“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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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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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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Premature menopause, fertility and parenting issues, sexuality and body image difficulties, career disruption, and high levels of psychosocial stress are some of the factors that affect women under the age of 40 in an age specific way.

Additionally, pre-menopausal women are more likely than older women to be diagnosed with triple negative breast cancer, which tends to grow faster, with fewer effective treatment options. It’s also more likely to recur in subsequent years.

“Cancer tends to be a disease of old age, so when you’re young and it’s not on your agenda, you go into a forced holding pattern,” clinical psychologist Dr Lesley Stafford told Women’s Agenda recently.

“Everybody else is building a career, or having a family, or getting married, or doing a whole range of other things, and you’re just sick.”

Dr Lesley Stafford is clinical psychologist who delivers specialist psychological care for women with breast cancer in a private practice setting. She says when a young woman is diagnosed with breast cancer, there’s often a greater burden of disease, and a greater psychological burden.

“I think anyone diagnosed with cancer immediately thinks, “Am I going to die? What about my kids? What about my family?” That’s much harder when you have young children who are very dependent on you, who you haven’t finished raising yet,” Dr Stafford explains.

“For women who are younger than 40, you can imagine many of them have got babies or primary school-aged children. Younger women also have a lot longer to worry about the cancer coming back, which is the number one reason people seek me out – for fears of recurrence.”

Fertility

Recently, Women’s Agenda spoke to Laura McCambridge, a young woman in Melbourne who was diagnosed with breast cancer at age 31. One of the most confronting conversations she was faced with after being diagnosed was the one about her fertility, and the idea that she suddenly had to think about storing eggs. Up until that point, McCambridge hadn’t made any decisions about whether she wanted to have children or not.

According to Dr Stafford, one of the most challenging issues affecting young women with a breast cancer diagnosis is what to do about their fertility if they have not yet had children or intend to have more children.

“Some cancer treatments do affect fertility. Sometimes there isn’t an opportunity to freeze eggs or do something like that before treatment starts,” she explains. “That may mean that these women can’t complete their family, or the chances of them having any children at all are affected.”

“Some treatments can also give you menopause-like symptoms and drive you into an earlier menopause.”

Sexuality, sexual functioning and body image

For younger women, going through treatment for breast cancer can have a massive impact on their sexuality, sexual functioning, and body image. And while it’s true these issues are common for people of any age, when you are younger, the experience can be more distressing.

“Those menopausal symptoms can have a big impact on sexuality and sexual functioning,” Dr Stafford says. “There are just certain things that are different when you are young. For a young person who is still dating, the changes in physical appearance can take a big toll.”

“I think it can be particularly difficult for young women in terms of their confidence and worries about attracting a partner because of feeling different, or perhaps one breast just looks a bit different now, or because there have been changes in sensation in breasts if you’ve had reconstruction scars.”

Hair loss

One of the more difficult parts of the process to come to terms with for many young women diagnosed with breast cancer is losing their hair in treatment.

“We think about hair, many of us, as a symbol of beauty, a symbol of femininity, and a symbol of womanhood,” Dr Stafford explains.

“When you lose your hair with chemotherapy, you also lose your eyebrows and your eyelashes. You don’t look at all like yourself. What it means is that you are wearing your diagnosis on the outside. It’s just a real loss of privacy. It’s a real loss of identity.”

Psychological distress

Young women tend to have less life experience than older people, so receiving a breast cancer diagnosis and going through treatment can be difficult to come to terms with. With so much of life still ahead, it can be shocking to comprehend what being unwell might mean for the future.

“You don’t have the life experience that an older person has, and you’re less likely to be living among peers who are sick,” Dr Stafford said. “Chances are, you don’t know many people with cancer. It’s true that as you get older, you have more of a sense of your own mortality, and of your contemporaries being sick.”

Younger women tend to experience higher levels of psychosocial distress following a diagnosis, and Dr Stafford says feeling listened to can go a long way. 

“Many people just need to be listened to. They need to be understood. They need to be validated. They need someone to not say to them, “Don’t worry, it’ll be fine.” Because no one knows it’s going to be fine, right?”

Associate Professor Lesley Stafford will be a panel member  at an upcoming Q&A with Breast Cancer Trials on 27 July from 5:30-7pm (AEST), on the topic of Breast Cancer in Young Women. Moderated by Author and Journalist Annabel Crabb, you can find out more about the Q&A or register to watch the online Q&A here.

The post What happens when a young woman is diagnosed with breast cancer? A psychologist explains. appeared first on Women's Agenda.

That moment was the start of a long process for McCambridge, who was soon diagnosed with breast cancer and then underwent months of treatment, including a lumpectomy, four cycles of chemotherapy, a mastectomy and hormone therapy.

McCambridge, who has now finished her active treatment and is feeling well, is only 31 years old. She wants other young women to be aware that breast cancer can strike at any age.

“What people said to me most when I told them what I was going through, was “Oh, but you’re so young!’” she says, speaking to Women’s Agenda ahead of a Q&A event she will speaking at in July with Breast Cancer Trials.

“It’s so important that we all realise anyone can get breast cancer. It can be young women, or even men. There’s no one who is immune.”

When she was diagnosed, she decided to become a participant in the Breast MRI Evaluation Study at Breast Cancer Trials. It’s a study that aims to find out if having an MRI after being diagnosed with breast cancer can help improve treatment plans and outcomes for patients.

“I could feel the lump easily, the doctors could feel the lump, but it didn’t show up on a mammogram because your tissue is a lot denser when you’re younger,” McCambridge explained.

“For me it was really important to have that MRI to be able to see what was going on, and it became an important part of my decision-making.”

McCambridge works as professional researcher at the Florey Institute of Neuroscience and Mental Health, so is very in tune with how valuable clinical trials can be. She also says it gave her a sense of purpose, to know that her participation could potentially improve outcomes for others down the track.

For McCambridge going through treatment, she says she was lucky to have a supportive partner and close friends around her, but she did face a whole range of challenges, like not being able to see her parents who live in New Zealand and contending with travel restrictions due to the pandemic.

She adds that one of the more difficult aspects of being diagnosed with breast cancer so young was the conversations and decisions she had to face regarding her fertility.

“It was weird for someone who really hadn’t thought about having children that much yet, to have to think about things like storing eggs,” she explained.

“They described it to me as an insurance policy, with the hope that once all of this is over, I could conceive naturally. Even just having those conversations is shocking and it is one of the things young women deal with when they receive a cancer diagnosis.”

She adds that losing her hair during chemotherapy treatment was also challenging.

“I’m sure it’s horrific for older women as well, but having your hair fall out when you’re 31 is pretty tough,” she said. “I didn’t think it was going to be as traumatic as it was.”

On reflection, McCambridge feels grateful to have been living in Melbourne when she first felt the lump in her breast. Not long before the pandemic started, she had been travelling in Central America for six months.

“I went to the doctor the day after I felt the lump, but if I had been backpacking in Guatemala, it scares me how different my story could have been.”

Laura McCambridge will be a panel member  at an upcoming Q&A with Breast Cancer Trials on 27 July, on the topic of Breast Cancer in Young Women. Moderated by Author and Journalist Annabel Crabb, you can find out more about the Q&A or register to watch the online Q&A here.

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Breast cancer is the most commonly diagnosed form of cancer in Australia with 1 in 7 women diagnosed in their lifetime. So how can something that has such a huge impact on people’s personal lives be talked about so little? Professor Kate White and Breast Cancer Trials are here to spark the conversation, offer solutions and dispel myths around sex, body image and breast cancer.

As a Professor of Cancer Nursing from the Cancer Nursing Research Unit at the Sydney Nursing School, Professor White has over 20 years’ experience in caring for people and their families impacted by cancer. As well as leading the development of specialist postgraduate education in cancer and palliative care, she has developed innovative models for supporting those who live in rural and remote regions of Australia.

“Health professionals are comfortable and used to talking about the side effects of chemotherapy, like nausea and vomiting to patients, but many patients do not feel comfortable discussing the other side effects of treatment and how these may impact intimate relationships,” says Professor White.

For some women, talking about sex does not come naturally or easily, much less once they are feeling the effects of chemotherapy and other cancer treatments. “Not surprisingly, when your are struggling with fatigue, you really don’t feel like having sex,” says Professor White. “Many women think that they won’t ever be able to get back to a fulfilling sex life, but that is not true, there is help out there and there are things they can do to improve things.”

As the leader of a number of studies focused on reducing the impact of cancer treatments on sexuality, body image and intimacy, Professor White is passionate about breaking down the stigma around sexual health in relation to cancer, offering solutions to sexual concerns and helping patients break down communication barriers with their intimate partners.

“For some women, they say they don’t feel feminine anymore, so I always start with them having to come up with ten things that they like about themselves. It’s about reminding them about their positives,” says Professor White.

While patients may be aware of how more physical treatments such as a mastectomy or lumpectomy may affect their body image and sensory areas, the mental and physical toll of treatments such as hormone therapy and chemotherapy on libido are discussed less.

On top of the exhaustion many experience while going through these treatments, it is also the scarring, alterations on physical function and changes in libido and vaginal dryness that may cause a significant impact upon a patient’s wellbeing . Additionally, many younger women going through these treatments can experience early menopause quite suddenly, compared to the several years that the menopausal process might naturally take.

This sudden change in a patient’s body can feel quite unexpected, especially if they are not briefed on it by their health professionals or don’t feel confident or are too embarrassed to raise their concerns. But health professionals like Professor White and the team at Breast Cancer Trials are working hard to change this

For Breast Cancer Trials, that means hosting impactful community events like their next virtual Q&A Breast Cancer Trials: Let’s Talk About Sex. Bringing together some of Australia’s leading experts, viewers can send in any questions they have for the panel about breast cancer from libido changes to menopause, fertility issues, body issues, psychological impacts and the research aiming to improve each patient’s quality of life.

As for Professor White’s research, one of her key focuses is supporting women to become more confident in their bodies again. While things may not spring back to the exact same way they were before diagnosis, things don’t have to completely change forever.

“Communication is key and we work with women to help them workshop ways to talk through things with their partners and feel comfortable discussing how they are feeling. Key for both the woman and her partner is understanding why she may feel or experience intimacy differently, and what they could do to ensure it is comfortable and satisfying for them both. Information is often the first key step, this may include topics such as lubricants, vaginal moitsurisers, sex aids and other treatment options like vaginal estrogen, which can be very impactful for some women,” says White.

Professor White suggests thinking about who in your treatment team you feel comfortable talking to and flag in advance that you would like an extra time to talk about this important issue.

“Writing down questions beforehand can also make it less embarrassing for the patient to discuss these things and they will leave the appointment with some practical advice,” she concludes.

The Breast Cancer Trials Q&A Event – Let’s Talk About Sex is free to register and takes place virtually on 30th September 2021 between 5-6.30PM AEST. The panel will be moderated by esteemed journalist Annabel Crabb and features Dr Belinda Kiely, Professor Fran Boyle, Professor Kate White and Ms Rebecca Angus. To register, visit: https://www.breastcancertrials.org.au/qa-registration

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But imagine trying to feel sexy when you’re going through treatments for breast cancer with symptoms like low libido, full body rashes, hot flashes, vaginal dryness and more, that can make it feel VERY unsexy.

We all know how important it is physically and mentally to keep up a healthy sex life for both you and your partner, so, Breast Cancer Trials, Australasia’s largest oncology research group is here to help with their free, virtual Q&A – Breast Cancer Trials: Let’s Talk About Sex – which is taking place on September 30th and hosted by journalist Annabel Crabb.

The Q&A will give people the opportunity to ask questions and hear from experts and breast cancer patients about breast cancer, sex, and body image – nothing is off limits! The session will shed light on new trials, tips and tricks on how to improve sex issues and an opportunity for people to share their concerns in a safe, expert and anonymous environment.

Professor Fran Boyle, one of the country’s leading breast cancer experts and a panel member on the upcoming Q&A said, “Breast cancer affects the parts of the body which are important for women’s arousal as well as body image. When breasts are sore or numb post-surgery, women may not want to be touched. Additionally, women’s vaginas and vulvas are estrogen sensitive and breast cancer treatment can create sudden hormone changes that can lead to a dry vagina and irritated vulva, which again doesn’t lend itself to patient’s wanting to be touched intimately.”

The Q&A will not only cover treatments, tips, and research into the physical symptoms, but delve into the emotional aspects. As Professor Boyle explains, “We know that libido starts mostly in the brain, so it is very sensitive to stress. It can be impacted by fatigue, worries about body image, sudden changes in hormone levels due to treatments and other side effects.”

But this can leave partners feeling lost and unsure on how to be close and reassuring. These changes to a couple’s intimate relationship can leave both parties feeling concerned and that their closeness is changing.

Rebecca Angus (36), a breast cancer survivor and a panelist, will be on hand to share her first-person experience and how she overcame some of the issues, including talking to her husband about her insecurities.

“I think it’s really important to normalise conversations about sex and breast cancer, both with your medical professionals but also with your partner. Having a good sex life within a relationship is so valuable for anyone with cancer.

“Sex is explored at the beginning of chemotherapy education with your medical professional. However, it mainly focuses on fertility preservation, ovarian suppression and contraception during treatment. There seems to be a gap when it comes to discussing the health benefits of engaging in sexual activities, which could be crucial for anyone struggling with their mental health.”

With 1 in 7 women being diagnosed with breast cancer in their lifetime, that’s over 20,000 women this year alone, and most of these women struggling one way or another with body image and issues with sex, that is a lot of women that are suffering with these issues and maybe unsure or ashamed to discuss them with anyone.

Breast Cancer Trials wants to ensure that all those women know that they are certainly not alone and that there are answers. All Q&A participants will be able to ask a question as part of their registration process.

The Breast Cancer Trials Q&A Event – Let’s Talk about Sex is free to register and takes place virtually on 30th September 2021 between 5-6.30pm (AEST). The panel will be moderated by Annabel Crabb and features Professor Fran Boyle, Dr Belinda Kiely, Professor Kate White and Ms Rebecca Angus. You can register for the event here and ask your questions to the experts.

The post Let’s talk about sex…and breast cancer appeared first on Women's Agenda.