In the second article in our series for Breast Cancer Awareness Month, we meet Donna Rullo (pictured). Donna is 50 years old and lives on a 120-acre fruit farm in Swan Hill, Victoria. She was diagnosed with HER2-positive breast cancer in March 2001 at the age of 42 and after undergoing 12 months of treatment, has been in remission for eight years.
When Donna was diagnosed with early breast cancer in 2001, something her doctor said stood out: ‘Your cancer is HER2-positive.’ Donna immediately started gathering information about HER2-positive, determined to find out what it meant for her outlook and treatment plan. It took some real effort on her part, but Donna became the first person in the world to receive Herceptin as part of her treatment for early stage breast cancer.
“I went to my GP because I had a sore arm. She felt under my arm and found a large tumour in my lymph nodes. It was pretty big – 5 centremetres – when they did a mammogram I could see it as plain as day on the screen,” Donna told Australian Women Online.
“Within a week I had my surgery and then when I got a copy of my pathology I saw that I had HER2-positive. At the time my surgeon said it’s just another factor but I wanted to know what it was, so I went to a really good oncologist who told me about Richard Bell from RMIT who was looking at Herceptin.”
At the time Herceptin was only being given to women who had secondary cancers (metastasis). But after doing her research, Donna became convinced she could benefit from the treatment as well.
“I was watching Good Morning Australia with Kerri-Anne Kennerley and she was promoting Raelene Boyle’s 50th birthday party and decided I would go to that event. I met some amazing women from the Breast Cancer Network that night who told me that before I went on a drug I needed to be informed about it. So I went and heard Richard Bell speak at RMIT in Melbourne. I learnt all about the drug and what it does and about the trials.”
“Then I went and saw Richard Bell and told him that I thought I really needed this drug. I just drove him crazy. I rang him three times a week for three months and I was pretty sure that he was close to blocking my number on his telephone,” said Donna.
But her persistence finally paid off and Donna Rullo from Swan Hill, Victoria, became the first person without secondary cancers, to be given Herceptin as part of her treatment for breast cancer.
Richard Bell was very impressed with Donna’s level of commitment – travelling ten hours to Melbourne every 21 days to receive Herceptin via an IV – and the pair have since become really good friends.
“There is good treatment out there but sometimes you have to source it and I think that you have to be informed,” said Donna. “A lot of people just go along with the cancer treatment they’re offerred. When I looked at the treatment I was getting, one of the drugs did nothing with the HER2-positive factor and when I asked the oncologist why I was getting it he said it was because it’s just the way the treatment is.”
“You only have one really good go at it and I remember Richard saying to me ‘have a really good treatment when you’re first diagnosed Donna because the next time you get it back you’re living with secondaries’.”
It was a long haul back and it took her 12 months to go back to work as a medical records clerk at her local hospital. But since receiving her treatment, Donna Rullo has given a lot of support to other women who have been diagnosed with breast cancer.
After being part of a breast cancer support group in Melbourne called the Young Ones, Donna formed a group for women diagnosed with all types of cancer in her hometown of Swan Hill, Victoria.
“The group is for women touched by all types of cancer. Swan Hill is a small community and I thought if we were going to have just women with breast cancer, we’re not going to get a lot of membership,” said Donna.
“Unfortunately the girl I started the group with has passed away. She was only 35 when she was diagnosed with breast cancer and she came to me because she wanted to know about Herceptin. She went on Herceptin but it didn’t work for her and she had metastasis virtually within ten months. She tried another drug but unfortunately this failed as well. She left two very young children. She kept saying to me that I had to keep the group going and to help the women out there.”
“Because I work in the hospital if anyone is having their first chemo-therapy they will ask them if they would like to speak to someone and then I will touch base with them that way. Survivorship is really important because after the initial diagnosis of cancer you need to know you can survive. Cancer is a lonely disease. You may share it with five million people, but it’s yours.”
One of the issues confronting women who have been diagnosed with breast cancer is the way they will look after surgery. Donna Rullo says she wanted to save her breast, so when she had the operation to remove the lymph nodes the surgeon performed a partial mastectomy.
“But then she decided while I was asleep that she would put in an implant – she didn’t ask me. She filled the implant with saline and because I’d had radiotherapy it went hard – it was like a rock and I put up with that for another two years,” said Donna.
“Then last year I had a breast off and fat taken from my tummy and they made me a new breast. That was a huge operation but it’s been really successful. I think you have to be ready for an operation like that. I look like a jigsaw puzzle but at least what I have now is mine and I feel okay.”
At one stage, Donna had a prosthesis which she says become a nuisance, but in hindsight, she can also look back and laugh.
“I kept losing it. I’d leave it somewhere and then I would forget where I put it. I’d go swimming and it would float out. It was just a laugh in the end because one morning my husband got up and it was stuck to his back!”
Donna has collected a lot of funny stories relating to her treatment and believes that these are as much a part of the journey as the tears and the sadness.
“I decided to get some really nice wigs because I had lost my hair during chemo-therapy. I got this really lovely blonde wig and we went out one night to a nighclub and I can remember sitting there with my girlfriends when some guys came over. One of them said to me that I looked like Cilla Black of all people – so I pulled my wig off and I said ‘Now who do I look like?’ You should have seen the look on his face.”
“When you’re first diagnosed with breast cancer, it’s hard to imagine that the experience can turn out to be positive. I can remember the early days when I was losing my hair from chemotherapy – my mother, who has Alzheimer’s, would ask me why I had such a silly haircut and why was I lying down whilst my sisters were cooking for me and cleaning my house. I never thought I’d laugh at that, but I can now,” said Donna Rullo.
“For the last eight years I’ve lived my life by a different set of criteria, and it’s made me a happier, healthier person. It’s helped my family too.”
Donna’s advice to other women diagnosed with breast cancer is to find out as much as you can about your type of disease at the start, especially your HER2 status, regardless of your age or the size of your tumour.
“For me, knowing my HER2 status helped to determine the treatment option that would give me the best chance of survival. So, keep yourself informed, stay positive, listen to advice, but remember that you are an individual who may have different needs, so don’t be scared to ask.”
MORE ARTICLE IN OUR SERIES ON ‘SURVIVING BREAST CANCER’:
In December 2008, Cathryne Pearce finished 12 months of treatment for early stage breast cancer. Today she continues to work as an occupational therapist and has taken up several new activities that she wouldn’t have considered before her diagnosis. Click Here to Read Cathryne’s Story
Lisa Jansz, a 43-year-old mother of two from The Gap in Brisbane, was diagnosed with early breast cancer in June 2007 and again, in January 2008. Having assisted with thousands of breast cancer surgeries during her career as a theatre nurse, has a unique perspective on living with breast cancer. Click Here to read Lisa’s Story
Kay Leicht, a 53-year-old mother of three from Bexley, New South Wales, who is celebrating her tenth year of survival from breast cancer. At one stage Kay worried that she wouldn’t live to see her children grow up, but then a life saving new therapy gave her a future. Click Here to read Kay’s Story