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!
Anyone else surgery set-back? Opened up then nothing done due to unexpected amount of lesions?
Back home from hospital. They were not able to do the debulking surgery or the hysterectomy once they opened me up. There were too many lesions over the organs and tissues to remove it all safely. So they did a biopsy and closed me up. so all the pain from the incision (staples) and post-op gas, constant diarrhea and very little gain. I'm so discouraged and depressed. Their plan B is to treat it all with chemo (4 rounds) starting April 14th and hope that the tumors shrink enough to try surgery at a later date. My cancer 'appears' to be some hi-grade serous (responds well to chemo) and some low-grade serous (doesn't respond to chemo as well) and possibly some lo morphed into hi so still a lot of confusion and fear. Just trying to recover from the surgery and hang on to some hope. Has anyone else here experienced this sort of setback? Cancer definitely won this round. So it's stage 3 ovarian possibly 3C - in the omentum, peritoneum, lining of the diaphragm, on the outside of the bowel, intestines & bladder. Thanks.
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@BellaDonna1959
Sorry to hear how complicated your case has become, although I suspect others here have had similar situations. Each of us is different so unfortunately no cookie cutter approach to management of our disease, even though they start with a standard of practice and then adjust from there.
My own case was fairly straightforward fortunately but before surgery my surgeon explained my CTs weren't very clear. They knew I had a large tumour on my right ovary for sure but there were shadowy images that led them to believe the cancer was far more extensive, even to needing a bowel resection. So his approach was to open me up, see what was visible, and if manageable get rid of it and on to chemo to take care of what else there might be. If however it turned out to be more extensive and complicated then he would close me up, administer 3 rounds of chemo of reduce the amount of surgery required, do the surgery and then back to chemo for another 3 rounds. The latter was Plan B and for me, fortunately Plan A worked. The cancer was far less extensive than they had expected. That said, his Plan B mirrors what you're going through so I suspect it not that unusual to take that approach.
As for cancer winning this round, I'm sure that's how you feel and it can be a pretty dark place to be. Try to shift perspective. At least they have a much better idea of what they have to deal with and your treatment moving forward will be targeted to addressing that. This journey unfortunately is one where we have to accept one step at a time and have patience with the process and the experts. Darn hard to do a lot of the time though and I know it was nice for me to have this forum to reach out to with my frustrations when I had them. Use it any time and for any purpose.
I'll be thinking of you and hoping for a good outcome down the road. Stay strong as best you can and know there is an army here behind every step you take.
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Thanks for this. It helps to know they are following a protocol.0
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@BellaDonna1959
the same happened to me. I was diagnosed December 2020 with high grade serous 3C. When they opened me up they decided it wasn’t safe to proceed. I had 3 rounds of chemo which worked well and then a successful debulking, followed by more chemo. I know it sucks and it’s disappointing to wake up to that news feeling discouraged. I went in expecting a different outcome. But it’s better your medical team takes a safe approach. And they now know what they need to treat and how. Stay hopeful and strong.1 -
@ purplestar - It was such a letdown and so much pain from the incision and gas - oh my God - horrible - for so little. But I've overcome the disappointment and I'm hoping for a good Chemo outcome.
Thanks for sharing your story - it gives me hope. Were they able to get it all in round 2? 0 -
@BellaDonna1959
They got it all in the second surgery, down to microscopic levels. Of course there was more chemo after surgery. I finished chemo June 2021 and then started the maintenance drug Zejula (a few chats on here about Zejula). Have you attended any of the Teal Tea? It’s been helpful to connect with others and hear different (and very similar) experiences.0 -
I will look into Teal tea, thanks. Good to hear that they got it all-ish!
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