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!
High Grade Serous 3C
Diagnosed Sept 2019 with High Grade Serous Group 3 C. I have received 3 rounds chemotherapy, then cytoreductive surgery, then 3 more rounds. Also have had colostomy prior to first chemo. They are investigating as to whether I am a good candidate for reanastomosis. Just wondering if anyone out there is in this category. I am currently 7 weeks post final chemotherapy. I say final but I realize it is not the last chemotherapy in my future. I responded extremely well to the protocol. My CA 125 last week was 11 and path report was as good as it could be considering my diagnosis.
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@Cecile21, welcome to OVdialogue. I am assuming you're a fairly recent member? If not, glad to see you reaching out to the community. There's a wealth of experience here to tap for sure.
I am also High Grade Serous 3C (2017), although likely really 3A or B since they discovered metastasis to my colon that was expected didn't exist. So while I had been prepped for a colostomy to occur as part of my surgery that didn't happen. Hopefully though you are a candidate for the reanastomosis. Both my father and my husband had colon cancer. My dad in his 80's. For him, the wait was a year before the reanastomosis could be done and even then, given some other medical conditions, he wasn't give much chance of surviving the surgery. He still opted to have it done and was fine. My husband, on the other hand, had the entire sigmoid removed and the colon resected simultaneously using, what was experimental then, laparoscopy. And he's fine. So wishing you the best on that front.
And congratulations on your most recent results. It does sound like your response to chemo was very positive and excellent to have that in your back pocket should more treatment be needed down the road. Good luck moving forward and hope you'll continue to reach out or share your experiences with this group.
Big virtual hug.....
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Thank You @Fearless . I am somewhat apprehensive about the reanastomosis. Good to hear about your dad and husband. Also encouraging.
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Welcome @Cecile21 - thank you for sharing your update. Hope you are feeling well now that you are done the chemo session. Hoping over time, there are other chat participants that will share their experiences about colostomy and reanastomosis.0
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Hi @Cecile21, congratulations on completing treatment. I hope that you get your anastomosis. I did not have to have one with my cancer surgery,. Although that was the question that my gyne/oncologist asked me that if it were necessary would I consent to it. I don't think I realized how serious it all was until after all the surgery and treatment was done. So I will send all positivity your way so that it all goes well for you.
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Thank you for your feedback. Actually my colostomy was done first on an emergency basis. That was how they found the tumour.
Interesting to note that was Sept 2019.
In May 2017 I had had a colonoscopy which was negative.0 -
@Bluebird I just realized that I have to identify you so that you are aware of my reply above. Still finding my way around .0
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@Cecile21,that's perfectly ok..I have the same issues..I'm still trying to figure out this forum as well..or...I forget and I blame it on my chemo, menopause...(that's a whole other topic) that is interesting about a negative colonoscopy..maybe you didnt have the cancer then..I was told by my oncology team that my ov cancer had probably started growing 6 to 12 months before I became symptomatic. So quite a fast growing cancer. Anyways...no matter how we all came about ov cancer..it sneaks up on you until its later stage or by happenstance it gets found when they are investigating for something else. It would be good if we had some early detection and screening it would make it easier maybe.1
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@Bluebird, I posted a new comment a few days ago about a new screening protocol almost ready to launch. Here's the Link to the Montreal Gazette article on it....https://montrealgazette.com/news/local-news/grant-will-help-muhc-researchers-move-cancer-test-to-clinical-trial-stage
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Hi hi everyone, I’m new to this site. I was diagnosed with in 2019 with high grade serous 3C. I had chemo prior to Cytoreductive surgery,the outcome of the surgery was suboptimal followed by 8 rounds of chemo. In April of this year I was started on Zejula, 300 mg daily. My CA 125 has been increasing since July, I am currently at 165. I had a CT scan abdomen, pelvic last week and there was no evidence of cancer. I have a follow up bloodwork and 3 weeks, I’m very nervous, has anyone had a similar experience.0
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@bluelady welcome. So glad you found us. In fact you just missed our live chat....so flag Thursdays at 1pm EST moving forward. Would love to have you join us.
I am also high grade serous 3C, but early 2017. One round of surgery followed by 6 cycles of chemo and NED for over a year before they found a recurrence. Although caught very early and have been on Olaparib ever since...almost two years now.
From my own experience, i had some vague symptoms....bowel mostly but not usual for me, so they began closer checking of my CA. It rose slowly over a couple of months but it wasn't until I hit the 500's that they scanned me again and found a couple of very small new tumors. Qualified for an Olaparib trial and been on that ever since. That was early 2019,
It sounds like your medical team have surveillance well in hand. The rising CA is really only an indicator that closer inspection might be appropriate but by no means a definitive indicator of cancer. All kinds of things can set it off. I had a little surgery a few weeks back and suddenly my CA was 1221...I thought I was going to faint. But told the inflammation as I healed from the surgery is likely what the test responded to. Go with the surveillance plan your medical team have. It sounds like they're on top of it. And if you do have a recurrence, it's not the end of the world. Many can be treated with further surgery....or chemo...or PARP's. Lots of gals I know of have recurrence once and even twice and are now cancer free.
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Thank you for your support and encouragement. I will try to keep optimistic. I will definitely attend next Thursday’s live chat.0
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@bluelady Wonderful. Look forward to having you join us. All you need to do anytime from 1pmEST onwards on Thursdays is click on the Discussion title: Teal Thursdays......and you will automatically enter live chat. In the meantime if there is any information or support you need, just open a new Discussion to reach out to us. We're usually pretty good about responding same day or within 24 hours. Glad to have you part of our family.....0
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Hi @bluelady..welcome. to the site..I hear you being worried with an increase in your ca125...theres always that hanging over us..a reoccurrence...maybe the rise was a hiccup...let's hope for you...all is ok..we were just talking about the new drug Zejula...hows that going for you..are you in a study with that?0
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@bluelady...as @Fearless - Vol Mod said.....your team is on top of your results and treatment...they have your wellbeing in their best interest...now enjoy Thanksgiving and turkey if it's on your menu...sending good thoughts your way..
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Hi Bluebird, thank you support. I’ve been on Zejula now since April as part of a study, I had minor issues, constipation, abdominal pain. In comparison to chemo, it was great, I was able to enjoy the summer and resume some of my activities. Now my fear is that I’ll be going back to chemo.0
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@bluelady let your medical team advise the best course of action. It may be to stay the course, it may be chemo but not necessarily right away if nothing is yet showing up on the scan....could even be a new trial out there. I know it's scary when you think you might have it licked and it seems it might be back again. Stress doesn't help, although I know easier to say and harder to do. But try to get some enjoyment out of Thanksgiving....the rest will come in time. You can't control what's going on inside of you, but you can control how you react to it. So get yourself well prepared for you next visit...list all the questions you need answered so you can make informed decisions about what's next.
I can tell you my Olaparib clinical trial, which I've been on almost two years now, is still working even though my CA125 has been slowly (other than that wild blip last time) rising since the summer. Scans show nothing has changed so I'm still on it. Yet I assumed the same as you...I'd be off it by now and back in chemo. We're just keeping up the regular monitoring and when it comes time to do something else...maybe never...we'll all figure it out together.2