Introduction by AGCF Chair, Dianne Langmack OAM |
On behalf of the Australian Gynaecological Cancer Foundation, I welcome you to the Autumn 2024 newsletter.
I'm proud to say that AGCF is the only national cancer research organisation that focuses on funding laboratory research into all 8 gynae cancers. Of the 8, only cervical cancer has a reliable screening test. Research is the key to better screening, testing, treatments, extending lives, finding a cure. We can't reach our goals without you.
We have an enormous goal to find new ways to screen, treat and conquer the 8 gynae cancers. Gynae cancers affect women's reproductive systems. It could be your mother, sister, daughter, aunt, friend, or it could be any of us.
Our goals are within reach. All medical breakthroughs in the last 50 years have occurred through research. Breakthroughs in research are happening more frequently than ever before because we now know what causes gynae cancer and where to focus our efforts.
It's a challenging environment. In Australia today, a woman is diagnosed with gynae cancer every 1.3 hours. A woman dies from gynae cancer every 4 hours. Almost 7,000 new cases of gynae cancer are diagnosed each year. More than 51% of women with ovarian cancer will not survive 5 years. These are stark statistics for women's lives.
The AGCF team aims to award gynae cancer fellowships to young, post-doc, blue sky, brilliant minds researchers in each state and territory. We can do this with your support.
We are gathering supporters with events like Sport supports science - saving women's lives at a lunch with the Canterbury Bankstown Bulldogs RL Football Club, Qatar Airways, the NSWRL, and Harvey Norman this month. Lunch will be at Doltone House, Sydney, and we thank Paul Signorelli and family for the support they have given the AGCF team to host the event.
We also thank our amazing sponsors: HarlowlovesDaisy.com, SydneySockProject.com, and Ure Lynam; our AGCF Ambassadors, Jean Kittson AM, Danielle, Corinne Pettersen, Dr Dane Cheasley, and Amelia Barrett, who give generously of their time. With their support, and yours, we are on the way to reaching our brilliant minds research goals, conquering gynae cancer.
The Board and I are so very grateful for your continuing support for our efforts, thank you. Diane Langmack OAM Chair, AGCF Board |
|
|
Lorraine and Jann: couple bond over same cancer journey |
A couple had the same cancer surgery exactly a year apart – and say the experience brought them closer together. Lorraine Wheeler, 61, and Jann Hadfield, 62, were both diagnosed with endometrial cancer within 12 months of one another. They even had surgery on the same date one year apart – and believe the same surgeon may have been present for both operations.
The pair, who have been together for over 20 years, say the experience has bought them even closer together. Thankfully, both Lorraine and Jann have now recovered from the cancer following surgery and radiotherapy. And Lorraine says she now wants to raise awareness of the symptoms of endometrial cancer as despite being the fourth most common cancer in women, the disease is rarely discussed. Endometrial cancer – also known as uterine cancer – is most common in women who have experienced menopause and develops in the lining of the womb. Lorraine, a student services manager from Romsey, Hants., said: "One in 36 UK females will be diagnosed with endometrial or uterine cancer - you hear about the other women's cancers but endometrial isn't one that's talked about a lot.
"It has been life changing for me and for Jann. You reflect on what you want going forwards and now we just want to enjoy each day and be happy. Because we both had the same thing, we could help each other and understand, we're just so grateful we caught it in time. It's brought us even closer together, we're always looking out for each other as well - if we're not feeling great, we're there to pick each other up. I can't believe how quickly a year has gone by. I still find it hard to believe I've had cancer, it's a very difficult time when you're diagnosed – our lives were put on hold."
Jann, from Eastleigh, said: "I was shattered, I was absolutely shattered. I'm a clinician and in the science business so I know the statistics. I pushed to have the biopsy done as quickly as possible and as soon as the surgeon saw it he said there's something wrong here. Even if you know the system inside out, it's nerve-wracking when it happens to you. I was astounded because of the statistics for us to be operated on a year apart with exactly the same stage 1B endometrial cancer." Jann first had an inkling something was wrong when she began to experience post-menopausal bleeding in summer 2021. The healthcare professional visited her GP and was referred to the hospital for tests – and in October 2021 was told she had endometrial cancer. On 23 November 2021 she underwent a full hysterectomy at Chelsea and Westminster Hospital. But tragically six weeks later at a follow-up appointment she was told the cancer cells had spread through the walls of the endometrium and she would need to have brachytherapy – a type of internal radiotherapy. And after starting the treatment in January 2022 she made a full recovery.
However, in September 2022 Lorraine noticed she was also experiencing post-menopausal bleeding. And when Jann encouraged her to visit the doctor, she booked an appointment and underwent a biopsy. Not expecting anything serious, Lorraine was shocked when she received the results in October and discovered she too had endometrial cancer.
Even more surprisingly, when she received the date for her hysterectomy and realised it was the same date as her partners just one year later – 23 November 2022. And six weeks later she returned for a follow-up only to be told the cancer had spread through the endometrial wall – and that she would also need brachytherapy.
Thankfully, Lorraine has also made a full recovery and now the couple say they want to raise awareness of the common cancer. She said: "I think if I hadn't of known about endometrial cancer symptoms and signs, I probably wouldn't have gone to the doctor. "It was only because Jann had it and I had to learn a lot about this sort of cancer that when I first had symptoms, I thought I had to get it checked out. "But if I'd left it longer, it was starting to breakthrough the endometrium and was heading towards other major organs. "So had I waited a further six months to a year who knows what would have happened – she saved my life really." Jann said: "It was just quite strange how it worked out for us, I knew something was wrong.
"The doctor said if you're going to get any kind of cancer, this is the cancer you want – it has good survival rates. "[When Lorraine was diagnosed] I knew something was wrong and said she had to go and check, she didn't want to at first. "If there's blood when there shouldn't be you should go and get that checked - I'm so glad I persuaded Lorraine to.
"Thankfully they whip it all out with the hysterectomy but I had a spot on my lung that they were a little nervous about so I go for regular CT scans and I'm now coming up to two years to the date – two years is a good milestone." This story was originally published on Talker, written by Josie Adnitt. |
|
|
Cindy Lyons & Louise Diviney, two oncology social workers from NSW, shared a pic with AGCF of their recent Galentines for Gynae cancer stall, with a shout out to their colleagues and clients for supporting the fun event on Valentines Day 14/2/24.
Cindy & Louise believe it is important to shine a light on the gynae oncology group and provide as much psycho-social support as they can. Patients often reported that the focus of their post op and specialist care was on body parts - not on the person or their emotions. Enhancing the psychosocial care of gynae oncology patients is proving to aid recovery and wellbeing. |
| |
|
Professor Neville Hacker, AGCF Founder & Director OA MD, has long included and promoted psychosocial care occurring in tandem with gynae oncology treatments and post op recovery. Recent patient-centred gynae cancer research studies are proving the value of this approach.
The AGCF team congratulates Cindy and Lou on their initiative and efforts with Galentines for gynae cancer, shining a light on the need for psychosocial support to be included with all gynae oncology services. 💜🚺 |
|
|
The AGCF team joins with gynae cancer research agencies and oncology services across the globe in recognising International HPV Awareness Day on the 4th March 2024. |
| |
|
AGCF commends and supports the National Strategy for the Elimination of Cervical Cancer in Australia, launched by the Department of Health & Aged Care in November 2023.
In brief, the National Strategy covers three pillars across HPV - vaccination, cervical cancer screening and treatment, and helping young adults understand HPV.
Professor Hacker, Founder & Director of AGCF said: "the most important research discovery involving gynaecological cancers in the last 50 years has been the development of the human papilloma virus (HPV) vaccine, which, if given to teenage girls and boys, will prevent 90% of cases of cervical cancer".
There are over 800 cases of cervical cancer diagnosed in Australia each year, the majority of whom, over 70%, have never been screened or are overdue for screening. The AGCF team, together with Overport, have developed an animated short video to help spread the key care messages to tackle HPV and cervical cancer across the three pillars.
The video is freely available to download here. It is innovative, informative, relevant and suitable for high schools, health clinics, teaching hospitals, Aboriginal and Torres Strait Islander community controlled health services, rural women's health centres and primary care centres throughout urban, rural, regional and remote Australia.
We thank CSL Seqirus for their support to AGCF. Leonie Young CEO AGCF |
|
|
International Women's Day |
|
|
March 8 was International Women's Day.
We we're honoured to join with gynae cancer research agencies and oncology services across the globe in recognising this day.
Professor Neville Hacker, AGCF Founder & Director, is a co-founder and member of the International Gynaecological Cancer Society, IGCS, an international non-profit organisation with membership across most countries in the world. This organisation is working collaboratively with international leaders in gynaecology oncology to train young gynaecologists to treat women with gynaecological cancer more effectively, and to share recent advances in research that will improve the prevention, early diagnosis, and treatment of these cancers.
|
|
|
Joining hands on International Harmony Day! The AGCF team united with global gynae cancer research agencies and oncology services to address the profound impact on over 3.6 million women and families annually. |
| |
|
Let's combat the staggering mortality rates exceeding 1.3 million. Gynae cancers make up 40% of all cancer cases and over 30% of female cancer deaths worldwide. Together, we're on a mission for better testing, treatments, and lowering mortality rates. Prof. Hacker, AGCF Founder & Director, is proud to collaborate with the International Gynaecological Cancer Society across 20 countries, advancing research for improved interventions and treatments. |
|
|
The AGCF team is delighted to announce and welcome the generous sponsorship of the global award winning Harlow Loves Daisy, Luxury Bohemian Fashion company.
We thank Ms Corinne Pettersen, HLD's amazing founder, designer, and creative director, and proud AGCF Ambassador, for her ongoing support. The generous commitment of 5% of all HLD sales to AGCF will assist us in raising awareness of the 8 gynae cancers and help to fund breakthrough 'brilliant minds' researchers to improve treatments and extend lives from the gynae cancers.
Corinne bravely shared her personal journey and recovery from gynae cancer at her 'Celestial' Runway HLD event in Melbourne Fashion Week 2023 and on the AGCF website. She has given valuable insights and hope to many women in the fashion industry and many others across Australia.
Thank you Corinne, we look forward to partnering with you and the amazing Harlow Loves Daisy. |
|
|
Rosaleen's cancer was a malignant mixed mesodermal tumour (MMMT) of the cervix. MMMTs are also known as carcinosarcomas, because they are a malignancy of both the epithelial lining (carcinoma) and the underlying stroma (sarcoma). They are rare cancers, which occur more commonly in the body of the uterus than in the cervix. They are very aggressive, as shown in Rosaleen's case by the fact that the delay in diagnosis was only about 2 months from the time of her first symptoms, yet the cancer had already spread quite extensively at the time of surgery.
Professor Neville F Hacker AM MD |
In September of 2019, when I was 64, I noticed something unusual, and at first assumed it was a touch of urinary incontinence. Before long, I realised that it was, in fact, a vaginal discharge, more than 10 years after menopause. I was away for the whole month of October in the Middle East and during this time, the discharge became heavier and constant and, though I was not in pain, I was aware of a slight dull ache. During the second half of the month, not only was there blood in the discharge, it also had a strong and very unpleasant odour. I knew I was in trouble.
On 4 November, at the first opportunity back in Australia, I visited my GP, who could clearly see a very large growth in my vagina. She had no idea what it was but hoped it would prove to be something like a prolapsed fibroid. She ordered scans and blood tests and referred me to a gynaecological oncologist for urgent investigation.. On 11 November, a hysteroscopy was performed, and the tumour sent to pathology. A few days later, I was given a diagnosis of endo-cervical malignant mixed mesodermal tumour (MMMT). These cancers, also known as carcinosarcomas, are rare and highly aggressive. After considerable discussion at the MDT (Multi-Disciplinary Team) meeting, it was decided to treat my condition with a radical hysterectomy with removal of lymph nodes, followed by radiation therapy. I had the operation on December 7th, 2019 and the pathology report revealed that the cancer had spread to my tubes and ovaries, lymph nodes, and peritoneum. During February 2020, I had 25 sessions of radiation therapy (5 days a week for 5 weeks). Although not painful, the radiotherapy built up a lot of gas in my abdomen and I have had significant challenges with my bladder and bowel ever since. In June 2020, a PET scan showed no evidence of disease, so the hospital considered me in remission. However, in October, I had severe lower back pain, and another PET scan revealed fractures to the 5th lumbar and some sacral vertebrae. It was assumed these were the result of the radiation therapy, but the scan also showed inoperable tumours had recurred throughout the peritoneum. At this point, I was referred for palliative chemotherapy with Carboplatin and Paclitaxel. My medical oncologist indicated that the longest I could expect to live was "a small number of years or less". I am delighted to say that I have surprised them.
Over the next three years, I endured 17 cycles of chemotherapy given every 3 weeks, which caused me considerable mental and physical distress. During that time, I also had infusions of Avastin (Bevacizumab) every 3 weeks. This is used as a maintenance drug and continues during the breaks from chemo. For the last 6 chemo cycles, the Paclitaxel was stopped, and I found the infusions of carboplatin alone to be much more tolerable, though constipation and diarrhoea became my almost constant companions.
Over this period, I had regular PET scans The initial scans showed I had a "complete metabolic response" to treatment, but recurrence was eventually detected, and another cycle of chemotherapy would begin. In January of 2023, I hit something of a wall and my GP recommended antidepressants. I have been on a mild dose of them for a year now, and while they don't radically alter my mood, they have helped me to stay on an even keel emotionally.
The most recent scan revealed a small site of recurrence in the pelvis which had grown during the last round of chemotherapy. I was referred to the Palliative Care team, and back to the Radiation Oncologist. It was felt that more radiotherapy was not a viable option, as the pelvic area had been heavily radiated four years earlier. Surgery was also not considered to be an option and my tumours are no longer responding to chemotherapy. I am still receiving the three weekly Avastin (Bevacizumab) infusions and my job now is to continue to eat well, exercise as much as possible to maintain strength, and, most importantly, to maintain a positive outlook. My blood count is low, and this contributes to my biggest current problem which is fatigue. The Palliative Care Team, along with my GP, will manage pain control as necessary, When the time comes, I intend to avail myself of the recently passed Voluntary Assisted Dying law. Hopefully this will be some months away at least. I am fortunate to have a very supportive family and group of friends, and to live in a comfortable home with an all-important bathroom next to my bedroom. I do less than I used to do socially, as fatigue is now such a challenge. Fortunately, I have not lost my appetite, so we eat well, and I still enjoy a glass of wine or two with my dinner. Things could be a lot worse. Rosaleen Kirby |
|
|
Message of thanks from Leonie Young, AGCF CEO |
As I write to thank you for your ongoing support to AGCF this Autumn, I'm reminded of the impact of gynae cancer on many women across Australia and the world, and the events we've covered in just the first quarter of 2024; of the amazing cancer survivor journeys shared in the newsletter, and the bravery shown by individuals and their families. January
A tremendous effort by the Ellinbank Cricket Club in Vic, who harnessed the ECC members & families across the community, from butchers to hairdressers, entertainers, sports clubs, volunteers and families to hold a cricket fun day raising money and awareness of gynae cancer and donations for AGCF. February
Ovarian cancer awareness month, OCA's Teal ribbon day with hundreds of supporter events across the country, including a parliamentary breakfast and ongoing commitment from bipartisan politicians to continue funding OCA ovarian cancer support services; I joined the collaborative gynae cancer agencies at Parliament House to show support for OCA & teal month; for the social work oncology nurses who held a Galentines for Valentine's Day gynae cake stall.
March
4th International HPV Awareness Day; 8th - International Women's Day; 21st - International Harmony Day; the international days bring awareness & recognition of the impact of gynae cancers on more than 3.5 million women worldwide each year, resulting in more than a million deaths, and a focus on the International Gynae Cancer Society's multi country efforts to support medical and health service training and share improved treatments and practice. AGCF's Professor Neville Hacker, Founder & Director AO MD, is a co-founder of the IGCS.
|
The importance of research |
The growing enormity of the social and economic costs of the mortality and morbidity of gynae cancers, worldwide, illustrates the slow progress of breakthrough research compared to other life- saving, successful disease treatment efforts. This is why the AGCF is focussed on research into all gynae cancers - and why the research remains so important.
The stats & facts of gynae cancer in Australia, in 2024, despite our country's health and medical advancements, remain challenging, unfair, and tragic for many women and their families. Every 1.3 hours a woman in Australia is diagnosed with a gynaecological cancer. Almost 7000 new cases are diagnosed in Australia each year, and the number is growing.
A woman dies from a gynae cancer every 4 hours, with an average 6 deaths each day. There are 8 gynae cancers - vulval, vaginal, cervical, uterine, ovarian, fallopian, primary peritoneal and placental. Only 1, cervical cancer, has a preventative vaccine for young people and a reliable screening test.
Currently, a diagnosis of ovarian cancer brings a 51% chance of death before 5 years. Finding a reliable population screening test for ovarian cancer would allow more women to be diagnosed with Stage 1 disease, where the 5-year survival is about 90% - often without the need for chemotherapy. Research is the proven key to saving lives and extending survival rates. |
The AGCF team thanks donors, friends and readers for your donations, events and support, helping us raise awareness of the 8 gynae cancers and their impact. Your combined efforts have enabled world class research projects and brilliant minds to develop improved tests, diagnoses and treatments. You've given hope to women with cancer, their families and friends.
We thank the marvellous Overport social media team for their support to AGCF, for their creative ideas, for helping us promote and share important gynae cancer research findings - and fun postings - on www.agcf.org.au website, Facebook, Instagram, and other social media.
Thanks to our generous sponsors for their ongoing support, including the marvellous Corinne Pettersen and her world wide, award winning, bohemian fashion company HarlowlovesDaisy.com, donating a percentage of sales to AGCF; and to the Sydney Sock Project sydneysockproject.com for their wonderfully quirky vulva & ovary socks, with a percentage of sales to AGCF - we can all boldly & proudly wear lady parts on our feet while donating to AGCF!
We thank the NSW Government for their cancer research grant to assist AGCF's 2024 brilliant minds research fellowship, giving a post-doctoral researcher an opportunity to conduct breakthrough gynae cancer research. Gynae cancer research = breakthrough results = survivorship = hope to women and their families. Best regards, hope always, Leonie & the AGCF Team. |
|
|
Copyright © 2024 AGCF, All rights reserved. |
|
|
|