McGrath Foundation

Lifelong cricket fan, Terry, has watched the McGrath Foundation grow ever since the first Pink Test in 2009, but he never thought he would need the support of a McGrath Breast Care Nurse himself. Sadly, the 76-year-old was one of the estimated 212 men diagnosed with breast cancer in Australia every year and he found out first-hand how vital their support is. Not only was Terry’s diagnosis unusual but how he found out was also uncommon. It was thanks to a prostate cancer diagnosis.

“Early in November 2021, my wife found a lump on my breast. The doctors sent me for an ultrasound and it came back as hard, fatty tissue. There was no issue,” Terry says. “Then in December, I had some tests because my PSA (prostate-specific antigen) levels were high and they came back showing a problem with the prostate. My specialist sent me for a PET scan, which showed up prostate cancer and also the malignancy of the left breast. “The breast cancer became a priority over the prostate.”

Terry had to have a mastectomy and after undergoing genetic testing, tested positive for the BRCA2 cancer gene. There were complications with the mastectomy; he developed pain and swelling in his chest which turned out to be a severe haematoma which required the wound to be cleaned and restitched. It then swelled up again and he had to have it aspirated twice, removing 380 and 260ml of fluid respectively. After he had recovered, Terry started six weeks of daily radiation on his chest and three weeks later began treatment for his prostate cancer, which included more rounds of radiation. The daily three-hour round trip to the hospital for radiation made it even harder.

“I couldn’t have chemotherapy, I had an ablation on my heart in 2021 and chemo could have caused problems,” Terry says.

“I stayed positive most of the way through, I had my moments but my attitude was, whatever had to be done, let’s get it over and done with. I’m happy, I’m good in myself now. We moved house from where we were living, to a smaller property right on the coast and we love it. Two bouts of cancer really make you think about how you want to live."

“Never in a million years did I think I would benefit from the McGrath Foundation. I knew men could get breast cancer, but the odds are like winning the lotto – except you have to be unlucky!”

“Initially, it felt too overwhelming and I was deflated, it took me a few days to absorb it all. I accepted the prostate cancer because men get it, but when I found out about the double whammy of breast cancer and that it was more invasive, that was hard. At least they got it early and I've now got a clean bill of health. “I want to give my heartfelt thanks to the McGrath Foundation, you don’t appreciate the support and the help available until you’re actually affected by it.”

McGrath Breast Care Nurse Helen's role in Terry’s recovery

McGrath Breast Care Nurse Helen was with Terry right from the start and she was a crucial part of his breast cancer treatment. “When I started treatment, it was dragging out a bit, that’s where the involvement with Helen became gold to me,” Terry says. “I could talk to somebody about it and she was good at organising everything. She told me not to worry about the swelling in my chest, and that she’d fix it and she did. She was absolutely amazing. “Without her, it would’ve been very frustrating. My wife, Glenys, would’ve probably had to do the running around and having Helen there just took the load off both of us.

“Having Helen there also made it not as lonely. She was totally supportive, and nothing was a problem for her.” Glenys also wants to emphasise that Helen also supported her, not just Terry. “After the mastectomy, I was worried about Terry’s site where it was all swollen and when we spoke to Helen she put us at ease. She got in touch with the doctor and told us what we should do to help it. She was always there for us,” Glenys says.

“Without her, it would’ve put more pressure on me. She helped take away the doubt in my mind, just knowing we had someone to talk to make the whole thing seem easier. If she weren’t there, the gremlins who sneak into your mind at night would’ve taken over. When you’re struggling and can’t get answers from anyone, she is the one who gives you those answers. She made the experience much easier.”

McGrath Breast Care Nurse Helen

Helen has been a nurse for over 30 years and a McGrath Breast Care Nurse for more than nine years. She has been at Calvary Mater Hospital in Newcastle for over five years. “I wanted to go to university, I like helping people and I like talking to people – nursing ticked all those boxes. Straight away, I knew oncology was what I wanted to do, whenever it came to my practical courses, I always chose a hospice or oncology unit, it’s something that’s always interested me. It’s also a real privilege to be let into someone’s life at that stage. You know you are making a real difference,” she says. When she saw the McGrath Breast Care Nurse position advertised, she “jumped at it.” “I knew that with my knowledge of community and support services, I could bring a lot to the role,” Helen says.

“I love my job, I love educating people and feeling that I’ve made a bit of a difference. It’s rewarding when you’re educating a patient about their treatment and you see the confusion go as understanding happens. Being able to explain complicated medical jargon to people in a way they understand is very powerful. When I first see patients, they are very vulnerable; they’re so anxious but being able to educate them about the treatment path gives them a bit of power.

“The role of a McGrath Breast Care Nurse is about providing information and support, it’s being that one point of contact that people can have from diagnosis through to treatment and beyond. You develop a rapport with people and their families, having that continuity of care puts them at ease. They know that they won’t get lost in a very complicated, convoluted health care system.”

On average, Helen sees about three men a year with breast cancer, but Terry was her first male patient for 2022. “My approach for male patients doesn’t differ. The treatment is the same, other than having mammograms,” she says. “We do have resources for men and there’s a lot of education available. Some men get really embarrassed because breast cancer is seen as ‘female disease’, but Terry wasn’t like that. He seemed to take everything in his stride. “He lived 90 minutes away from the hospital, so when he had issues with his wounds Glenys would email me photos and I’d let them know when they needed to come down so I could drain the fluid from the site, or whatever he needed.

“Terry had a difficult time, but he’s a really sensible man who took it all in his stride. For a while there, during Terry’s post-operation period, I liaised with Glenys. She’d ring me when Terry had an issue. We’re not just here to support patients, but their families as well.”

At 29 years old, Erin was busy raising the kids with her husband, working full time and enjoying everything life had to offer in Northern NSW.

When Erin received a shock breast cancer diagnosis, her whole life changed as she underwent intensive treatment for aggressive stage 3 breast cancer. Erin was supported through her experience by Grafton McGrath Breast Care Nurse Cathy.

In September 2021, Erin was lying in bed when she felt a solid pea sized lump in her left breast. Over the next few weeks, she kept an eye on it, checking on it every night but never thinking it could really be something concerning. Life was busy, working full time and spending time with her close-knit family, and GP appointments were often hard to come by. When Erin did go to the GP the following month, she was sent for a precautionary ultrasound and the results came back as an inflamed lymph node. While it seemed like it was nothing to worry about, Erin’s GP recommended she keep an eye on it and come back if anything changed. By December, the lump had grown in size and Erin was sent for a biopsy the following month. Erin was two days into a new job in early February 2022, at a training day, when she looked down to her phone to see a series of missed calls - from her GP, her husband and her mother. By that point, months after she first felt the lump, Erin already knew what the GP was calling to tell her - she had breast cancer.

Erin had stage three locally advanced breast cancer, which had spread to multiple lymph nodes. When it was recommended that she have chemotherapy before surgery to remove the cancer, Erin struggled with knowing the cancer was still inside her body. Fortunately, Erin was able to turn to her McGrath Breast Care Nurse, Cathy Brophy, who helped her understand why it was important to have the chemotherapy pre-surgery.

“I always had so many questions, that I thought were silly questions, but Cathy would just explain everything to me. She broke down why I had to have the chemotherapy first and reassured me that it would all be ok. You can’t just pick up the phone and call your GP or oncologist, but I could always call Cathy.”

Erin has undergone a double mastectomy, full lymph node clearance and radiation, with the support of Cathy the whole way through, and has been receiving chemotherapy until April this year. Throughout treatment, Erin was training to participate in a fundraising walk from Newcastle to Sydney in January this year but after experiencing complications from her treatment, including an infection that led to Erin being hospitalised for several weeks before Christmas last year she sadly had to pull out at the last minute. Thankfully Erin is now back home with her family and is soon to wrap up active treatment.

McGrath Breast Care Nurse Cathy on Erin:

Cathy has been a McGrath Breast Care Nurse since 2009, supporting patients in Grafton and the surrounding areas. It was Erin’s mum that originally reached out to Cathy on behalf of her daughter, once they received Erin’s breast cancer diagnosis. Cathy helped the family through the whole process, answering questions, providing information and resources and helping Erin understand her treatment options. Cathy is passionate about ensuring all her patients, like Erin, feel listened to and understood throughout their diagnosis and treatment.

“Erin had so much going on in her life raising the kids, and she’s exceptionally young. She is just a beautiful person and it was a difficult time. I was glad to be there to help make the experience easier however I could.”

“Every person’s breast cancer is different and everyone has different priorities. It’s about understanding what your patient needs and helping them make the choices that will work best for them.”

An avid hiker and alcohol free for nearly eight years, Danny never expected to have breast cancer. But in late 2019, the unexpected became reality, when what Danny thought was a benign cyst in his chest was officially diagnosed as breast cancer.

Danny, 46 years old, has always lived a busy and active lifestyle, living by the beach in Rye and spending time with his family and friends. For years there had been a small lump in the left side of his chest, which he had had checked out previously and was dismissed as nothing to worry about. When he was back at the doctor a few years later, Danny thought he may as well get it looked at again while he was there, eventually leading to an ultrasound and biopsy.

It was on Christmas Eve in 2019 that his GP called to tell him the devastating news that he had breast cancer. Danny immediately launched into twelve months of treatment, including chemotherapy, radiotherapy and surgery to remove lymph nodes. Unfortunately, 12 months later there was a recurrence of the cancer in his bones, with oligometastatic disease in his shoulder blade and hip. Metastatic breast cancer is when the primary cancer has spread beyond the breast. Oligometastatic disease is when there is a low disease burden, with the presence of between one and five metastases (lesions, spots or tumours) only.

Danny has a very positive mindset and has benefitted from the evolving treatment landscape for metastatic breast cancer. “I only had two small spots on bones which have been treated with local therapies. I hang on to hope that I’ll be cured, and in fact I believe very strongly that I will be one day.”

While no cancer experience is easy, Danny has been determined to keep living life as he always has. Just recently he completed the Overland Track in Tasmania with his daughter, a feat not for the faint of heart. Danny has also been alcohol free for nearly eight years and believes he is in a much better state to handle his breast cancer because of it.

After his cancer recurrence, Danny was introduced to Metastatic McGrath Breast Care Nurse Jenny, who has been there to guide him through his treatment. Jenny has answered any questions he has, helped schedule appointments, and decoded complex medical advice - so that Danny can focus on living his life with his family.

Metastatic McGrath Breast Care Nurse Jenny on Danny

Jenny met Danny in mid-2021, when his cancer had metastasised and he was dealing with a life-long prognosis. Despite the shock of his cancer recurring, Jenny was impressed with how Danny has taken everything in his stride and participates whole heartedly in his care.

“He’s a real thinker. Danny always likes to be well informed every step of the way and I’m glad I can be there to answer his questions. He’s not letting the cancer slow him down. He even did the Overland Track while on oral chemotherapy, the first of my patients to have ever done that, that’s for sure!”

Since watching her sister go through breast cancer eight years ago, Kathleen has been scrupulous about having her breasts checked every year, never missing a mammogram or ultrasound.

However, two years ago her right breast blew up in size and Kathleen went straight back to her GP, having had her mammogram only a few months before, where nothing had been detected. Sadly, upon that next visit, triple negative breast cancer in her right breast was diagnosed.

Unfortunately for Kathleen, cancer is a common thread in her family, with her sister, cousins and aunt all being diagnosed with breast cancer before her. At the time, they all tested negative during genetic testing, which left the family baffled. However, new testing has revealed that Kathleen has the PAL-B2, or BRCA-3 gene, and it is highly likely that it runs in her family. This means there is a 30% chance Kathleen could develop ovarian cancer and is planning to have her ovaries removed once her active breast cancer treatment concludes.

Despite all of this, Kathleen has remained extremely positive about her experience. She is now back at work, where she helps manage an aged care facility and is looking to reinvigorate her active and healthy lifestyle. Since undergoing her treatment, Kathleen has completely given up alcohol. Having never been a big drinker, breast cancer was the final push for Kathleen to cut out alcohol from her life - though she may have a glass of wine to celebrate her 50th birthday this year!

Kathleen has been supported throughout her experience by McGrath Breast Care Nurse Deirdre Duyvestyn, who she first met at a specialist appointment early in her treatment. Deirdre was always there to guide Kathleen through her breast cancer experience whenever she was needed, from accompanying Kathleen to medical appointments to decoding complex terminology and providing emotional support.

McGrath Breast Care Nurse Deirdre Duyvestyn on Kathleen

Based in Cairns, Deirdre has been a McGrath Breast Care Nurse since 2018, operating out of BreastScreen Queensland. She met Kathleen at her first appointment with the surgeon and knew about the immense history of cancer in Kathleen’s family.

While it was a terrifying experience for Kathleen being the next member of her family diagnosed with breast cancer, Deirdre has been impressed by her outlook and pragmatic approach.

“Coming from a background with that huge history of cancer in the family, you could see that it was incredibly frightening for Kathleen and her husband. However, she was just lovely throughout the whole process, easy to talk to and open to receiving support."

“When she finally got that PAL-B2 result back, indicating a genetic predisposition towards cancer, you could see that it answered a lot of questions, but also opened up a whole new world of concerns. Nonetheless they have always been pragmatic about everything, asking what the next step was and how best to move forward. She has been brilliant."

My name is Joylene, and I am privileged to be a McGrath Breast Care Nurse based out of Ballarat, Victoria.

I wanted to say thank you for taking on the Dry July challenge and supporting the McGrath Foundation this year. It’s because of your incredible support that the McGrath Foundation is able to fund more McGrath Breast Care Nurses like me, so that no one experiences breast cancer without care.

I see firsthand how important a McGrath Breast Care Nurse is in the lives of so many Australians.

Did you know that this Dry July I joined you in the challenge? I said no to alcohol for 31 days for my health and for my patients and I found that it was a great opportunity to reboot my health!

This year, it is estimated that 55 people will be diagnosed with breast cancer every day. A breast cancer diagnosis can be overwhelming and that's the case now more than ever. The McGrath Foundation currently fund 171 McGrath Breast Care Nurses like me. Together we provide invaluable physical, psychological and emotional support to families navigating the complexities of their breast cancer diagnosis and care.

On behalf of the McGrath Foundation, our patients and their families, we would like to thank you for your support and contribution to making a positive difference in the those experiencing breast cancer.

See Joylene's full video here.