Help Lisa access lifesaving PRRT treatment
In May of 2018 my cousin Lisa, a dedicated mum to her beloved children, Case (15) and Reese (9) had her world turned upside down when she was diagnosed with a neuroendocrine tumour (NETs) in her lung, a very rare form of Cancer.
This cancer is so rare that there are no experts in BC and there are very few treatments available here compared to other provinces and many other countries. Indeed, Lisa is a member of the CNETS Awareness Committee, who are working towards having Neuroendocrine cancer added to the oncology texts in Canada.
Lisa has advocated to help bring the best possible life extending treatment to BC called PRRT, for herself as we all as the other Neuroendocrine patients. She was recently successful in this endeavor, but unfortunately BC Cancer will not provide her the therapy despite the fact that it will prolong her life and time with her young kids.
Lisa now needs our help to crowdfund for the treatment in Seattle that she could access quickly.
I would like to ask that you all assist me in helping Lisa get the treatment that she fought to get but cannot access in BC, by donating whatever you can, even if it is only a few dollars, everything will help.
If there are any remaining funds after she receives the treatment, she will start an education saving fund for her children.
Please see below for a more detailed description of Lisa's and her family's journey.
Lisa’s story:
Being by Lisa’s side through her cancer journey has given me a front row seat in seeing just how truly challenging it has been for Lisa to access care and treatment. It is a relatively rare cancer, and there is no specialist in this type of cancer in BC. She has worked with a team of doctors over the past three years, and the level of attention that she has received has been inconsistent to put it mildly; Lisa has really had to be her own best advocate at every turn.
At the beginning, Lisa was adamant that crowdfunding was not something that she was comfortable with should things come to that, but we are at a point where Lisa is running out of options. PRRT (https://cnets.ca/patients-caregivers/net-diagnosis-and-treatments/net-treatments/prrt/) appears to be the last door for Lisa, and it going to cost a lot of money to access no matter where/how the option materializes (details below). As a result, Lisa has given me permission to start a crowd funding campaign. The next chapter of her fight is just beginning. Your contributions to her treatment fund are indescribably appreciated.
Lisa has always been an avid hiker, so on the day of her diagnosis in May 2018 she hiked the Grouse Grind in defiance of what was to come. Lisa started treatment straight away and had her right ovary and fallopian tube removed as it was identified that the cancer had already spread. Over the months following that procedure, she tried multiple treatments including lengthy three-day Octriotide scans and Cap Tem chemotherapy. In January of 2019, she had her left ovary and fallopian tube removed; it was decided that it was necessary to try to remove at least part of the primary NETs in her lung.
In April 2019, Lisa’s thoracic surgeon attempted to remove the top and middle lobe of her lung. However, the surgery was unsuccessful as the tumour was too interwoven with her arteries. Sadly, testing showed evidence that the cancer had spread to her cardiac fluid. The failure of this surgery hit with a devastating blow, but also raised questions about the quality of Lisa’s care and how her many scans had not revealed that this surgery would not be viable.
Lisa’s recovery from the failed surgery was really brutal, as the surgery had been very invasive and had caused extensive nerve damage. She is still plagued by the after-effects of this surgery, but she has worked really hard to manage the pain and live her life. It has been an uphill struggle.
Following the failed removal of the tumour, Lisa requested radiation on her lung. BCCA performed 21 consecutive days of radiation on her lung, to which her cancer responded favourably. During treatment, she started to experience intense back pain, which necessitated more scans that detected the cancer had spread to her adrenal gland.
Feeling as though her treatment options and her quality of life were slipping away, we decided that the time was right for a bucket list trip. With my parents, Dan and Eileen Smith, as Lisa’s benefactors, we travelled to Scotland with Lisa’s mum, Vonnie, and her aunt, Tammy. Scotland is a beautiful country filled with friendly and amazing people who were kind to us everywhere we went, but our main purpose was to visit the remote island of Barra from which Lisa’s great-great grandmother had emigrated in 1883. It was truly the trip of a lifetime, where long lost cousins welcomed us with open arms. Their hospitality and care made the trip possible for Lisa, whose daily activity was regulated by her pain management schedule, her mobility limitations, and her fluctuating energy levels.
When we returned home, Lisa, pursued treatment options with renewed vigour, determined to extend her life and spend as much time with her children as possible. She was inspired to start a NETs support group for the Vancouver area. She secured a space to meet through the BC Cancer Agency and NETs sufferers came together, grateful for the chance to meet with others who could commiserate with their struggles in accessing specialized treatment for this rare and underserviced cancer.
Lisa started chemo treatments again, but by December she was losing mobility in her left arm and left leg. She set up an appointment with her cardiologist, who told her on sight to go to the hospital immediately. A scan revealed that her cancer had metastasized to her brain; she underwent emergency surgery to remove the tumour from her right frontal lobe (pituitary gland) on January 2, 2020. She spent two weeks recovering in the hospital and managed to regain use of her left hand. Sadly, her left leg mobility has not returned. Lisa needs leg braces and a walker to get around. For any lengthy trips, she is wheelchair bound. These mobility limitations have been especially hard, emotionally speaking, for Lisa, as her ability to hike is forever gone, and she is unable to even walk her children to school, kick a ball, or even stand for longer than 30 seconds. She is unable to cook or clean, tasks that have been taken over by her mother, Vonnie.
In May of 2020, Lisa underwent radiation treatment for her brain and adrenal gland, but in September scans revealed that the tumour void in her brain had filled with fluid. In September of 2020, a second brain surgery inserted a drainage tube. Lisa Was reluctant to undergo this procedure as the recovery from her first brain surgery had been so painful and difficult for her and for her family.
At this time, Lisa began advocating with the CNETS president to push the BCCA to provide PRRT, an expensive and aggressive radiation treatment for NETs, in British Columbia. Her efforts have been successful and the BCCA now offers PRRT, though it is only available for NETs with a primary site in in the midgut/GI tract. Therefore, it is not available to Lisa.
Unfortunately, in May 2021, scans revealed three new cancer lesions on the left side of Lisa’s brain. Doctors immediately targeted all three spots with radiation within two weeks of discovery, but there are also two smaller lesions that are growing, which will have to be dealt with as soon as they are a bit bigger. So more radiation will be required soon.
Lisa is scheduled to have a very expensive and specialized scan called a Gallium-68 scan, which will identify the PRRT uptake potential of her tumours. The access to this scan is, in itself, very challenging to acquire as it is a running as a trial here through the BCCA (http://www.bccancer.bc.ca/health-professionals/clinical-trials/pet-ct-clinical-trials). unfortunately the wait for this scan is well over a year at BC Cancer. Instead, through the generous support of another NET patient’s family, members of her CNETS support group, Lisa will receive the scan through a private company, Initio Medical, in Burnaby.
If the Gallium-68 scan shows that her tumours have adequate uptake, Lisa will be able to apply to Montreal or Edmonton to access PRRT. This would likely have a long wait time and require Lisa to pay for travel and hotel costs. Another option is to travel to Seattle for treatment, where there would be no wait and Lisa would be able to be treated by Dr. Haagen Kennecke, a lung NET specialist. Lisa actually visited him for a consult shortly after her diagnosis. He formerly worked for the BCCA, but resigned after the agency had been too slow to start doing the Ga-68 scans and to secure the equipment needed to do PRRT. Each PRRT treatment in Seattle would cost approximately $4000 US. Patients tend to receive four to six treatments. Patients also need to isolate for five days following each treatment, and are strictly prohibited from being around children or pets due to the radiation levels they might emit.
Currently Lisa is undergoing very aggressive chemotherapy treatment with a drug called Afinitor. There are some intense side effects.
Afinitor is one of the last treatment options for Lisa, outside of PRRT. But regardless of whether she is able to access PRRT treatment out of province or in the USA, it will come at a cost.
Throughout her cancer journey, Lisa has been unable to work. In fact, she has been unable to drive. Her parents have been incredibly generous with their time and their financial support, but Lisa is keenly aware that her needs have forced her parents to push back their own retirement plans.
Ideally, Lisa would like to be able to access PRRT without imposing any further financial burden on her parents. But more than anything, she wants to have a chance to watch her 9 and 15 year old children grow and thrive, especially in their respective sports: Reese, having been with the North Shore’s Flicka Gymnastics since she was 4, is training at top levels; Case, having played with the North Shore’s Lacrosse team and multiple other training teams since he was 6. Both Case and Reese dream to one day obtain a scholarship to pursue their respective sports at elite levels while attending university. They both have the ability and passion to make this happen, and Lisa yearns to be able to help guide them both on their journeys. And, of course, to be their biggest cheerleader!
Lisa and her family are ready for the next part of this ongoing fight, and she is so grateful that so many of her friends and family want to help out. Over the past few years since Lisa’s diagnosis, so many of you have reached out asking what you can do – and now is the time where you can help enable access to PRRT for Lisa. This is what will give Lisa her best fighting chance. Please contribute to Lisa’s PRRT treatment fund.