From early menopause to fertility uncertainty, young women with cancer lack support – National

 

Hilary Boswell was diagnosed with breast cancer just days ahead of her 40th birthday.

“I was in some of the best shape of my life. My body had never been more fit or looked better.”

Her cancer diagnosis would quickly change that. A unilateral mastectomy — a surgery she didn’t necessarily want but felt pressured into by her surgeon — would leave the Calgary woman with one breast. Add that to the hair loss from chemotherapy and other side effects from cancer treatment and Boswell says it felt like she was staring back at a stranger in the mirror.

“I definitely was in love with myself before,” she told Global News. “I don’t think I will ever look at myself the same or ever love what I see, like I did before.”

It’s a familiar story for the thousands of young Canadian women diagnosed with cancer each year. Treatments vary depending on the type of cancer, and each person has a different journey, but every diagnosis shares common themes for young women — lives and careers put on hold, disfiguring and long-lasting side effects from treatment, and snap decisions that need to be made around family planning and fertility.

Global News spoke with several young female cancer survivors and women working in Canada’s cancer community to find out more about the unique challenges that these young women face, and how the medical industry and cancer community are slowly adapting to accommodate a younger cohort of cancer patients as cancer diagnoses continue to rise in that age group.

The pressure of family planning

One of the biggest issues young women face upon receiving a cancer diagnosis is uncertainty about their fertility, says Katie Thomas, director of clinical programming at Gilda’s Club Toronto, a cancer organization that provides support and workshops for cancer patients and their families.

“Young women, especially in their teens and 20s, might not actually be thinking about family planning yet, and then, all of a sudden, they’re being asked to make decisions about their fertility quite quickly, when they receive a cancer diagnosis,” she told Global News.

Many cancers are treated with chemotherapy, which can shut down the ovaries on a short-term or long-term basis, sending otherwise fertile young women into peri- or full-blown menopause. Doctors often can’t predict if or when a woman’s period will return or if she’ll one day be able to conceive, meaning many are tasked with making decisions around family planning and fertility preservation in as little as 24 hours.

Time is of the essence for many young women, who are asked whether they want to undergo egg retrieval before they start chemotherapy, or undergo surgery or radiation that could affect their reproductive organs.

“When people are diagnosed with cancer, they’re immediately put into a system where everything moves really fast. So, once you get a diagnosis, you’re having to make decisions about your care in a really fast way and you’ve got to wrap your head around the treatment plan,” said Thomas. “But then you’re also tasked with wrapping your head around decisions about fertility and it can be really intense and stressful, especially when you’ve never considered it much before.”

Dr. Kimberley Cullen, a Toronto-based clinical and health psychologist who works with young women affected by cancer, agrees, noting the amount of information thrust on cancer patients when they first enter the medical system can be overwhelming and they’re often not in a headspace to make so many decisions so quickly.

“A lot of patients, as well as medical providers, will share reports — particularly when the diagnosis is first given the focus — on treatment and preserving (the patient’s) life. But what can happen is that there is so much information coming at women that the issues (of fertility and menopause) are not necessarily top of mind, not because they’re not important, but because there are other, more pressing issues.”

For Dr. Amy Morris, a Saskatoon ovarian cancer survivor who now works in the field of cancer recovery for young women, the issue of fertility wasn’t her top priority upon her diagnosis. Rather, she was laser-focused on saving her own life.

“I’d say my oncologist was probably more focused on (fertility), which I know is not the story for a lot of women,” she told Global News, noting that many of her clients express the stress that comes with deciding whether to delay life-saving treatments like chemo and surgery in order to undergo fertility preservation treatments.

“It’s a high-stakes, high-stress decision that these women are being asked to make, essentially, on their own, and sometimes with little information.”

The issue of early menopause

When the initial diagnosis dust settles, Cullen says that fallout from treatment-induced menopause is another one of the most-cited stressors she hears about from her clients.

“The problem with menopause among female cancer patients, which is induced primarily through chemotherapy, is that it’s pretty instant and it’s pretty quick and it’s…at a time where it is normally not expected to happen,” she said.

Despite being put into forced menopause — a phenomenon that oncologists are well-aware can happen — Cullen says many of her patients report not being properly educated on the short- and long-term side effects.

“(There can be) a change of sexual libido and interest, and pain and vaginal dryness,” she said, as well as symptoms “like fatigue and hair-loss and changes to their skin, difficulties concentrating. And this is a very drastic change for women to cope with after already having gone through cancer treatment.”

Brandi Cockerton was diagnosed with hormone-positive breast cancer in 2020 at the age of 46. She’s had almost a year of living with No Evidence of Disease (NED), but the Calgary resident says being in a state of forced menopause due to ongoing hormone blockers has really affected her confidence — not to mention a double mastectomy and reconstruction surgery that left her with smaller breasts, scars and no nipples.

“How do you wrap your head around losing your breasts, losing your nipples, losing the whole thing, and then still somehow feeling like a sexual being?” she wonders.

A single mom of three, Cockerton has tried dating since being declared NED, but it hasn’t been an easy road. While she was told by her oncology team the typical side effects could result in menopause, she says she wasn’t informed of other cancer-related side effects that would eventually come to affect her sex life.

“They talked about the possible neuropathy on my hands and feet during chemo,” she said, referring to common tingling and numbness that can occur when chemotherapy drugs damage the body’s nerve endings, “but nobody ever talked to me about my sexual organs being affected by neuropathy. And so when that started to happen to me, I honestly was so freaked.”

Cockerton says she’s feels a bit let down by the care she’s received — she’s been left to cobble her recovery plan together and track down information that wasn’t given to her by the hospital’s oncologists and cancer support teams. The one time she did have an appointment with a sexual health counsellor, she got confused and missed the appointment and wasn’t offered a chance to reschedule.

She’s discussed her issues with her oncologist, and while she says that he’s receptive to the conversation, she’s been met with a response of “It is what it is. There’s nothing we can really do about that.”

Morris says stories like Cockerton’s are familiar and her clients often share feeling less-than-supported by health-care teams.

“Many cancers that are diagnosed in women are hormone-driven, so these women aren’t in a position where they can take estrogen replacements to minimize the effects of menopause. And, a lot of the time, they’re on long-term medications to keep them in a low state of estrogen for many years after cancer, meaning they’re having trouble losing weight, they’re having terrible hot flashes, and they’re struggling with exhaustion that’s common in menopause. But their teams are often just addressing what’s happening while they’re in active treatment, with little discussion about the long-term health implications and struggles.”

Cullen says she believes health-care professionals are increasingly shifting to a client-based care strategy, which looks at the unique needs of each client when providing treatment and support, but says there’s still an amount of uncertainty in the health-care sphere about who should be providing this support, and at what time.

“I also think there’s an assumption that if women do have these issues they will go and seek this information for themselves.”

She says patients may also feel embarrassed bringing up these topics with their care teams. Many of the women she works with report a fear of being judged for not having their priorities straight if they ask about sex, or they’re waiting and hoping that their practitioners will bring up the topics first.

Boswell says she had no problem approaching her oncologist for advice on how to alleviate pain during sex — a common symptom of chemo-induced menopause. Instead of an open conversation, however, he directed her to a website.

“I understand he’s an oncologist and he’s got a million patients, but what I needed in that moment was for him to say ‘I will help you and I will walk you through this.’ I really don’t feel like I got that.”

The oncologist vs. the patient

Many young women also report the difficulties that come with advocating for their particular wants and needs vs. what their oncologists believe should happen.

Facebook pages for breast cancer patients, like Young Survival Coalition and Flat & Fabulous, detail horror stories from women around the world who report being pressured into breast reconstruction by their surgeons, or worse, who wake up after surgery to find a completely different procedure was performed while they were under anesthesia.

Cosmopolitan magazine detailed the shock one American woman faced when she woke up from surgery, expecting a double mastectomy performed with flat closure, only to find her surgeon had left behind her breast flesh, leaving drooping bags of skin – all the breast tissue removed from behind them — hanging off her chest. He told her he spared the skin in case she one day changed her mind about reconstruction.

In Canada, it’s a bit of a different story. Canadian hospitals and oncology units largely rely on publicly funded healthcare, so surgeons often err on the side of recommending surgeries that will both keep costs down and minimize risk to patients. That can leave women feeling like they aren’t supported in their treatment decisions, with oncologists relying too heavily on survival statistics as opposed to patient wants and needs.

Boswell said she felt talked out of a double mastectomy by her surgeon. As a roller derby athlete, she wanted her surgeon to remove both of her breasts and opted out of breast reconstruction. She’d face shorter recovery time and be back to physical activity sooner.

But her surgeon, looking at the survival odds and chance of recurrence stats, told her he didn’t want to remove the healthy tissue in her non-cancerous breast, which, essentially, would double the chances of something going wrong. Now, with one breast, Boswell says she has the option to have the other breast removed but additional surgery at this point would be another painful reminder of the toll cancer has had on her life.

“I remember him saying, ‘If you change your mind in the future, it’s always an option.’ But now I’m just trying to live, trying to put some distance from cancer, trying to move on.”

Cockerton recalls being given the options for her breast cancer surgery, but being left with little information beyond that. Ultimately, it was her plastic surgeon, rather than her surgical oncologist, that helped her choose between a lumpectomy and mastectomy, showing her pictures of what the different surgeries could look like once healed.

“That was the support I felt like I should have been given initially. Because I wanted to get rid of the cancer, of course, but I also wanted it to look good aesthetically and feel good about myself and how I look.”

The toll on connection

This frequently reported lack of support doesn’t just exist in patient’s relationships with their health-care teams, unfortunately.

Jacobs says a lot of the young women who reach out to Gilda’s Club Toronto find difficulty in relating to their non-cancerous peers.

“Cancer mostly affects an older population, so it can be really hard to find someone who you can relate to when you’re facing a young cancer diagnosis, especially if you’re not living in a big city.”

Younger women, she says, are less likely to have a long-term partner or spouse, so they may not have a supportive caregiver to help them with daily challenges. She says young women with cancer are also watching their peers move forward with careers, starting families, climbing the real estate ladder, travelling and beginning to map out the rest of their lives.

“All of a sudden your life is put on pause and you watch your peers continue on. That can be really challenging and a lot of times it alienates these women from their peers, meaning friendships are lost or there’s this isolating distance forced on relationships.”

Morris said she struggled in her local cancer centre, where she’d often be the youngest person in the chemo infusion room.

“I looked around and I was the youngest, and not by a couple of years, but by decades. The people that sat beside me in chemo, we struggled with different things. They were sitting there with their adult children — kids who were my age — and I was sitting there wondering, ‘What happens to my student loans if I die?’”

Morris, inadvertently, touches on another important stress for young patients: they are much less likely to have established a financial nest egg in their 20s and 30s, meaning the cost of leaving a job or absorbing the additional costs of cancer not covered under Canada’s health-care system can be crippling.

“Younger adults have not been in the workforce for a very long time. They may have to move back with their family. They might have to stop making money for a while as they receive their treatment because they’re unable to work,” says Jacobs. “We hear that a lot that they’ve been put back financially, that they don’t have the same financial flexibility and resiliency that their (older) peers may have.”

Another huge issue, Jacobs adds, is the immense isolation and guilt women with young families face while trying to parent and juggle a cancer diagnosis. Kids, she says, are often resilient and can handle a parent’s cancer diagnosis well, but it can be hard on the whole family.

“They’re not seeing other families with cancer in their communities or they’re not meeting another parent with cancer at their child’s school. They don’t have anyone to talk to about these unique parenting challenges.”

Room for improvement

What now feels like a piecemeal system, where women are left to fill in the gaps on their own, could benefit from a number of improvements, say the experts we spoke with.

Cullen says one area where oncology teams can improve is by focusing more concern on the individual needs of patients, as opposed to treatments plans based largely around survival odds. She cites assumptions around breast reconstruction as an example.

“We lean a bit too much on the assumption that all women will want to have breast reconstruction…because if we are asking in a very directive way that demonstrates we are just assuming a woman wants (reconstruction) it takes away the room for dialogue to think about other options.”

Cullen says that health-care teams should spend as much time discussing sexual health with a patient as they do prioritizing fertility treatments. The two are entirely different topics and hold different weight for each individual, but teams should spend time parsing out each patient’s individual needs for support with both.

Morris says discussions around mental health, too, could benefit from being “baked into the cancer experience,” because as it stands, it’s often seen as secondary to ridding the body of cancer.

“In reality, it should be, like, you go to your bloodwork, you go to your therapist, you go to your chemo, you go to your scans. The mental health component should be just as routine as all the other cancer appointments.”

Jacobs says that one positive she’s noticed in recent years is the effect the COVID-19 pandemic had in opening up online spaces for young people with cancer to connect. The pandemic forced Gilda’s to close their physical doors on most of their programming — the risk of spreading the virus to already immune-compromised individuals was just too great — but the organization was able to reach more people by offering up online classes and workshops.

“Now, we’re reaching a lot more people who live in rural areas and we’re seeing those people connect, maybe for the first time, with someone else with cancer or with our support system.”

Still, Jacobs says Canada’s young cancer community could benefit from a more consolidated approach to cancer support, a sort of one-stop-shop where people can learn about all the organizations and support groups that are out there helping young Canadians live with and beyond cancer.

Morris tends to agree, but says in an ideal world she’d love to see each patient paired up with a mentor at the start of their treatment, someone to help them, in addition to navigating the medical system, connect with broader cancer community and all the resources and support networks out there.

In the meantime…

Cockerton and Morris both say that seeking communities of support outside hospital walls has been a game-changer in their cancer experience, but it can take a lot of digging and legwork to find those groups and organizations.

Young women, too, need to be the squeaky wheel when it comes to their cancer care, says Morris.

“People wonder how I got diagnosed with ovarian cancer, which is known as the ‘silent killer’ of women’s cancers because the symptoms can present as so many things other than cancer. Well, it’s because I was annoying. I wasn’t settling for just one answer, I wasn’t going to stop until I was satisfied. If I didn’t get the answer I needed, or if I was facing a long wait time for a scan, I would keep calling. I’d call the next place and then I’d call again the next day.”

Morris does admit, as it stands, the amount of effort young women need to expend advocating for themselves is a tremendous undertaking and difficult when they’re already feeling exhausted.

However, she recommends two relatively easy and energy-preserving ways to expand their support network. First, she says that talking to chemo nurses and hospital support staff can help: “These people know so much about the cancer world and often have a bit more time to spend with patients, so they’re a resource for everything from side-effect management to recommendations for groups and organizations working to help young cancer patients.”

She also suggests that young women dive into the online cancer community, where thousands of young people worldwide are connecting and sharing their stories on social media platforms like Instagram, TikTok and Facebook.

“I’ve connected with people of all ages and all types of cancer and I’ve learned so much from them. A lot of these people have become my friends.”

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‘Against All Odds: Young Canadians & Cancer’ is a biweekly ongoing Global News series looking at the realities young adults face when they receive a cancer diagnosis.

Examining issues like institutional and familial support, medicine and accessibility, any roadblocks as well as positive developments in the space, the series shines a light on what it’s like to deal with the life-changing disease.