in my neck, dry mouth every morning, excessive mucus or either no mucus. Yes I am thankful that I am in remission, however, cancer treatments are brutal and life changing, I thought I would bounce right back, forget it, I ended up in the hospital the day after my treatments for 10 days due to my lack of white blood cells count, and on bedrest for 2 weeks after. Still working. This article was refreshing.

    Reply

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