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!
ca125 numbers
Comments
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Hello @dmas125 - welcome to the site. We hope you and your sister will find much support here.
Testing and monitoring can vary depending on your condition, your province and your DR or Oncology team. CA125 may not be a reliable indicator for some. Again, a discussion with your DR team on how or why may be necessary.
Peace of mind and knowing we are being heard and looked after is what we all want for sure.
It is important to discuss with your oncologist and perhaps your family DR to find out "the plan" for you.
You can find the details on detection posted here:
http://ovariancanada.org/About-Ovarian-Cancer/Detection
And find more information and view past webinars here:
http://ovariancanada.org/events-support/go-online-for-support/webinar-series
Do you both have a copy of the support guide - By Your Side? I will also direct message you.
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I live in Calgary, Alberta and receive treatment for my recurrent Stage 3B high-grade, serous ovarian cancer at the Tom Baker Cancer Center. My CA125 was tested in July, 2015 and was 655, and it dropped to 12 following total hysterectomy, removal of two large ovarian tumors, and 6 months of carbo/taxel chemo regimen. My Oncologist orders my CA125 tests every 3 months. She explains that this is not the end all and be all of cancer surveillance, but one tool that she keeps in her tool box. I was doing very well for 30 months, with my highest CA level being 14, but in July, 2018 it rose to 20, which made me panic. My Doctor, the head oncologist of the gyne clinic here in Calgary, actually gave me a "talking to" - we have a very healthy therapeutic relationship and I trust her, but by October my CA125 was up to 275! My intuition as a patient and my ability to be an "empowered ovarian cancer patient" saw me get a CT scan within 48 hours, and we initiated second-line treatment with carbo/caelyx within the week. If I had not had the CA125 test regularly, as scheduled by my Oncologist, this recurrence might have been missed as my cancer is "seeded" in the peritoneum now, and not a solid mass. I encourage your sister who has moved here from Saskatchewan to keep asking for this surveillance tool, and to get a "second opinion" if necessary. I understand that the test is expensive, and that AHS may be reluctant to fund them, but this is OUR life we are dealing with here. Best of luck to everyone living with, and thriving with this unfortunate disease.2
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Any of you ladies in remission still do CA125 tests? I've been NED for over 2 years and at every 3-4 month checkup I've been doing CA125 blood tests as well as a pelvic exam. Recently my oncologist stated he wants to just do pelvic exams from now on. I haven't had a CT scan since 2017 when I finished treatment. The CA125 test was never a good indicator for me (before I was diagnosed I was still in the normal range), but I'm a little nervous to just rely on pelvic exams and wait for symptoms. I'm just wondering if this is standard protocol? After I asked my oncologist about it, he told me that early detection for reoccurance has no benefit (although personally I disagree...if my cancer is back I'd like to know asap). Anyone years out of finishing treatment still get CA125 tests done?0
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Hello @jiselle16.. glad to hear you are NED. Yes, it is difficult to wrap your mind around that situation of test vs no test.
Each province/ DR team and person's situation can be so different.
After discussions with the medical and support team, I found the pre recorded webinars below very helpful - there are 3 that deal with recurrence issues
https://ovariancanada.org/events-support/go-online-for-support/webinar-series
I hope this is of some help for you.0 -
I have been confused about CA 125. Diagnosed July 2017 with high grade serous carcinoma stage 3c/4. Prior to primary treatment I was around 4000. It went up to 8000+. And it came down after surgery and first chemo to around 18. Cancer recurred 6 months later. I have now just finished six rounds of carboplatin and paclitaxel (once every three weeks). CA 125 is now 20.
I’m not sure what this all means but the CA 125 seems to reflect what is happening with the cancer so it gives me comfort to see it so low.1 -
@judek unfortunately I don't know what my CA125 was before my hysterectomy - the doctor didn't suspect cancer based on the test results prior to surgery. By the time I had my first blood test at Juravinski my CA125 was 35. It now hovers between 8 and 10. The test is not a be all and end all, but it is an indicator.
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