By my side

Debbie Packham was diagnosed with early breast cancer in 2016. After learning her breast cancer had spread, she was introduced to Gillian Kruss, Monash Health’s first metastatic breast care nurse practitioner.

DEBBIE: Following a diagnosis of breast cancer in December 2016, I was invited to participate in a breast cancer research trial. It involved having a PET scan, which subsequently revealed I had a tiny centre of cancerous cells in my sacrum (a bone in the lower back).

Ironically, I had been very positive about recovering from breast cancer and had decided not to join the study trial, but when my results came back showing I had metastatic breast cancer, I had a sense of fate intervening. It was meant to be.

I admit to being upset with the additional diagnosis, but funnily enough, I wasn’t devastated.

During chemotherapy I contracted a very rare inflammatory breast cancer that meant I would have a mastectomy – something I had not anticipated.

Around that time, I did have probably my only deeply introspective cancer moment. I sat in a chair for a long time, knowing that with metastatic breast cancer, my survival estimation dropped from 90 per cent down to 50 per cent, and I wondered if five years was enough. I was optimistic and ultimately knew I wanted to live longer, and so I embarked on treatment.

I needed intense radiation treatment for my metastatic cancer. This involved a high-dose bombardment of my sacrum, which I am confident has worked.

Although I feel cancer-free, I know there is no guarantee, so I am on two anti-cancer medications, letrozole and a new drug, ribociclib (Kisqali) for as long as my body tolerates it.

I was introduced to Gillian last year, who has been wonderful. It is great to have her as my one point of contact.

I go armed to any appointment with my blue striped book full of questions, because I feel if I can understand the process, then I know I am a part of my own care and it keeps me on top of my health control.

Gillian is very knowledgeable and always ready to answer anything I ask, even if it is silly. And she certainly goes out of her way to help.

She was particularly helpful and supportive as we worked together for a very long time to sort out the dosage levels of my endocrine therapy drug. And together we got it right.

I feel that the essence of our relationship is that Gillian knows me, knows how I work and is always available for me as my go-to person. And that makes life so much easier.

I feel that with Gillian’s help, I am now in control of my own destiny. My breast care nurses were always helpful, but Gillian works with me at that next level with a deeper and more specific understanding of therapies and drugs and the needs, thoughts and worries metastatic cancer patients have.

From my own personal experience with Gillian, I feel it is vital for all metastatic patients to have a specialist metastatic breast care nurse who can give the continuity of care, understanding and knowledge, calmness and caring that only they and your own medical team can give.

GILLIAN: I work at Monash Health Melbourne as a nurse practitioner and try to help people with metastatic breast cancer cope better with living with this diagnosis.

My role is not only to comfort patients, who are in a very vulnerable place when given a frightening diagnosis, but to assist them to understand their health challenges and options and help them navigate their way through all the various treatments, services and specialists they may need to see.

Patients who are diagnosed with metastatic breast cancer experience a great deal of distress knowing they have a life-limiting disease. Of course, they worry about their future, those close to them and about how they will cope with and stay as well as possible on their treatments.

When asked about prognosis, I take the opportunity to encourage many patients to ‘prepare for the worst, but hope for the best’. By doing so, they can take control of their future while they are well, rather than waiting until it is too late and they are too unwell to do so.

Because patients cope differently, the role of a metastatic breast care nurse is always personalised, and I help identify and address each patient’s unique supportive care needs, whether they be physical, social, psychological, spiritual and/ or informational.

For a lot of my patients, navigating an almost alien world of many different specialists and treatments can be overwhelming and distressing. This is why I do what I do, because I can be there when and if my patients need me. I offer them information and reassurance, acting as an understanding point of contact so they can make informed decisions and report any concerns whenever they need to.

When I first met Debbie last year she was understandably worried, but knowing her metastatic breast cancer had been caught early and had spread to only one distant site, she has remained very positive.

She was prescribed radiotherapy to this site of metastasis and then oral endocrine and targeted therapies, to which she has had a great response and now continues to live her life very well on these tablets.

During her initial diagnosis, I was able to help Debbie understand her disease and her goals of care, and have since been closely monitoring her tolerance of the treatments prescribed. By getting lots of information about her prognosis, disease and treatment options, she could make informed choices and gain an element of control.

For the future of metastatic breast cancer, I hope that research can continue to develop new, more effective treatments that are better tolerated and can extend life and, of course, ideally find a cure.

There are only a small number of metastatic breast cancer nursing positions in Australia and although more jobs are being funded, I do hope that more specialist nurses can be trained so that others like Debbie will always have compassionate assistance when dealing with their advanced cancer.

Working with Debbie and others in need gives me extraordinary personal and professional satisfaction.

Issue 83
Spring 2018