Jessica St. Clair and Dan O’Brien, who met in an improvisational comedy group, have been through a lot together — dating, marriage, work, parenthood and surviving cancer.

St. Clair received a diagnosis of stage 2b breast cancer in 2015. The writer and producer underwent a double mastectomy and six months of chemotherapy and radiation. And she marked her six-year anniversary of being cancer free in September 2021.

For many people, their last day of treatment is a happy one, but on the day of St. Clair’s final treatment, O’Brien received a diagnosis of colon cancer.

“So we kind of perfectly pivoted from Jessica’s experience as patient to being a caregiver and in my case going from caregiver to being a patient,” O’Brien said.

O’Brien, who is a playwright and essayist, had two colon resection surgeries, four months of chemotherapy, liver resection and two more months of chemotherapy. He has been cancer free since the end of 2016.

When O’Brien received his diagnosis, he and his wife were angry because instead of celebrating St. Clair’s milestone, they were facing a new round of cancer treatments.

In Sickness and in Health: When Both Partners Have Cancer

“It was a nightmare. And I think … it’s a cliche to say something feels surreal, but there was an unreal quality. … To have that happen sequentially, on the day of her final infusion, was shocking, absurd, numbing,” O’Brien recalled.

However, they both also felt incredibly lucky. Not only did they have great doctors and successful surgeries, but they had each other and everyone around them.

St. Clair met other women with cancer who were in the last part of their treatment. It was good for her to see that other people who had the same experience were able to live a normal life after treatment, she said.

“For me, even though it seemed unreal and impossible, knowing that somebody was living a good life (after treatment) was a real light in the dark,” she said.

For O’Brien, his beacon of light was his wife, who had already experienced everything he was going through. She was able to coach him through treatments and side effects and help him process his feelings, which made it easier on him, he said.

“I think I had an easier job in some ways than Jessica. … I tried to be there for her as a loving spouse, trying to help her through what she was going through. But she had just been through something incredibly similar, so I was constantly aware that she was six months further down the road and could tell me, ‘Oh, I felt the way that you’re feeling today on your fifth round of chemo. That’s similar to how I felt. Look at me today, I’m up and about, and I’m living a normal life.’ And that was tremendously helpful,” O’Brien recalled.

St. Clair said she didn’t realize how difficult it was to be a caregiver until she was one. There is an emotional toll not only on the patient but on the caregiver as well.

“Everybody is thinking about the patient — they’re fighting for their lives and they’re in a lot of physical pain. But for the caregiver, it’s an extreme emotional toll because (they) are usually the one doing the housework and the cooking and the cleaning and the caregiving of kids. And in addition, you are taking care of another adult person, which is really difficult. And then add to that you are terrified. But you know that if you share how terrified you are with your partner, then that will make them more afraid. … I had to really keep a lot of that to myself, and that can feel really exhausting,” St. Clair said.

O’Brien agreed — when he was the caregiver, he never wanted to burden his wife with how he was feeling. He found comfort in therapy and writing during that time. During her treatment he started writing a book of poems, “Our Cancers,” which he finished during his treatment.

“That was a way for me to try to make sense of the chaos of illness, out of the uncertainty of illness, (and) I’m sure there is a self-soothing or self-therapeutic aspect to it. But you know, I remember sharing those poems with Jessica during her treatment as a way to try to overcome what Jessica was talking about, where … you don’t want to burden each other with too much fear or anxiety. But at the same time, you need to try to keep communication open, you need to try to keep intimacy alive, emotional (and) physical intimacy too. … By revealing our fears, it was easier to also talk about what we were hoping the outcome would be, and it was a way to keep (our) bond strong,” O’Brien said.

And not only did they have each other to care for, but they also had their daughter, Bebe, who was not yet 2 years old when St. Clair received her diagnosis and was 3 when O’Brien received his. Since their daughter was so young, they decided to not go into the details with her about their disease.

“There were certainly times, especially with my treat­ment, where we had to explain that I had a boo-boo after surgery, but we did try to really keep it from her because it seemed like it was just too difficult for her to under­stand,” O’Brien explained. “You never know what kids are absorbing emotionally. And we were aware of that. But we didn’t want her to have to try to understand the full implications of what we were going through.”

He added that having a child “increased the stakes in a horrible way,” because they didn’t want to imagine such a young, vulnerable child losing not just one but possibly two parents. It was a “nightmarish scenario,” he said.

But Bebe became their motivation. They still had to take care of her, get her to school and arrange for playdates. O’Brien said it made him feel grounded, and he was striving to live for her.

St. Clair explained that their family adopted the motto “Heck yes, life” during her treatment and said that “any opportunity for joy that we’re presented with, we’re going to take it.” They lived that out and went to Disneyland the day before St. Clair's mastectomy and booked a trip to Ireland after O’Brien’s treatment.

“I feel like it’s really informed us as parents with Bebe because we really know the secret that life is short and that you should try to enjoy yourself no matter what,” she added.

She explained that they are better parents after having gone through this. They feel lucky that their daughter was so young, and their hearts go out to families with older children who are more aware of what their parents with cancer are going through, St. Clair said.

Both St. Clair and O’Brien tapped into their creative side as therapy during their journeys. O’Brien had his writing, and St. Clair started a podcast. She also wrote the last season of her television show, “Playing House,” which aired on the USA Network, with her best friend about the journey through breast cancer.

“It’s a great way to tap into the emotions that are underneath it all. I think when you’re doing something like art, or dance or even exercise, it’s like your conscious brain can take a break. And some­times I think those deep emotions really do need to be experienced,” St. Clair said.

O’Brien said they wanted to use their skills to make something meaningful out of their journeys. For them it was expressing themselves through the arts and writing, but for others it may look different.

“I think the question is: What can you do to help people connect to people, create connections, create support? Because that (comes) back to you. In our case, it happened to be writing a collection of poetry or Jessica writing an entire season of a TV show about her experi­ence or (her) new podcast. But for anybody else, it could be through teaching, it could be through activism,” O’Brien concluded.

For more news on cancer updates, research and education, don’t forget to 

Articles

Actress and comedian Jessica St. Clair and her husband, Dan O’Brien, share their roles of partner and parent, but also patient and cancer caregiver, as their roles were reversed in the blink of an eye.

A Couple’s Cancer Journey Reversed in the Blink of an Eye

Breast cancer survivors can experience body image issues after treatments and surgeries, which can affect them not only physically but emotionally as well.

Dr. Jennifer A. Ligibel, director of the Leonard P. Zakim Center for Integrative Therapies and Healthy Living and medical oncologist at Dana-Farber Cancer Institute in Boston, said in an interview with Heal® that the journey for patients with breast cancer often can encompass a change in physical appearance. “There are several different aspects of the treatment that we use for breast cancer that can have an impact on women's body image," she said. 

Women with breast cancer usually have surgery, Ligibel explained. This can be a less extensive surgery called a lumpectomy (the part of the breast that contains the tumor is removed) or a more extensive surgery called a mastectomy (the whole breast is removed. Other breast cancer treatments like chemotherapy and hormone blocking medications can also cause hair loss and menopausal symptoms. And all these surgeries can negatively impact a woman’s body image.


Sara Montiel of Miami experienced those body image struggles because of her treatment for breast cancer. She was 35 when she felt a lump on her breast and went to the doctor. Montiel was told not to worry, because she was young and had no family history of cancer. 

After a year, the lump remained. And Montiel discussed it with the doctor at her regular checkup, and although he still did not believe anything was wrong, she was referred for ultrasound. At that point, they realized something was wrong and sent her for a mammogram.

By this time, Montiel was 36. The doctors ordered a biopsy, and she received a diagnosis of breast cancer. “Things happen for a reason, when I think that ... if I had a mammogram one year before, now would be totally different,” she said.

Montiel decided to have a double mastectomy because she is a mom and felt she wanted to go through this only once. She was offered reconstruction surgery and decided to go that route as well. She went through chemotherapy and radiation with tissue expanders inside of her chest that would later
be replaced with implants. But soon after she received the expanders, she was feeling miserable. She went to the hospital and found out she had an infection. Her doctor tried saving the expander with antibiotics, and washing it internally, but none of it worked. "It was like a nightmare. I think it was even worse than the chemotherapy treatments," she recalled. 

Ultimately the expander was removed, leaving Montiel with one breast filled with an expander and one flat. She was able to manage with a special bra. But after radiation shrank the skin, the surgeon told her they would need to go in a different direction for symmetry. The recommendation was to remove the remaining expander, take tissue from her stomach and put it in place of her breasts. This would have been a major surgery, so Montiel said no. 

Her body responded well to chemo- therapy and radiation, and she did
not experience very many side effects. Ultimately, she decided to go flat and is very happy with her decision.

“I said (to myself) you became, through this journey ... a different person. The things that I was worried about in the beginning — in the end ... it was a totally different story. For me in the end, (it) was: I want to feel healthy, I want to feel happy, I want to enjoy life. Regardless of how I look. Of course, it was not that easy,” she said.


Montiel is not alone in having difficulty accepting changes to her body after surviving breast cancer. Ligibel said many women struggle psychologically with body issues after breast cancer treatment.

“There are definitely relationships between body image and things
like anxiety and depression,” Ligibel explained. “If people don’t feel good about themselves, that can be something that contributes to low mood. And conversely, if people are feeling more depression or anxiety, that can also impact their feelings about themselves. It can at times become a bit of a vicious cycle.”

For many women, continuing with life after surviving breast cancer can be a hard journey, and their struggles with body image can be a roadblock. “I think that for many women, the time of transitioning from active therapy into whatever the ‘new normal’ is, is a very difficult time. Many friends and family members may think that once treatment is done, life should go back to normal. But for many women who have gone through breast cancer treatment, it may take a much longer time to feel better, physically and psychologically,” Ligilbel added.

Montiel did not experience much anxiety and depression because during treatment, she was addressing her mental health with self-help classes and meditation, which helped her prepare for what came later. However, it did take her a while to accept her “new normal.”

When she chose to go flat, she was not “flat like my daughter,” she explained; there were mountains and valleys where her breasts were and it was hard to accept that this was her body. “When you go to the mirror and look at your body, sometimes it’s difficult to find that part is not that pretty, you don’t have breasts anymore, but you still don’t look like your daughter. And you don’t have (a) normal body image. So, it took me a while to love me again. The new me,” she said.

Montiel luckily had support of her loving husband and daughter through it all, but she was still shy in front of her husband in the beginning. She would try to feel pretty on the outside, wearing nice new clothes and pretty bralettes and pajamas to help her confidence. Over time she felt confident on her own.

“It’s not that simple. Of course, I was shy. I was afraid how he was going to look at me now. He usually loves that part of my body and now it was not there,” she added. “And then I think I started to feel more and more confident. And then one day I was just without clothes (on) in front of him feeling secure and feeling good and confident.”

Her husband was not the only one to support her through her journey. Her daughter was also there, and Montiel said it was a bit hard to explain to her what was happening, especially when she started losing her hair.

Ligibel added that women often lose their hair because of chemotherapy, which can be very hard on their self-image, and “it can be a visible reminder to women about their cancer treatment.”

Montiel agreed: “I think that throughout treatment, the hair is the most difficult part. And when you are a mom, and you have a daughter to explain (to) that is going to happen, (it) is difficult.”

She decided to make a memory for them. Her daughter was almost 4 when Montiel started losing hair, so they started “playing salon.” Her daughter cut Montiel’s hair a bunch of fun ways and different styles, and in the end her husband shaved it all off — leaving hearts and letters along the way. “We had so much fun that day.... And she still remembers (it), and I remember with a big smile on my face. So, I think that’s the trick for me,” she recalled.

Ligibel said a multidisciplinary care team is important for women going through body image struggles. She recommends that women get psychological support for mental health as Montiel did; exercise has been shown to help as well. “I think this is really a place where it may look a little bit different from one place to another, from one cancer center to another, but really making sure that patients aren’t just getting their treatment but are also getting care for other aspects of their mental and physical needs through treat- ment is so important,” she said.

Montiel is feeling confident but now is learning to manage the idea of body image with her daughter. Her daughter tells her, “I don’t want boobs, because I want to be like you,” but then sees other women who do have breasts. She is now struggling because she has an image of her mom and then an image of what a woman’s body “should be.”

“Now, I figured out I need to manage this for her because I feel confident. I think I need to talk and probably try to find a little bit more guidance to manage this with my daughter,” she added. She said cancer allowed her to find herself again, and realized it is what is on the inside that counts and offers that advice to other survivors who might be strug- gling as she once was.

“Having cancer is a blessing. Because if you have the opportunity to find yourself again, we have the opportunity to learn to love ourselves from the inside. And I think that when we have this love and when this love emerges again, then the outside will glow. Also, it doesn’t matter if we lose our hair, doesn’t matter if we lose one boob, two boobs, if they are incomplete. If we are glowing from the inside, that is the value,” Montiel concluded.

Listen to Montiel tell her story on the "Cancer Horizons" podcast.

Sara Montiel shares her experience and how time helped her find the confidence she needed for herself and her young daughter

Body Image After Breast Cancer: Regaining Confidence Takes Time

After a cancer diagnosis, survivors may want to actively join the conversation about their experience, but challenges could arise if they struggle to physically hear it. Hearing loss is common in those who were diagnosed as adolescents or young adults; however, the problem is not often discussed.

 (hearing loss after cancer treatment), why it happens and what can be done to help these survivors. The individuals featured in our story experience hearing loss due to cancer treatment and discuss how it affects their daily lives. Experts in the field also weigh in about treatment options as well as current gaps and why cancer survivors may experience this problem.

Another great story in this issue concerns the struggle with body image that many breast cancer survivors face after treatment and surgery. Sara Montiel tells us about her decision to undergo a double mastectomy and the long journey toward accepting how her body changed after cancer.

We also have some great insight on the past two decades of support groups for cancer survivors who often 

 after surviving their disease. Today, there are plenty of resources to help them — but what would it have been like 20 years ago? And what may happen 20 years from now?

Also, read about one couple’s journey through marriage, parenthood and a patient-caregiver role reversal that led them from feeling angry to adopting a “heck yes” attitude.

As always, we have recipes for some healthy and delicious dishes in this issue. Dip into the warm weather of spring with a few easy appetizers that are full of nutrients and give a healthier spin on your typical recipes — including a great twist on buffalo wings.

As always, we hope this issue is informative and inspiring to you and your families. Thank you for reading.

From ototoxicity to body image issues after cancer, here's a look at the most recent issue of Heal®.

A Look at Ototoxicity and Other Issues in Cancer Survivorship

Cancer survivors may experience psychological side effects, such as anxiety and depression. But they have many more resources to turn to for support today, compared with 20 years ago.

Bradley J. Zebrack, professor of social work at the University of Michigan School of Social Work in Ann Arbor, explained in an interview with Heal® that at the turn of the century, research into the psychological side effects of cancer was growing more extensive but resources for survivors were lacking.

“Twenty years ago, and I’d say that this is still somewhat true today, you have some cancer centers that are well resourced and are doing a fantastic job of providing support services and social workers and psychologists and have staff on site to help people deal with all the fallout of having had cancer,” he said. “And then you have other centers that are so under-resourced.”

cancer survival rates are continually increasing

, so are the rates of side effects for this population. Some of the most common side effects a survivor might experience are psychological, including depression and anxiety. Survivors today can address these issues with the help of psychologists, therapists and support groups, leading to 

This can benefit survivors’ mental and physical health, relationships with others, ability to work and more, Zebrack explained.

A 1998 study on quality of life in long-term cancer survivors, published in the 

, found that they experienced negative impacts just as survivors do today. But there were not as many resources for support then.

The advances made in providing support groups have brought greater recognition for cancer survivors, Zebrack said, adding that there is a more open conversation about the impact the disease has on their quality of life.

“I think what’s different today is a greater recognition of the psychological, the social (and the) spiritual impact of cancer. So, providers, I think, are more willing and able to talk about those topics within the clinical care setting — (compared with) 20 years ago,” he said.

Zebrack said the COVID-19 pandemic has allowed for even more innovation in this space because technological changes also have played a role.

Two decades ago, the internet was not as advanced as it is today — for instance, there were no Zoom support group meetings, which can be an important resource for cancer survivors now. He added that in the past, survivors who would benefit from a support group might not have the motivation to leave their house, sit in a room full of strangers and share their story. Today, however, the ability to join a support group using a computer in the comfort of their living room has opened a new world for cancer survivors.

“The ability to provide support to cancer survivors at the time they want it and how they want it is better today,” Zebrack said. “For teens and young adults affected by cancer, for example, their ability to find information and support when they need it — like 2 a.m., when they can’t sleep or are texting with their friends — is better, given advances in the use of computer technology and the internet to provide resources and support,” he said.

Although there have been many improvements in the past 20 years, there is still work to be done in the next 20, Zebrack added. He mentioned that a 2008 report from the Institute of Medicine (now the National Academy of Medicine) on psychosocial care for patients with cancer found that those who would benefit most from supportive care — including people with severe mental or physical health disorders, or those in underserved populations — were the least likely to receive and benefit from these advancements.

“Those were the people who are most likely to benefit from the availability of support but were the least likely to receive those services,” he added. “And I think that is still somewhat true today.”

In recent years, additional research has shown this gap as well, specifically in cancer survivors who are members of racial and ethnic minority groups, or sex or gender minority populations. For example, according to a 2021 study published in 

, researchers found that Hispanic and Latino cancer survivors experience a more significant and “often disproportionate” cancer-related burden compared with their non-Hispanic counterparts.

“Quality cancer care is defined as care that is safe, efficient, timely, patient centered, effective and equitable,” Zebrack explained. “Ongoing disparities in care means we still have a ways to go to achieve equity and thus quality for all.”

There has been extensive research over the past 20 years regarding the psychological side effects of cancer and their impact on survivors’ quality of life, and resources needed to overcome these challenges. There likely will be more studies as survival rates increase. It is not just research that has helped these advancements, Zebrack said, but also the survivors who tell their stories.

“I think what is also needed and helpful are the stories that survivors tell themselves; sometimes data is not necessarily the most motivating or stimulating thing to create change,” Zebrack concluded. “We also know that opportunities to tell one’s story about living with, through and beyond cancer are powerful mechanisms for physical and emotional recovery and for achieving quality of life after cancer.”

Increased resources and technological advances have allowed cancer survivors experiencing  psychological side effects to seek help that might not have been available to them 20 years ago.

Addressing Psychosocial Needs in Cancer Care Has Improved Over Past 20 Years, But More Work Still Needed

Matt Froestad was a sophomore in college when he received his first testicular cancer diagnosis. Two years later, as a senior, it happened again. 

He was always taught to perform self-exams and seek help if anything felt off, so that is what he did in 2009 when he found a lump on his right testicle. A urologist told him the only way to be certain it was cancer was to remove the testicle and do a biopsy, so he was scheduled the next morning for surgery. The stage 1a testicular cancer was caught early, and Froestad started a surveillance plan. 

“After that first diagnosis it was definitely a shock that I — a relatively healthy, active 20-year-old in college — could get cancer,” he recalled in an interview with Heal®. He was fortunate enough to not receive chemotherapy or radiation and was able to lead a healthy lifestyle afterward. 

“But always in the back of my mind was that I had cancer, and I kept an eye on the other testicle, probably a little closer than I did previously, just knowing that there was a chance that could happen again,” Froestad said. In his case, remaining vigilant was the right choice.

Dr. Shawn Dason, a urologic oncologist at The Ohio State University Comprehensive Cancer Center, Arthur G. James Cancer Hospital in Columbus, explained in an interview with 

® that recurrence in testicular cancer survivors is dependent on the staging of their first cancer and the risk factors. It’s important to talk with their oncologist to understand the risk. Depending on the individual, risk of recurrence could be low as 1% or as high as 50%. 

“I think really the first thing is to have that conversation with their oncologist … to understand what their individualized risk is because it could basically range from very, very limited to very, very likely. And if it is very, very likely, that could be important (to know) in making (a survivor) want to get any kind of symptom properly addressed if (they) were to have it,” he said. 

However, many survivors are still unaware they may be at risk for cancer recurrence, he added. Froestad said, “I didn’t know necessarily that it was possible, but it was.” He was a senior in college when he felt some pain and swelling over his left testicle during a self-exam and decided to call his urologist. The doctor gave Froestad a diagnosis of epididymitis (swelling around a tube at the back of the testicle), prescribed antibiotics and told him he would see him in a month. 

After a month the swelling went down but the pain remained, Froestad said. He was scheduled for an ultrasound, during which growth in a mass was identified. His urologist was reluctant at the time to schedule another surgery, so he advised Froestad to get a second opinion near his home in Virginia. 

The second doctor reached the same conclusion as earlier: The only way to be certain it was cancer was to remove the testicle. Froestad was scheduled for surgery two weeks later, and found out he again had testicular cancer. Prior to the surgery, he was able to “bank some sperm and get other things in order before going under the knife.”

Dason recommends that testicular cancer survivors stay educated on recurrence, keeping up with regular followups, screenings and self-exams, as well as remaining vigilant about new symptoms. Unfortunately, he said, many survivors do not follow up. 

“I definitely think there’s not enough awareness,” Dason said. “And you know the reason I say that is a lot of patients, I find, get lost to follow-up.” 

He explained that because this patient population is younger, common life activities include moving, getting a new job, continuing education or starting a new relationship. Consequently, fewer patients return for follow-ups and necessary testing after surviving testicular cancer. 

“I think it’s definitely something that, if we had more awareness that this is something that’s curable as long as we find it early enough and treat it appropriately, could make a big benefit in improving outcomes in these patients,” he added. 

Most commonly, if a testicular cancer survivor receives another cancer diagnosis, it would involve the abdomen, which is harder for individuals to detect, Dason explained. Such discoveries really come from imaging, which is why follow-ups are important, he said. However, some symptoms to watch for include abdominal pain, back pain, gastrointestinal issues, difficulty eating, nausea, vomiting, constipation and indigestion. “It’s so critical that these people who have a previous diagnosis of testicular cancer know about recurrence because we approach cancer of the testicle as curable until it’s not,” he said.

Froestad, now 32, welcomed his first child this past December. He agrees with Dason and knows that because of his self-exams, he was able to notice something was off and catch the recurrence. 

“I would probably just say continue to be proactive,” he said. “I will say, yes, having a cancer diagnosis is a blow … but it’s important to remain active … eating healthy — not to say I’m the healthiest eater either — but remain active to keep that balance and just continuing to have those regular appointments with your doctor and advocating for your health.” 

Dason reassures patients that testicular cancer typically has a good outcome, and although recurrence can be hard emotionally and physically, there may be a brighter side. 

“The outcome of most patients with testicular cancer is very good, even if you (received a diagnosis of ) a recurrence. It’s obviously very psychologically taxing and an emotional situation, but we usually have very good treatments that can get you over that,” he concluded. “The biggest thing is to have that perspective … there hopefully will be some light at the end of the tunnel, even (though) for some patients this is a second tunnel in the event of recurrence.”

Advocacy

During his college years, Matt Froestad received the diagnosis not once
but twice following self-exams.

Staying Aware With Self-Checks After Surviving Testicular Cancer

Krista Bridgmon was 2 years old when her grandfather noticed that the right side of her jaw was enlarged, a symptom marking the beginning of a two-year battle to overcome a cancer of the nerve cells that had spread throughout her body.

Bridgmon, now 30, underwent chemotherapy, radiation, surgery and a bone marrow transplant to treat high-risk neuroblastoma (a cancer that starts during very early formation of nerve cells, mostly occurring in infants and young children), but the cisplatin chemotherapy that helped save her life was ototoxic, or damaging to her hearing.

She struggled to hear high-frequency sounds such as “s,” “th” and “f.” Discerning voices in noisy environments was particularly difficult. She was fitted with hearing aids, but the large, uncomfortable devices were painful and amplified all sounds. Whispering students and shuffling footsteps were sometimes louder than the teacher’s voice. She avoided crowds because it was almost impossible to follow conversations in a group, and she became increasingly shy as time went on.

“I felt embarrassed and less confident,” says Bridgmon, of Arley, Alabama. “I would nod and say, ‘yes’ even when I didn’t know what people were saying.”

She learned to read lips to compensate, but this strategy did not always work. She still relies on hearing aids when helping her daughter with homework or meeting with her doctors.

 after cancer treatment. Ototoxic platinum-based chemotherapy is commonly used to treat certain childhood cancers, including tumors affecting the brain, nervous system, liver and bones.

However, these drugs can cause hearing loss, tinnitus (ringing in the ear) and balance problems. Researchers have found that the platinum accumulates in a part of the cochlea called the stria vascularis, which regulates the makeup of the fluid that bathes sensory hair cells in the ear. The platinum is eliminated from other organs within days or months after an infusion but can be found in the inner ear years after treatment.

, demonstrated that hearing loss is most common among patients younger than 5 when receiving cisplatin, with 60% in this age group experiencing hearing problems years after treatment. Investigators from Children’s Hospital Los Angeles in California analyzed data from more than 1,400 patients in the United States who received cisplatin sometime between birth and age 40.

Investigators found that higher daily and cycle doses of the drug — such as regimens used to treat liver cancer, neuroblastoma and central nervous system tumors — increased the risk of hearing loss. Another study suggests that cranial radiation therapy can also be ototoxic, with 14% of patients reporting hearing loss at least nine years after treatment, according to a study of pediatric patients from St. Jude Children’s Research Hospital in Memphis, Tennessee.

Although studies like these are drawing attention to hearing loss and tinnitus among cancer survivors, there are still significant gaps in understanding how to prevent these long-term side effects, or late effects, and how to help patients experiencing them, says Dr. Emily Tonorezos, director of the Office of Cancer Survivorship at the National Cancer Institute in Rockville, Maryland.

“Hearing loss among cancer survivors has been overlooked and understudied,” she says. “People do not consider it a serious medical problem, and as a result there are many cancer survivors who struggle to communicate, feel isolated and experience neurocognitive difficulties.”

Like Tonorezos, Johnnie Bass, a research audiologist at St. Jude Children’s Research Hospital, suspected that hearing loss was affecting cancer survivors more than most clinicians realized. Parents would share that their children were struggling in school, needed speech and language services and were having behavioral issues.

To explore whether hearing loss was linked to neuro-cognitive function, Bass studied more than 1,500 patients in the St. Jude Lifetime Cohort who had survived childhood cancer five years or longer. Hearing loss in this population was associated with deficits in attention, executive function, processing speed, intelligence and academic function.

“The hearing loss can begin within days or weeks after treatment, and the damage is permanent,” Bass explains. “And the hearing problems can worsen over the years as people age.”

Hearing loss affects not only cognitive function among childhood cancer survivors, but also social development. Tonorezos recently interviewed childhood and young adult cancers survivors who were exposed to cranial radiotherapy, platinum chemotherapy or both, and hearing loss was associated with isolation and feelings of exclusion. Many of the survivors had deprioritized or neglected their hearing issues because the problem was a reminder of their cancer history, and they did not want to spend time and energy on hearing loss testing or treatment, says Tonorezos.

As awareness increases about the prevalence of treatment-induced hearing loss, researchers hope providers will not only prioritize early screening to identify who may be at risk, but also refer patients to specialists who can provide treatment. Before starting potentially ototoxic therapies, clinicians should explain the potential immediate and long-term effects on the inner ear, says Kathleen Castro, a nurse consultant in the Office of the Associate Director of the Healthcare Delivery Research Program at the National Cancer Institute in Rockville, Maryland.

“If an ototoxic therapy is the best treatment for the cancer, in most cases the decision to move forward is clear,” she says.

But it is optimal for these patients to receive a baseline audiology test before starting treatment. Subsequent hearing tests can be compared with this baseline, says Castro.

“It is so easy to get focused on the moment when facing cancer, but it’s also critical to weigh what is at risk with long-term survival,” she says. If patients begin to show signs of hearing impairment, reducing the dose of chemotherapy may be a way to decrease risk of further damage, she adds.

To standardize audiology care for pediatric patients receiving ototoxic therapy, a group of international experts gathered to develop guidelines for clinicians. They determined that monitoring hearing and counseling from an audiologist should be considered before each ototoxic chemotherapy cycle. The specific monitoring recommendations for each patient are based on context, including the diagnosis, the drug, the dose and the child’s age.

The investigators found compelling data suggesting that, after treatment has been completed, “the screening needs to be tailored to a child’s age,” says Wendy Landier, one of the study authors. “Very young children should be screened more frequently than older children, but everyone who receives ototoxic therapy needs to be screened even as they move into adulthood,” explains Landier, deputy director of the Institute for Cancer Outcomes and Survivorship at the University of Alabama at Birmingham. Children under 6, for example, should be screened for hearing loss every year, and those from 6 to 12 should be screened every two years. For those 13 and older, screening is recommended every five years, according to the study.

If hearing loss is detected, clinicians can refer patients to an audiologist.

“These specialists are underutilized, and they are very knowledgeable about the resources available to address hearing loss,” Landier adds.

Raeanna Butcher, 33, of Montclair, New Jersey, benefited from seeing an audiologist but waited several years after cancer treatment because she was skeptical that hearing aids would help. She was diagnosed with pediatric osteosarcoma (a tumor that almost always occur in the bone, commonly near the growth plates of the knee, arms, legs and pelvis) during her sophomore year of college after her left knee started hurting during volleyball practices. She received two rounds of cisplatin before undergoing surgery to remove the cancer in her knee, and audiogram results during treatment revealed that she was suffering from high-frequency hearing loss.

But this problem was overshadowed by more acute consequences of treatment, including six months in a straight leg cast, mouth sores, numbness and tingling in her feet and complications from an intestinal bacterial infection.

During the two years after treatment, these issues resolved but Butcher noticed the hearing loss was persistent. She would frequently ask people to repeat things and felt self-conscious in loud social settings when it was hard to hear.

“I knew I was fortunate to have survived and wanted to put cancer behind me, but the hearing loss was always with me,” she says.

Butcher finally decided to see an audiologist, who explained that hearing aid technology had improved significantly over the years. He gave her a device programmed to help her hear high-frequency sounds, and for the first time in years she could easily follow conversations at large business events and social gatherings, including her own wedding.

Health insurance coverage for hearing aids for children and adolescents varies by state, and only a few states require insurance companies to cover hearing aids for adults, says Landier.

“Cost is a big problem,” says Bass, who found that only 23% of the cancer survivors with severe hearing loss in her study were using a hearing aid or cochlear implant.

Butcher paid $5,000 for her hearing aids; Bridgmon cannot afford new ones because Medicaid stopped covering this expense once she turned 21.

Researchers are starting to explore the possibility of preventing ototoxicity by using drugs such as sodium thiosulfate (STS), an antioxidant that binds to harmful molecules produced in cells that have taken up cisplatin. Scientists are working to understand why STS is otoprotective; they suspect the drug prevents free radicals from damaging the hair cells in the inner ear. It is also possible that STS binds to platinum, which could prevent residual cisplatin from killing cells in the ear.

, children with localized liver cancer received STS six hours after each infusion of cisplatin. They were half as likely to experience permanent hearing loss as children who did not receive STS, and the drug did not decrease the effectiveness of the chemotherapy.

For now, STS is not widely used in cancer institutions, in part because more research is needed to determine whether the drug impacts the effectiveness of chemotherapy, says Dr. Stefanie Thomas, director of adolescent and young adult oncology at Cleveland Clinic Children’s in Ohio.

“For now, clinicians are sometimes using STS in children diagnosed with localized cancer, but not yet in metastatic disease,” she explains.

In the future, providers may also be able to identify genetic risk factors for ototoxicity. Childhood cancer survivors from the St. Jude Lifetime Cohort who underwent cranial radiation therapy were more likely to have hearing loss and tinnitus if they had a specific gene variation in certain chromosomes, according to a recent study.

 how cisplatin affects hearing and tinnitus in survivors of adult-onset cancer. Eager to study this patient population, Robert Frisina, director of the Global Center for Hearing & Speech Research at the University of South Florida, joined a multi-institutional team that is following more than 2,000 testicular cancer survivors who received platinum-based therapy. They found that 20% had hearing loss classified as severe to profound and 40% had tinnitus.

These initial findings were based on audiogram testing in which participants pressed a button if they heard a specific tone. The team now plans to expand the testing to evaluate speech processing amid background noise.

“I think our findings may surprise some oncologists,” says Frisina. “They may not realize that the hearing loss is so severe.”

He hopes that his work will highlight the consequences of ototoxic treatment, and ultimately help providers to be more attentive to cancer survivors who need audiological support and hearing aids.

Although awareness of this issue is increasing, screening and access to audiologists are not widespread. In the meantime, cancer survivors like Butcher encourage patients to be proactive in addressing hearing loss and tinnitus.

“Don’t continue to suffer,” she says. “I tried to ignore the problem because I didn’t want the effects of cancer to be part of my life, but it’s wise to educate yourself, talk to an audiologist and see what is available.”

Feature

Significant challenges include improving detection and response to inner ear side effects among cancer survivors following the use of certain drugs and therapies.

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