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!
Stage 4 high grade
hello all,
i was diagnosed 2 weeks ago and I have surgery scheduled for this Monday to remove everything including ovaries. Because I have HGSC they told me that this was the plan and then I will have chemo 3-4 weeks post surgery but I am a complete mess. I got fluid around my lung so there is a drain in place. Has anyone had a similar experience that can help me through this
i was diagnosed 2 weeks ago and I have surgery scheduled for this Monday to remove everything including ovaries. Because I have HGSC they told me that this was the plan and then I will have chemo 3-4 weeks post surgery but I am a complete mess. I got fluid around my lung so there is a drain in place. Has anyone had a similar experience that can help me through this
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@Stayingpositive.....so very sorry to hear of your diagnosis but do what your screen name says...stay positive. i know that's easy to say but you and I are quite similar. I was diagnosed in early 2017 with HGSC 3C. Radical hysterectomy and 6 cycles of chemo. And like you a pleural effusion under my right lung that had to be drained three times before my surgery. The good news is the chemo dries up the fluid and since then no problems.
Click on my picture and you can read more about my journey. But suffice it to say I am so happy you found our community. We are hear for you all the way...with support, information and lots of love. And as you hear the stories of others here, you'll find how you're feeling, what you're experiencing are not unique to you....your not alone in anything.
If you haven't searched the Ovarian Cancer Canada website, do so. There is wealth of information and I truly believe there is power in knowledge. It's URL is https://ovariancanada.org. And, they have a booklet you really should order, By Your Side, that you'll find enormously helpful in guiding you through your treatment. You can order it at: https://https://ovariancanada.org/living-with-ovarian-cancer/support-resources
Once you're out of surgery and feeling up to it, we have a weekly live chat on Thursdays at 1PM. You need only sign in to OVdialogue and click on the Discussion title Teal Thursdays...daytime live chat to join us. It's a great opportunity to connect with your peer group real-time.
The best I can say to you right now is that there have been so many new developments in treatment over the past few years that most of us are living longer and happier lives than ever before. It's a nasty disease..and a sneaky one..but the battle can be won. If I've learned anything it's that I'm a lot stronger than I ever thought I was.
Stay in touch with us. Let us know how you're doing...let us know what we can do for you. Good luck with your surgery next week....you are in all of our thoughts and prayers.
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Thank you so much for taking the time to respond. This forum seems like my only sanity right now. I am sad to see how many women are affected by this terrible disease but comforted to know that I am not alone.1
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Hello, they said the got almost all lesions out with yesterday’s surgery. Anything left would have been too risky to cause damage. They will look into when they will schedule my 6 rounds of chemo which will be 3 weeks apart and possibly be part of a clinical trial. I forgot to ask which chemo. They send everything to be tested but do you know if that changes anything for prognosis if they already told me which cancer I have based on the fluid around my lungs. I am scared to ask doctors because I am not sure if it is the masks but they are all of a calm demeanour no smiles so I get frightened it means something negative.0
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@Stayingpositive So glad you're through your surgery and already up to communicating with us. It sounds like it was a success and the chemo intended, as it usually is, to deal with what they had to leave.
Don't let the "masks" put you off asking questions. Remember that they see cancer, especially OVC, patients multiple times each day so to them we are sort of routine. It's not a mask but just a demeanor that implies to me, it's just business as usual for them. Of course, they all have different beside manners. I much prefer the matter of fact, direct approach. And I'm sure when your first-line treatment is over and begin your journey into recovery they will all be high-fiving along with you. But do ask the questions in the meantime. Worrying about something, fear of the unknown will drive you crazy, especially given human nature makes us tend to believe the worst. So before your next appointment, make a list of everything you need answers to and address them.0 -
Hi Stayingpositive,
Welcome to the club nobody wants to join, I am so glad you have found us as there is a lot of knowledge and experience available to you here. Very good news to hear you are through your surgery, some folks find that is the worst part and for you it is now behind you. Regarding the testing of the tumor tissue they removed, they will be looking into what sorts of genetic mutations they can find that will explain the why and how your cancer cells came to be, this information is useful to your medical team because it helps them to know which of the many chemo drugs available are best for treating that cancer. It is also needed for considering any additional medications post chemo or further down the road should you require additional treatment.
Prognosis is more typically co-related to the stage of your cancer, but thoughts on this are changing as so many advancements in treatment mean that most ovarian cancer patients live a long time now. If the cancer comes back, there are new and many drugs available to keep it in check. Probability of recurrence is also connected to stage, but there are exceptions to everything. It is becoming more and more apparent that every patient is unique in how they respond to treatment. Now that your surgery is complete, your medical team will be able to tell you what stage you are at. In addition to the stage of cancer, prognosis is though to also depend on age, underlying conditions, and how completely they are able to remove the cancer during surgery.
Good luck with your recovery! Bring us any questions you have about your upcoming chemo we will be happy to share our experiences with you.3
