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!
Introduction
I really don't know how this forum works. I've just been diagnosed with ovarian cancer with tumours in the omentum and peritoneum cavity. I feel really old compared to some of the women here. I'm 81 and have been very active all my life. I feel lost and realize the road ahead will be massive. Just wondering if it is all worth it at my age.
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Comments
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@Savvy
Welcome and sincere sorrow to hear your diagnosis has brought you to this group. It sounds like you are in the "in between" world. It is a hard place to be and I feel for you.
If have not already then kindly click on the link to obtain your free copy of By Your Side. https://ovariancanada.org/Living-with-Ovarian-Cancer/Support-resources
It is a very useful resource.
You can also join us tomorrow at 1pm for the Teal Thursday chats we have. You will find that in the discussion thread. Type in what you want to write, post it and then hit the refresh icon at the top to see other responses.
Have you met with your Oncologist and discussed treatments and possible outcomes as of yet? Or are you sitting in the I have cancer and are waiting for your appt?
Do you know what type you have high or low grade? They are the more common types.
Regardless it is tough on oneself and to determine the "path" you want to go. All I can tell you is that with my own diagnosis and reading is: this is yours...you steer the bus and decide what you would like to do given your options. Ask lots of questions and get your answers. You can also type into the search bar anything you may want to know that perhaps someone has posted on this site. Some have been diagnosed and have success stories, others have recurred and recurred again and sometimes again. This is so individual based on so many factors.
If you have any specific questions, feel free to ask and know it's a safe space to do so.
There is no "right" decision there is only "your unique own" decision. You will find your answer, I am positive of that. Glad you found us and have reached out.0 -
Thank you so much for your insight. Meeting with oncologist on Monday the 5th. Have biopsy scheduled for the 28th. Don't know the grade but because it has spread to the omentum and peritoneum cavity I would assume stage 3 or 4. It is all very new to me. I'm extremely uncomfortable as I look 7 months pregnant. My quality of life is very limited. I was hoping they would offer surgery first to make me more comfortable before chemo and radiation.0
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@Savvy
Your welcome. You sound very uncomfortable physically right now. Are you being managed with any medications right now? It can be scary sitting where you are as you go through many "what ifs" and scenarios. Most important is to get you more comfortable than you are feeling and your team will get you there.
Sometimes (case by case) ladies receive chemo before surgeries and then more chemo afterwards, while others have surgery and then chemo. Others still can find out surgery is not an option and then are given what options are left including trials etc.
I was diagnosed last Feb with Grade 3C primary peritoneal cancer that was found when I had a GI bleed. This is treated the exact same as Ovarian Cancer and I have low grade. I underwent debulking surgery, hysterectomy and had part of my omentum removed. I did 6 rounds of chemo after that. I was deemed NED (no evidence of disease) in Sept of last year. The beginning of this year I started having symptoms and found out in June it had recurred. There aren't as many options for LGSC and I am currently on 2 trial drugs. I also have a mass that is affecting my ureters (tubes going to the kidneys from the bladder) and the right is severe and left is mild. I have decided at this point not to do anything about that as my pain is managed. I work with a palliative doctor and know if these drugs fail, there are currently no options left. So I do understand and have been reading, reflecting and preparing for the inevitable that will come at some point. That is my situation. I just happen to be the rarest of the rare when it comes to the type and how it is acting.
There are many good people making many great advances with this disease. The combination I am on is one of those such findings just this year. There are down sides to it but I am doing my best to get through them.
You will feel better when you have more info and if you are uncomfortable tell your team/doctors before the 5th. There may be something they can do.
Hoping you can join our chat tomorrow.0 -
Thank you so much for your insightful comments. I'm sorry to hear about your recurrence. I will try to join the chat tomorrow. I will know more what is ahead of me when I meet the oncologist on Monday. Thanks again for your kind words. It really has helped. I'm glad I joined this group0
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@Savvy
Good Day and a chilly one at that. Checking in to see how you are after your visit this past week. Anything you need help in processing or understanding? How are you doing otherwise?
I feel you may be in this stage of things which I do know I have been in and probably many others. It is a quote from a book entitled Die Wise by Stephen Jenkinson
"That is where fear lives, in the not yet, the not now, the not me."
So well said with so few words especially as we face the knowledge of a diagnosis, recurrence or no treatment left depending on what stage one is at.
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