Q & A with Chris Tse

Brain Wave, December 2021

Chris Tse is a founding trustee of Brain Tumour Support NZ and earlier this year took over as chair. Chris has been involved in brain tumour patient advocacy since 2006, when his wife, Lynda, was diagnosed with a glioblastoma. In this Q & A session, Chris gives a first-hand account of his journey from husband/father to caregiver to brain tumour patient advocate. He also reveals some of the people who have inspired his work in patient advocacy.

BTSNZ: Tell us how you first landed in the world of brain tumours.
CT: Well, like many who find themselves in this position it was a bit of a crash landing to be honest! Life had been going along just fine. A few months earlier we had been on a memorable family holiday taking the kids, then aged 12 and 10, to Disneyland. The brain tumour diagnosis came along out of the blue and completely blindsided us.

BTSNZ: Can you tell us what happened?
CT: Lynda had been suffering with headaches for a few weeks but had been bravely soldiering through them with nothing but paracetamol to dull the pain. She had put the headaches down to stress and tiredness. Things came to a head one Sunday morning, when we were having my cousin and his family over for Sunday brunch. Lynda’s headaches became steadily worse over the course of the morning and when she started feeling nauseous and vomiting I rushed her in to the after hours clinic. The doctor wrote her a script for paracetamol and told her if she wasn’t feeling better to visit her GP the next morning. His parting comment has stuck in my mind to this day: “If we were in the US, I’d be sending you for a scan to check for a brain tumour.”
The headaches, nausea and vomiting continued through the night. The following morning we visited Lynda’s GP who took one look at her and sent her down to the Emergency Department at Wellington Hospital. Three days later she underwent surgery to remove the tumour, which turned out to be a glioblastoma.

BTSNZ: Before your wife’s diagnosis did you know much about brain tumours?
CT: Not a lot, but coincidentally a few months before Lynda was diagnosed, my cousin Mike had been diagnosed with a glioblastoma. I had been at work when I received a phone call from someone asking if I was a relative of Michael Tse. Mike had blacked out while at his desk at work and his colleagues were desperately trying to contact his family. I later learned that Mike had suffered a grand mal seizure, and that a few days later he was diagnosed with a glioblastoma.

After Lynda told Mike about her diagnosis, he said excitedly “GBM, glioblastoma, that’s exactly the same tumour that I’ve got!” The two of them became very close, swapping notes, sharing experiences and discussing ideas about diet, supplements and new treatments. They were a great support for each other and called each other their “brain tumour buddies”. Looking back, I now recognise that their relationship was a prototype for BTSNZ’s Support Friends peer support programme. Sadly, we lost Mike in 2007. He was 40 years old and it had been just over two years since his diagnosis.

BTSNZ: What support was available for brain tumour patients back then?
CT: Mike and his mum Anne (my aunt) introduced us to the brain tumour support group run by Pip Murdoch at the Cancer Society in Wellington. Through this support group we were able to connect with other patients and carers going through the same thing. Although it was tough going at times, as members of the group were at different stages of their brain tumour journey, it was an invaluable source of information and support. Brain Tumour Support NZ tries to offer this same support with our online support groups for brain tumour survivors and carers.

BTSNZ: How did you first become involved in brain tumour patient advocacy?
CT: Also attending the Cancer Society brain tumour support group at that time were Dave and Penny Bowman. Dave, a Kapiti Coast policeman, had been diagnosed with a glioblastoma and was lobbying PHARMAC to fund a new brain tumour drug called Temodal. Dave and Penny had started an organisation called Head Start to raise awareness about brain tumours and to campaign for Temodal funding for New Zealand patients. The pair travelled to the United States where they presented at a brain tumour conference in New Jersey and visited the renowned brain tumour centre at Duke University in North Carolina. Penny, a communications professional, produced an award-winning documentary titled “Million Dollar Tumour” which aired on TV3 and went on to win film and media awards.

Dave and Penny were ultimately successful in their drug funding campaign, although it was too late to help Dave who sadly passed away in the middle of 2006. Temodal, these days known by its generic name temozolomide, is now the standard of care for newly diagnosed glioblastoma and is prescribed to hundreds of patients in New Zealand each year and thousands of patients worldwide. Dave and Penny taught me a lot about patient advocacy, how to fight and never give up, and the value of battling on behalf of others even when you might not benefit yourself. I still see Penny every now and then. Last year she helped out at our fundraising event Miniwalk Wellington giving out pizzas to tired walkers at the finish.

Another of the Bowman’s initiatives was to start an online chat group for New Zealand brain tumour patients. In those days these were hosted on the Yahoo chat group platform and the support group they started became a useful way to for New Zealand patients to connect with each other. Later the group migrated onto the Facebook platform and became the NZ Brain Tumour Support group. While this group still exists most members have migrated to one of the Brain Tumour Support NZ Facebook groups which continue to provide the opportunity for patients and carers to connect, exchange ideas and share experiences.

BTSNZ: You are a Senior Advisor at the International Brain Tumour Alliance, which is a UK-based organisation. How did you become involved with them?
CT: It was through the online chat groups that Denis Strangman (Australia) and Kathy Oliver (UK) from the International Brain Tumour Alliance (IBTA) contacted me. Denis and Kathy had established the IBTA as a UK non-profit company in 2005 aiming to build a global network of patient advocates, clinicians and researchers with the common goal of improving outcomes for brain tumour patients. I started helping them by editing and proof reading their communications, and am now an IBTA senior advisor. 

Another online group which was prominent at that time was run by Al Musella, president and founder of the Musella Foundation which runs the VirtualTrials.com website. Al is probably the most knowledgeable person I know in terms of brain tumour research, particularly glioblastoma. He is relentless in his pursuit of new treatments and his Foundation helps fund research as well as offering financial assistance to patients. I have been fortunate to meet Al at several of the SNO (Society for Neuro-Oncology) meetings in the US, and some of my research reports have been published on his website.

BTSNZ: Is it through the IBTA that you became involved with the EORTC?
CT: Yes, that’s correct. My work with the IBTA started ramping up in 2013 when Lynda and I attended their inaugural World Summit of Brain Tumour Patient Advocates in California. This meeting opened my eyes to the expansive world of patient advocacy and I met so many great people doing wonderful work with brain tumour patients. I have now attended four IBTA World Summits and am grateful to call many of these brain tumour patient advocates my friends.

After Denis Strangman retired in 2014, Kathy Oliver became sole chair of the IBTA. Kathy is known worldwide for her work in patient advocacy but particularly in Europe where she sits on various advisory boards, panels and commissions. It was Kathy who put my name forward to the EORTC (European Organisation for Research and Treatment of Cancer) as a patient expert in CNS (central nervous system) tumours. The majority of this work involves reviewing protocol synopses for new clinical trials. I have also done work for the EMA (European Medicines Agency) on reviewing patient consent forms and other patient documentation.

BTSNZ: Who are some of the people who have influenced you as a patient advocate?
CT: I have already mentioned Dave and Penny Bowman, Denis Strangman, Kathy Oliver and Al Musella, all of whom have been an inspiration to me. I have learned a lot from all of my colleagues on the IBTA advisory board. I have also been fortunate to meet several prominent doctors over the course of my time as a brain tumour patient advocate but one in particular has stood out, Dr Mark Gilbert from the USA. Dr Gilbert was the head neuro-oncologist at the MD Anderson Cancer Center in Texas and is now the head of the Neuro-Oncology Branch at the National Institutes of Health (NIH) in Bethesda, Maryland. The NIH is one of the leading cancer research centres in the world and Dr Gilbert is recognised as one of the leading neuro-oncologists globally.

I have met Dr Gilbert on just three or four occasions at different conferences around the world, but on each occasion he has been very generous with his time and willing to answer any questions or concerns I have had. On one occasion, in between presentations at a neuro-oncology conference in Beijing, he spent around an hour with me discussing Lynda’s case and the issues facing long term survivors of GBM. He speaks quietly but confidently, is extremely knowledgeable and maintains a positive outlook. If I was ever to be diagnosed with a brain tumour, I would like Dr Gilbert as my doctor.

BTSNZ: What do you think are the main challenges facing brain tumour patients in New Zealand today?
CT: A lot has changed over the last 15 years but sadly much has remained the same, including the limited treatment options for glioblastoma patients. While there have been some small improvements in surgical procedures and radiotherapy technology, it’s disappointing that PHARMAC has not funded any new brain cancer drugs since temozolomide in 2006. This includes the monoclonal antibody bevacizumab (Avastin), which was approved to treat recurrent glioblastoma by the US FDA in 2009 and is widely used overseas, including in Australia where it is funded on the PBS. But to be honest there are not a lot of treatments that the brain tumour community can lobby for access to. This highlights the importance of research. More research into brain tumours is desperately needed at all levels, from basic science to clinical trials.

Aside from the lack of treatment options, brain tumour patients and their families face a multitude of problems. Lack of psychosocial support after diagnosis, lack of co-ordinated care and support following discharge from hospital, difficulty in accessing neuro-rehabilitation services, financial hardship, caregiver burden, the list goes on. Brain Tumour Support NZ is trying to address all of these issues but many of them are as a result of an overstretched and underfunded health system.

BTSNZ: Do you have any advice for people who are newly diagnosed with a brain tumour?
CT: Well the first thing I would say is that every brain tumour is different, not just in the histology or type of tumour, but where it is located in the brain. Therefore there is no “one size fits all” situation that will apply to everybody. I think it was Chris O’Brien, the Australian surgeon who founded the Chris O’Brien Lifehouse in Sydney, who said that “the starting basis for every diagnosis should be Hope” and I think this is a really good way to approach a brain tumour diagnosis. People get very wound up with statistics but I advise them that these are just averages across a wide variety of outcomes and they don’t necessarily apply to individual patients.

BTSNZ: What are some of the plans for Brain Tumour Support NZ in the future?
CT: We have so many! We are on track to launch our website and support services for children with brain tumours and their families in 2022. We are strengthening our support services with increased volunteer training, and developing new information and support packages for caregivers. Finally, we plan to accelerate the advocacy work which we commenced this year, including the project to establish a national brain tumour registry. It is a hugely busy time for our charity and we are fortunate to have a very talented and hard working team to carry out this work. We also couldn’t progress this work without the help of our wonderful supporters, including all of the volunteers, donors and fundraisers who contribute so much to the life and vitality of Brain Tumour Support NZ.