“I remember a patient once said to me that her fertility and having children was never important to her. She never really even thought she’d become a mother, but having the threat of that option taken away from her was actually quite distressing,” says A/Prof Michelle Peate, the Program Leader for the Psychosocial Health and Wellbeing Research (emPoWeR) Unit, University of Melbourne. 

Around 4000 women in Australia and 440 women in New Zealand are diagnosed with breast cancer each year who are under the age of 45. Some treatments for breast cancer, such as chemotherapy and hormone therapy, may induce premature menopause and can reduce a woman’s chance of having children in the future.

While treatments can affect each person differently, it’s important to discuss fertility options with a breast cancer or fertility specialist as soon as possible. 

Dr Peate says that once breast cancer treatment begins, there can be irreversible damage to fertility, so “it’s really important to have those discussions early and give people all the options so they can make an informed choice.”

“My perspective is a lot about giving everyone the information they need to make the right choice for themselves, which may be to preserve and freeze embryos or eggs, or it may be about making sure they all know that there’s a risk and know that there are options available to them,” she says.  

Whether or not you’ve had children, are single or in a relationship or haven’t thought much about family planning, Dr Peate recommends talking to your doctors about your fertility options. 

“And if the doctor is not able to provide that information, find another doctor who will,” she says. “Just make sure you have an informed decision.”

Values-driven options

One resource that might be useful for breast cancer patients is a ‘decision aid’, such as booklets or websites that contain information to help inform on fertility preservation options and the impact of cancer on fertility. 

An advocate for value-driven decisions, Dr Peate was one of the first people in the world to incorporate this aspect into a fertility decision aid.

“What’s the right thing to do really comes down to what’s important to the individual’s values,” she says. “So our decision aid always has at the end this thing called a ‘values clarification exercise’.”

Some examples of values-driven options that a fertility decision aid might give include whether it’s important for the patient that their children are biologically related to them. If so, then Dr Peate says looking into fertility preservation options may be right for that patient, to preserve that genetic link. Whereas, if adoption appeals to the patient, then it might be less important to consider those fertility preservation options. 

Through her research, Dr Peate says she and her team proved that decision aids with values-driven options “resulted in improved decision outcomes.”

“Women were more satisfied with their decision,” she says. “They did have less regret, as they were making choices consistent with their values.” 

POEMS Trial

Research into fertility options for breast cancer patients has been quickly evolving. One innovative, new treatment option for young women with breast cancer has emerged from the POEMS clinical trial, to better preserve fertility during chemotherapy. 

POEMS, which stands for Prevention of Early Menopause Study, was conducted in Australia and New Zealand by Breast Cancer Trials and globally by the SouthWest Oncology Group (USA).  

One of Australia’s most prominent research-orientated cancer surgeons, Professor Christobel Saunders says she’s excited about the POEMS trials results as it showed “it was safe to interrupt hormone therapy after about 18 months to try to become pregnant.”

“This is very important for women with ER positive breast cancer who may be looking at 10 years of treatment and very diminished fertility at the end of this,” says Professor Saunders. 

“This trial looked at how Zoladex may protect ovaries during chemo. Thanks to the trial and the women who participated, this is now standard of care and has allowed many women to maintain their ovarian function after chemo.”

Clinical trials such as POEMS can offer the best possible treatment and care to patients, says Professor Saunders, who encourages women with breast cancer to consider joining one to further their knowledge and help the next generation of patients. 

“We know those in trials–and even those managed in centres that run trials– have better outcomes,” she says.

Join Breast Cancer Trials’ next free and online Q&A, happening Tuesday 20 February from 5-6:30pm (AEDT). The session will be moderated by author and journalist Annabel Crabb on the topic of breast cancer and fertility. To register click here.

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“For the 50 per cent of patients who are diagnosed with breast cancer as a result of symptoms or from a doctor finding an abnormality, a lump is by far the most common finding,” says Dr Nick Zdenkowski, Medical Adviser at Breast Cancer Trials – Australia’s breast cancer clinical trials research group.  

“The challenge, of course, is that most lumps are not cancer, and many cancers do not present as a lump. This is where the nuances are important.”

If symptoms do present, people should seek medical advice but it’s important not to panic as nine out of ten breast changes aren’t due to cancer. 

There are some clues, however, that can help identify when a lump is more suspicious for a diagnosis of cancer. Dr Zdenkowski says to look out for lumps that are new or progressively getting worse, lumps that don’t resolve along the menstrual cycle, those that pull at the skin or are fixed to the chest wall, those that associate with swelling in the skin or under the armpit or lumps that associate with any other unusual symptoms like nipple discharge or pain. 

Nevertheless, many patients– over half of those diagnosed with breast cancer– do not present, which is why routine mammographic breast screening is so important, says Dr Zdenkowski. 

“Screen-detected cancers are typically detected at an earlier stage when the prognosis is better and cure is more likely,” he says.

This was the case for Diane Barker, who underwent routine breast cancer screening before she was diagnosed with triple negative breast cancer. She had noticed a bit of swelling in her right breast but didn’t present with any other unusual symptoms. Thanks to doctors finding the cancer in her testing results, Diane was able to begin her treatment urgently.

“I didn’t know how far it had spread and the pathology was showing that it was an extremely fast growing cancer,” said Diane. “It had a 90 per cent reproduction rate so it was really crazy the speed at which it was spreading.”

“The PET scan results showed that it had spread to my lymph nodes which was a worry but it hasn’t spread beyond the lymph nodes,” she said, noting that if it had spread to any other organ, she probably wouldn’t have survived. 

BreastScreen Australia recommends women aged 50-74 without breast cancer symptoms should get a screening mammogram every two years. In New Zealand this test is free for women aged between 45 and 69 years. 

Dr Zdenkowski has seen patients as well who’ve received prompt diagnosis and treatment because they went to see their general practitioner for assessment straight away after noticing an unusual symptom or lump.

“One who found their cancer and was able to avoid having chemotherapy because it was found so early,” says Dr Zdenkowski. 

“This is a good outcome, to be able to avoid the short and long term side effects of chemotherapy, which is generally used for specific subtypes of breast cancer, and those that are diagnosed at a later stage (larger cancers, or cancer that has spread to the lymph nodes).”

When checking for signs of breast cancer, it’s important to note that breast shape and size can be affected by other factors as well, including menstrual cycle, pregnancy, weight and age. 

For men, the most common symptom of breast cancer is a painless lump in the breast, often behind the nipple. 

“Our advice these days is to know your breasts, and how they change from day to day and week to week, throughout the menstrual cycle and after menopause,” says Dr Zdenkowski. “Changes that seem unusual are then more likely to be noticed.”

“Don’t be afraid to go and see your doctor about these changes. Often a scan such as a mammogram or ultrasound is all that is needed to provide reassurance that there is no evidence of cancer.”

It’s Breast Cancer Awareness Month, and the latest free and online Q&A event from Breast Cancer Trials will be on the topic of triple negative breast cancer. Moderated by Author and Journalist Annabel Crabb, join leading breast cancer researchers and women with a history of triple negative breast cancer to discuss the latest in research, clinical trials and treatments.

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It was at her next appointment, when the radiologist entered her room, that Diane says she first felt that something was amiss.

“Normally it was just the cinematographer who was doing the scan [but this time] she went out and got the radiologist and she said ‘oh, you know, I think we probably need to come back for a biopsy’,” Diane says.

“That’s when I started to feel a bit uneasy about it.”

Diane’s second indication that something was wrong came when she tried to delay her biopsy appointment due to work commitments but the radiologist wanted to fast track it.

“That’s when I started to feel really worried because I thought she’d actually seen something there that might be of concern.”

Following more tests, Diane was diagnosed with triple negative breast cancer, and although she’d been “sort of preparing” herself for the news, she says “nothing really prepares you for that”.

“The PET scan results showed that it had spread to my lymph nodes which was a worry but it hadn’t spread beyond the lymph nodes, meaning it hadn’t metastasized to another organ,” she says. “Which is good because if it had metastasized to any other organ, I wouldn’t be speaking to you now.”

Compared to other types of breast cancer, triple negative breast cancer is more aggressive and has a greater propensity to develop into a metastatic stage, with poorer clinical outcomes as shown by higher relapse rates and lower survival rates. 

It accounts for 15 per cent of all breast cancers, and doesn’t contain the most common types of receptors known to make most breast cancers grow–oestrogen receptor (ER), progesterone receptor (PR) and HER2 (human epidermal growth factor receptor 2).

While a new diagnosis of triple negative breast cancer is undoubtedly a frightening prospect, medical oncologist and translational researcher Stephen Luen assures patients that outcomes are continuing to improve as new research developments emerge. 

“In the current medical context, it is important to understand that triple negative breast cancer is the breast cancer subtype with the greatest sensitivity to chemotherapy, is frequently recognised by the patient’s immune system opening up new treatment options to re-ignite the immune system, and has recently received new approvals in Australia for new drugs with new drug targets,” he says. 

“Although treatment for triple negative breast cancer remains intensive and tough for patients, we are now curing the majority of newly diagnosed patients.”

Despite her initial fear, this was the case for Diane, who successfully finished her active treatment last March and says she’s been staying positive since then and receiving regular checkups.

When Karen Alexander, another patient, first received her triple negative breast cancer diagnosis, she tried to quell her worry by staying away from google and only looking at websites that her oncologist had referred her towards.

“It wasn’t until sometime after I’d finished my treatment, I was on one of the ‘approved websites’ looking for information on how long some of the side effects of chemo would last and stumbled on a discussion thread – which very quickly had me convinced that the cancer was going to come back and I only had another 5 years to live,” says Karen.

Concerned over what she’d seen, Karen reached out to her oncologist who reassured her that while not everyone has good outcomes, that wasn’t the case for Karen’s personal situation.

Luckily Karen says her partner, Rowan, offered the kind of positive support that helped her lean towards hope throughout her diagnosis.

And in supporting anyone else with triple negative breast cancer, she recommends steering clear of assumptions.

“Listen to them,” she says. “They’ll generally let you know what they need– whether it is a laugh or a cuddle– but do remember that what they are dealing with can be overwhelming and sometimes frightening, so have some tissues handy – you might need them for yourself.”

It’s Breast Cancer Awareness Month, and the latest free and online Q&A event from Breast Cancer Trials will be on the topic of triple negative breast cancer. Moderated by Author and Journalist Annabel Crabb, join leading breast cancer researchers and women with a history of triple negative breast cancer to discuss the latest in research, clinical trials and treatments.

The post Feeling scared after a triple negative breast cancer diagnosis? Seeking medical advice can ease your mind appeared first on Women's Agenda.

Speaking to Wall Street Journal in an interview published this week, the 58-year-old Canadian opened up about her first breast cancer diagnosis in 2018 — for which she underwent a double mastectomy, and her second, which was discovered during her annual mammogram last year. 

She has gone through chemotherapy and radiotherapy since last July’s discovery to treat the lump that was found on her chest. Evangelista explained that her prognosis is “good but not great.”

“Once it’s come back, there’s a chance. I know I have one foot in the grave, but I’m totally in celebration mode,” she said of the second diagnosis, which was revealed to be cancer of the pectoral muscle.

The mother of one reportedly told her doctors she didn’t want the procedure to “look pretty.”

“I want you to excavate,” she recounts telling her doctors. “I want to see a hole in my chest when you’re done. Do you understand me? I’m not dying from this.”

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In January this year, Evangelista’s friend, fellow supermodel Tatjana Patitz died at age 56 of metastatic breast cancer.

Evangelista revealed that she was intentional about keeping her struggles private while she was going through treatment. 

“I thought to myself, I will share this one day but while I am going through it, absolutely not,” she said. “I don’t want the Daily Mail waiting outside my door like they do every time something happens. ‘Linda seen for the first time since blah blah blah.’”

According to Evangelista, she had “kept it quiet” about the diagnosis while undergoing treatment and “only a handful of people knew.” 

“The margins were not good, and due to other health factors, without hesitation, because I wanted to put everything behind me and not to have to deal with this, I opted for a bilateral mastectomy,” she added.

“Thinking I was good and set for life. Breast cancer was not going to kill me.”.

Evangelista has stayed away from the spotlight in the last few years after a “fat-freezing treatment” she underwent between 2015-16 left her “permanently disfigured.” 

In 2021, she sued Zeltiq Aestethics, the company that administered the CoolSculpting System to her. Zeltiq specializes in cryolipolysis — a process of fat removal by freezing. 

Evangelista sought $50 million from Zeltiq, claiming she suffered “severe and permanent personal injuries and disfigurement…pain and suffering, severe emotional distress and mental anguish.” Last July, she announced that she’d settled the case with the company.

In her interview with the Wall Street Journal, she reflected on the “magic potion,” saying “it just backfired on me.”

Evangelista has gradually eased back into the spotlight to promote a new documentary series “The Super Models” which is set to premiere globally on 20 September on Apple TV+.

In the series, she joins fellow 90s catwalk stars Naomi Campbell, Cindy Crawford and Christy Turlington as they reflect on their global superstar fame over three decades ago. 

This month, she appeared on the cover of Vogue with her co-stars — the occasion marked the first time all four were together in the same room as women in their 50s. 

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Coming up to two years now since her double mastectomy, Coomber looks back and remembers the many conflicting thoughts and emotions that she experienced throughout the journey. 

“Part of me was very emotional, another part said I could get through this, and yet another part said it will be what it will be,” she says. “I kept thinking about getting my affairs in order, what I had to do and who I wanted to say goodbye to, and what different people meant to me.”

While breast cancer is the most commonly diagnosed cancer for women, those from Māori, Pasifika and Indigenous Australian communities experience higher breast cancer mortality, lower breast screening rates and are under-represented in clinical trials research.

With breast cancer already being a life-altering diagnosis, it can cause even more stress for members of the Māori, Pasifika and Indigenous Australian communities to know that these medical disparities exist. 

Coomber says seeing the statistics released earlier this year from the report  30,000 Voices: Informing a Better Future for Breast Cancer in New Zealand, made her “highly concerned for Pasifika women” and “wanting to support in any way possible”.

Pasifika women are 52 per cent more likely and Wàhine Māori are 33 per cent more likely to die of breast cancer within 10 years of diagnosis, compared with Pàkehà (European ancestry) women. 

In addition, Wàhine Māori were more likely to have higher-risk HER2-positive breast cancer than European women. Pasifika women also have the highest rates of life-threatening stage 3 and 4 breast cancer and of HER2-positive cancers, as well as more fast-growing grade 3 tumours than all other ethnicities.

“Being Samoan and seeing these figures makes me enormously uneasy,” says Coomber.

“I sometimes wonder if I will even make it to 5 years, which is unnerving– however, I continue to go about life as optimistic as I can be.”

Since starting her breast cancer treatment, Coomber has learned a lot and would advise other Pasifika women to handle their diagnosis in the way that best suits them “at any given time”.

“Understand it can be a very emotional time, and this is okay,” she says. “Have really good family or friends around you. Talk, cry and laugh.”

During treatment, Coomber also kept a notebook with her to write down even the smallest of questions as she says “having knowledge is empowering”. 

“Pasifika people can be shy when asking questions, I have struck this on occasion with family members in medical situations,” she says. “Don’t be shy, we count.”

Disparities in breast cancer treatment are prevalent in Australia as well. 

Although Aboriginal women are 0.9 times as likely to be diagnosed with breast cancer, they are 1.2 times more likely to die from breast cancer than the wider population.

The five-year survival rate for Aboriginal women with breast cancer is also lower at 81 per cent compared to the general population of 92 per cent. 

And breast screening rates for Aboriginal women are lower compared to non-Indigenous Australians, at 37.3 per cent vs. 53.2 per cent.

Having worked with Māori, Pasifika and Indigenous Australian breast cancer patients, Associate Professor Andrew Redfern says he’s observed “that Aboriginal women are more likely to prioritise family over themselves and sometimes choose not to have treatment or delay treatment because of the need to care for younger generations or help their children.”

Dr Redfern is an Associate Professor of Medical Oncology at the University of Western Australia, Associate Director for Clinical Strategy at Harry Perkins Institute of Medical Research, Consultant Medical Oncologist at the Fiona Stanley Hospital, Perth, and Medical Director of Linear Clinical Research specialising in early phase human trials.

Through his research, he’s found that Indigenous women with breast cancer have a death rate about three and a half times higher than non-Indigenous women with breast cancer. 

“We’ve seen a lot of other differences [as well],” says Dr. Redfern, noting that while the Indigenous and non-Indigenous women they studied were given chemotherapy and radiation therapy at the same rate, the Indigenous population was given less intensive treatment.

Moving forwards from these findings, he says one of the things his team is doing is “looking at identifying Aboriginal women as they’re diagnosed with breast cancer and then discussing their cases with their local treatment team and their Aboriginal health care workers.”

With the research showing an urgent need for change, Dr Redfern says this work will include Indigenous representation and cultural geographical input as it aims to put patients first. 

Join Breast Cancer Trials’ next free and online Q&A, happening Wednesday 26 July. The session will be on the topic of breast cancer in the Indigenous, Māori and Pasifika communities. To register, click here.

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Without a cure, metastatic cancer types like this are a devastating diagnosis including the spread of disease to other parts of the body, but researchers are advancing with big breakthroughs to improve patients’ longevity and quality of life during treatment. 

Right here in Australia, AUNZ’s largest oncology research group, Breast Cancer Trials is making waves. Their new clinical trial, TUGETHER, is testing to see if the progression of HER2-positive metastatic breast cancer can be slowed down. It’s the first study in Australia that will combine two new medicines– Tucatinib and Pembrolizumab– to the usual treatment in the hope that the combination provides a better approach.

The first patient to join the trial is Maria Bodnar, who was diagnosed with Stage 2 HER2-positive breast cancer in 2013. For the last 10 years, she’s been undergoing treatment, including chemotherapy and radiotherapy.

Several years later when Maria was diagnosed with metastatic disease, she felt like she had two options and, ultimately, decided to stay positive– a more than resilient choice.

“Option one was to just give up and say ‘I’m dying that’s it’,” she said. “Option two was to be positive and take one day at a time and hope for the best and it’s worked for me so far.”

This hopeful outlook led her to take the advice of her oncologist Professor Sherene Loi, who is also the TUGETHER trials Study Chair.

“I was informed of TUGETHER trial by my oncologist,” said Maria. “She provided me with information and I was happy so I said ‘Yeah I’m ready. Let’s do it’ and I’m hoping it will work.”

Professor Loi says this clinical trial is the first step in helping HER2-positive metastatic breast cancer patients live a better quality life for longer. 

Around 20 per cent of all breast cancer cases are HER2-positive. It’s a faster growing breast cancer type that can affect many vital functions as it has the potential to spread to other parts of the body, including the brain. 

“So this particular trial is looking at this drug called Tucatinib. And this particular drug is really exceptional for reducing cancer in the brain,” said Professor Loi, adding that it can be hard for drugs to get past the brain’s protections.

“This drug is very, very effective at shrinking cancers in the brain, and that’s cool because not only does it shrink the cancer in the brain, but it shrinks cancer in the rest of the body. And it can do that with very few side effects.”

“If we can treat cancer spots in the brain– because as you can imagine the brain has your vital functions, you know, walking, talking, etc.– It can improve quality of life and, of course, allows women to live a lot longer.”

The TUGETHER trial is currently recruiting 50 patients from 16 institutions across Australia, and Professor Loi says it’s important to get the word out in order to see quicker results.

“We have just started, so we have the first patient [Maria] who’s been on the trial, which is exciting,” said Professor Loi. “And we hope that it will still be open for around the next 18 months, and then we should have the results shortly after that.”

“So within two and a half years if we can get the patients. So it’s really important to get patients on the study because the quicker we can get patients on the study, then the faster we know the answer.”.

Speaking to the trial’s high level of support, Maria says she feels like there’s a good continuity of care, which is something that’s important to her. 

“I feel relaxed. I feel safe. And I know I’m in good care,” she says.

Maria has a big family – a husband, two sisters, one brother, two children and four grandchildren– and says, for her, clinical trials are important “because it’s my life and I would like to be around when my granddaughters grow up, but also, the results from the trial will help people after me.”

“The more new drugs we have and the more availability for the treatment– it’s better for cancer patients. Not only breast cancer but all other cancers.”

Breast cancer patients interested in participating in the TUGETHER trial should speak with their oncologist for personal medical advice. More information on the clinical trial can be found on the Breast Cancer Trials website, here. 

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Despite this, however, many people in the LGBTQI+ community are reporting they feel invisible when it comes to their cancer care or representation in cancer research.

There’s a critical need for far-more inclusive research into breast cancer, and one recent study attempting to fill this gap has come out of the University of Western Sydney, with researchers looking into LGBTQI+ experiences of cancer and cancer care to reveal some important findings.

According to the ‘Out with Cancer’ study, cancer patients in the LGBTQI+ community are 4 times more likely to report distress, and 90 per cent of the people surveyed said they’d experienced discrimination in their general lives which led to fear of how they would be treated by health professionals.

“There’s growing acknowledgement that LGBTQI+ people are invisible in cancer research and cancer care. And there have been a lot of calls for increasing attention to our population, but until recently, there’s been very little research in this area and it’s been mostly very small scale or had a very narrow focus”, said the study’s lead investigator, Professor Jane Ussher, while speaking at Breast Cancer Trial’s latest Q&A webinar.

Professor Ussher said that in the study, they looked across genders, ages and cancer types, but breast cancer was their biggest participant group.

“We had 650 LGBTQI+ people and their carers. We also looked at health care professional experiences, and we did an audit of all the online cancer information resources in Australia and also all the LGBTQI+ resources that exist internationally,” said Professor Ussher.

“We found that 40 per cent of participants reported high or very high distress and that compares to about 7-10 per cent in the general population. So,this is a really vulnerable population psychologically.”

Professor Ussher said that this high level of distress was most reported in trans people, younger people and those who live in rural areas. And, sadly, it seems the participants’ concerns weren’t completely unfounded as she says the study came across “a lot of accounts of hostility on the part of homophobic or transphobic clinicians.”

Adding to why these findings are even more alarming, Professor Ussher says “LGBTQI+ people have higher rates of cancer due to lifestyle factors such as smoking and alcohol use and lower rates of pregnancy in women. There’s also lower rates of screenings, so it’s a higher risk group in terms of having cancer.”

One clinician working hard to create a safe space for breast cancer patients in the LGBTQI+ community is Dr Elizabeth Blackley, who says she never assumes her patients’ identities until they tell her, as everyone can get breast cancer.

“Most breast cancer is related to two things that none of us can actually change,” Dr. Blackley says. “The most common reason is that we’re getting older, and the second reason is that we’re women– and that includes all women because it’s related to our hormonal profile.”

“I personally always ask patients very open questions. I don’t ever assume. I ask them who’s at home, who’s on your support team, who’s in this with you. And when people walk into the room with another person, I don’t ever assume who that other person is.”

Dr. Blackley also acknowledges that even though she might not have immediate answers to all the questions thrown her way, she’s open to having her LGBTQI+ patients educate her on what’s important to them, and knows of many resources and areas of support to direct them towards.

“I treat people the same regardless [of their gender or sexual identity]. It’s about making sure they’re supported and feel comfortable in terms of discussing all aspects of their treatment.”

“It’s our job to provide a safe and open dialogue with our patients so that there’s transparency on both sides of that relationship.”

Join Breast Cancer Trials’ next free and online Q&A, happening Wednesday 26 July. The session will be on the topic of breast cancer in the Indigenous, Maori and Pasifika communities. To register, click here.  

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McCambridge had no family history and says that when her GP called to give her the news, she was at work and her initial thoughts were, “Are you joking” and “I don’t really have time for this”.

Then, when her doctor mentioned the prospect of undergoing chemotherapy, McCambridge’s mind jumped to questions of fertility.

Chemotherapy and some hormone blocking treatment for breast cancer can make it more difficult to conceive.

Before starting treatment, McCambridge chose to freeze her eggs as an insurance policy for having children some time in the future, but says “it was a crazy time to be thinking about that kind of thing because you just want to start treatment and get going”.

For young women in the thick of their careers or thinking about starting a family, breast cancer can be life-altering.

Premature menopause, fertility and sexuality issues and the impact of breast cancer on caring for young children, education and careers are all experiences that can leave young women with higher levels of distress following a breast cancer diagnosis.

It’s important to note that when the medical community refers to ‘young women’ with breast cancer, they’re talking about those who are premenopausal or 40 years and younger.

Professor of Medicine at Harvard Medical School and Vice Chair of Medical Oncology at the Dana Farber Cancer Institute, Dr. Ann Partridge says the reason this cut-off was chosen is that “historically, the women diagnosed under 40 seem to have fared the worst on average in terms of recurrence,” she says, adding that this is changing with better research.

Dr. Partridge also says that the age requirement for who is considered a ‘young woman with breast cancer’ spans into the unique issues faced by those under the age of 40, such as fertility.

Approximately 7 per cent of breast cancers diagnosed in Australia are in women in this age group, which equates to approximately 1,000 women each year. And unfortunately, the numbers seem to be rising.

Risk factors

“One of the reasons we think breast cancer in young women is going up is because we’re delaying child bearing,” says Dr. Partridge, adding that not having children is a risk factor for breast cancer.

She says this delay in having children is “for good societal reasons like going to school and starting careers, but that does seem to be a contribution to higher rates in our younger patients.”

Hormone treatment or contraceptives are another risk factor that patients may ask their medical team about, however, Associate Professor Nicolas Wilcken from the University of Sydney and Board Director at Breast Cancer Trials, says the benefits outweigh the risks.

“Oral contraceptives very slightly increase the risk,” says Dr. Wilcken. “And that is massively overwhelmed by all the good things that they do such as decreasing your risk of unwanted pregnancy, and also massively decreasing your risk of ovarian cancer.”

As for what decreases the risk of breast cancer in young women, Dr. Holly Keane, a breast surgical oncologist at the Peter MaCallum Cancer Centre and the Royal Women’s Hospital Melbourne, recommends patients exercise at moderate to high intensity at least 3 times a week, maintain a healthy weight level and avoid excessive alcohol consumption.

Symptoms and treatment side effects

“No one is too young to get breast cancer,” says Dr. Partridge, adding that it’s important for young women to check their breasts, be aware of their personal risk factors and consult with their doctor.

Some of the symptoms Dr. Partridge recommends patients look out for are any lumps or bumps, skin changes, rashes, swelling in your arms, nipple discharge and pain in the breasts, even though this is more rare.

Treatment side effects in young women with breast cancer can include menopausal issues, decreased fertility, weight gain, changes in libido and hair loss. Young women might also need to undergo a mastectomy.

Clinical Psychologist Associate Professor Lesley Stafford says these kinds of side effects can be unpleasant for anyone but that they can be “particularly unpleasant for a person who’s in the prime of their youth, establishing relationships”.

Fear of recurrence

One of the most undermet needs of breast cancer in young women is support for the fear of recurrence, says Stafford.

She reminds patients that it’s quite normal to have this fear but that it’s important to try to stop yourself from catastrophising. Being mindful, unplugging from social media and seeking support are all helpful things to do.

Having finished her breast cancer treatment, McCambridge says “I feel like I’m definitely on the other side of it, but there’s always that fear of recurrence”.

It’s a mentality that she says has been especially hard to navigate over the past year but that she’s working to improve. Having a supportive partner, family and being able to exercise more after treatment are all things that she’s grateful to be able to lean on.

“It sounds so cliche but just take each day as it comes,” McCambridge says to any young woman having to experience breast cancer. “Focus on what you’re doing at the moment because it’s hard and you need a focused mentality.”

To watch the entire Q&A on this topic moderated by Author and Journalist Annabel Crabb, and to sign up to watch future Q&A’s, visit the Breast Cancer Trials website at: www.breastcancertrials.org.au/qa-events/

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Breast cancer is one of the most common types of cancer worldwide, with around 2.3 million women diagnosed with the disease every year. In the UK alone, it is estimated that one in seven women will develop breast cancer at some point in their lifetime.

The biggest determinants for developing breast cancer are age and being female. But other lifestyle factors, such as weight, how much you drink, whether or not you exercise, and hormone levels, can also play a smaller part in elevating your risk.

It has also been known for many years now that women who are using or have recently used the combined oral contraceptive pill for more than five years have a 25% greater risk of developing breast cancer compared to their risk if they hadn’t taken the pill. But despite this small increase in risk, only about 1% of all breast cancers in the UK are linked to the use of oral contraception.

Until now, it was thought that only the combined hormonal pill carried a greater risk of breast cancer. But a recent study suggests that the progestogen-only pill (also known as the mini pill) and other forms of hormonal contraception also carry the same increase in breast cancer risk as the combined pill.

The authors of the study looked at data from the GP records of more than 27,000 women in the UK, and combined this with data from 12 other published studies that had looked at the effect of different types of hormonal contraceptives (including the progesterone-only pill, hormonal IUDs, the implant and the injection) on breast cancer risk.

With this data, they were able to estimate whether women who had been diagnosed with breast cancer under the age of 50 were more likely to have used various forms of hormonal contraceptives, compared to women of the same age who had not been diagnosed with breast cancer. The study took into account other factors that may affect risk of breast cancer, such as body weight, alcohol intake and whether they had children.

The study found women who used progestogen-only hormonal contraceptives had between a 20-30% greater risk of developing breast cancer compared to women not using these methods. This increased risk disappeared ten years after stopping the method.

Making individual choices

To better put the study’s findings into perspective, it might help to look at the extra number of people who may develop breast cancer due to having used hormonal contraceptives, compared to the number of women who will develop breast cancer without having used birth control.

So for example, the researchers in this study estimate that in a group of 100,000 women aged 35-39, about 2,000 women will develop breast cancer over a 15-year period due to a range of factors unrelated to the use of hormonal contraception. But given that the study found birth control carries between a 20-30% greater risk of developing breast cancer, they estimate that an additional 265 women will therefore develop breast cancer over a 15-year period as a direct results of taking oral birth control.

If we were to look at women aged 50-54, we know from other research that about 280 women per 100,000 are diagnosed with breast cancer each year. If birth control increases breast cancer risk by 20-30%, it would mean an additional 70 women per 100,000 would develop breast cancer each year.

This is one of the reasons women are not advised to take the combined pill over the age of 50. The results of this latest study mean women may also want to consider the slightly increased risks of breast cancer with progestogen-only contraceptives over the age of 50. However, progestogen-only methods remain safer in terms of cardiovascular risks – such as stroke and heart attacks – in this age group.

Obviously, breast cancer is a serious disease and a leading cause of death in younger women, so anything which increases a person’s risk of breast cancer has to be considered carefully.

But one of the difficulties of deciding on whether a contraceptive method presents an acceptable risk is that many other common lifestyle behaviours also increase cancer risk. For example, it’s estimated that while 1% of breast cancers in the UK are caused by hormonal contraceptives, 5% are caused by not breastfeeding, 8% by being overweight and 8% by drinking alcohol.

This is further complicated by the fact that hormonal contraceptives can have some benefits. For example, the contraceptive injection can help ease symptoms in women who have endometriosis, while the intrauterine device is very effective in treating very heavy periods.

The combined oral pill reduces the risk of endometrial cancer by about 50% and ovarian cancer by about 40%. It’s also beneficial in helping with hot flushes and other pre-menopausal symptoms. Not to mention that contraception allows a woman to control her reproductive cycle and avoid unwanted pregnancy.

The decision about which contraceptive method to use is an extremely personal choice. The findings of this study provide important clarity on breast cancer risk, allowing women to make a more informed decision when it comes to using contraception.

Susan Walker, Reader in Contraception, Reproductive and Sexual Health, Anglia Ruskin University

This article is republished from The Conversation under a Creative Commons license. Read the original article.

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Naveena organised to have her mammogram on Christmas Eve 2014 because she wanted to get it done before the busy holiday period. However, Naveena’s GP rang that day to tell her the news she’d never saw coming: she had breast cancer.

The subsequent months saw Naveena undergoing treatments like a lumpectomy andthe removal of all the lymph nodes in her arm pit followed by six months of chemotherapy and six weeks of radiation therapy. Her treatment side effects included fatigue, nausea, hair loss, constipation, haemorrhoids and a long-term side effect of joint pain and feeling pins and needles in her limbs.

She also developed painful scar tissue running from underneath her breast, up into her arm pit and down her arm as well as menopausal symptoms like hot flashes and night sweats.

At one point, Naveena developed an infection that put her in hospital for five days. She was given a drug that caused burning in her skin and bones. While it was a painful experience, she knew the drug was needed to stimulate her bone marrow to produce white blood cells and help prevent future infections.

“Mentally, I kind of went, ‘well, this is all temporary, and it’s what I have to do to survive to beat the cancer and then I can go back to my old life’,” she shares.

Throughout her battle against cancer, Naveena listened to medical professionals with the ultimate goal of survival.

After finally finishing treatment in October of 2015, and during recovery, she worked with a pain specialist to figure out the right dosage of pain medication to be able to function in day-to-day life. She also took up swimming to build up her stamina and manage the weight gain.

Managing the long-term side effects from there was a challenging process, that she hadn’t anticipated. She had never known her own resilience as much as in the aftermath of treatment.

“It takes a lot because you’re grieving your old life”, she says. “You have to finally accept that life will never be the same again”.

It’s this unique strength and resilience that Jenny Gilchrist, a breast oncology nurse practitioner and member of the Breast Cancer Trials Scientific Advisory Committee, says she has seen in every single patient who undergoes cancer treatment.

“People are a lot more resilient than they think they are,” says Gilchrist.

“Nobody thinks they can do chemotherapy– they think, ‘How am I going to cope with this?’ And in actual fact, they all do it. They all come out the other end.”

Gilchrist looks after patients with early breast cancer and those who have metastatic breast cancer.

“Every person is different in the way their body processes drugs,” she says, but notes that the most common side effects she sees in patients are hair loss, nausea, fatigue, hormonal changes and low white cell counts that make patients more susceptible to getting infections.

When it comes to handling these treatment side effects, Gilchrist says patients should listen to the advice of medical professionals and remember that chemotherapy is given when “the benefits outweigh the risks”.

“The best thing [patients] can do is communicate with their team, and if they’re concerned about something or there’s a particular worry, they should speak to someone about it. There’s no prizes for being a martyr.”

She knows that many people expect to “feel like garbage during chemotherapy” but wants to assure patients that they don’t necessarily need to feel that way anymore.

“I’m not saying that you’re going to feel like you’re walking on clouds and completely normal, but you aren’t necessarily in bed for six months either. Chemotherapy is not like that anymore. It’s not like it’s portrayed in movies or TV shows. The supportive medications that we give are so much better now.”

Gilchrist also wants to remind patients that they have a “whole crew of people to support them” through treatment– their medical team, family and friends.

“Everybody does get through it and I think people come out a better version of themselves on the other side of a cancer diagnosis.”

“It forces people to re-evaluate what’s important in their life, not to sweat the small things and often it puts things into perspective for themselves and the people around them.”

Join Breast Cancer Trials’ next free and online Q&A, happening Thursday 23 February from 5-6:30pm (AEDT). The session will be moderated by author and journalist Annabel Crabb on the topic of the side effects of breast cancer treatment. To register click here.

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Breast cancer is the most common cancer affecting Australian women, with approximately 57 people diagnosed every day in 2022, and Professor Chenevix Trench’s groundbreaking research has elevated global understanding of why some people have a genetic risk to cancer and what determines it. 

With over 30 years of experience in cancer genetics, Professor Chenevix Trench is at the forefront of cancer research in Australia. She’s a Distinguished Scientist from The QIMR Berghofer Medical Research Institute and was even named one of the most influential health figures this year in Queensland. 

“I’ve had an interest in helping those affected by hereditary cancers my entire life,” says Professor Chenevix-Trench. 

“Over the last five years, my focus has been to understand how genetic variants act as a determining factor in developing breast cancer. Unless we know how these genomes operate in relation to cancerous cells, we won’t be able to translate the knowledge we have gained into tangible treatment options and preventative solutions for patients.” 

Now, Professor Chenevix-Trench’s name is being added to the esteemed list of the GSK ARE winners, and she’ll receive a $100,000 AUD grant that will allow her team to purchase new equipment to accelerate their work by providing in-depth and timely insights into cancer cell behaviour.

The GSK ARE is one of the most prestigious and long-standing independently-judged awards available to the Australian medical research community. It’s been awarded since 1980 with over $3 million given to supporting Australian medical research with a focus on human health.

Professor Chenevix-Trench says she is, “looking forward to joining the legacy of this award” and using her leadership role in the community to “champion and support other female scientists in Australia”. 

The 2022 GSK ARE was presented to Professor Chenevix-Trench at Research Australia’s Health and Medical Research Awards in Melbourne.

“Georgia, and her team, are driving innovative research in cancer genetics that truly has the potential to improve health outcomes for cancer patients around the world,” said Medical Director at GSK Australia, Dr Alan Paul at the awards.

Professor Chenevix-Trench and her team have identified over 240 regions of the genome that are likely to affect a person’s risk of developing breast cancer, and she says understanding the biology behind the genomes of cancer cells is key in improving patient outcomes

The genome contains all the essential information needed for a cell to function and develop, and when abnormal changes occur to the genome of cells in the body, this can trigger the development of cancer.

The genetic variants that her team discovered are a common occurrence within the general population and differ from the rare mutations previously linked to breast cancer. Women who carry these variants are at increased risk of developing breast cancer.

Professor Chenevix-Trench says her team is currently looking “at how certain genes influence the way cancerous cells or tumours are destroyed by the immune system”. 

Their next challenge is to identify which of these genes operate in human cancers since each region consists of a number of genes.

Through the award, the GSK says they’re proud to support home-grown Australian research such as Professor Chenevix-Trench’s trailblazing work. 

Previous recipients of the award are some of Australia’s most noted scientific researchers such as Professor Jamie Cooper and Professor Rinaldo Bellomo (2021), Professor Mark Febbraio (2020), Professor Brendan Crabb (2019), and Professor Kathryn North (2011).

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You often hear from those who’ve gone through life-altering, traumatic, experiences – their day started out just like any other – normal, busy, frantic, chaotic, getting ready for school or work – before being completely blindsided with something that changes them forever.

This is what happened to my sister Margaret now 47 in September 2020 – and then just six week later, to me, now 50, as we both were diagnosed with different types of breast cancer.

It’s been 24 months of some of the toughest experiences we’ve ever been through – that we wouldn’t wish on anyone – but it’s also been some of the most profound.

It’s sent us on a different course, and reminded us of a mountain of life’s lessons that we can now be grateful for.

One in every seven women will experience breast cancer. If sharing our story and lessons provides hope for others going through this journey or gives anyone a prompt to get checked, we’ll be glad. We hope this resonates and maybe saves a life: 

1)  You’re never alone

Your world instantly shrinks after receiving the news of having breast cancer. Despite the sheer number of women diagnosed each year in Australia, it feels terrifyingly lonely embarking on a road you’ve never been down before – especially as both single mums.

Part of this also comes with knowing few breast cancer diagnoses are the same. Mags and I- despite being sisters- were diagnosed with different types of non-genetically linked breast cancer.

Mags was diagnosed with stage 2/borderline 3, oestrogen receptor positive (ER+), lobular cancer, which begins in the milk producing glands (lobules) of the breast, and I was diagnosed with stage 2, ER +, ductal cancer, which begins in the milk ducts of the breast.

We also presented differently. Mags’ had an obvious and sudden change in the shape of her breast she found after a shower. Mine came as an unusual, but not alarming slight discharge, with an ultrasound finding the first of two tumours under the surface – with no obvious physical lumps.

Both of us went down completely different treatment paths. Mags has had 22 chemotherapy sessions, radiation, two lumpectomies, and two hip replacements (due to an unlucky side effect of the chemotherapy). I’ve had a double mastectomy, chemotherapy, and other ongoing preventative treatments.

But despite these differences, the silver lining has been the realisation we were never alone.

The love and support we’ve had from each other – and our loved ones – taught us this is the beauty of life, and we were fortunate to have had each other every step of the way.

When Mags was first diagnosed, there was no question about “dropping everything”, including “grand plans” we had for our business.

We lived next door, so from helping her two children with their homework, school drop-offs alongside my own daughter Frankie, to keeping up the rituals of family dinners each night, we were determined to make her treatment and recovery as painless as possible.

And the same happened when I received my diagnosis – ever since the moment Mags needed to take the wheel after her chemotherapy treatment home from the Brisbane’s Mater Hospital where I had just received the shocking news I too had breast cancer.

And it’s been this constant sharing of the driver seat for each other during both our journeys.

But for women who may be going through this without their sister – know you are never alone.

We can’t recommend enough for women to enlist the support of one or two people you love and trust to be there at every appointment. To take in the tsunami of information that will come at you, wade through this and help you make decisions about your treatment path going forward.

Accept all the help that is offered, even if it feels hard to say yes, especially the offers to help cook, clean, drive and do the parts of life that becomes harder during your treatment. We were so blessed to have family, friends and our school community surround us with love and support.

And find those medical, health and mental health professionals who you really connect with.

We’ve been so grateful to discover the countless support groups – in person and online – like the Mater Chicks in Pink, and Mummy’s Wish, who’ve also kept us “thriving” during this period.

And for us, it’s also been critical to create our own community – sharing our story with others with the hope it resonates with other women.

2)  Making peace with the ‘slower’ path

Mags and I are both hard-workers and had plans to launch a business together. In fact, just before Mags received her diagnosis, we were full steam ahead with product testing for our new Lula Eye Mask – the first self-warming eye mask in Australia.

But the cancer diagnosis literally and figuratively floored us, and the momentum we had for business needed to significantly slow, and at times, come to a dead halt. 

While we’re so grateful the business gave us something else to think about other than cancer, it most importantly, gave us a broader sense of purpose to give all women the space to prioritise self-care with just 20 minutes of experiencing the warming face mask. But, as we also came to realise, we needed to do what we were preaching – prioritise “self-care” and resting.

No matter how much passion we had to launch our business and other parts of life and motherhood, to be a ‘warrior’- which is the meaning behind the name ‘Lula’ – also meant knowing when to rest. And we had no option during treatment.

Even now as we’re in a far healthier place, it’s been something we’ve taken forward in our daily lives.

We have such a great understanding of how busy we can both be with our children and medical treatments and appointments, so we don’t put time constraints and pressure on each other.

We’re determined to help women not feel guilty for taking time out for themselves. We have both been forced to slow right down and have learnt it’s actually such a gift to take time for yourself, but it should be a gift we all allow ourselves to have every single day, without guilt.

So, we take days off regularly. We lean on support we’re offered or ask for it when needed. And we hope every woman does this too. Whether you’re going through cancer or not, embrace the joy and ‘slowness’ of life and remember self-care is never selfish!

3)  Embracing ‘unpopular’ changes

We always loved a 5pm wine. It was part of our daily ritual. The kids playing together and Mags and I sharing a glass in the evening.

But a few years before either Mags or I were diagnosed, as single mums we made the decision to give up alcohol after coming across the growing body of researched links with cancer.

It hasn’t been an easy thing to give up when our ‘boozy’ Australian culture is tied so closely to what we do. We’re constantly still seeing cancer charities and organisations even encouraging alcohol-driven fundraisers.

But since knowing this, we’ve become conscious advocates around helping women understand the links – that moderate consumption can lead to up to 30-50% increased risk in breast cancer.

We know some people might worry about the challenges of giving up alcohol from a social point of view, but thankfully, that hasn’t changed for us. We can still enjoy girl’s weekends away, lunches, dinners and events without alcohol (we might even enjoy these even more now as we still feel wonderful the next day)!

And we’ve made it our mission as business owners to never promote “wine time” for mums or show alcohol in any imagery, and we hope other brands, especially cancer charities, make this change too.

Giving up alcohol, a seemingly ‘unpopular’ change, has been nothing but positive for us and a decision we are so proud to have made.

Final words

While we wish ourselves and our family and friends, didn’t have to endure us both going through breast cancer, we are so grateful for the incredible learnings we experienced because of it. 

If you’re going through this journey, we hope sharing our story resonates and gives hope.

As mothers, business owners and breast cancer survivors, these words by another breast cancer survivor really resonated with us: “You can be brave and terrified… You can be broken and be whole…You can shed tears and laugh out loud… You can be exhausted and be a warrior”

And also, just as importantly, we hope our words serve as a reminder to check yourself regularly or schedule your mammogram.

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