She’s young. She’s fit. She’s got cancer. special report
They should be doing themselves up for dates, building careers or chasing toddlers. Instead, a surprising number of women spend their 20s and 30s battling cancer. Here, a look at the disease’s “orphan generation”
Natalie Cincotta Occupation: Website manager/Education student Home: Melbourne, Vic Type of cancer: Stage II Hodgkin’s lymphoma Age diagnosed: 23 Age now: 26
By Dominic Cadden Photography by JOHN RINTOUL
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Women’s health
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woman, you’re not at a high risk of getting cancer, but if you’re unlucky, you can maximise the success of diagnosis and subsequent treatment with this battle plan.
Listen to your body
Vesna Sugden wasn’t too concerned at first. She had an awkward sensation when swallowing food and drink – probably just acid, her doctor said. Apart from that, life was great for the 35-year-old Gold Coast mum of two boys (see pics over page). But the problem never went away and she was dogged by a nasty cough. She felt an uneasy pressure when Marko, her two yearold, was on her chest, and soon she was waking with shooting pains from her shoulder to her hand. Vesna asked her doctor if it might be a heart problem (she’d had rheumatic fever as a kid). Her doctor did an ECG (electrocardiogram) and said her heart was normal for her age and history. Four months after she first went to the doctor, Vesna had trouble breathing during a holiday in the snow. “I came back with a terrible cough and couldn’t sleep at night because I was choking,” she says. “I’d try to mop the floor and I’d do a metre before I was on the ground coughing. I went to the doctor again and said, ‘I can’t live like this.’” X-rays showed an inconclusive shadow around her heart, and a CT scan suggested lymphoma. After two inconclusive biopsies, she went to Brisbane to have sample tissues surgically removed from the tumour wrapped around her oesophagus and the blood vessels exiting her heart. “I didn’t know much about lymphoma before I was diagnosed,” Vesna says. “At first people were saying that because of 86
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my age it’d be Hodgkin’s [Hodgkin’s lymphoma – a type of cancer originating from white blood cells] and you’ll be fine because it’s very treatable.” Unfortunately, it turned out to be the much more fatal nonHodgkin’s lymphoma. “That was the first time I thought, ‘What if I don’t make it? I can’t afford to die – I’ve got two young kids’. My biggest concern was how I could get the treatment and still have everything else looked after.” The fact is that for many women, cancer gets in the way of life. Vesna is a typical member of cancer’s “orphan generation” – young adults left behind in the age of research and increasing survival rates. While survival rates for kids and older adults have improved, in young adults aged 15 to 39 they have remained much the same – only improving by one per cent in 30 years, whereas for children and the elderly, rates have improved by an average of 30 per cent over 30 years. The
Cancer stats
The 10 most common cancers in Australian women aged 25-39 from 1982 to 2005*
Breast 14,879 Skin melanoma 14,539 Cervical 6437 Thyroid 4202 Colorectal 2208 Lymphatic (non-Hodgkin’s) 1657 Brain 1320 Leukemias 1234 Lymphatic (Hodgkin’s) 1182 Lung and bronchus 660
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Australian Bureau of Statistics rates cancer as the leading cause of death in people aged 25 to 44. One reason younger adults are getting left behind is because of their low participation in clinical trials. In the US, the Livestrong Young Adult Alliance (a research and support program for young people with cancer) has identified that only one to two per cent of twentysomethings participate in trials, compared with 50 per cent of kids. “Data suggests the relationship between survival and clinical trials is very tight,” says Dr David Thomas, director of onTrac@ PeterMac Victorian Adolescent & Young Adult Cancer Service. “If that’s true, then the relatively lower rates of participation by young people over the age of 15 is perhaps one of the reasons why they’re dying at a higher rate than children with the same cancer.” Another reason is that too often young adults and doctors ignore signs that would scream “cancer” in someone older. By the time these are identified, the cancer is often more advanced than for diagnoses in older adults, who are regularly screened for cancer or know to keep a look out for signs highlighted in campaigns. Researchers are trying to close this gap by studying the characteristics of cancers that are most common in young adults, and are identifying where gaps are in clinical trials for young people in order to increase participation rates. The good news: if you’re a young
Occupation: Masseuse and healer (previously worked as a travel consultant) Lives: Sunshine Coast, Qld Type of cancer: Stage III breast cancer Age diagnosed: 30 Age now: 32
* Source: Austr alian Institute of Health and Welfare figures. Rates are based on new cases from 1982 to 2005.
Peita Harvey
Many of us lead active lives – and it’s easy to blame fatigue or odd aches and pains on long work hours or sleep disturbed by crying kids. Take Bree Amer, the former Big Brother contestant, who lived with a cancerous thyroid tumour for three, possibly four years before it was diagnosed. Bree was 24 and had just landed a gig co-hosting the Big Brother Friday Night Live shows when a doctor in Wollongong spent more than $450 on trying to get through to her at the TV station because he’d spotted a nasty lump in her neck. Eventually the doctor passed on a message urging Bree to get her thyroid checked. “I didn’t even know what a thyroid was,” says Bree. Prior to this Bree had been tired a lot, but just put it down to “getting lazy or old”. Six months earlier, she’d seen two other doctors, complaining of shortness of breath. One diagnosed her with anxiety, the other with asthma. “Looking back, I can’t believe neither of them checked my throat,” she says. It turns out her largest tumour – there were five in total – was pushing on her windpipe. Bree’s entire thyroid was removed. Thyroid cancer is rarely fatal (survival rate is about 95 per cent), but the treatment is usually extreme – it can include neck surgery, hormone treatment and radioactive iodine therapy. Thyroid cancer can also have more serious long-term effects than some other cancers, such as depression and metabolic issues. “I was told there was a 15 to 20 per cent chance that my vocal cords would be permanently damaged and I wouldn’t be able to speak. I thought, There goes my career,” says Bree. In NSW, cases of women with thyroid cancer have increased 84 per cent in the last decade. Studies have shown a link between thyroid cancer and iodine deficiency; some experts have pointed to the increased use of gourmet salts instead of iodised table salt.
Know your options
A week before she turned 31, Peita Harvey found a lump on her pec
muscle. It was quite tender, but not sore. Her doctor referred her to a breast clinic where a mammogram and ultrasound showed a suspicious calcification. A core biopsy confirmed the worst – she had grade three cancer, a 35mm tumour that had been growing for up to 18 months. “I’m a very ‘natural’ person,” Peita says. “I’d go to a naturopath or an iridologist before I’d go to a doctor. I guess you could say I was a little anti-doctors initially.” She consulted a surgeon and didn’t like what he suggested, so she saw two more. “They all wanted to cut off my boob next week, but I was still in shock. I felt very disempowered and I wanted to take time alone to deal with it and explore other avenues.” She took leave from her job and left Sydney for the Sunshine Coast where she had family and access to
Bree Amer Occupation: TV and radio presenter Home: Sydney, NSW Type of cancer: Papillary thyroid cancer Age diagnosed: 24 Age now: 27
a lot of natural therapists, preferring to try alternative approaches to beating her cancer. Among other supplementations, she got highdose vitamin C infusions, which are claimed to shrink tumours and boost immunity, as well as emotional and spiritual therapy. “With a more relaxed and healthier life, I felt I was capable of getting through it in a more positive way,” Peita says. She meditated four times a day, danced, sang, painted, walked on the beach and juggled. “You can’t think of anything else when you’re juggling!” Peita didn’t completely turn her back on doctors. She returned to Sydney five weeks after diagnosis and an ultrasound revealed that her tumour had shrunk 9mm. Five months after diagnosis she decided she just wanted the tumour gone.
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“I saw a female surgeon who gave me all the options,” says Peita. “I had a lumpectomy. I surrendered and had a course of radium to make sure there were no cancerous cells left in the breast tissue.”Less than a year after surgery, Peita says she feels healthier than ever. Orthodox medicine still has many questions about cancer, and Dr Thomas doesn’t rule out combining medical treatment with alternative treatments. “It’s just important that there is good communication on all sides,” he says. “But there are some circumstances where alternative therapies can interact with treatment, even to the extent of causing lifethreatening complications.” While a recent Queensland University of Technology study found that exercise can help breast cancer patients cope with diagnosis and recovery, Dr Thomas questions the blame that is often put on stress. “Stress and quality of life is an important aspect of any stage of treatment; it’s harder to say whether it makes a difference to cure rates, and there’s no strong data to support its effect on incidence, either,” he says.
Know you’re different
For women in their 20s and 30s, cancer complicates things that would be less of an issue for children or older adults – dating, body image, career and having kids. Natalie Cincotta was 23 and had recently started a new job when she was diagnosed with Hodgkin’s lymphoma. She faced four cycles of chemotherapy followed by a month of radiation therapy. “I was worried that even if I came through OK I might lose one of the things I’d always dreamt of – being a mum,” Natalie says. She saw a fertility specialist, but was not considered high risk enough to freeze her eggs. Still, Dr Thomas warns that if you have radiation or chemotherapy at 35, you have a reasonably high chance of going into menopause in the next five years. For Vesna, menopause came immediately. In a 20-yearold, treatments may not bring on menopause straight away, but it may decrease their fertile years and bring on menopause in the mid-30s. Such pressure had an impact on Natalie’s relationship of one year. “Cancer either brings you closer to
Vesna Sugden Occupation: IT consultant, mother of two Lives: Bonogin, Qld Type of cancer: Large cell aggressive non-Hodgkin’s lymphoma Age diagnosed: 35 Age now: 37
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someone or tears you apart,” she says. “For me, it pretty much just highlighted a lot of the issues that we already had, such as his inability to empathise. I thought, if he can’t support me now, what hope have we got for the future if we have kids?” While Natalie was ridding her body of cancer, the disease was taking over her confidence. First she was self-conscious about going out and seeing people while her hair was falling out, then she found it difficult to face returning to her job. “I felt too uncomfortable going back and facing questions. I quit, and at my next job interview, I was apprehensive about mentioning my cancer treatment. You think people see cancer victims as brave and strong, but in the workplace I worry that they see me more as a liability – ‘Forget it, cancer girl will always be having sick days.’” Natalie faced similar dilemmas with dating. “I didn’t want to meet someone and have them freak out when I told them, so I jumped from one relationship to the next with guys who already knew my story. My rush to settle down and have kids pushed most of them away – plus, I didn’t give them long to prove themselves.” Natalie felt she needed to see a counsellor who was trained in postcancer issues, so towards the end of her treatment she took advantage of the free counselling available through Ontrac@PeterMac. “That was probably the best thing I did for myself,” she says. “They advised me to see a relationship counsellor too, and each one helped me in different ways.”
Get support
Cancer can often be an alienating experience. For Bree, radioactive iodine treatment meant she was shut up in a hospital room on her own for five days with food passed through the door. “Even after I went home I wasn’t allowed to sit on the couch next to anyone for two weeks.” Vesna marked her 10th wedding anniversary with high-dose chemo and a stem cell transplant. “My sister saved my life,” Vesna says. “When I was diagnosed my biggest concern was how to look after my family while I was treated. My sister came out from Montenegro and looked after the kids, the dogs, everything. I didn’t have to do anything apart from recover.” Close
[think about it]
Ask your GP about the cervical cancer vaccine Gardasil, which is now recommended for all women over, as well as under, age 26.
support also let Vesna use the little energy she had to make her cancer less distressing for her two boys. “My son Nik used to really like my long hair, so when I lost it all it was quite a shock to him, but he cheered up when I let him decorate and write on my bald head,” Vesna says. “Also, I had a risk of thrombosis, so I was injecting myself daily with Clexane, a blood thinner. That was something we did together, which was quite exciting for a five-and-a-half-year-old.” Cancer care centres can resemble nursing homes, so if you feel like the only one with a busy social life or a preschooler, you may have to hunt out someone to compare experiences with. “The chemo ward was a pretty sterile environment anyway, but the vast age difference made it worse – apart from one 17-year-old boy they were all over 60,” Natalie says. “It’s also important to find someone who’s got your type of cancer. I went to a Look Good, Feel Better session [a community service program to help women undergoing cancer treatment manage the appearance-related side effects of chemo and radiotherapy] at Peter MacCallum, and the next youngest person was 30. And all the women bar one or two had breast cancer – I felt guilty next to all these women who’d had a mastectomy.” Natalie has since set up the Australian Hodgkin’s Lymphoma Network, which puts Hodgkin’s survivors, patients and their carers in touch with each other. “It’s normal for people to want to find others who
Start talking
are going through the same thing and ask questions like, ‘Is how I’m feeling normal? Am I getting the best treatment?’” says Natalie. You may also like to consider medical care from someone experienced with your age group. “One of the major questions we’re trying to address is whether we’re under-treating young adults,” Dr Thomas says. “There’s data suggesting some cancer types may be more aggressive in younger people. A less appreciated issue is that cancer in the young is usually a good clue that there is some sort of inherited cancer predisposition in the background. That can have implications for the treatment and certainly your chances of getting a second cancer.” The key is to know that you’re not alone. There’s no doubt that cancer changes lives, but often it can be in a positive way. Peita has moved permanently to the Sunshine Coast and is loving working as a masseuse. Vesna and her family spent two years having wonderful adventures with her sister before she returned to Montenegro. Bree now acts as an ambassador for the Australian Thyroid Foundation and Gold Bow Day to raise awareness of thyroid health. And Natalie is studying to be a primary school teacher. “The whole issue of fertility made me decide that if I can’t have kids myself, then I want to surround myself with them,” Natalie says. “It’s a profession where you make a real difference to people – cancer makes you question what your life really counts for.”
Five sites where cancer sufferers can connect with people who understand
bcna.org.au
Breast Cancer Network Australia’s über-pink site has all the facts on the most common female cancer. Find info on everything from fertility to work issues and read intimate and personal accounts of breast cancer. There are also useful guides to find member support groups in your local area.
thewarwickfoundation.org.au
Recognising that young adults with cancer face unique issues, this site has news and info for sufferers aged 18 to 40. Provides detailed stories from young survivors; the “cancer etiquette for family and friends” guide is great.
i2y.com
Cancer patients need a laugh too. I’m Too Young For This! is a hip American site that pokes the funny stick at the big C while also providing resources and opening the door to social networks with countless young adult survivors and caregivers.
Check out The Stupid Cancer Show, in which guests talk about the “crapness” of the disease.
petermac.org/ontrac
Click on the “Patients” section for specialised advice for people aged 15 to 25. It covers topics rarely discussed elsewhere, like dealing with sexuality, anxiety and panic, how to keep in the loop with friends and specific side effects of chemo.
fertilehope.org
This site was founded by Lindsay Nohr Beck, who was diagnosed with tongue cancer at 22. “The thought of being sterile was almost as devastating as my cancer diagnosis itself,” she says. The site explains the impact that various cancer treatments can have on your reproductive system and on other factors that affect fertility, such as age. It’s a US site, so not everything translates, but it’s the only one we found that deals primarily with this issue.
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Dean Thompson game shares his man’s Waiting The next week was the longest of my life. We eye view on had to wait for Colleen to have surgery, which how the big C would tell us if the cancer had spread to her nodes. We knew that if they were cancer rocked his world lymph free, she had a good chance of survival. The Colleen Thompson Occupation: Hairdresser, mother of 3 and founder of a cancer support centre Lives: Buninyong, Vic Type of cancer: Breast cancer Age diagnosed: 33 Age now: 38
uncertainty was paralysing. That week at work I froze every time the phone rang. Thankfully, the tests results showed her lymph nodes were cancer free and for the first time since diagnosis I knew we had a chance. A week later the mastectomy was performed, leaving a pink scar across the middle of Colleen’s chest. We worked to protect the children from the reality, but I knew that underneath Colleen’s appearance of coping she was struggling. She
October is national Breast Cancer Month. To donate go to nbcf.org.au
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wrestled with constant questions: what did the future hold? Would the cancer return? Then came chemo. The first session was the worst. Just a few hours after the first dose, Colleen started vomiting uncontrollably and I was filled with dread and helplessness. This feeling deepened two weeks later when I was watching Colleen on the front porch, tearing out clumps of her hair and crying as it blew away in the wind. I knew for certain then that I wanted to marry this woman. I proposed on Christmas day while Colleen was in the kitchen wearing her dressing gown and slippers and had one breast and no hair. To me she was never more beautiful.
Life goes on
Throughout the tough months of chemo I did my best to provide an atmosphere of normalcy. But I often harboured private thoughts of “What if?” I wanted to confide my fears to Colleen but I was torn because I knew I had to be strong for her. I coped as many men cope with adversity: by renovating the house. The extensions were a way of ensuring the future for us. Despite Colleen’s reservations, I still desired her as my lover. Although the chemo stripped the hair on her head she still had the same vivacious manner and beaming smile. I loved this woman inside out and the loss of her hair and breast didn’t change that. It was towards the end of Colleen’s chemo treatments that the miracle occurred. She had been feeling continually more tired and had visited the doctor for a vitamin boost and some advice on how to handle her lethargy. That afternoon she bounded through the door with the news that she was pregnant. Unbelievably we had conceived a child while she was on chemo! We stopped the last two treatments and, seven months later, Polly was born – a sister to Demi and our eldest daughter Tess. Colleen breastfed our daughter on one breast for six months before she had the second mastectomy and six weeks later, a hysterectomy. Her mum had passed away from breast and secondary ovarian cancer, and this gave her the best possible chance of staying cancer-free. Eighteen months after Polly was born we were married in an emotional ceremony that cemented the end of our harrowing times and started our new chapter. Through cancer we uncovered a new-found tenderness in our relationship. We pay attention; we appreciate each other more deeply. The knowledge that life and love are so fragile has heightened our appreciation of each day we share. WH In October 2004 Colleen Thompson opened the Ballarat Cancer Support Centre, a drop-in centre for survivors and friends of people touched by the disease. This year she was awarded the Ballarat Citizen of the Year Award for her work.
As told to Vanessa Waters. photogr aphy: photolibr ary.
My wife’s breast cancer
It was a cold, wet day in spring 2004 and Colleen and I were sitting in the doctor’s surgery anxiously awaiting the results of her ultrasound and mammogram. A few days earlier she was breastfeeding our nine-month-old baby Demi when she found the lump. We thought it might be mastitis, but now we were in front of a doctor who was saying, “It’s breast cancer.” I was devastated. Colleen was 33 and healthy. How was this possible? The doctor talked on, but I didn’t hear him. What would happen to us? How would I look after the kids? I was terrified of losing this bright, happy and terrific woman. The following night, we held each other and confided our deepest fears. In those moments of tenderness we stripped back emotionally and were drawn together in our rawness.