October 19, 2026:

It’s been more than a year since Megan, 40, finished treatment for triple negative breast cancer—a harder-to-treat breast cancer that doesn’t respond to hormones or other first-line medications. 

But she’s still dealing with troublesome side effects from her treatment. There’s pain, and swelling caused by a backup of lymphatic fluid, otherwise known as lymphedema. She’s also struggling with symptoms from early-onset menopause caused by her chemotherapy regimen.

Megan, who requested Rewire News Group use only her first name to protect her privacy, has been working on seeing her oncology team less and relying on other specialties—like primary care and gynecology—more. She’s struggled to get care for those symptoms after being discharged from oncology treatment. 

“The wave crashes over you,” she said, likening her survivorship journey to the ocean. “And then you’re left with the wet clothes and everything stuck to you at the end, and you have to deal with this jellyfish stuck to [your] leg.”

Megan is not alone.

There are an estimated 4 million breast cancer survivors in the U.S., a number that has exploded over the past two decades due, in part, to improvements in prevention and treatment. Survivorship initiatives, or hospital clinics that focus on caring for patients after the initial wave of cancer treatment is over, are on the rise.

But many patients cannot access this specialized care. Without it, many survivors say they struggle to access compassionate, comprehensive, and coordinated health care after their initial phase of cancer treatment ends. 

That struggle is one Dr. Melissa Erickson understands intimately. The Ohio-based primary care doctor supported her father through a metastatic esophageal cancer diagnosis. And the experience sparked her interest in serving patients who had a history of cancer in a primary care setting.

Erickson has spent the past six years building an oncology primary care clinic at the University of Cincinnati. Along with her colleague, Dr. Sara Kleinschmidt, Erickson recently launched a new year-long Oncology Primary Care and Survivorship fellowship program, and they are currently interviewing their first batch of candidates.

Historically, survivorship programs have focused on adolescents and young adults with a history of pediatric cancer. But over the past two decades, more hospitals have established adult-focused survivorship clinics. 

“All of our patients are cancer survivors, so we feel uniquely equipped to say, ‘Hey, look, you’ve had chest radiation, or you’ve had anthracycline chemotherapy, and we know that those might lead to heart issues down the road,’” Erickson said. “‘How might we be more aggressive with your blood pressure management [or] your cholesterol management?’”

How programs operate vary from facility to facility, but they typically offer specialized services like additional cancer screenings, mental health support, and physical therapy. Some offer fertility and sexual health services.

The goal of the new University of Cincinnati program is to expose primary care doctors, pediatricians, and other kinds of physicians to multiple areas of cancer medicine and care—like radiation oncology, medical oncology, pharmacy, and social work. It will also train the fellows to provide “the most up-to-date and comprehensive care” to cancer survivors.  

“These patients are more complicated,” Erickson, the medical director for the cancer survivorship and oncology primary care program at University of Cincinnati Health, said. “We really felt like it was important to have some dedicated training in order [for primary care physicians] to feel comfortable [treating them].”

More cancer survivors need specialized care

Scientific advancements in breast cancer care mean patients have more treatment options. Patients may undergo surgery, chemotherapy, or radiation—or some combination of the three. They may also qualify for immunotherapy and other targeted medications that help kill cancer cells.  

But those treatments can come with both physical and mental side effects, including fatigue and pain. Then there’s the financial stress. And because of hormone changes that happen during and after treatment, survivors may also experience drastic changes to their overall sexual health, experts and survivors told RNG. 

Megan said she has genital atrophy, a condition involving the thinning of vaginal and vulvar tissue that puts her at risk of infection. It has also diminished her enjoyment of sex. 

Estrogen has been shown to help with these symptoms. But doctors have historically been reluctant to prescribe hormones to patients with a history of breast cancer for fear that it could increase the risk of recurrence. More recent evidence suggests that low-dose, vaginally-delivered estrogen may not increase the risk of cancer coming back. 

But Megan said her providers didn’t want to take the chance. She’s been left without relief.

“[Sex] is painful for me,” she said.

And it impacts her marriage. 

“It’s hard to turn down somebody who really wants to feel in an intimate place with you,” she said. “You find other ways to support each other, but it’s just not the same.”

On top of sexual side effects, patients may face fertility challenges after cancer treatment. 

When Danielle Armstrong was 31 and serving in the Peace Corps in Albania, she felt a lump in her breast. Within days of being rushed back to the U.S. for urgent testing in February 2020, she was diagnosed with the same aggressive type of breast cancer Megan faced. 

Armstrong decided that she wanted to preserve her fertility through a method called ovarian suppression, which involves injecting a hormone medication to block eggs from maturing during treatment. But she said a communication error prevented her from getting the shot. 

On the day of her first chemotherapy session, her regular oncologist wasn’t in. The doctor who was assigned to her that day claimed chemo would have the same effect as the ovarian suppression drug.

In 2024, four years after her initial diagnosis and about three years after she finished treatment, Armstrong went to see a fertility doctor who wanted her to pursue using donor eggs for IVF. 

“You’ve got nothing,” she recalled him saying.

Cancer treatment’s lasting effects

Armstrong ended up conceiving without additional medical intervention before she could start the full IVF process. Now 38, she is raising a toddler in Washington state. But her care team’s failure to preserve her fertility still frustrates her. 

“That sucked,” Armstrong said. “And that was a result of that treatment, because you kill yourself to survive.”

And while some side effects of cancer treatment—like fatigue, hot flashes, and sexual dysfunction—may surface quickly, others can take longer to emerge. It’s why having ongoing primary care is important, experts said. 

The experts RNG spoke to also said patients who have completed treatment often fear that their cancer will return. Those living with advanced stages of the disease, in ongoing maintenance treatment, may fear that their cancer will progress. Both concerns can cause chronic stress. 

“It’s not just your plain old anxiety,” Dr. Maryam Lustberg, the chief of breast medical oncology at Yale Cancer Center. “It’s an actual fear and worry that any moment your cancer could be back, that any new symptoms could be related. And it can really rob you of enjoying the present.”

That kind of stress can be compounded by the transition from active cancer treatment, which often involves frequent medical appointments, to not needing routine oncologic care. 

Certain kinds of chemotherapy and targeted therapeutics can also increase an individual’s risk of heart problems later on. 

Earlier stage breast cancer survivors are “more likely to die from heart disease than they are from their cancer coming back,” said Erickson. “And some of the cancer treatment they had could increase some of that risk.” 

“It’s important that we really pay attention to things like your cholesterol, your blood pressure,” she added. “These issues really do matter in the context of your cancer.” 

‘I’m in a system that doesn’t see me’

Finding a provider who understands that context can be difficult. All of the survivors RNG spoke to encountered challenges with navigating their routine medical care after completing cancer treatment.

Many said they found it hard to trust a primary care provider to properly differentiate between symptoms of routine health-care problems and symptoms that could be related to cancer. Some felt like they had to relay complicated medical information between their oncology team and other medical providers who were uncertain about how to coordinate their care. 

Sylvia Saxena, a women’s health nurse practitioner and public health software founder from Indiana who was diagnosed with triple negative breast cancer in 2024, said that even with her medical background, it was difficult to get clear answers from providers about who was responsible for what symptoms after her cancer treatments ended.

“Your primary [care provider] refers you to gynecology. The gynecologist is like, ‘No, you have to go to your oncologist,’” she recalled. “It was a mess.”

In April 2025, she ended up traveling roughly 300 miles back to the Cleveland Clinic, where she had been treated for triple negative breast cancer in 2024, to get clearer answers from providers who specialize in treating women who have had cancer. 

“Who does what is a big issue in survivorship care,” said Lustberg of Yale. “We still haven’t gotten it right. … Patients do sometimes get caught in the middle.”

Troubleshooting symptoms and side effects with various providers can be even more painstaking for certain groups of survivors. 

For nonbinary and trans patients who’ve had breast cancer, for example, it can be hard to find an inclusive provider and sort out gender-affirming hormones while getting care. They may not feel represented in breast cancer treatment and support spaces typically designed for cis women.

Ash Davidson, a trans cancer advocate, was diagnosed with a common, hormone-sensitive form of breast cancer in late 2023 after his surgeon found a tumor during his top surgery. 

Davidson said the resources and environment for cancer care are not set up for the queer community.

He recalled feeling like he didn’t belong in support groups for men with breast cancer or in those designed for cisgender women. 

“I’ve never been socialized as a man. I don’t share any of their experiences,” he said. “And the women’s groups were totally intimidating to me. These are supposed to be sacred safe spaces for women. I’m gonna show up, and not only do I look just like a dude, [but I’m also] a trans person. Like I’m going to ruin their sense of safety.”

Davidson, who uses he and they pronouns, said they were lucky enough to have affirming, competent providers (though some staff at the hospital where he received care misgendered him). But sorting out which symptoms—like deteriorating mental health, shoulder problems, and night sweats—were related to treatment versus unbalanced hormones has been a challenge. 

“Mixing all of those things together and not having a ton of research and standards of care out there means that we’re just doing a lot of trial and error,” he said. “It was a constant reminder that I’m in a system that doesn’t see me, that’s not built for me, that doesn’t have information for me.”

Some patients felt their providers dismissed their post-treatment concerns. 

Jill Caceres of Colorado had a lumpectomy, a surgery that involves cutting out both cancerous tissue and a small section of surrounding healthy tissue from the breast, in 2021 after being diagnosed with breast cancer caught in its earliest stage.

Twice after her surgery, she said, her right breast got really swollen. Ultimately, it was probably just a pulled muscle, she said. 

But she was scared and felt that her care team “just kind of blew it off as me being too anxious.” 

“It felt like they were like, ‘What are you worrying about?’” Caceres said. “And I’m like, sorry if I have breast cancer and the breast that it was in is super swollen now.”

‘It’s not just enough to be cured’

Patients aren’t the only ones frustrated with the state of survivorship care in the U.S. 

Dr. Michelle Mollica, who holds a PhD in nursing science and is the director of survivorship care delivery at Hollings Cancer Center in South Carolina, studies cancer survivorship and the coordination, role clarity, and communication between primary care and oncology. 

She said both primary care and oncology providers struggle to communicate and divide up the care. That can mean patients miss both screenings and follow-up care, or that they undergo the same testing multiple times because both teams order it.  

The experts RNG spoke to said primary care providers are often stretched thin. And even when patients trust their primary care providers and come to them with problems, Mollica said, the clinicians sometimes don’t feel well equipped to help—especially if they aren’t getting input from an oncology team. 

And while major medical associations have guidance on how to provide primary care to breast cancer survivors and tools for managing troublesome symptoms that arise from treatment, providers might not have the resources or lack confidence in their ability to care for patients independently. 

All of the survivors interviewed for this story said they would be interested in seeing a primary care provider with additional expertise in or experience treating cancer survivors. 

Even so, not everyone has access to these programs. 

Survivorship programs are more common at large academic hospital systems and cancer centers recognized by the National Cancer Institute. People who live in rural communities or in areas with community hospital cancer programs are less likely to have access to this specialized care. 

And patients whose care facilities do have these services might not know they exist. 

They also need to feel comfortable seeking out the care in the first place. 

“Having a more informed primary care team that understands the long tail effects of things like chemo and radiation is absolutely something that I would seek out,” Davidson said.

But only if the provider is trans friendly and affirming. 

“I have to kind of always look [through] that lens first,” he added. And “sometimes that means that I don’t get to see some of those doctors.”

Providers and researchers are working to expand access to care—both through programs like what Erickson and Kleinschmidt are doing at the University of Cincinnati, and through training existing primary care providers. But in the meantime, they said, patients should feel empowered to advocate for more tailored care with their existing providers. 

“There is the ability to have a life after a cancer diagnosis,” Mollica added.

“It’s not just enough to be cured,” she said. “They really do deserve to have a good quality of life.”

Source

Source link