Tag Archives: Cancer

Younger Women’s Wellness after Cancer Program improves quality of life for women in New Zealand

Cancer Interview Programs Research

Preliminary results from the culturally adapted Kōwhai Study in New Zealand are showing positive signs that the Younger Women’s Wellness after Cancer Program has the potential to improve the quality of life of women after cancer treatment.

We spoke to the Kōwhai Study Manager and long-time Women’s Wellness collaborator, Janine Porter-Steele, about the latest results from the study, as well as future plans for implementation across Australia, New Zealand and Hong Kong.

How are lifestyle intervention programs proving to improve the quality of life for women after a cancer diagnosis?

Younger women, under the age of 50, treated for breast cancer in Australia and New Zealand (NZ) are a large and growing population and while advances in diagnosis, treatment and management have significantly improved survival rates, the medium, long-term and late side effects reflect a significant burden to young women. Side effects include physical, psychosocial and psychosexual issues, like early menopause and associated risks, fatigue, obesity, sleep disturbances, higher incidence of diabetes, and cardiac and bone health concerns.  Social aspects might include disruption to family, relationships and work-life as well as fitting in with peers. Psychosexual side effects of treatment include sexual dysfunction, fertility and body image issues.

Studies have demonstrated that women believe they lack information and confidence in ways to not only reduce their risk of recurrence of cancer and other chronic disease but also to manage the long-term effects that cancer has on their lives.

There is also evidence that lifestyle interventions can mitigate chronic disease risk and many of the side effects associated as well as improve quality of life for this group of patients.

This is why we developed the The Women’s Wellness after Cancer Program (WWACP), which is a twelve-week Program designed to address common treatment after-effects in women after cancer. This program was subsequently adapted to focus on the different needs of younger women (Younger Women’s Wellness after Cancer (YWWACP). It has been trialled as a feasibility study in New Zealand (NZ) (The Kōwhai Study), in Australia (The Emerald Study), and in Hong- Kong. As part of the NZ study, a separate and discreet sub-study offering a culturally adapted program was undertaken with a cohort of Māori women.

Can you tell us a bit more about the Kōwhai Study, which was recently completed in New Zealand?

The Kōwhai Study recruited women aged 18- 50 years who had completed intensive treatment (surgery, chemotherapy / targeted therapies and radiotherapy) for breast cancer in the preceding 24 months.

The participants were randomised into a control (usual care) group or to an intervention group. The participants allocated to the control group received general information from their usual health care professionals during their routine clinic visits. The intervention group received a journal, fact sheets, access to a website and 3-5 consultations over the twelve-week duration of the program with an experienced cancer care nurse.

Apart from assessing the usability, acceptability and accessibility of the Kōwhai Study, improving quality of life was equally important, as our aim with the Younger Women’s Wellness after Cancer programs is to improve late and long term side effects and reduce distressing ongoing symptomology.  Secondary endpoints include comparison of waist circumference measurements from commencement to completion of the study and changes in menopausal symptoms, body image, sexual function, sleep, physical activity and nutrition.

Despite launching the Study during the Covid pandemic, we received a rapid intake of participants, which demonstrated an enormous desire for this type of lifestyle intervention in New Zealand.

What were some of the outcomes of the Study?

 While we are still collating and analysing some of the data from the Study, the Kōwhai Study is showing promising signs of improving late and long-term side effects of cancer treatment and improving quality of life for participants, from a physical, psychosocial and psychosexual perspective.

Participants are reporting reduced levels of distress, improved emotional status and a downward trend in waist circumference.

What’s next for the Younger Women’s Wellness after Cancer Program?

We have now completed feasibility studies in New Zealand (Kōwhai Study), Australia (Emerald Study) and Hong Kong (YWWACPHK), with all three studies receiving high interest and uptake from local participants and positive feedback. This proves to us that the program is feasible and accepted and that, if rolled out more widely, could be very successful and have a great influence on improving the quality of life for younger women after cancer.

We are now pooling the results from these three studies and will be looking to secure a larger partnership grant, in the near future, to conduct a larger study and roll the program out more widely.

For more information about the Kōwhai Study, click here.

For more information about the Emerald Study, click here.

For more information about the Younger Women’s Wellness after Cancer Program in Hong Kong, click here.

Tele-exercise to boost recovery for regional cancer patients

Cancer Programs Research

Women in rural and regional areas recovering from gynaecological cancer and treatment will now have access to a University of Queensland rehabilitation program through telehealth.

Professor Sandie McCarthy from UQ’s School of Nursing, Midwifery and Social Work, and co-lead of Mater Research’s Health Care Delivery and Innovation program, said additional  funding from Wesley Medical Research is expanding the ACUMEN program to help regional Queensland women access support previously unavailable to them.

“More than one third of women living with reproductive cancers in Queensland are from regional and rural areas and unfortunately, many can’t access the same post-operative support as their city peers,” Professor McCarthy said.

“The new funding from Wesley Medical Research expands the current ACUMEN program by providing this group of women with the support they need through telehealth.

“ACUMEN brings together a group of health providers to deliver key recovery tools that will enhance quality of life, and now we can do that through videoconferencing.”

Approximately 20,000 Australian women are living with treatment-induced chronic disease after their cancer diagnosis.

The project’s Chief Investigator Dr Janine Porter-Steele, from Wesley Medical Research, Wesley Choices Cancer Support and UQ’s School of Nursing, Midwifery and Social Work, said it was important to get regional and rural women involved in the program.

“Most women with reproductive cancers are insufficiently active and it comes down to the lack of support and education provided,” Dr Porter-Steele said.

“Despite the known benefits of exercise after treatment, only 30 per cent of women met physical activity guidelines.

“ACUMEN is addressing an unmet need for a large group of women who are at a heightened risk of chronic conditions including diabetes, fatigue, and psychological distress.”

Rural and regional participants will receive basic equipment, assessment tools and a Fitbit for activity tracking.

Supervised exercise sessions will be delivered via a videoconferencing platform.

The first phase of the ACUMEN program has delivered face-to-face sessions for almost 50 women in south-east Queensland over the past year.

Program participant Kerry Henry said self-confidence is replaced with fear and loss of control after a cancer diagnosis.

“The program gave me a chance to take control of my fitness, and with the support of great exercise physiologists it improved my strength and balance and I feel so much better within myself.”

Queensland women living in regional and rural areas can join the program by emailing the research team at acumen@uq.edu.au.

The University of Queensland, Wesley Medical Research and The Wesley Hospital, Mater Research and Metro North Health work together to deliver the ACUMEN program, with new funding from Wesley Medical Research enabling regional and rural women to access the program via telehealth.

This article first appeared in the UQ News.

Exploring the feasibility of a virtual wellness program for women after cancer

Cancer Interview

Since the start of the Covid-19 pandemic, workplaces and communities have been using online platforms more than ever before in order to stay socially connected despite physical distance. So how can this work in a wellness setting where support and connection is so key to success? We asked Dr Janine Porter-Steele from the Wesley Choices Cancer Support Centre and Dr Sarah Balaam from the University of Queensland about the latest EMERALD study, which is exploring the feasibility of the Younger Women’s Wellness after Cancer Program in Australian women.

What is the EMERALD Study and what are you trying to achieve with this trial? 

A team of leading Australian and New Zealand health researchers have been working together to pilot a virtual lifestyle intervention, the Younger Women’s Wellness after Cancer Program. This program aims to improve quality of life for younger women who have been diagnosed and treated for breast cancer. We aim to reduce treatment-related chronic disease risk for people taking part in the study and to determine whether this is feasible in the Australian context.

How did this Study come about? 

Partner trials of cultural-and language-adapted versions of EMERALD are currently underway in New Zealand and Hong Kong. The aim of this study is to test the feasibility of the Australian version of EMERALD in a similarly-aged, representative sample of women prior to a larger trial of the program across Australia, New Zealand and Hong Kong. Ultimately, we would like to see the wellness program embedded in clinical and community settings, making it easily accessible to those requiring post cancer treatment support.

Who can participate and how can they get involved? 

We are looking for women aged between 18 and 50 years old, who have had treatment for breast cancer in the previous 24 months, with no metastatic disease and have access to a personal computer, tablet device or smartphone.

Please visit us here to find out more.

 

Life after cancer treatment – bridging the wellness gap

Cancer Interview

With the launch of the Women’s Wellness podcast, we spoke to Professor Sandie McCarthy from the University of Queensland about the Women’s Wellness after Cancer Program; its origins, its purpose and how lifestyle interventions can improve post-treatment experiences.

Why do we need a program for Women’s Wellness after Cancer?

The catalyst for the Women’s Wellness after Cancer program happened when I was working as a chemotherapy nurse many years ago. I would provide care for women over an intensive period of time and then never see them again and would often wonder what happened to these women after their cancer treatment. One day I ran into a lady I had helped treat and she looked really unwell. I asked how she was doing and she said that while the cancer was gone, she was left with heart failure. And this was many years before we fully understood the many side effects cancer treatments have.

So from that moment on, I started researching what happened to these women and was quite devastated as a clinician as to the after effects, and long term side effects, of the treatments that I had been administering. In those days these weren’t really well recognised – they are now.

Today we also understand that if we implement certain lifestyle changes, both during and after treatment, we can often prevent those side effects from happening or moderate their effects. And this was ultimately the impetus for the development of the Women’s Wellness after Cancer Program.

What sort of lifestyle modifications can women put in place if they are undergoing cancer treatment or completed treatment?

There’s a raft of different lifestyle changes and modifications women can make after cancer treatment but what ultimately underpins success for women’s wellness is good psycho-social support. We’ve got to wrap these women in a support blanket, because essentially when they’ve left cancer treatment, they’re left to recover on their own – they are considered well. Many women don’t know what lifestyle changes or strategies to use to change their treatment outcomes and post treatment experience.

What we’re really focused on with the Women’s Wellness after Cancer Program is quality of life and function for these women, and how lifestyle modifications can enhance that. This includes things like lots of movement, minimising alcohol wherever possible, eating a really healthy diet, getting enough sleep, minimising the effects of early onset menopause that is brought on by many breast and gynecological cancer treatments and minimising psycho-social distress.

So what can women expect from the Women’s Wellness after Cancer Program?

The Women’s Wellness after Cancer Program is a 12-week, very supportive, lifestyle management intervention program, where we give a lot of clinical and psycho-social support to women. Throughout the 12-weeks we guide them through the lifestyle changes that they need to make in a very evidence-based way. So things like, what’s the best way to get your body moving, particularly when you’ve got pain or neuropathy; what’s the best diet to have – women who have undergone breast cancer treatment, for example, often come out of the treatment weighing a lot more than when they went in due to the nature of the drugs, so we support women to lose weight in the best and safest way. We also help women work through how best to manage the hot flushes and the sleeplessness that is a result of treatment-induced menopause and how to manage lymphedema, which is the swelling of limbs that can occur after some surgeries.

These are just some of the ways we support women during the 12-week program and we’ve had a great deal of success with the program. Since then, we’ve moved onto younger women with the Younger Women’s Wellness after Cancer Program because they have very specific issues around sexual function, fertility, social support and how to bring up young children in the context of this condition, for example.

What’s next for Women’s Wellness?

We’ve expanded the Younger Women’s Wellness after Cancer Program into New Zealand and Hong Kong and next year we’ll be developing a whole new program with Canteen for younger women and young men between the ages of 15 and 24. We’re developing a lifestyle intervention for them, which will be totally delivered by telehealth and designed by the participants – they’ve even designed the logos for the program.

We’ll also be moving into addressing issues like body image in our Programs, because a lot of cancer surgeries, chemotherapy and radiotherapy result in a lot of bodily alteration that can be quite difficult to deal with, from the removal of breasts, lymphedema and stomas on the outside of your stomach rather than normal bowel function, for example. So we’re considering how to support women to develop a ‘normal’ lifestyle in the context of bodily alterations that come as a result of cancer treatments.

For more information about the Women’s Wellness after Cancer Program and other wellness programs, visit www.dawncomplete.org.au 

Intimacy, Sexuality and Cancer

Cancer Personal Stories

Cancer can have an impact on just about every aspect of a person’s life but one of the more common long lasting effects of cancer, especially breast cancer, are issues relating to body image, intimacy, and sexual function. This supports the principle that these concerns need to be focused on and the opportunity created to discuss them at any stage of the treatment pathway.

There are many definitions for human sexuality and 1  how we feel about intimacy, sex, sexuality, and sexual relationships depends on a range of issues and it’s important to remember it’s not unusual to have sexual difficulties, even in times of good health and well-being. There are numerous reasons for this and often it can come down to inadequate information and education concerning sexual or reproductive health.

So why is it important to talk about sexuality and intimacy when diagnosed with cancer? It’s because this topic is very often overlooked and not discussed. This can be because it is often felt there are more important things to think about and discuss at this time, such as treatments and treatment schedules. Of course, it’s not going to be the first question someone asks their doctor but it commonly is an issue that comes to the fore at some point during or at the end of treatment. Understanding this will help you feel more confident to know when to talk more about it with someone who can help.

Living with cancer can affect a person’s sexual functioning in various ways, some of these effects may be due to the cancer itself, the treatments, or a person’s sense of self and/or their emotions at the time. Some of the sexual issues people with cancer have to deal with can be relatively minor, but sometimes they are ongoing and can be more serious and importantly, these questions change from the time of diagnosis, through treatment, and then into recovery.

As well as a cancer diagnosis, people may also have other conditions such as depression or hypertension, or they may be trying to manage menopause symptoms and along with this, their partners may be dealing with their own medical, psychological, and sexual issues. In fact, one of the best predictors of sexual concerns after a cancer diagnosis is to look at what a person’s intimate life was like before their diagnosis.

Sometimes, cancer can intensify these issues and while people may have managed different levels of desire before, cancer can complicate things and it can have an impact on both patients and their partners. People often say they experience loss of libido and interestingly, partners can too during this stressful time.

There are many solutions, and often a first step is knowing how to bring the topic up and ask for guidance. All patients should receive information about the possible side effects of the disease and treatment on sexuality and intimacy such as altered physical function and libido; problems regarding fertility; and menopause symptoms. It is, however, a difficult topic to bring up, not only for women but also for health care professionals who are also hesitant to initiate discussion and wait for the patient to voice their concerns –and consequently it often becomes an endless circle of inaction, frustration, and sadness.

It is also very important to acknowledge that these worries are valid regardless of a person’s age, whether or not they are in a relationship, the stage of their disease, and the type of cancer and surgery they are dealing with.

Here are some words you could use to help you bring the topic up.

How to bring up the topic with your health care provider:

“Is it safe to have sex / continue with our normal intimate relationship?”

“I have heard this treatment may affect my relationship with my partner.   Can you tell me what might happen?”

“My partner is worried he may hurt me if we have intercourse. Is this something I should be worried about?”

“I don’t feel attractive because of my scars and I’m worried my partner may not find me desirable any more. Can you recommend someone I can talk with about this?”

“I have developed vaginal dryness and its very painful and uncomfortable especially during intercourse – what can you suggest?”

And this may be helpful for health care professionals:

“I always ask how things are going with sexual relationships because it’s really very common to have difficulties after treatment. Is that something you would like to talk about?”

“I’m really pleased to hear the treatment side-effects are settling down. I find for most people at this stage another area of concern may be about intimacy and sexual function. Are there any issues you would like to discuss?”

If connection with a physiotherapist is available to you, their expertise can assist with advice relating to positioning and exercises to help improve pelvic floor strength. A breast care nurse or general practitioner may also be able to provide information regarding the appropriate use of gels and creams – and this is a topic we can provide more information about at another time!

Importantly, be kind to yourself and have realistic expectations.

1 W.H.O. Gender and reproductive rights: sexual health. 2002. who.int/reproductive- Health/gender/sexual_health.html. Accessed May 2007

By Janine Porter-Steele RN PhD and Leonie Young DUniv

This article first appeared in Reach to Recovery’s Bloom magazine, Issue 33 – December 2021.

Cancer, On the Horizon – latest news, Programs

Helping young people rebuild their lives after cancer

Video

A digital program to support young people adjusting to life after cancer has been awarded $1.37 million from the National Health and Medical Research Council.

Dawn collaborator Professor Sandie McCarthy, from the University of Queensland’s (UQ) School of Nursing, Midwifery and Social Work is leading the project BALANCE, which will be developed by UQ in partnership with cancer support organisation Canteen.

Professor McCarthy said the aim of the digital program was to enhance the physical and mental wellbeing of young people treated for cancer by giving them the knowledge and skills to sustain a healthy lifestyle.

“Surviving cancer does not necessarily mean younger people can return to their former state of health – they must work at it,” Professor McCarthy said.

“Young people need mental health strategies to manage the distress associated with their cancer experience.

“As the program is driven by the needs of young people, it will be designed and delivered in consultation with them.”

For more information about BALANCE, contact Professor McCarthy at s.mccarthy@uq.edu.au

Video courtesy of Channel 10 News, airing 8 October 2021

 

The BALANCE program is supported by:

UQ Balance Program Supporters

Sexuality and Relationships after Cancer

Cancer

Cancer doesn’t just affect the person diagnosed it has an impact on the people who are closest to them and it can also be very stressful for their partners. For many partners there will be a period of shock, anxiety and fear until they have adjusted to the situation. There are many tricky topics for couples to negotiate during diagnosis, through treatment, and beyond and one of those topics is sexuality and intimacy.

Being close to someone who has been diagnosed and treated for cancer can impact on all aspects of the relationship including the sexual and intimate relationship of a couple. There may be a number of concerns, including resuming sexual activity because you are afraid of hurting your partner, or concerned that initiating sex is inappropriate when they are feeling tired or unwell. You may be worried about showing shock at scar or other bodily changes due to treatments, or anxious that the chemotherapy and radiotherapy could have an effect on you. It may be that you are worried about the future and are fearful of losing your partner. All of these issues may play a role in diminished sexual intimacy.

Equally your partner may be concerned about whether you will still find her attractive, how you see her now, and if you will be comparing things to how they were before. These concerns are common, and you may be both making assumptions about how the other feels without knowing it. Communication with your partner is key and taking the time to discuss how she feels about intimacy, and when she thinks a good time might be to resume sexual activity. It is important to have an open and honest conversation that remains supportive to discuss fears and worries you both have, dispel some myths  and how you will overcome them and potentially show affection in other ways.

If you can relate to some of these points, it is really important to chat to a health professional, there are often simple strategies to help address these problems.

Below are some resources that may also be helpful:

https://www.canceraustralia.gov.au/affected-cancer/cancer-types/breast-cancer/impact-breast-cancer-sexuality-and-intimacy

https://www.petermac.org/services/support-services/cancersurvivorship/survdirect/sex-and-intimacy

https://www.cancervic.org.au/living-with-cancer/sexuality-and-intimacy/sexuality-and-intimacy-overview

https://www.macmillan.org.uk/cancer-information-and-support/impacts-of-cancer/sex-and-cancer

https://breastcancernow.org/sites/default/files/intimacy_and_sexuality_for_cancer_patients_and_their_partners.pdf

Janine Porter-Steele

Personal Stories Research Spotlight on....

Janine is The Clinical Nurse Manager of the Wesley Hospital Choices Cancer Support Centre in Brisbane.  The centre offers support, sharing and information for women, men and their families affected by a diagnosis of cancer. For many years Janine has also been actively involved with the Women’s Wellness Research Programs as manager,  delivering the programs, supporting the development of resources, and co-writing a number of the journals.

Janine undertook much of her training in the UK as a registered nurse, midwife, health visitor and family planning nurse. She completed a Bachelor of Nursing at QUT, a Masters in Nursing Leadership at ACU and she is also Breast Care and Women’s Health Nurse. Janine believes very strongly in providing interdisciplinary and comprehensive support for people affected by a diagnosis and treatment of cancer and has a particular interest in younger, midlife and older women’s health. Janine completed her PhD studies in the area of cancer and sexuality linked with the Women’s Wellness after Cancer Program (WWACP). Her particular focus is in managing menopause, sexuality, body image and depression issues for women.

Lately, Janine has been working with Auckland University and the University of Queensland to deliver a program as part of a research trial providing a Women’s Wellness Program for young women in New Zealand  (NZ) diagnosed with breast cancer. She and the Women’s Wellness team have also been recipients of a grant from Wesley Medical Research. They are using this to replicate the NZ feasibility trial with young women diagnosed with breast cancer in Australia.

In her spare time Janine likes spending time with family and friends. She enjoys walking the local bush tracks in the area. Her favourite relaxation is wandering along the beach in Northern New South Wales and kayaking the rivers down there.

Leonie Young

Cancer Personal Stories

We hear stories all the time about people diagnosed with cancer but when it becomes personal we’re never prepared.  Somehow, we seem to think we’re different and these things happen to other people.  Well I learned otherwise.  Cancer is what opened up another world and changed so much about who I thought I was.

Breast cancer was totally unexpected especially as I was only 32 years old.  I was busy enjoying being a mother to my two small daughters.  I certainly wasn’t ready to die, although like most people diagnosed with cancer, this is what I thought.

Just hearing the words You have cancer can be a devastating experience people usually remember for the rest of their lives long after they have forgotten all the details of medical treatment and tests that followed those words.

Often people are so frightened by the word “cancer” they hear nothing else.  Interestingly, hearing the diagnosis may actually be more traumatic for some, regardless of their diagnosis. That’s what having a cancer diagnosis is like – people aren’t necessarily brave or especially wonderful in what they do, they just do what they have to do to survive because there’s really no other choice.

My world soon changed to the previously unknown one of tests, surgery, and chemotherapy.  Cancer treatments aim to save lives but in doing so, they often bring life-changing side-effects.   I eventually found ways to make meaning of what I had been through  and found myself being involved with many aspects of cancer consumer advocacy, support, training, and mentoring.  I became interested in research because I believe evidence based practice is the only way we will see change and I have  been able to work along-side researchers  providing input from my personal experience as they develop their research projects.

Likewise, in my work at the Wesley Hospital Choices Cancer Support Centre (Choices) I help support people diagnosed with cancer from the perspective of someone who has “been there” and now with my work and through initiatives like the Women’s Wellness  Programs and the Younger Women’s Wellness After Cancer Program, this support is able to continue in a very rewarding way.

I’ve survived to see my daughters grow up, get married, and have children.  I have to confess I’m torn between wanting to stay young and knowing that growing older is a privilege many women still don’t have.  When I was that young woman back then I really wanted to be where I am today so I do try really hard to embrace the ever increasing grey hair and consequent extra trips to the hairdresser and wrinkles and all the other things that come with age.

Over time I learned to respect cancer, not fear it.  I discovered the power of the lived experience, the value of peer support, and about how I could make a difference.

I want breast cancer to go away so my daughters and grandchildren – and your children, grandchildren, sisters, mothers, friends can live without the fear of breast cancer.

A Drink a Day May Boost Risk for Certain Cancers

Cancer Nutrition Research

Another study showing an increased risk for cancer with drinking alcohol, even with just one or two drinks a day, has prompted renewed warnings on the health risks associated with alcohol consumption.

The new study, from an analysis of more than 150,000 healthcare professionals in the United States, found that overall, light to moderate drinking (alcohol intake of <15 g/day for women and <30 g/day for men) was associated with a small but non-significant increase in cancer risk in both women and men.

But this risk was more defined in specific populations. In men, the association was apparently driven by tobacco use. But for women, even one drink a day was associated with an increased risk for alcohol-related cancers, primarily breast cancer, and this was unrelated to smoking status.

The study was published online August 18, 2015 in the BMJ.

Some interesting nutrition news –  thank you Sarah, our dietician, for these links.