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!
Not fully diagnosed yet
Hi, I haven’t been diagnosed yet have been through a month of super high stress. I went to my doctor at the beginning of November 2020 as I had some extremely small vaginal bleeding which went away after 4-5 days. I am 68, by the way. My mother had died of surgical complications related to ovarian cancer 15 years ago at the age of 89. My doctor told me he would make an appointment for me to see an OB GYN to investigate and in the meantime sent me for a mammogram. After a couple of weeks passed with no specialist appointment, I phoned my doctors office to follow up. I got an appointment with the OB GYN for the very end of the year and also an appointment for an ultrasound . The ultrasound was early the following week. The day after the ultrasound, my doctor phoned and asked me to come in to see him. I have a tumour approximately 22 cm. An appointment was made for an MRI which was done between Christmas and New Year. I saw the OB GYN the first week of January who ordered a CA-125 blood test. It has come back with an elevated reading. I am now waiting for an appointment with the gynie oncologist. By the time I get that appointment, it was be 2.5 months since my initial visit to the doctor. A couple of things are working on my mind. Given the seriousness of ovarian cancer, it seems to me that someone with my family history should be automatically sent for the CA-125 blood test and ultrasound right out of the gate from the initial visit. It was also noted by the OB GYN that my family history was not noted on the requisition for the MRI so he couldn’t comment on where they checked sufficiently to see if there was any spread, if it is cancer. The ultrasound report appears to indicate a very high probability. Through all of this I have had no other symptoms. Now that I know I have a tumour, I am ultra sensitive to how my body feels but apart from the extremely minor bleeding, I would never have gone to the doctor. I am desperately trying not to cross bridges before I get to them, but it is hard. So that is my storey so far. I know there will be more chapters to come
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@Deedee Welcome to our community. I'm glad you found us and reached out and I am so sorry for all the anxiety you're experiencing.
I can tell you that we all have different stories to share but yours isn't unusual I'm afraid. Many of us experienced no symptoms that would have led us to believe a diagnosis of OVC was possible. And, as is history with this disease, our medical practitioners seem to look at OVC as something to investigate after all other options have been ruled out...often from their own lack of experience with the disease combined with symptoms that can usually be attributed to numerous different medical issues. It is good that you're now in the hands of a gynecological oncologist. He or she is who you should rely on for a definitive diagnosis and, if cancer, a comprehensive treatment plan.
I was not unlike you. A scan to assess a breathing problem in my case uncovered a mass on my right ovary the size of a very large grapefruit, and shadows that implied more cancer. It wasn't until surgery that they were able to properly assess the type and extent of the cancer, which turned out to be far less than anticipated thankfully. That said, high grade serous stage 3C. That was four years ago. If you want to understand my story a little better you can click on my picture and go to my profile.
What I can tell you is that never before have there been more advancements in treatment of this disease and as a result, for those who don't achieve complete remission, we are living longer and better lives. I've been advantaged with quality care from two cancer centers, PMH and KGH, and two years on a clinical trial that kept my cancer stable. I"m back in chemo now four years later but looking forward, once again, to achieving a stable state and enjoying the upcoming spring and summer once again. Of note, my cancer has not spread beyond my abdomen or into any organs.
If you haven't already, go to the OCC website. It holds a dearth of information on our disease, survivor stories, details on new developments and a wonderful series of videos. There, you can order a booklet By Your Side that you'll find very helpful navigating treatment...if it is OVC. Most importantly, rely on your oncology team and ensure ongoing two-way communication with them.
Finally, we're all here for you for whatever you might need...information, ideas, suggestions...just a shoulder to lean on. Keep us posted and do let us know how we can help as the need arises. Finally, you may want to join our live online chats every Thursday at 1pm EST. Just sign in to OVdialogue and click on the Discussion topic Teal Thursdays...... to participate.
My thoughts and prayers are with you.......
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Thank you so much for the response. I will check out the OCC website and also the Thursday meeting0
