DEVELOPING A MODEL OF CARE FOR YOUNG WOMEN
As part of a Clinical Fellowship project with Breast Cancer Trials, Dr Elizabeth Blackley is working on a study that involves the collection of data and the development of a registry on breast cancer incidence, treatment, outcomes, and quality of life metrics in young Australian women.
How do you define a Young Women in relation to Breast Cancer?
Young women diagnosed with both early and advanced stage breast cancer, face a variety of problems unique to or accentuated by their young age. This includes career development, completing education, family planning, or parenting young children.
As part of a Clinical Fellowship project with Breast Cancer Trials, Dr Elizabeth Blackley is working on a study that involves the collection of data and the development of a registry on breast cancer incidents, treatment outcomes and quality of life metrics in young Australian women. The aim is to help form a streamlined model of care for young women and offer various support services to help them through their diagnosis.
“For the purpose of clinical trials we define young women as younger than 45 and that’s really been because in clinical trials, we need to have such a stringent inclusion and exclusion data, so we can validate the data and the findings that are in the study.”
“In practice really what we refer to when we talk about young women is pre-menopausal women. And young women have such a unique set of challenges with breast cancer because of the stage of life they’re in at the time of diagnosis, in terms of education or career development, potentially being in new relationships, having children, wanting to have a family. It’s quite a unique role for young women that really can’t be filled by another person.”
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Listen to our conversation with Clinical Fellow, Dr Elizabeth Blackley, as she discusses her research project which is focused on developing a Model of Care for Young Women.
What are the Unique Problems Faced by Young Women Diagnosed with Breast Cancer?
“So young women are often diagnosed at a stage in their life where they engage in multiple roles that can’t easily be filled by other people. So, things like parenting and motherhood, employment and career development, education. And it’s something that a lot of women struggle with balancing these things or planning for these things while undergoing treatment for breast cancer.”
“I guess from a biological perspective, there’s also a difference in young women’s breast cancers, which do tend to behave more aggressively than the same type of breast cancer in an older post-menopausal woman. They tend to be more aggressive, present at a later stage, and require more intensive treatments like chemotherapy and longer-term maintenance hormonal therapy.”
What Treatment Options are Available for Young Women?
“So, treatment for breast cancer is often intensified for younger women to combat the increased risk of their disease. This might mean they have more protracted or aggressive chemotherapy, and many years of hormonal therapy which presents higher rates of toxicity in younger women.”
“Premenopausal women with hormone receptor positive breast cancers will often require treatment with ovarian function suppression, which essentially is a treatment that induces premature menopause. So not only do women encounter the emotional symptoms of menopause, but they also run the long-term risk of premature menopause complications, things like osteoporosis and cardiovascular disease can occur.”
“In the long-term young women who are diagnosed with breast cancer can be at a higher risk of physical and psychological distress than older women and they commonly seem to lead this sort of diminished life after a breast cancer diagnosis, where they may never quite return to their pre-morbid level of function, employment or activities.”
An Overview of Dr Blackley’s Project
Developing new research ideas and supporting the next generation of researchers is at the heart of the new Clinical Fellowship Program.
The Program is aimed at early career researchers, who have a high-level interest in clinical research and qualifications in the disciplines of medical oncology, pathology, psychology and other supportive care specialties, radiation oncology, radiology or surgery.
“So, I aim to establish a young women’s breast cancer group, which would be comprised of clinicians, adversity groups such as BCNA, Breast Cancer Trials representatives, as well as patients and carers undergoing treatment for breast cancer to try to develop or identify areas of need in young women with breast cancer.”
“In addition to this, I’m hoping to design a registry-based trial to collect prospective Australian data on breast cancer incidence, treatment, cancer and quality of life outcomes in young women, and also to help perform a needs analysis to help us determine whether gaps in cancer care for young women are.”
“A diagnosis of breast cancer in a young woman is not only emotionally very challenging and demanding, but also becomes an incredibly busy and confusing time with a huge number of specialists and supportive care appointments.”
What Does a Streamlined Model of Care for Young Women Look Like?
“As a medical oncologist, an initial consultation with a young woman we will not just talk about the breast cancer diagnosis, the type of cancer, or the stage of the cancer. We’ll also have to focus on treatment options including chemotherapy, targeted therapies, and hormonal therapies. The potential plan and timing of surgery and radiotherapy and sequencing all these treatments together.”
“We have to cover the toxicities, the side effects, the duration, the course of treatment, but in addition we also have to discuss things like the fertility implications in a premenopausal woman who may not have started a family yet or have completed a family. And that will generally be a very time critical thing.”
“If a woman needs chemotherapy, they generally must undergo fertility preservation prior to starting, which will mean seeing a fertility specialist, usually having ovarian stimulation and the collection of eggs, and all of this is before we can even start treating their breast cancer.”
“In that initial consultation we also discuss genetic testing, particularly in young women because it is more unusual for them to develop breast cancer. There are more commonly genetic links for them. So, we’ll discuss the process of genetic testing and the implications to both their future care, their surgical options, they’re screening, but also to that of their children and relatives, all in that initial consultation.”
“The other things we will discuss often include employment and finances through a course of chemotherapy, which can be a major stress, arrangements for childcare and school-aged children, and risk of infection in treatment. They may need to discuss insertion of a central access device like a PORT, and things like scalp cooling for primary prevention of alopecia.”
“This is just sort of an array of things.”
“We know that women walk away retaining only a very small proportion of it. Part of what I see establishing a centralised or a standardised model of care would be about making this process more streamlined and having easier access to information for women going through this process, to understand that these are sort of the first steps and how to get through it.”
“Support groups and breast care nurses do an incredible job, but there’s just not enough to actually support these women going through this and it’s a very different entity to a post-menopausal woman.”
“The other part that we would like to include in this sort of model of care is the survivorship side of things. The longer-term outcomes of having had chemotherapy or breast cancer surgery, the outcomes in terms of fertility and pregnancy after breast cancer, the late toxicity risk and the psychological aspects like fear of recurrence are really very major aspects that impact on a young woman’s life.”
“I think having a standardised model of care will help to make sure that none of these aspects are neglected or missed and that it is something that all patients undergoing breast cancer at a young age can access.”
“There are lots of other things that come up in that initial consultation and even as the treating oncologist, that amount of information is enough to make my head spin. So, for a young woman who’s just been told she has breast cancer, the amount and complexity of information that she’s given in those initial consultations is huge.”
Dr Blackley’s Hope for the Future
“So, I guess we don’t have a lot of data in an Australian capacity. There’s a lot of data from America and Europe about younger women, and some of the supportive care needs and things, but we don’t really have an Australian experience. So, I guess the first step of creating a registry is really about being able to show the magnitude of the problem and how many young women we’re talking about.”
“We have very basic data through cancer registries and things, but this would be providing more detail on the types of cancer, the treatments that patients have had and it would also provide us with a pool of patients, to start looking at needs analysis and surveying patients to find out what we’re doing well and what we’re not doing well.”
“And from a needs analysis point of view, we might be able to identify something to implement. So, whether it be a central care coordinator or a particular model of care, to be able to implement that, to address some of these women’s concerns and fill some of these gaps is really important.
“By having this registry of women that we can use in this quality-of-life trial, we can actually follow them over time and establish whether the implementation of a standardised model of care actually improves their quality-of-life outcomes, improve their cancer outcomes, and improves their survivorship outcomes.”
“So, I think really collecting the data to show the magnitude of the problem is only the start, but it will enable us to tap into that database to design future clinical trials. I guess I also see it as something that would tie in with translational research, and there is quite a lot being done in Victoria at least with translational aspects of young women’s breast cancer, and looking at biology, and genomic sequencing.”
“And I see a registry and identifying these women as potentially being able to feed straight into translational clinical trials, by identifying the patients that we’re trying to target. I guess the dream is that I envision this project to be part of a much larger entity, where young women with breast cancer can all be linked into a centralised service to access clinical care coordination, and supportive care throughout their breast cancer journey.”
“And clinicians can access resources and supports caring for this very highly specialised group of younger patients. I’m aware that this is just a starting point, but I think it’s a really important one and I’m hugely grateful to Breast Cancer Trials for giving me this opportunity.”
“Young women’s breast cancer is sort of my area of passion, and while it can be a really difficult area of medicine, it’s also an immensely rewarding one where women come back many years after treatment, having progressed, made major life milestones, had babies, got married and been promoted at work and just really thrived after having breast cancer.”
“I think focusing on that and encouraging and supporting women to do so is a really important goal.”
To find out more about Breast Cancer Trials Clinical Fellowship Program, click here.
