Surviving cancer can impact one’s health in many ways, but the cosmetic changes people face after cancer treatment can be difficult to grapple with. Some doctors don’t address these changes once disease is in remission,
or patients struggle with feelings of shame or vanity for worrying about their looks after months or years of worrying about living through treatment.

®, we hear from patients about their experiences with 

and the changes they’ve seen during regrowth, as well as the possible options patients and survivors have to preserve hair through chemotherapy.

A new space to be explored is the addition of an oncodermatologist, or a dermatologist specializing in treating patients with cancer. Maintaining hair texture and thickness begins with the scalp, which dermatologists are uniquely qualified to advise patients on.

The psychological effects of cancer altering one’s physical appearance may also be tied to 

 especially so in survivors of head-and-neck cancers. These survivors have clear cosmetic changes to their faces, but body image distress includes the impact cancer has on talking, eating and making facial expressions as well. We speak to a biobehavioral specialist and a head and neck surgeon about the advances made in addressing lasting body image distress in survivors.

In our survivor spotlight, we also see how the effects of breast cancer surgery helped celebrity host Samantha Harris make a change in the opposite direction, where life after treatment reoriented her motivation to exercise from achieving aesthetic outcomes to cultivating a healthier body and mind.

However survivorship may have affected your appearance or your relationship with it, we hope this issue provides you with a new perspective on embracing your post-cancer body.

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

Articles

Facing Cancer's External Side Effects

Survivors of bladder cancer face myriad issues, with treatment for bladder cancer being among the most expensive. Many patients face body image distress and shame adjusting to life with a urostomy (a procedure that redirects urine into an external bag as opposed to the bladder), changes to their sex life and a more invasive screening procedure that heightens scan anxiety.

For patients recently diagnosed with bladder cancer or going through active treatment, there are plenty of options to help them manage their disease or finances. But the resources survivors and caregivers would benefit from are largely psychological and involve social support, which doctors and advocacy networks are not always equipped to provide.

The Bladder Cancer Advocacy Network (BCAN) is changing that. Their recently launched call center gives bladder cancer survivors, their caregivers or those who have lost a loved one to bladder cancer the opportunity to call and be connected to a trained social worker who can either counsel the individual then and there or connect them with local resources.

BCAN has always catered to the needs of patients with bladder cancer and has tried to help survivors and their support systems as well, but they now have greater resources to address the latter group.

Stephanie Chisolm, director of education and advocacy at BCAN, described the benefits of including members of a patient’s support system as well as survivors.

“Most (patients with) bladder cancer tend to be on the older side,” Chisolm explained. “It may well be that some of those caregivers are adult children, who may or may not live nearby, which can be a big concern. I think this is another pivot point that can help support somebody whose parents might be living in Florida, but they live in Chicago. They can find out about the resources that can help their parent in Florida or find out the things that can help them as caregivers for the family... (Being a caregiver) does present its own challenges, in the sense of having to take time off from work to get a parent to treatment or to help with the regular maintenance that that parent needs. Because they’re not well, those are things that are very significant. And I think having this social work network can help patients and their loved ones that are helping them find the services that they need. They’re out there, but not if you don’t know what they are.”

BCAN also plans to use the data collected from the call center to inform future events that will cater more directly to the needs of callers. “Why did people call? If we’re seeing that a lot of patients are calling because they’re in distress, (that can be addressed.)” said Chisolm.

The call center is currently active and operates on Eastern Time, but individuals in other time zones who may call at other hours can leave a message and receive a follow-up call at any time. The number is 

Bladder cancer survivors face a bevy of challenges post-treatment, but an immediately available service strives to ease the burden. 

Answering the Call for Bladder Cancer Support

Recipes provided by the Dana-Farber Cancer Institute in Boston.

1 (4 to 4 1⁄2 pound) watermelon, preferably seedless

3 large ripe green or orange heirloom tomatoes, seeded and cut into 1-inch cubes

1 medium sweet onion, such as Vidalia, sliced

Cut off and discard the watermelon rind. Cut the watermelon into 1-inch cubes, removing any seeds as needed.

Transfer to serving bowl. Cover and refrigerate until chilled, at least 1 hour and up to 12 hours.

Add the tomatoes, onion and mint to the watermelon and toss gently. Add the feta and toss again. Serve immediately.

2 cups dandelion greens, washed, wilted and chopped 

Add together all ingredients in a large bowl. Toss well.

Place all ingredients in a serving bowl and stir to thoroughly combine.

Spring brings a plethora of refreshing veggies into season, and these salads make the most of their natural flavors and health benefits.

Spring into Salads for Cancer Survivors

Many cancer survivors display outward signs of their disease history; people lose hair, gain scars and ostomy bags, or even experience the full or partial loss of a body part. Some survivors embrace the physical changes in their lives wholeheartedly, with tattoos or photo shoots commemorating their new normal. 

However, coping with external changes can be a unique challenge for head and neck cancer survivors, whose facial changes include not only disfigurement but challenges with eating, talking and socializing in general.

Head and neck cancer refers to a group of diagnoses where cancer forms in the face, mouth (including the lips, tongue and jawbone), throat, voice box and salivary glands: highly sensitive and critical areas. Survivors often face challenges speaking, chewing, swallowing and smiling, as well as changes to the skin and control over facial muscles, making this a diagnosis nearly impossible to disguise.

Changes to a person’s face and their ability to eat and speak will significantly affect their ability to socialize, which poses a clear risk to mental health as well as the ability to return to previous activities. Stacey Maurer, an assistant professor and clinical psychologist in behavioral medicine in the Department of Psychiatry and Behavioral Sciences at the Medical University of South Carolina in Charleston, has been working with head and neck cancer survivors on the psychological impacts of their treatment.

“The head and neck are parts of the body that you can’t hide. So if you’ve had a lot of changes to them, it’s immediately obvious to the people around you; it changes people’s relationships, how they communicate with people, even day-to-day social interactions. All of that can change really quickly after head and neck cancer treatment, leading to more distress after the treatments.”

Head and neck cancer makes up nearly 4% of all cancers in the United States, according to the National Cancer Institute, and one-fourth of survivors develop clinically significant body image distress. Body image distress has been well studied in breast cancer survivors, but effective treatments for that population have not translated to head and neck cancer survivors because of the vastly different circumstances the two groups face.

Dr. Evan Graboyes, a head and neck cancer surgeon at the Medical University of South Carolina and director of Survivorship and Cancer Outcomes Research at the MUSC Hollings Cancer Center, has examined the effectiveness of applying cognitive behavioral therapy techniques (a specific type of therapy intended to change a patient’s thought patterns and behaviors) to patients affected by body image distress specific to head and neck cancer survivors.

“If we can help patients adapt their thoughts and improve their coping skills, but can’t actually help them look better or swallow better, is that going to be enough?” Graboyes asked in an interview with 

®. “Our thought is yes. It would seem crazy, in fact, that you could somehow remove half of someone’s tongue and their jawbone and replace it with a transplant from some other part of their body, and then just expect them to be fine in their new life without helping them learn new skills to adapt to that.”

Graboyes and Maurer collaborated on a brief telecognitive behavioral therapy method of counseling survivors. In their pilot study, BRIGHT, they saw success
in treating the unique concerns of this patient population, and are currently working on a larger-scale study that will hopefully expand post-treatment therapy options for head and neck cancer survivors.

How do survivors of head and neck cancer cope with drastic changes to one of the most visibly identifiable body parts — the head?

The Invisible Side Effect of Visible Cancer Survivorship

HPV is the most common sexually transmitted infection. According to the Centers for Disease Control and Prevention, 2 in 5 people will be infected between the ages of 15 and 59. 

Although many infected people will be either asymptomatic or only develop skin symptoms, HPV causes 37,300 cancers per year — despite the fact a vaccine to prevent HPV has been readily available for years.

Almost all cervical cancer is caused by HPV; genital cancers and cancer in the back of the throat and tonsils may also be caused by some strains of the virus. There is no way of knowing whether any one case of HPV will quietly go away on its own or linger and develop into a cancer. However, two specific strains of the virus (type 16 and type 18) have the greatest risk of developing into cervical cancer, and the vaccine can prevent infection with these two strains.

The best time to get vaccinated against HPV is at 11 or 12 years, as children in this age range display the greatest immune response to the vaccine. 

Vaccination at this age, before many children become sexually active, is also beneficial. Individuals are still recommended to get the HPV vaccine through the age of 26 if they have not been vaccinated earlier. However, cancer survivors up to the 26-year-old cutoff are sometimes reluctant to receive the HPV vaccination, despite its benefit of preventing cervical cancer. 

15 Years Later, What Have We Learned About the HPV Vaccine?

Brooke Cherven, an assistant professor of pediatric oncology at Emory University School of Medicine in Atlanta, has been examining the safety and efficacy of the HPV vaccine in cancer survivors, but also has been asking patients who decline what their reasons are for doing so. 

“We looked at all reasons that participants had (given) or that families had given and realized that about 70% of the reasons were related to vaccine-related concerns,” she said.

Vaccine-related concerns include safety concerns, vaccine hesitancy, external influences, health beliefs and decisional processes, vaccine-related information deficits and disinterest.

Of note, there was a higher rate of vaccine-related refusal in younger survivors whose parents were making their medical decisions (76%) than in older patients who were likely deciding on their own (60%).

Cherven suggests that health care providers could boost HPV-vaccination rates in the childhood cancer survivor population by giving patients and caregivers evidence-based encouragement tailored to their specific situation as survivors, as opposed to passing on information for the general population.


“The HPV vaccine is recommended [for] all cancer survivors to prevent future cancer,” Cherven said. However, she explained survivors who had been treated with “sustained immunosuppression are at the greatest increased risk for HPV persistence and complications.”

“Genital HPV has been described as a significant late complication in a cohort of [patients who received] allogenic stem cell transplant, with one-third of long-term survivors displaying HPV-related disease. The patients at particular risk were those with associated chronic graft-versus-host disease requiring prolonged systemic immunosuppressive therapy.”

All these risk factors for HPV-related disease are specific to childhood cancer survivors, but many survivors or caregivers may be unaware of this unique risk. If the information gap persists, survivors may easily age out of the HPV-vaccine effectiveness age range and open themselves up to the risk of a new cancer diagnosis.

“We’re really focused on helping survivors stay healthy, and interventions that can improve their health and quality of life in the future. And the HPV vaccine is a safe, effective, well-established intervention to prevent future cancers,” Cherven emphasized.

Vaccines have been a hot-button issue for several years now, but are cancer survivors putting their health at risk by avoiding the HPV vaccine?

HPV-Related Cancer: Why Risk It?

Chemotherapy-induced alopecia, or hair loss, is a common side effect of many chemotherapy treatments for cancer. 

Chemotherapy works by targeting rapidly dividing cells, such as cancer cells. However, hair follicles also divide rapidly and are therefore affected by the treatment. As a result, hair loss can occur anywhere hair grows –– on the scalp, face and body. Not everyone who receives chemo will experience hair loss, but for those who do, it can be distressing.

For many people, hair is an important aspect of self-expression and identity, and losing it can be emotionally difficult. As she recalls her experience with chemotherapy for breast cancer, Lauren Thorse remembers that when she was told she would need chemotherapy, “my first thought was that my hair is gonna go.” 

As someone who reports struggling for years with self-confidence, Thorse, of Naperville, Illinois, found the impending hair loss upsetting. Having always had long blond hair, seeing it fall out in clumps and finding it around the house led her to decide to shave it. With the support of her father, and her mother and sister via FaceTime, her husband shaved her hair off.

After finally coming to terms with losing her hair, she then had to wrap her head around the fact that “it’s going to take years to get back to where it was.”

Cancer survivor Jessica Gardner of Youngstown, Pennsylvania, also took matters into her own hands when she began losing her hair from chemotherapy. After being diagnosed with breast cancer while 33 weeks pregnant and undergoing a bilateral mastectomy not long after having a cesarean section, she felt that she wanted to have control over something — and that was her hair loss. While livestreaming the shaving of her head, she felt as if she was getting some of her power and control back.

Once their hair was gone, both Thorse and Gardner felt frustrated over the lack of resources that were available to women their age, in their early 30s, with young children. They found that many of the resources were for older women and didn’t quite meet them where they were in life. 

Thorse recalls, “I felt like the wigs I was directed to were more for older women.”

Because Gardner found local support groups difficult to connect with, she created the group Cancer Is a Mother on Facebook. She found that this was a way to do something positive with her cancer diagnosis. “It was something I needed to do personally to feel better about cancer and where I was as a survivor.”

Hair loss can be gradual or sudden, and it can begin within a few weeks of starting chemotherapy treatment.

Some patients may experience thinning of the hair, whereas others may experience complete baldness. In some cases, hair may only thin or fall out in certain areas, creating patchy hair loss. This is most often temporary, and the hair will grow back once chemotherapy treatment is completed. 

However, in rare cases, some patients may experience long-term or permanent hair loss. The risk of either of those is generally low, but it can depend on the type and dose of chemotherapy used. Certain chemotherapies, such as taxanes, are associated with a higher risk of long-term or permanent hair loss.

Now that a full year has gone by since completing chemotherapy, Thorse states that although her hair is growing, she doesn’t look like she used to. “Every now and then I do mourn for myself if I do see a picture. It’s been a year, but I still have a long way to go.”

Chemotherapy isn’t the only cancer treatment that can affect hair. Hormone therapy for cancer treatment can target hormones that help cancer cells grow, such as estrogen and progesterone. It can be used to block the production of these hormones, or block the receptors that respond to them, or lower their levels. This changes the balance of hormones in the body and causes hair thinning. This also causes hair follicles to shrink, leading to thinner, weaker hair.

Lisa Opalweski, of Fond du Lac, Wisconsin, has experienced hair loss multiple times during her cancer journey. Initially diagnosed with breast cancer in 2012, she notes, “Yes, I knew I was going to lose my hair; yes, I was going to run around bald for a while. I knew it was going to come back.” 

After being diagnosed with metastatic cancer in 2019, she has been treated with hormonal therapy and targeted therapy. “I used to have extremely thick, curly hair. Now I have baby thin hair.”

temporary solution for hair loss. Many cancer centers and support groups have resources for obtaining wigs or hairpieces at little or no cost. However, there are now ways to help manage hair loss through scalp cooling. Cooling the scalp during chemotherapy treatment decreases blood flow to the scalp and reduces the amount of chemotherapy drugs reaching the hair follicles. By reducing the amount of chemotherapy that reaches the hair follicles, patients experience less hair loss.

According to the results of one study led by Dr. Julie Nangia, a breast oncologist and an assistant professor of medicine at the Lester and Sue Smith Breast Center and Dan L Duncan Comprehensive Cancer Center at Baylor College of Medicine in Houston, women receiving chemotherapy for early-stage breast cancer were enrolled in a study to evaluate the effectiveness of scalp cooling on hair loss. Of those who underwent scalp cooling, 50.5% had some preservation of their hair after four cycles of chemotherapy. In those who did not use scalp cooling, no one experienced hair preservation.

There are currently a couple of ways to cool the scalp. One way is through the use of cold caps, which uses tight-fitting caps placed on the head to cool the scalp during chemo- therapy infusion. The caps are stored in a special freezer and must be changed throughout the infusion to keep the scalp at a sufficiently cold temperature. In order to successfully use the caps, a patient will need to have help to change the caps at the instructed intervals during treatment.

Another method of scalp cooling is through a device that circulates coolant through the cap to keep the scalp at a consistently cool temperature. The hat is placed once at the beginning of treatment and the coolant will continue to keep the temperature consistent. 

According to Dr. Nangia, cooling the scalp starts 30 minutes before chemotherapy and the cap continues to be worn until 30 to 90 minutes after chemotherapy has been completed. 

It is also important to practice good hair care with scalp cooling therapy. This can include using a gentle shampoo, avoiding heat styling tools, and being gentle when combing or brushing the hair.

Dr. Nangia notes that the biggest barrier to scalp cooling is the cost. If insurance does not cover the therapy, out-of-pocket costs can be over $2,000. She states that the National Comprehensive Cancer Network, which provides guidelines for cancer treatment and supportive care, has added scalp cooling to these guidelines as a method to be considered for those who may experience chemotherapy-induced alopecia. 

With this recommendation from the network, Dr. Nangia hopes that insurance companies will start covering the cost of this therapy so more patients can benefit.

The rate of hair regrowth can vary for each patient, but typically hair starts to regrow within a few weeks to a few months after completing chemotherapy treatment. Regrowth may be slow at first, but it should become more rapid over time. It can take several months to a year for hair to fully regrow and regain its previous texture and color. In some cases, hair may not fully regrow or may regrow with a different texture or color.

Chemo curls, also known as “chemo waves,” is a term used to describe the changes in hair texture that some patients experience after chemotherapy. The term refers to the curls, waves or kinks that can develop in the hair as 

it regrows. This can be caused by the chemotherapy treatment and the changes in the hair

structure. It is not exclusive to scalp hair and can occur on hair all over the body. The new hair growth is usually soft and thin at first, and it may take several months for the hair to return to its pre-treatment thickness and texture. 

Some people may experience complete regrowth of their hair, whereas others may have patchy or thin hair growth. It also might take one to two years for hair to appear as it was before chemotherapy, and this can vary from person to person. Overall, hair growth after chemo is a gradual process, and it can take time for hair to fully recover.

Many members of the health care team are involved during cancer treatment. However, one area that is often overlooked and underutilized during this time is dermatology. 

Dr. Adam Friedman, professor and chair of dermatology at George Washington University in Washington, D.C., knows what dermatologists can offer patients experiencing hair loss during cancer treatment, but they are not often a part of the cancer experience.

He suggests prevention of hair loss through scalp cooling may offer the best results if someone is experi- encing complete hair loss, but there are other options for those with thinning hair that may be helpful. Applying topical minoxidil to the scalp can keep the hair in a constant state of growth. Friedman notes that it must be used consistently for best results and can be difficult to apply. 

He cautions against the use of supplements unless they are specifically approved by the health care team. Some supplements, such as biotin, can interfere with some blood tests, and may not
be safe for some patients to use. He also notes that the off-label use of Latisse (bimatoprost) can be helpful for regrowth of eyelashes and eyebrows after chemotherapy.

One of the most important things voiced by cancer survivors is that they want hair loss to be a topic that is brought up and discussed, and not glossed over, during visits. Megan Harman, FNP-C, with SSM Health in Lake St. Louis, understands this. She understands that hair loss can be a harsh reality the patient with cancer has to live with. It can be difficult for patients to fully prepare mentally and emotionally for hair loss until it happens. When talking with patients during this time, she often directs them toward various resources
and allows them the time to voice their feelings about their situation.

It is notable that much of the research about alopecia focuses on breast cancer survivors in comparison with other cancer survivors. One reason is that breast cancer is the most common cancer among women and the second most common cancer overall, so a large number of patients undergo chemotherapy treatment for breast cancer. Additionally, hair loss is a common and highly visible side effect of chemotherapy treatment, and it can have a significant impact on a person’s quality of life. Breast cancer survivors, especially women, tend to be more concerned about hair loss due to chemotherapy as hair loss affects their appearance and self-esteem.

Another reason is that breast cancer research has traditionally been well funded, which has allowed for more research to be conducted on the effects of chemotherapy on hair loss in breast cancer survivors. This has resulted in a greater understanding of the mechanisms behind hair loss and the development of new hair loss prevention and treatment methods specifically tailored for patients with breast cancer.

Many survivors see significant hair changes during cancer treatment, leaving a difficult reminder when they look in the mirror. 

Heal Spring 2023

Facing Cancer's External Side Effects

Answering the Call for Bladder Cancer Support

Spring into Salads for Cancer Survivors

The Invisible Side Effect of Visible Cancer Survivorship

HPV-Related Cancer: Why Risk It?

Managing Chemotherapy-Induced Hair Loss

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