Today, we spoke to Karen Gorp, one of our colleagues from Melanoma Patients Australia about why she thinks Early Detection is important for Melanoma patients and her hopes for iToBoS!
Karen, Thank you for agreeing to speak to us!
1- Can you tell us something about yourself and your relationship to Melanoma?
I grew up in the Northern Territory of Australia - a tropical area of Australia - with fair skin. Sailing and horse riding exposed me to many blistering sunburns and I had my first bcc (basal cell carcinoma) removed at 24 years old. I was living in Adelaide, South Australia when I was diagnosed with cutaneous melanoma in late 2011 when a mole was removed from my right shoulder blade. A year later I found a lump under my right arm and a fine needle biopsy confirmed melanoma. I had an axillary clearance and 6 weeks of radiotherapy and discovered Melanoma Patients Australia which had a great support group I joined. Within 3 months my disease had progressed to stage IV. I had 3 boys 4, 9 and 11 years old and I refused to let them grow up by themselves. There was no treatment at this time (mid 2013) other than chemotherapy. I had wild-type melanoma and so was not eligible for the early targeted drug trials. I heard about a trial for an immunotherapy and called the pharmaceutical company to find out where trials in Australia were, the nearest was in Melbourne 730 km away. I was accepted onto the trial and travelled fortnightly to Melbourne by plane for two years. I was very lucky for many reasons but the main one was that with very few side effects I seem to have had a complete response to the treatment.
When I realised I was responding to the treatment I offered to take on facilitating the Melanoma Patients Australia Adelaide support group, having lost most of the group to melanoma. I have since become a board member of MPA, speaker and co chair of the MPA Consumer Advisory Group and very recently taken on the role of Chair of Cancer Voices South Australia. Melanoma Patients Australia - Reducing the impact of melanoma. Involvement – Cancer Voices South Australia (cancervoicessa.org.au).
2- Why is the early detection of Melanoma so important in your opinion?
Personally, better and earlier detection of melanoma would have identified me as at risk and provided screening that may have identified my melanoma before it spread. I had three wide local excisions before I was told they had found clear margins, which was obviously incorrect in hindsight. More generally, too many people die from melanoma, young people who have much to live for. Treatments are not always successful and they are expensive. Most importantly, we know the best cure for melanoma is an early diagnosis.
3- What do you hope iToBoS will deliver for Melanoma patients?
In Australia access to dermatologists is difficult and expensive for most people. Our GPs have trained themselves but are not the experts we need to identify and follow up on high-risk individuals. AI assisted diagnosis will make early diagnosis accessible to all and will be an efficient means of introducing screening programs for high-risk individuals.
Thank you so much for your time!
For more details, you can contact us.