“Actually, it seems strange, but I am not really so worried about me, I just don’t know how to tell my sons.” says Jane, a 52-year-old woman who was recently diagnosed with lymphoma. “If they were younger, maybe I could just hide it from them, but my boys are expecting me to be there at soccer games and teacher conferences, and drive them to friends’ houses. They have busy lives, they should not have to worry about me, and I definitely don’t want to be a burden on them.” For patients who are parents, figuring out how to share their cancer diagnosis with their children can be a real challenge.
If the children are babies or toddlers, things are straight forward from a psychological perspective, given their care does not require explanations about cancer or treatment. They need primary caregivers who will be attentive, warm, caring, cuddling, and mindful of their need for nutrition, proper sleep, and play time. Susan would often reassure herself during hospital stays for her myeloma treatment that her 1-year-old daughter Eliza was safe, and well cared for, with her mother-in-law. “Of course I want to be there, but I know Eliza is in good hands, and we will have time together next week. Reading her stories on FaceTime is the highlight of my day, and helps me feel connected to her.”
Children under the age of 10 are usually observant, curious, and caring. They respond well to straight forward answers to questions. Jennifer was in the middle of chemo for breast cancer, and her son Tom was 6. Tom would ask his mom about her bald head, but also gently pat her scalp from the backseat of the car. One infusion was on the same day as an event at Tom’s school, and Jennifer missed it. Instead of making up a work or traffic excuse, Jennifer told Tom she was getting medicine to “keep cancer under control.” Tom had already been told that cancer meant part of the body was growing too fast, so for him cancer being under control meant his mom was growing “at just the right speed,” which was a reassuring thought for him. For Jennifer being able to talk a bit about cancer, at Tom’s level of understanding, was a relief. “Trying to hide the side effects of treatment would have been exhausting, and Tom obviously saw the change in my hair.” Certainly there was grief because she missed the event, but Jennifer knew she and Tom would have other activities to share, and they specifically set aside time to catch up about the school event (and other school activities important to Tom) over a board game before bed.
Preadolescent children, ones in middle school, often want to be helpful as this is an “industrious stage” of development. When they are given a task, one that is matched for their ability, they tap into a sense of agency that is helpful in developing a healthy self-esteem. Jim was limited from doing physical activity after his surgery for colon cancer, which was disappointing because he had always been the one to build the sets for his 12-year-old daughter Judy’s school plays. While Jim was not able to do any of the construction himself, he was able to find a handy neighbor who was appreciative of the chance to build the set and make a little extra money. Judy and her school friends enjoyed working with the neighbor, and Jim was able to assist with the designs. Jim was especially proud to see Judy acknowledged in the play’s program as one of the set designers for the production, and when she took a bow on stage, she pointed to her dad in the audience. “Even though cancer slowed me down for now, it did not stop me from appreciating Judy and encouraging her to carry on with the play.”
Teens are tricky (no news flash there), and their reaction to cancer will vary depending on the teen’s personality, as well as by the day and maybe even the hour of the day. Fortunately, the same principles apply to manage teens as with children of other ages; provide a caring environment, explain things on their level (answer questions clearly as possible but not too detailed), and let them help as they are willing and able. Let them hang out with friends, even if the timing is not ideal (the day you get home from the hospital). They are likely to circle back home, and be attentive to a parent with cancer, when they are ready. Jane, the woman with 2 high school age sons, took this advice and gave herself permission to tell the boys her diagnosis and treatment plan. She had information available from a trusted group (Lymphoma and Leukemia Society) to share if they wanted to read more, and offered to let them meet her oncologist if they wanted. “I am doing everything I can to manage cancer, and be healthy, which is reasonable for them to know and see.” With specific instruction, the boys did a bit more picking up at home, cooked a couple dinners, and asked for rides to games from friends. “I know that when I take care of family I don’t think of them as a burden, so why should I consider myself one? Shoot, they probably feel good about contributing!” said Jane. While not all kids are going to be able to help in a way you may hope for, asking for specific help, small tasks on certain days, is reasonable.
There are many programs for kids whose parents are going through cancer. Ask at your cancer center about specific support for families including programs like CLIMB and Camp Kesem. Ask the guidance counselor at your child’s school about support too. For kids who are struggling with depression or anxiety, speak to their pediatrician about getting treatment.
Cancer Changed Your Appearance – Don’t Let People’s Reactions Keep You Indoors
As anyone who goes through cancer knows, the significant physical changes that come with treatment – whether it be hair loss, dramatic weight changes (down or up), surgical scars, or amputations – can cause people to stop and give you The Look. The Look is not just eye contact, or a quick scan head to toe, but a facial expression that shows surprise at the change in appearance or concern for your health – or, worst of all, pity.
Why do we need to talk about The Look people with cancer get while they are out in public? Mostly because The Look comes with a psychological toll that can be exhausting, and in some cases, can keep patients from going out in public during treatment. Many people don’t want to share their medical stories with the world, but being bald, losing your eyebrows, having visible scars, amputations or weight changes puts your medical story (in part) on display for the world to see. If you have to be reminded of cancer and the changes in your body with each Look, then seeing people becomes a trigger for cancer worries, and another painful reminder of how much your body and life have changed with cancer treatment.
So should you stay home to avoid The Looks? Absolutely not! Social isolation is problematic on many levels. Staying home usually means sitting on the couch, which only worsening fatigue during cancer treatment. Passive entertainment with TV or boring video games only dampens your thinking skills which worsens chemo brain. Talking with people, navigating social situations, is actually good exercise for your brain. Finally, because we are wired as social beings, being alone at home often worsens your mood. Here are tips on dealing with The Look while out in public:
- Be YOU! If you like a cool head, go bald, if you love long hair, wear a wig, if you enjoy colorful scarfs, buy yourself a couple soft ones, and if you are a sports fan, treat yourself to your favorite team’s authentic flat bill. Find what suits you. You can’t change how people look, but you can change some things about your look.
- Remind yourself the Look is about them, not you. People react to what they see based on their personal histories. Your scar may remind them about their own medical problem; your bald head might trigger memories about an uncle who smoked and raised goats (really, you just never know). Remember the classic advice for back to school anxiety? No need to feel self-conscious since most people are more concerned about their looks than yours.
- Let your style protect you. Wearing a clever t-shirt (“stupid cancer”, “my surgeon flipped my lid”, “yeah they are fake, my real ones tried to kill me”) or a flashy pair of shoes (beaded driving slippers or cowboy boots) seems to diminish the seriousness of cancer Looks. Carry something that makes you feel strong (a Wonder Woman bag, sturdy walking stick, faith symbol) so if you are reminded of your cancer, you are also reminded of how strong you are to be out in public!
- Remember that the way you look during cancer treatment will change. Weight goes up and down again, hair grows back (sometimes curlier or whiter), and prosthetics and wheelchairs make getting around in public possible. Your appearance changed because you were battling cancer. Your scars showed how hard you worked and are reminders of your efforts to stay well.
If going out in public was a major challenge even before cancer, talk to your oncology team about a referral to a mental health specialist to explore whether you may have social anxiety disorder (SAD). For more information on SAD visit adaa.org.
The Financial Pressure of Cancer Takes an Emotional Toll
Receiving a cancer diagnosis, and going through treatment, is emotionally difficult. Not only are you worried about whether the treatment will work (and how the side effects will impact you), you also have to deal with the high financial cost of cancer care, even when treatment is covered by insurance. Health care in the United States is expensive, and to make matters worse, being out of work for surgery, chemo, and radiation reduces income, causing more stress. Below are examples of comments from patients that demonstrate how emotionally difficult dealing with cancer and money can be.
I lay awake at night with swirling thoughts about all the bills that need to be paid, wondering how I might ever possibly pay them all. (Insomnia from money anxiety)
I have to go to work – I’m a single parent so I can’t afford to not work – but I am so tired I can barely keep my eyes open. (Cancer fatigue from money anxiety)
My immune therapy cost thousands of dollars a month. I feel so guilty for getting this medicine when other people don’t even have insurance. I wonder if my life is worth all this. (Depression from money guilt)
Cancer centers cause a lot of stress by charging for parking. I already have car and gas payments, but then parking too! I come here so often, it really adds up. Plus my son needs the car for work. I hate having to choose between my cancer treatment and his work. (Relationship stress from money needed for transportation)
Dealing with the emotional toll of cancer-related financial stress is a tremendous challenge. Ideally the cost of care would be less, everyone would have comprehensive insurance, and there would be nonprofits to provide transportation and cover copays. Until that time, the goal is to manage the financial stress of cancer in the way you might manage other major life stress: Accept the situation, check out resources, prioritize, and plan.
- Accept that you have a medical problem to treat, and you are going to take care of yourself the best you can, which means a financial investment. You are worth spending money on. Remind yourself that if you don’t take care of your health, you won’t be able to work (or enjoy life) at all.
- Check to make sure that your medical care is based on scientific evidence and that you are not wasting money on treatment that has not been proven to be helpful. Don’t waste money on supplements, infusions, or interventions that have not been supported by good quality science. Cancer centers with NCI or NCCN designations, or affiliation with a university, or reports on patient outcomes for treating your kind of cancer are likely to practice evidence-based medicine.
- Check out financial support options with the social worker at your cancer center and with pharmaceutical companies and organizations that focus on your specific kind of cancer. Consider clinical trials where treatment may be covered by research grants.
- Prioritize your spending, which starts with a written budget. Figure out what is a need versus a want, then reduce the wants as possible.
- Check prices for medications at different pharmacies, or free medicines from the pharmaceutical company. Goodrx.com is a helpful website.
- Plan for part-time work when you are medically ready, especially if you have been out for a while. Returning to work is like returning to running or playing a sport if you have been out for a while – you need time to get back into shape.
- Plan time for daydreaming. Cancer is a major life interruption. This may be a good time to think about what work would be most meaningful to you in the future.
Financial pressures are truly very difficult. But putting a budget on paper, being thoughtful about what is really needed, collaborating with family, friends and the cancer support system can help you get through treatment and keep the emotional toll of cancer and money as low as possible.
How to Handle Worry During ‘Watchful Waiting’
If you’ve been diagnosed with cancer, it’s likely that at some point in the process, your oncologist will recommend a period of “watchful waiting.” Depending on your diagnosis and time in active treatment (chemo, radiation or surgery), watchful waiting can be psychologically challenging.
You may worry that cancer will grow and spread while you wait; you may feel anxiety that they are not “doing anything” to fight cancer while you’re waiting; or you may feel stuck, unable to get back into your regular life until you know the results of the scans or tests that will happen at the end of watchful waiting (yes, the oncologist should give you a timeline for how long watchful waiting lasts). Hearing about other people’s experiences can help you form a coping strategy that works for you; here are a few stories that may give you some useful insights.
Beth was diagnosed with a stage I breast cancer in her left breast, which was treated with surgery and radiation. During her breast cancer work up, a mammogram revealed a potentially concerning spot on the right breast; to her surprise, instead of suggesting immediate active treatment of the right breast, her oncologist recommended watchful waiting for 3 months and a repeat mammogram. Beth voiced her concern to her oncologist, “in 3 months that spot could be cancer and start spreading all over the breast!” Beth’s oncologist explained that since the spot had been stable on previous mammograms, it was very unlikely to be an active cancer site and reassured her that there were several things she could do to fight cancer over the next three months.
The cancer fighting plan during watchful waiting for Beth included an anti-inflammatory diet and a safe movement program. She replaced red meat and sodas with beans, veggies, and bubbly water and joined a dance group for exercise three days a week. Losing weight and getting active not only improved Beth’s body image, but also diminished her worry about cancer growing or spreading, “I am doing everything I can to stay healthy, and that feels good!”
Steve was diagnosed with prostate cancer last year, treated with surgery and hormone therapy. When his PSA (prostate specific antigen) went up 2 points, his oncologist did not recommend immediate radiation therapy as Steve imagined, but rather watchful waiting. Steve was not just worried, he was scared that if he waited on radiation the next PSA would be even higher. “So now I just sit at home and watch Netflix until the next PSA?! My whole life feels like it is on hold till the next PSA is checked!” This type of thinking is common for people with cancer: they feel that their life needs to be on hold while they get treated, or until they know exactly what the next treatment plan will be. Unfortunately, this mind set of waiting till “cancer is over” means people miss out on a lot of what makes life worthwhile.
For instance, over the next month Steve’s family was going to the beach, his grandson was playing in a baseball tournament, and his coworker had nominated him to go to a special conference. To manage his fear about the next PSA, Steve had to actively work on practicing helpful thinking, for instance, “my oncologist is an expert, he wants to beat cancer as badly as I do,” “I do have a plan, the PSA will be followed up on,” “the whole reason I have gone through treatment is so that I can participate in cool family and work events,” and “I have gotten through follow up labs before, I can do it again now.” Steve not only practiced saying these helpful thoughts but also wrote them down in a journal each day. The act of writing down the thoughts is key to helping the brain hold on to them, and allowing the brain to access them quickly when cancer reminders come up in everyday life, as they so often do (commercials on TV, ads on the internet, bills in the mail).
Karen was three days from finishing chemo and radiation therapy for a brain tumor when she realized that her worry about cancer was getting worse. Treatment had been difficult: Five weeks of daily trips into the cancer center, a mask that held her head down while the beam of radiation targeted her tumor, and nausea that kept her from enjoying food for four days after chemo. “I know I should be glad it is almost over, but I am going to miss the people at radiation, they have been so encouraging, and then after chemo is done, what is my job, who am I? Am I the brain tumor patient, or am I supposed to be the person I was before cancer?” Karen had been in nursing school when she was diagnosed with cancer, and was now having to think about next steps in life once the active part of cancer treatment was done.
For Karen, managing the worry of watchful waiting till the next brain MRI required attention to how she saw herself, specifically not as a “cancer patient” but as a “survivor,” and also a daughter, friend, girlfriend, student and lover of gardening and Marvel Movies. Cancer can be an all-consuming process, and if you don’t pay attention to thinking about yourself as a complex, multifaceted person, then cancer worry can take over. For Karen a gradual return to nursing school was key. Trying to take all her classes at one time was too taxing on her energy and concentration, so a part time return meant that she could keep working towards her goal of being a nurse, but also have time for self-care (exercise, nutrition, stress management) that would keep her energy up as a cancer survivor.
The watchful waiting period often comes with some worry, but with attention to thinking patterns, and self-care, watchful waiting could be a time that you really focus on meaningful life activities outside of being a cancer patient.
5 Signs You Need More Support During Cancer Treatment
Sometimes it can be hard to recognize that we need help, especially when it comes to our mental health. Many of the cancer patients I counsel were surprised, or even confused, when their oncologist or nurse referred them to my practice for mental health support. It’s not uncommon for them say things to me like “Do they think I am crazy? But I was just having a bad day last time I was in clinic!”, “I have cancer, of course I am worried, isn’t everyone with cancer worried?”, or “This is how I have always managed my stress, why would I need help now?”
So, how can you tell that you need more support during your cancer treatment? If you answer yes to one or more of the signs below, then strongly consider making an appointment with a therapist.
- If you do not feel like your regular self, at all, for days on end. Or if you yell “like a crazy person” but are usually calm and thoughtful, then you may benefit from having an evaluation for irritability.
- If you can’t manage a smile, even for your favorite people or beloved pet dog or cat, then you may benefit from having an evaluation for depression. Many people are sad, and tired, during cancer treatment, but the small, simple pleasures in life should still bring some sense of joy. A favorite song on the radio, a blossoming tree, colorful tulips, and little kid art projects are all simple joys in life – if you can’t sense any of that joy, then you may need more support during cancer treatment.
- If you can’t think about one future activity you are looking forward to, not even a fun movie, event, or visit to the mountains because you are always thinking about cancer, then consider getting an evaluation for anxiety. Cancer treatment can be all consuming, to the point of making you think there is nothing else in life except managing cancer. If you are so hyper-focused on medical care (symptoms, appointments, medications, results) that you can’t divert your attention from cancer for even 30 minutes at a time to think about life outside of cancer, then you may need treatment for an anxiety disorder.
- If it takes you 3 hours to go through your work email, when typically you can respond to work email in 20 minutes, or you normally have the kids’ backpacks organized and packed before breakfast, but you find yourself without the energy to even ask if they have a backpack, you may benefit from an evaluation of fatigue. Mental fatigue may come from psychological cancer distress as well as medications and medical problems, like anemia, that come with cancer treatment.
- If you don’t talk to single person about your cancer experience, then you may really need more support. Talking about stressful life experiences helps us all cope by diffusing the tension about the experience, problem solving about challenges, and gaining information that can be psychologically empowering (and lifesaving if related to medical issues). Denial, anger, or shame may stop people from talking about cancer, and these are exhausting and painful emotions. Yes, some people are more private and shy, but think hard about why you have not shared your cancer experience with a single person. Ask yourself if being silent really feels comfortable or does it worsen your mood and worry? Of course, when you do open up, be sure to choose the person wisely (a trusted, caring family member or friend, or a trained therapist) so that sharing your cancer experience feels helpful.
The Emotional Impact of Testing Positive for a BRCA Gene Mutation
When Ann’s genetic test came back positive for a BRCA gene mutation (indicating that she is at higher risk of developing breast or ovarian cancer), she was more anxious than she had expected to be – and her anxiety became even worse after her first meeting with a surgical breast oncologist. “It felt like all he wanted to cut off my breasts right away! Do I have to get a surgery this minute? Does my daughter have to have a breast surgery too? What about my son, is he at risk for breast cancer? Wow, having this genetic information makes me really wonder what to do!”
Getting tested for a BRCA gene mutation can be a psychologically difficult process. Because genetic testing is medically very complicated, it’s important to discuss the results with a trained genetic counselor who can help you avoid the anxiety that invariably comes with complicated medical information. Once you have the benefit of learning more from the genetic counselor, the next step is to find a specialist (doctor or nurse) who takes care of people who have a BRCA gene mutation. A specialty clinic can help you work through the medical choices to minimize your cancer risk, such as increasing the frequency of scans or blood work to detect cancer, or meeting with a surgeon to talk about how an operation may reduce cancer risk. For Ann, the meeting with the surgeon came before she really knew how the BRCA mutation increased her breast cancer risk and what the surgery would do to reduce her risk. But once she met with a genetic counselor and connected with a specialty high risk clinic, she better understood the percentages and felt much more comfortable making a decision about surgery that felt right for her. She also learned that her kids would benefit from appointments with genetic counselors and a specialty clinic too, so they could get help making a decision that was best for them.
It is normal to worry and wonder about your cancer risk when you learn that you have a BRCA gene mutation. For some people, being positive for the BRCA mutation not only generates worry, but also guilt. For Ann, the guilt came from thinking her son and daughter would get breast cancer because of her: “I have really burdened them with this terrible disease!” It took some time talking about her relationship with her children and paying careful attention to all the good qualities they had because of her (great smiles, tendency to be kind to others, musically gifted) before Ann was able to move past this terrible feeling of guilt and think in a more realistic, helpful way. “I can’t possibly blame myself for genes I got at birth! I certainly wish I did not have the BRCA gene mutation, but I know now that I would never choose to put my kids through this, and it is not my fault if they have it too. What I will do is help them minimize their cancer risk in whatever way I can!” Ann and her kids all decided to adopt an anti-inflammatory diet and join a hiking club in order to keep their weight down and stay physically fit, habits that not only minimize cancer risk but also help manage daily stress.
For some people, finding out they are positive for a BRCA mutation can generate so much negative emotion (like anxiety) that it is hard to make a decision about treatment. Speaking up about the anxiety with your primary care doctor, or a genetic counselor, will not only mean you get the support and information you need to make a treatment decision, but also possibly get care for your emotional distress. Treating emotional distress, like anxiety, gives you the sense that even though the situation is difficult, it is something that can be managed.
The Cancer Is Gone, But the Fear Remains
I had my annual cancer checkup last week. I didn’t even mention it to my husband until the night before. I brushed away his concerned look and his instruction to “call/text as soon as you know.” I cheerily went off to my mammogram/nurse practitioner appointments.
Even though I could barely admit it to myself, I was faking. Cancer is fairly far in my rearview mirror these days. I am seven and a half years post diagnosis, six years post treatment. But the fear is still there.
There is really nothing I can do about it, that nagging knowledge that mortality is REAL. So much in our culture pretends that we don’t get old, that we don’t get sick, that we aren’t anxious, that we’re not afraid. And yet, while the entertainment and advertising that envelopes us also denies this underside of life, it also encourages anxiety and fear.
Buy this product and you’ll never get old! Watch/read/experience this movie/book/vacation/whatever and you’ll never be sick, fat, poor or whatever!
Well, if you’ve ever had a doctor say, “You’ve got cancer,” you know that there’s really no escaping fear.
What I’ve found is that, paradoxically, accepting that fear also allows me to cope. I know that my husband prefers to pretend that cancer is over, done with, not an issue anymore. I know that, for me, it never will be over. And that has to be OK.
While I pretend that I’m not in the least worried about my cancer check-ups, I am. I’m not paralyzed with fear, just a little nervous – just a little cold pinprick of fear.
In the waiting room, in my hospital gown waiting to have my breasts squished, I talk to another breast cancer survivor who’s also years out. We pretend we’re not too nervous; we swap surgery/chemo war stories. We both comment that we love that our medical center lets us know results immediately. A radiologist reads your images as soon as you go back into the waiting room. You get an answer within five or ten minutes.
We both got the “all clear.” Dressed again, we waved to each other in the hallway as we headed confidently back into our lives. We’re weren’t afraid in that moment. But the fear was there—just lurking, in the background—until next year.