As a part of our Faces of Courage series, we are featuring a patient or caregiver story each month. Each one of our members has a unique story to tell, but they all reflect the intrinsic courage of those who face the challenges of cancer head on, with dignity, strength, and passion for life.
Our Patient of the Month for July is Robert Cabion. Here is his story:
Sue & Robert Cabion, Victoria, Australia
I was diagnosed on September 2018 after seeing a doctor about pains in my lower abdomen. A CT scan proved the worst thing for me. I could not believe I had cancer. I was super fit, playing competition tennis, bike riding, jogging, walking etc. I stopped work immediately and activated my disability insurance. I did not feel I need the extra pressure of work whilst trying to sort out the path forward for this rare disease. My oncologist immediately put me onto imatinib. This worked in killing the tumors that had developed in my lower abdomen.
Interestingly enough my oncologist did not perform a mutational test. I did not realise this existed at the time. I found out about mutational testing via the Life Raft Group. I was after more information about this cancer and so turned to the web. There is an abundance of information, too much, it was overwhelming. I then came across the Life Raft Group and contacted them via email. We then had a follow conference call and I felt I had another group of carers that could assist me. I now also represent the LRG in Australia for any Aussies that need further support.
I followed up with my oncologist with mutational testing and it proved that imatinib was the correct course of action. Around Christmas of 2019 one of my tumors showed signs of mutation and began to grow, very slowly. It was then decided to have an operation in May 2020 to remove all of my tumors. The surgeon was fantastic and had clean cuts of all tumors. His opinion was I should be OK for a long time; I hope he is right. Since the operation I have been clear of cancer.
Coping with GIST
It’s not easy. I’m always thinking about it. That’s the hardest part. So, I try to stay busy.
Advice for Fellow GIST Patients
Don’t give up. Keep doing what you enjoy. I know it’s sometimes difficult but if you keep trying it will get easier. There is a lot of research going on behind the scenes. I hope one-day immunotherapy will provide the miracle cure.
Hobbies I Enjoy
Tennis, bike riding, electronics, Slot cars.
Live and enjoy each moment as if it’s your last.
Each member story reflects the individual patient’s experience. GIST is not one disease, but a family of diseases and each patient has a unique set of symptoms and manifestation of the disease.
Criteria for Patient of the Month
- Patient must be a member of the LRG GIST Patient Registry
- Patient is an active member of the Patient Registry, continually providing medical updates
- Patient’s record should be at least 80% up-to-date
- Patient has GIST Patient Registry Online
- Patient must agree to provide consent to share his/her story to our GIST community on our website and social media
Criteria for Caregiver of the Month
Caregivers are an important team of family and friends. They allow a patient to depend on them for support through their difficult journey as well as help with various tasks such as cooking, housekeeping, transportation and so much more. In conjunction with Life Raft Group’s Patient of the Month, we are showcasing Caregivers of the Month. We want to hear stories of the selfless supporters that stand beside our GIST warriors.
Interested? Contact Sahibjeet Kaur, LRG Patient Registry Supervisor, for more information: firstname.lastname@example.org