Forum offers practical insights to meet needs of cancer survivors, overcome gaps in care
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An estimated 18.1 million cancer survivors live in the United States, and that number is expected to exceed 22 million by 2030.
This positive trend — due to advances in detection and treatment — has created challenges for the clinical community.
“There continues to be a gap in how to implement many of the programs designed to address the needs of survivors,” Anne H. Blaes, MD, director of the division of hematology, oncology and transplantation at University of Minnesota, as well as director of cancer survivorship services and translational research at Masonic Cancer Center, said in an interview.
“When we’re talking about genetic testing, sexual health or fertility, it’s one thing to know there’s a problem, and that we need to ask about it more or connect them with specialists trained in those areas,” Blaes added. “It’s another to actually make sure that is happening across the board, and know what models to use.”
Blaes — a Healio | HemOnc Today Editorial Board member — served as a faculty member and planner for this year’s Cancer Center Survivorship Research Forum.
The 2-day program — which drew leaders from ASCO, NCI and American Cancer Society, plus clinicians from across the country — focused on how to deliver optimal survivorship care and identify strategies to further survivorship research. Healio served as an official media partner for the forum.
This Healio exclusive provides expert insights from forum faculty about three of the core topics discussed — fertility preservation, genetic testing and sexual health — including advice for how oncologists can help guide their patients through these aspects of survivorship.
Preserving fertility ‘takes a village’
Establishing and running a successful fertility preservation program for cancer survivors requires a multidisciplinary team effort.
“It’s not just the reproductive endocrinologists — it’s often the surgeons, the embryologists, the navigators who guide the patients,” Ruben John Alvero, MD, professor of obstetrics and gynecology at Stanford Medical School and division director of reproductive endocrinology and infertility at Lucille Packard Children’s Hospital, said in an interview. “It involves the psychologists and nurses, too. It’s a huge enterprise — it’s the kind of thing that takes a village.”
In his breakout session presentation, Alvero discussed fertility preservation methods through ovarian and testicular routes. He also addressed ovarian tissue cryopreservation, typically performed for prepubertal girls undergoing treatment for cancer.
Alvero expressed the hope that, over time, reproductive technologies will advance and be applicable to preserved eggs and embryos.
“As our technology gets better, there will be more promise to use these tissues for fertility,” he said. “Right now, relatively few centers do the ovarian tissue reimplantation part of this process, and that’s one of the big holdups.”
Financial issues present a barrier to the delivery of fertility preservation services, Alvero said.
In California, Senate Bill 600 — signed into law in 2019 — requires that private insurers cover fertility preservation. Still, coverage can be inconsistent because many insurance companies find “clever ways [to] avoid it,” Alvero said. Additionally, this does not help individuals with public insurance.
“For many of our patients, it’s a tough decision to make in terms of how much money to spend on [fertility preservation],” he added. “We’re working on improving access to care, especially in that financing aspect.”
Oncologists can play a role in assisting with fertility preservation by referring patients for these services before the start of cancer treatment, Alvero said.
“Oncologists have increasingly participated in fertility preservation — it used to be a hard sell, because oncologists are focused on treating cancer,” he said. “However, quality survival is also important and, for many reproductive-age patients, fertility is part of that.”
Ideally oncologists should refer patients for fertility preservation within a day or two, so that the fertility preservation team can begin investigating insurance coverage, ordering medications and educating patients about the optimal procedure, Alvero said.
“A lot of times, once treatment has started, we’re adding toxic therapies that can adversely affect the eggs and the outcomes are going to be poor,” he said. “The biggest thing the oncologist can help us with is to get the patient to us as soon as possible.”
Blaes agreed fertility preservation is a crucial component of clinician-patient communication, and she offered additional advice.
"We should not assume that patients in their late 30s or early 40s are not interested in talking about fertility," Blaes said. "In addition, we are seeing more colon cancers and breast cancers among younger patients, and many people are simply putting off childbearing. So, fertility is potentially a bigger issue than ever."
A key consideration is how to do this in an equitable fashion, Blaes said.
"We have many cultures where oftentimes there are topics that are challenging," she said. "We should be thinking about how we can work with our community partners and work with our lay team to make sure we’re sensitive to that."
Guidelines, technology inform genetic testing
Advances in genetic testing have created unprecedented opportunities for cancer survivors and their relatives to learn about individual or familial cancer risks.
In her presentation, Kerry Kingham, MS, CGC, discussed ways in which current genetic tests offer greater insight at a more affordable cost.
“Genetic testing used to be thought of as one-and-done, and it turns out that’s not the case,” Kingham — lead cancer genetic counselor for the clinical cancer genetics program and clinical assistant professor of pediatrics at Stanford University School of Medicine — told Healio | HemOnc Today. “As technology gets better, our ability to detect things gets better at finding things. It not only helps the patient but also their family.”
Some cancer survivors who stand to benefit from innovations in genomic profiling may not have received this testing at diagnosis due to ineligibility under guidelines at the time, Kingham said. However, guidance continues to evolve.
“The guidelines now say if you are 50 or younger with colon cancer, you should be offered genetic testing for hereditary causes, whereas in the past you needed three relatives [diagnosed with the disease],” Kingham said. “A patient diagnosed 10 years ago never would have met those criteria. And because the tests were so expensive, most patients weren’t paying out of pocket if their insurance didn’t cover it.”
Another key guideline update is an expansion of the number of genes these tests can effectively assess. A patient who may have been tested at diagnosis for a more limited set of genes now might be eligible for more extensive testing.
“A patient may have had what we now consider incomplete testing — maybe they were tested for one or two of their genes,” Kingham said. “Now, we’re testing for 25 or more genes. We’re casting a wider net.”
More in-depth examination in the form of RNA analysis also adds to the amount of information available through genetic testing.
Although most labs maintain there is still a small probability that adding RNA to a test will find a pathogenic variant, this technology nevertheless “gives a slight edge,” Kingham said. In some cases, patients with prior negative results through genetic testing may benefit from retesting using more updated technology.
“Sometimes patients will come to us and say, ‘I was already tested for Lynch syndrome’ or ‘I was already tested for BRCA,’” Kingham said. “Now we have improved ability to detect these things. Just because it was negative before doesn’t mean it will be now. The genes don’t change, but our tests get better.”
As patients with cancer move into survivorship, the interval between visits to their oncologist tends to increase. For this reason, it may be valuable for clinicians to check whether a patient’s genetic testing is up to date and optimized by the latest technology.
“Every time the patient comes in, just take a look at it,” Kingham said. “Hopefully, some oncologists have a genetic counselor they can consult with. Most genetic counselors are OK [with] a physician calling us about whether they should send a patient over.”
Knowledge of a patient’s most recent genetic testing status also can help inform and optimize a patient’s cancer treatment regimen, Kingham said. If a cancer survivor is subsequently diagnosed with a new malignancy, having the most recent information about their genetic status can help expedite adoption of the most effective therapies.
“For instance, [poly(ADP)-ribose polymerase (PARP)] inhibitors for some of our BRCA carriers can be very useful,” she said. “It’s been amazing to see the shift from a downstream thought about genetic testing to, ‘Hey, this patient has a new diagnosis — we need them tested immediately,’ because it’s going to change what we would use.”
Sexual health complex, often unaddressed
Cancer survivors often face long-term sexual side effects, both in terms of physical function and confidence, body image or ability to connect emotionally with a partner.
Ongoing sexual problems in survivorship are all too often left unaddressed due to patient and provider discomfort talking about this topic.
“So many people feel alone and isolated, and they don’t know who to talk to about these problems. It’s something that gets hidden in the bedroom,” Catherine Benedict, PhD, clinical associate professor of psychology and behavioral sciences at Stanford Medicine, said in an interview.
Treatment exposure is the cause of many of the most common sexual issues seen in survivorship, which can include vaginal dryness, irritation or pain with sex, Benedict said. Other issues — such as low libido, erectile dysfunction or anxiety about sex — may have both physical and psychological origins.
Body image is another common problem with sexual health in survivorship for both men and women.
“I define body image in terms of the look, feel and function of the body, and all the ways cancer treatment can impact your body and change those things,” Benedict said. “The experience of going to the hospital and getting poked and prodded by strangers is difficult, and so it can be adaptive for people to separate from the body, psychologically. The body isn’t a pleasant place to be.”
Although this adaptation may serve its purpose while a person is undergoing treatment, it is generally the opposite of what is desirable in terms of a sexual encounter.
“During sex, we want to be embodied, we want to be connected to our bodies,” Benedict said. “I work with my patients on how they’re feeling about their bodies and how connected they’re feeling.”
In partnered sex, the wish to please one’s partner can lead to additional frustration, miscommunication and confusion, Benedict said.
“Sometimes a person can feel comfortable being alone in finding sexual pleasure, but as soon as you have that dynamic of another person, there’s pressure,” she said. “I work with women, and women often rush through because they’re worried about their partner having pleasure. They’ll just rush through so it’s done and over with, and they can check that box for the week. That’s not good.”
Benedict said this kind of situation often goes undiscussed, even between couples in a loving, trusting relationship — perhaps especially in those situations. She attributes this to a phenomenon known as “protective buffering,” in which individuals in a relationship avoid bringing up topics that they think will upset their partner.
“This is often done out of love,” Benedict said. “They’re trying to protect the other person, but then nothing gets talked about and it’s hard to move on. Meanwhile, their partners want to be supportive in any way they can, but without communication, they’re just lost.”
If neglected, sexual problems in survivorship generally do not resolve on their own, Benedict said. They either stay the same or worsen with time.
Consequently, there is one clear way clinicians can help cancer survivors with sexual health, Benedict said.
“My message to cancer care teams — whether it’s oncologists, nurses or advanced practice providers — is to please bring this up,” she said. “The same way that you ask about any other side effects of treatment, please bring it up. I don’t need you to spend the entire appointment talking about sexual health, but I do need you to bring it up and ask your patient if it’s a problem.”
Research has shown that survivors and patients want their providers to talk to them about sexual health, Benedict said. In many cases, clinicians can simply refer patients to the sexual health services they may need.
“When it comes to sexual health, I work closely with gynecologists, pelvic floor physical therapists and other specialists,” she said. “I need those front-line cancer care providers to screen for any sexual problems and then pass them off to us, so that we can take the time to dive in and do a careful assessment and treatment plan.”
One question remains whether the clinical community adequately prepares patients for these effects when consenting them for treatment, Blaes said.
"I think we try but, when people are receiving a new cancer diagnosis and are being told about the cancer and the major complications — like heart issues or low blood counts — this isn't necessarily high on their list. It is later, though, because it is part of their daily quality of life."
Also, clinicians often are not well-trained on how to address this subject, Blaes said.
“I would challenge clinicians and remind them that we don’t have to have all the answers,” Blaes said. “We can work with our partners on how to address sexual side effects. But we have to ask in order to really know how it’s impacting our patients.”
References:
The following were presented at Cancer Center Survivorship Research Forum; Sept. 11-12, 2023, Stanford, California:
- Alvero RJ. Oncofertility.
- Benedict C. Sexual health/intimacy.
- Kingham K. Assessing genetic risk.
For more information:
Ruben John Alvero, MD, can be reached at ralvero@stanford.edu.
Catherine Benedict, PhD, can be reached at cbenedict@stanford.edu.
Anne H. Blaes, MD, can be reached at blaes004@umn.edu.
Kerry Kingham, MS, CGC, can be reached at kkingham@stanfordhealthcare.org.
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