Many patients are “scared of being a guinea pig” but the reality is that they’re likely to have better outcomes if they choose to take part in a clinical trial.
So says Dr Susie Bae, who specialises in both sarcoma and breast cancers. Her advice to patients is always to participate in a trial if it’s offered by clinicians, but admits many people are fearful of what’s involved. Susie shares her insights about her work and her patients to mark Sarcoma Awareness Month, explaining why her work provides a window to some of life’s best and worst moments, but is always “a great privilege”.
“My work is diverse – I specialise in both sarcoma and breast cancer across three different hospitals and I am also a clinical research fellow with the Australia New Zealand Sarcoma Association (ANZSA).
“Whatever the cancer but especially with sarcoma because it is a rare cancer, I always encourage patients to take part in trials. All the evidence shows that just by taking part, patients involved in studies are actually more likely to do better – no matter what therapy arm of the trial they are assigned to.
Patients say to me, ‘I don’t want to be a guinea pig’. Many are fearful perhaps because they feel like they are losing a sense of control. Some worry about the unknown element of being part of a trial.
What they need to know however, is that in most cases of sarcoma trials they will get the standard of care, regardless. With any trial, no-one is under-treated. But those who are randomised on a study to receive a new therapy will be exposed to another agent as well, which has already shown promise in pre-clinical studies.
I also want them to know that mostly, people who go on and take part in a trial actually do better. The reasons for this are probably multi-factorial.
Once they get involved in clinical trials, they have a very dedicated trial team. They will be assigned research nurses and they get monitored a lot more closely. There is ongoing blood work and scans. So, I would say there is probably a higher chance that we will know early whether a particular treatment is working or not working. And patients on trials have a higher chance of getting better support.
The only way we will ever advance in terms of being able to treat diseases like sarcoma is by doing trials.
We have come a long way treating sarcoma in the past five to 10 years, because there are improved treatment options and newer therapy algorithms, but there is still a lot of work to be done.
In terms of the next advances for sarcoma, I don’t think it will be one major breakthrough that will solve everything, but I think we will see a series of incremental advances that will make an overall difference – things like better supportive care, new molecules and better combination therapies.
It is a great privilege to be a medical oncologist, to work with patients and to go on what can be a really difficult journey with patients and their families.
I do get affected when things don’t go well, despite the very best efforts of the full medical team.
Over time, I have learnt to manage some of the sadness better and have been able to have some level of detachment so I can protect myself. But it is hard.
Like other cancers, those who are diagnosed at early stage with sarcoma tend to have good outcomes.
But there are those who become metastatic or present with metastatic disease and you do know that they have a finite time.
Specialising in sarcoma, you are dealing with a lot of bone sarcoma as well, which means you are dealing frequently with young people.
Emotionally this can be really challenging. These people are meant to be in the prime of their lives, but they are in hospital, enduring hospital stays and treatment. Their families are struggling as well.
I have had many patients who have made an impact on me, both as a person and a clinician. Recently, I had a patient, a beautiful young man who was only in his early 20s. He had a very unusual cancer, a poorly-differentiated soft-tissue sarcoma. It was a big deal for him to come to Peteramcfor treatment. He worked in the family business and he had a partner – there was a lot they wanted to do in life, and they were hoping to have a family.
This man had one last wish – he wanted to die at home. He was in so much pain but in the end, we did make it happen. It was all of us – me and the nursing staff and the palliative care team working together to make it happen.
But he got there. He was at home, with his family when he passed and it was beautiful. It was such a huge privilege to be part of this experience.
I love my work and I can’t imagine doing anything else.”
Dr Susie Bae is a medical oncologist with subspecialty interests in sarcoma and breast cancer, working at the Peter MacCallum Cancer Centre and Eastern Health. She has also worked as a Clinical Research Fellow for the Australia and New Zealand Sarcoma Association (ANZSA) since 2012. Dr Bae is the national lead in overseeing the Australian Sarcoma Database, which collects comprehensive sarcoma datasets from seven adult sarcoma services around Australia. For more information about sarcoma or to find a clinician, please go to www.sarcoma.org.au.