MESSAGE FROM MUM AND DAD
Matt called us from the hospital and said “The doctors would like to include you in this call”, my heart sank.
The doctor explained that they had found three polyps during Matt’s colonoscopy and they were treating the largest one as cancerous until proven otherwise. At that point my head started to spin and I had to try really hard to concentrate on the rest of the call.
We soon found out in a consultation that the two largest were cancerous tumours.
It has been difficult coming to terms with Matt having bowel cancer at the age of 25 and this is something we never, ever thought would happen to one of our children.
For those of you who don’t know us, Matt is our eldest of two adult children. He has a younger sister, Megan and a beautiful and super supportive partner, Ash.
Matt is currently taking a break from his university studies until his treatment is complete and his work is very supportive with his situation and needing to take time off for treatment and screening checks.
The next few weeks involved lots of appointments and information, all of which was very overwhelming.
After a visit to his medical oncologist and lots of chats, providing extensive family history, and tests, Matt’s cancer meets the rare criteria needed to attempt a promising new treatment using immunotherapy. If successful, this may eliminate the need for chemotherapy and the complications associated with radiotherapy and surgery. This drug (new for the treatment of bowel cancer) will cost us $60,000 as it is not yet covered by the PBS in this scenario. Please read on to find out more about his journey.
On September 19th 2022, Matt had a colonoscopy due to concerns from symptoms of bowel cancer, particularly due to the extensive family history. His grandfather and great grandfather, Jim Chambers and Robert Chambers, were diagnosed with bowel cancer at ages 61 and 47.
The results revealed 30mm cancerous polyp on the upper rectum, 10mm cancerous polyp in the rectum and a 6mm polyp in the hepatic flexure. This was incredibly hard and shocking news for us to take in. Each day since has been very tough, especially when we’ve had to let our families know and prepare for the next several months for treatment and recovery.
Following on from the colonoscopy, the colorectal surgeon organised for Matt to have a flexible sigmoidoscopy, which is a screening operation. He also organised Matt to see the Radiation Oncologist to discuss the pre-surgical radiation treatment needed to shrink the cancer. He outlined a treatment plan where he would have to have:
- 4-6 months of Chemotherapy
- 5 weeks Radiotherapy with a low dose Chemotherapy tablets
- Surgically remove 20% of the affected bowel, rectal lining and reconnect ends of the bowel. If there are complications from this surgery and the ends of the remaining linking cannot be reconnected, then this could mean permanent disability of the bowel function. This would result in Matt having a permanent stoma bag.
The medical oncologist has suggested using immunotherapy for Matt’s treatment case scenario as the genetic linkage ticks the specific criteria that are required for this treatment.
A recent study in June 2022 from The New England Journal of Medicine found that immunotherapy treatment is suggested to be effective among people with this specific genetically derived type of rectal cancer Matt has.
In this study, all 12 patients that underwent immunotherapy treatment had a complete clinical response after 6 months, with no evidence of tumor on any diagnostic test. At 12 months, none of the 12 patients had required chemotherapy, radiotherapy or surgery and none had disease progression or recurrence. If you are interested, you can view the paper here.
As an experimental treatment, Pembrolizumab, the immunotherapy drug, is not yet covered by Pharmaceutical Benefits Scheme (PBS) in our scenario and would need to be funded entirely upfront. Pembrolizumab costs $6,000-$7,000 per dose, every three weeks. This medication cost is capped at $60,000 for the course of treatment.
This doesn’t include the frequent MRI scans and the treatment of other complications of autoimmune disease flare-ups that may arise. We request on behalf of Matt for any support during this period of time.
We would like to invite you to be part of our journey. Each and every donation is truly appreciated. If you are unable to donate, simply sharing this GoFundMe can go a long way toward helping us.