Community Connection: Ovarian Cancer Canada is looking for volunteers! Could you help?
OVdialogue – consider joining our team in the role of Peer Support Volunteer. 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 ([email protected]).
OVdialogue – consider joining our team in the role of Peer Support Volunteer. 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 ([email protected]).
Recurrence
Hi my name is Carol Lee. I was initially diagnosed with stage 3 ovarian cancer in October 2019 and after surgery and 5 months of intensive treatment, we thought we were “good” for awhile. Felt every bit normal until mid August when cramps returned and after a CT scan last week was given a recurrence diagnosis. Obviously something didn’t work but my CA 125 marker was 6 in August. We are trying to keep positive but is very difficult. Covid certainly doesn’t help. Anybody have any suggestions or happy stories. A lot of the posts on this forum seem to be old?
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@clmcinnis so sorry to hear of challenges the past year. But there is hope. I was diagnosed and treated through 2017 for stage 3C high grade serous OVC and recurred late 2018. At the time the manufacturers of Olaparib had just launched a new trial of their drug and my profile fit the criteria so I began treatment in the form of two pills twice a day. It shrunk the recurrence by 75% in the first four months and since then, while I will probably never be cancer free, the tiny tumours remain stable while I continue with the drug. Many others will attest to success through chemo or through surgery. We're all very different so treatment protocols differ. But lots of us now with recurrence and surviving long term. Rely on your onocology team to provide options available to you, based on your unique profile but do ask about trials. It seems something new launching all the time now. And don't give up hope.....
This is wonderful group to engage with for information and support. Think about joining one of our live chats...weekly on Tuesdays at 7pm CT and Thursdays at 1pm ET for immediate feedback. Ovarian Cancer Canada also has a very helpful booklet on recurrence I can recommend. https://ovariancanada.org/Living-with-Ovarian-Cancer/Recurrence for more information on recurrence and to order the booklet.
Regardless please keep us posted on your progress and, Carol Lee, reach out anytime we can be of help.0 -
Thanks fearless. It’s been a rough two days. This does give us hope.2
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Hello @clmcinnis - welcome to the chat and we hope you'll find the support you need here - the ladies have all been fabulous at sharing their experiences and stories.
You can also check out the recorded webinar series ....
https://ovariancanada.org/Living-with-Ovarian-Cancer/Webinar-Series
Be sure to scroll all the way down as there are several about recurrence.
Did your medical team give you some treatment options or a plan?
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Hello @clmcinnis and welcome to OVDialogue - we're glad you found us. I have found this site to be a great forum for support, insight and information on ovarian cancer, treatment and care. Though there are women here at different stages of their journey, we all have one commonality. Check out the posts, though some are older, the information will be helpful. As @Fearless said, try to attend one of the online chats on Tuesday or Thursday.
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Thanks I will try to do that. During the first round of treatments I wanted nothing to do with anyone else who had ovarian cancer. I wanted to surround myself with healthy people thinking that would protect me from my future “fears”. Now I’m realizing I have to take more charge in my own health. I’ll take any hope where I can get it.1
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@clmcinnis - I was the opposite - I wanted to talk to others with the same cancer - unfortunately when I was diagnosed, OVDialogue was not around. Not only do you have to take charge, you need to talk about it. Healthy people frequently don't know what to say - people will avoid the subject because they don't want to upset you or say the wrong thing. My husband was wonderful, but he wasn't going through chemo. He didn't have the fatigue, the pains...though we were both bald for a while... For a long time my mind was consumed by cancer, treatment , will I have a recurrence, and recovery. It's taken a long time, but the help from a local support group (to begin with) and then OVDialogue have made a huge difference.
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Hello everyone
I am new to this site, and I love all the encouraging words I found here.
I was diagnosed in 2016 with stage 3b low grade serous OC, had surgeries and chemo, tests galore! Lately, I experienced a severe allergic reaction to Carboplatin, so the chemo was stopped. My oncology team told me they will again keep an eye on me, and I have a follow-up in person visit with my oncologist in April. I am on Anastrozole now, my last PET/CT showed no new disease, but the existing lesions are there, one has not changed, one has increased in size and activity. My Ca125 has been high and increasing lately, last reading 461. I feel like a ticking bomb!
They told me in 2019 that this cancer is like a chronic disease, and will keep coming back....
I am just wondering if anyone has/had a similar experience? Any other treatments? Has anyone gone through immunotherapy? Diet changes? I feel so helpless!0 -
@Sylviequebecbc I am so glad you found our community and hope we can be of help and support as you navigate through your journey.
I was diagnosed in 2017 but with high grade serous...3C. For me, the cancer has recurred too and clearly the make up of the disease for me is such that I will never be cured...it will recur from time to time. But these days there are so many new drugs and treatments to help delay recurrence...and to treat recurrence...that we are now living longer and better lives than ever before.
If you haven't already, I suggest you order the two booklets that Ovarian Cancer Canada provide (in hard and soft copy)..By Your Side and Still By Your Side. The both have lots of information on the two stages of treatment...frontline and recurrent...that might help inform you and answer many of your questions. I found both very helpful guides over the past four years. Their website as well has a wealth of information from personal stories to videos you might find encouraging and helpful. This Thursday OCC is holding the first in a speaker series, this time on the topic of clinical trials that you might find informative as well. You can view the OCC website at ovariancanada.org. Order the booklets at https://ovariancanada.org/Living-with-Ovarian-Cancer/Support-resources. And you can use this link to register for the speaker presentation on clinical trials: http://noca.convio.net/site/Calendar?id=101023&view=Detail&fbclid=IwAR3wlZ-uA-BCZu67Oj4om9YIfWKhEdjH-EnM6gD1KB8lfbVHKr9UWXDE1xs&_ga=2.107597894.519536456.1613841778-81262107.1582745669
Finally, you don't need to feel helpless...although what your feeling right now is normal and something most of us have experienced. This community is here for you. Feel free to reach out anytime you have questions...or just need to let off some steam. We do have a live online chat on Thursdays at 1pm EST that you might also find .. fun. You need only sign in to OVdialogue and click on the Discussion : Teal Thursdays..... to enter the chat. We'd love to have you join us, any time. In the meantime, don't lose sight of how strong and resilient you have already been.
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Thank you Fearless, I cannot believe it took me this long to find this site!
I followed the links you provided, thank you!
It is amazing how important it is to connect with women who have similar experiences than our own. I really appreciate the sharing videos.
Thanks again!2 -
Hello Everyone, I am almost 6 years cancer free from Serous Carcinoma stage 1c. I pray for everyone that has been through this experience. I am back to work - a different kind of work. It is more physical not mentally taxing. I thank my oncologist team at RVH Barrie Dr. Leah Jutzi for saving my life such a kind and gentle smart soul. Please have positive thoughts to your self, be around positive happy people - ones that fill your soul. Love you all!1
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@beachgirl Thank you for sharing your story. It's always uplifting to hear of survivors and, in your case, just validates the importance of early detection and the need for more research into more effective diagnostic tools to make that happen, along with better awareness on the part of patients and their general medical care to the warning signs.
Wishing you many many more cancer-free days.
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