Community Connection: Ovarian Cancer Canada is looking for volunteers! Could you help?
OVdialogue – consider joining our team in the role of Community Champion. Over a few hours each week, you would be part of a team that helps connect people, support conversations and are thought leaders for OVdialogue. This is your opportunity to give back to those who have/continue to support you through the tough times, share your unique experiences, and help celebrate successes. For more details of what this entails, please reach out to @Mfallis (mfallis@ovariancanada.org).
OVdialogue – consider joining our team in the role of Community Champion. Over a few hours each week, you would be part of a team that helps connect people, support conversations and are thought leaders for OVdialogue. This is your opportunity to give back to those who have/continue to support you through the tough times, share your unique experiences, and help celebrate successes. For more details of what this entails, please reach out to @Mfallis (mfallis@ovariancanada.org).
Ovarian Cancer Canada is thrilled to share that we have some exciting updates on the way for OVdialogue. These enhancements are designed to strengthen our community and make your experience even better.
Stay tuned for more details, and feel free to share your thoughts below. Let’s make this community even stronger!
Stay tuned for more details, and feel free to share your thoughts below. Let’s make this community even stronger!
International Gynecologic Cancer Society - Survivor /Caregiver Virtual Summit September 26
Fearless
Legacy
Hello All,
I thought I would post the link for information and to register for the Summit if anyone is interested. A half day (8am CT to 1pm CT) of valuable information and insights that you can attend free of charge. I will be "going" myself but thought others might have an interest.
https://igcs.org/women4women-summit/
Cheers,
Fearless
I thought I would post the link for information and to register for the Summit if anyone is interested. A half day (8am CT to 1pm CT) of valuable information and insights that you can attend free of charge. I will be "going" myself but thought others might have an interest.
https://igcs.org/women4women-summit/
Cheers,
Fearless
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Comments
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I attended the Summit Saturday morning. It was four hours, online, of very fast-paced, high-level presentations by a number of medical and other professionals in the field. Thought I'd give you a quick summary of my own takeaways as I interpreted what I heard. If anyone else attended the Summit and has takeaways to add, please feel free to do so.
* About 100 participated on the Zoom platform; patients, caregivers, and medical professionals and other 'interested' professionals; a number of Canadians, Americans, some from Africa, South America...it was an interesting and diverse group, although smaller than I had expected.
* Focus was gynecological cancer, not just ovarian and much time spent on cervical, endometrial, uterine and breast cancer
* common element; all cancer has genetic origin but modified by environment
* research focus strongly leans to treatment options for OVC; still no reliable screening algorithm identified but getting much closer
* OVC currently sits at 300,000 cases worldwide; 85% relapse rate; broken down into 4 categories - serous, mucinous, clear cell, and endometroid; 21% are BRCA positive; other relevant genetic factor is HRD (Homologous Recumbent Deficiency)
* Purpose of Maintenance Therapy is to keep the efficacy of the main therapy and prevent recurrence; main therapy considered to be surgery, radiation, chemotherapy or any combination of these
* Most common maintenance therapies are the PARP Inhibitors (Olaparib, NIraparib, and Rucaparib) as the most commonly used and Bevacizumab (Avastan); in first line treatment applied for 2 years; in recurrence treatment continued until such time as there is evidence of progression or toxicity becomes an issue...in other words no end time when fully effective in treating a recurrence. Either treatment requires that the patient is platinum sensitive.
* interesting to note how many women had never had the possibility of trial discussed with them; in the US they struggle with ways to "sell" participation in trials resulting in trials being cancelled for lack of participants; that trial criteria in some locations are so extensive so as to automatically eliminate candidates from some diversity categories; the US seems to be a clinical trial hub where many candidates are required to travel huge distances and sometimes relocate temporarily to participate.
* Fascinating presentation by Dr. Nathalie McKenzie at the American College of LIfestyle Medicine on an 8 week intensive program called Whole Life Integration she developed to support survivor integration back into their lives post treatment (https://advancedintegrativewellness.com/about/dr-nathalie-dauphin-mckenzie/) and a very down to earth and interesting presentation by an Australian, Janine Porter-Steele on Life Beyond Cancer Sexuality.
* And finally a shout out to the IGCS Global Advocacy Network and the World Ovarian Coalition and the work they are doing to bring gynecological cancer to the forefront of attention and importance on a worldwide basis.
* There were two plenary sessions at the end which were collapsed into one discussion covering the elements of telehealth, benefits and otherwise, and expectations of electronic application becoming more and more even post Covid. It was short and not particularly informative.
* This is the first time the Summit has been run virtually and recognition that it enabled many of us to participate who would not have been able to due to travel requirements to attend personally; they will factor that into program delivery moving forward.
I'm personally looking forward to the upcoming OCC symposium at the end of October; my expectation that topics will be covered at more depth and more relevant the Canadian health system. Be sure to participate in the upcoming OCC survey. I believe it will be out to us in the next week.
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