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!
Survival - would love to hear some uplifting stories
I was diagnosed stage 3C inoperable almost a year ago due to spread within the abdominal cavity and I'm also platinum resistant. They gave me months to live. I'm coming up to one year on Taxol and Avastin. Last week I asked my treatment oncologist if my prognosis has changed. He said the average survival of your type of disease is one year but you responded well to T & A so far, with the big tumors shrinking, so we'd put you at the upper range of survival. I calculate that to be one more year at the most. I asked about surgery again because the tumors are uncomfortable much of the time and he didn't say no - will refer me for another consult in the spring. I have two genetic mutations that might offer me hope in a trial down the road. I just feel a bit ground down and hopeless right now and could use some 'good news' stories of survival over the stated odds. It's just so freaking depressing to hear things like this but I needed to have an idea of my expected timeline as I make some life changes including moving house. I want to beat those odds so badly to have more time with my family. Also does anyone know what the percentage risk of spread is during surgery? Right now I'm at stage 3 - my biggest fear is I'll get my (sub-optimal most likely) surgery and then have the surgery spread the disease to become stage 4.
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@BellaDonna1959
I think you are doing amazing and look at your story and where you were sitting a year ago. It also sounds like treatment is working and instead of a definite "no" for surgery, you are being referred to determine "if". That is huge in dealing with our disease.
The questions you pose and are wondering about are things I believe many of us contemplate and wonder and wish we had a cryatal ball so we could see into the future. At Hospice we kind of asked the same question wondering if we would be "kicked out" or "asked to leave" the program at some point. The answer to that is no. One person in the program has surpassed their expiry date a couple of times now which is amazing. So they have the attitude to keep on living their life the way they want to. For the rest if us in the group it is awe inspiring. Same as with your story...I find it awe inspiring.
I am not sure if they (surgeons) know a percentage to what you are asking,from the information that I aware of. I know thatfor myself the risks don't outweigh the benefits to perform surgery and the risk of spread is great if they do so in my case. That would be an excellent question to ask at your appt though.
News like you expressed can be difficult to process and to find the "silver lining" in it. This is your journey and your feelings. I myself, feel every day I have is a gift as long as I can communicate with my loved ones and have a sense of presence. Others may feel different. There is no right or wrong and wish you the best as you continue along. When you do get your answers, have processed the information and are ready to share, I am sure the ladies (and myself) would like an update.
In the meantime, whatever you are doing, keep doing it you are walking a very inspiring journey that we can look up to.
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Thanks for this.0
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@BellaDonna1959
Reach out to Ovarian Cancer Canada or Wellspring. They can connect you with surviving ladies who are willing to be contacted. I did early on. I spoke to my OC contact a couple of times just to let loose.
Monthly Teal Tea is Feb 21 and they have long term survivors pop on now and again.
Ovacome (British version of OvarianCanada.org) under the Healthunlocked app also has a number of long-term survivors still showing up. Fairly active site.
Would be nice if Wellspring Oakville started hosting monthly mtgs in person again...virtual thing wearing thin on me.
Having been diagnosed April 2020, can attest this has been the most isolating three years to be faced with all this.
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