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!
First Recurrence, please help.
Hi, diagnosed Feb 2020 stage 4 high grade serous. 6 rounds of chemo later and no surgery as spread to my abdominal walls. Had 6 month check up Monday. Starting to feel abdonmial pain. No CT or blood test BEFORE the check up. After internal and external exam, she is sending me for CT and plan to start chemo again in January. Im scared to death. I can't sleep. All I can think of is after CT she sees its all over and nothing they can do. Genetic testing has come back both negative. meaning chemo only option at this point. I live alone, 47 yrs old and yea....Covid. I don't know what to do. Just wish I could sleep without such dark thoughts. Every little pain, I think, ya won't make xmas....Please help. Any words of encouragement is needed. Thank you ladies
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@tubs17 I am so very sorry to hear all that you're dealing with right now. I so wish I could promise you everything will be fine, but we all know that's not realistic. There is no magic formula to make it all go away that works for everyone. I can tell you there are many here on this site who've gone through 1, 2 even more recurrences and still enjoying productive lives. Don't get ahead of the CT......fear of the unknown is our undoing as it makes our imaginations go to the darkest places. You really don't know the extent of any recurrence until that CT is done. So try your best to be patient and think positively....that it's treatable and this time they'll get it under control if, in fact, there is a recurrence.
If it's any consolation, I just started a course of chemo for recurrence on Wednesday. I'm high grade serous 3C, diagnosed in 2017. Surgery, chemo and clear (or at least stable) until the end of 2018. Qualified for a unique drug trial that shrunk the recurrence and kept me stable until about a month ago. So I understand what a lousy Christmas present it is to find out you may need treatment again. I used to call the trial drug my miracle. But who's to say you can't have more than one miracle.
I'm not sure where you're located but assuming you're being treated at a cancer center or major hospital. Do they have a social work department? If you haven't reached out for support, please do that. The best thing I ever did for myself was admit I needed someone to help me emotionally. KGH where I'm treated connected me to the most wonderful social worker two years ago and we speak every month; more frequently if needed. She's been amazing support keeping me balanced and in the right perspective.
Go to the Ovarian Cancer Canada website https://ovariancanada.org. There are lots of resources and information there to tap including a booklet called Still By Your Side for those experiencing recurrence. And I also suggest you go to Contact and connect with the OCC Regional Director for your province. She is likely to have more resources she can suggest that are local to you.
You're not alone. Our OVdialogue community and the OCC staff are all here for you. Please keep us posted. Reach out any time and let us know what we can do for you. If you need real time contact, join our live chats on Thursdays at 1pm EST. Just sign in and click on the Discussion topic "Teal Thursday" to be admitted into the conversation.
I wish I could offer more, other than to say I hear you, I feel for you, and I'm sending all my positivity your way.
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Hi Tdubs17
So sorry to hear of the distress you are feeling about the recurrence of ovarian cancer. I am in a similar situation as yours, I'm facing a recurrence of this disease only a few months after completing frontline treatment. I was diagnosed in December 2019 with HGSC Stage 3. At that time, I was told that my cancer was also growing in the lining of my abdominal wall. This is common with stage 3 and 4 ovarian cancer.
This disease ravages our minds as much as it does our bodies, but that at least, is one thing we can learn to control. I find it helpful to distract myself if negative thoughts start spinning out of control on me, with pretty much anything, a movie, walking in the sunshine, a good book, even housecleaning, even at 3:00 am...anything is better than laying awake allowing worst case scenarios to haunt your thoughts.
Another really helpful tool is to learn about this disease and focus on the many success stories others have to share. There have been improvements to treatments over the past ten years that now put women dealing with this disease in a position of having a chronic illness but not necessary an immediately fatal one. There are many chemo drugs, hormone therapies, parp inhibitors, immunotherapies, these drugs can be combined in different ways to create many different treatments for ovarian cancer. We might find that we have to undergo treatment often, we hope for long stretches of time between treatments, but we can enjoy productive, happy lives during both. Women are surviving years now after initial diagnosis thanks to these advances and ongoing treatments.
Breath, think positive thoughts, count your blessings and pray for strength to take on this second treatment course just as you took on the first one. When it is over, you could very well enjoy a long stretch of time afterwards to live life, if the cancer comes back a third time, your medical team will be at the ready with another treatment regime that will bring the cancer under control again.
I wish you peace and if you are not able to overcome the anxiety of the situation right now, please reach out to your medical team for assistance.
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I have had two recurrences and my last chemo treatment did not put me in remission but the cancer was stable. I just started getting pain in my abdomen after I eat and now I’m scared that the cancer is back. I’m not sure what I should do. I haven’t told anyone yet. I just turned 60 and have a grandchild soon to be born. I’m not ready to die and I’m not giving up the fight but I’m really scared.0
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Thank you all for the kind words. The pain come and goes...im retaining fluid but my breathing is ok, just full feeling and hard to eat. I have a counselling appt today and look forward to just talking. Thoughts are better.
Love2run...you have told someone...US. Thats a start. I too didn't want.to tell anyone, but then told immediate family and they were GLAD. I wanted to keep it from them cuz...well you know Christmas....but ..know they are there for you as we all are
love2run said:I have had two recurrences and my last chemo treatment did not put me in remission but the cancer was stable. I just started getting pain in my abdomen after I eat and now I’m scared that the cancer is back. I’m not sure what I should do. I haven’t told anyone yet. I just turned 60 and have a grandchild soon to be born. I’m not ready to die and I’m not giving up the fight but I’m really scared0 -
Hi everyone! I finished chemo in Oct 2020 but my CA 125 is rising again and I’ve got a CT scan scheduled in 2 weeks. I’ve been pretty despondent since Tuesday which is when I learned about my rising CA. Reading these posts has given me reason to feel hopeful again, that if it is a recurrence they might be able to get it under control.2
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Hi @tdubs17 @love2run @BeamBlossom How are you all doing? Just checking in to say hello. My CT scan was pretty clear but CA is climbing. It recently jumped from 350 to 850 in 2 weeks. I’ve got a meeting with the oncologist on Tuesday to retest CA and talk about potentially switching treatments. I’m feeling pretty nervous but trying to stay hopeful.0
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I’m doing ok. At my three month checkup my CA125 had dropped, still not in normal range but it went down to 51 so I am hopeful it will continue to decrease. I am feeling good and found out my stomach pain was due to overuse of my abdominal muscles. I’m doing physio to help with that as the second surgery really seemed to do a number on the abs. Next check up is April 20th and I’m keeping my fingers and toes crossed.1
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Hi, finished my 2nd treatment of Caelyx last week. Having no side effects which is good. I am bloated which makes it hard to eat and breathe. Tried to get drained twice, but they could only find pockets and couldn't do it. Its the disease that is causing the discomfort and nothing to drain. Chemo helps with the bloat for about a week which is nice. I have CT scan in March after 3rd treatment. My CA125 is over 14000. Im terrified at the number....but I have to go by how I feel and not concentrate on that number. Not sure if this treatment working or not.1
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Hi Ladies, I too had recurrences, even after a HIPEC surgery and 6 cycles of chemo. The chemo seamed to help a bit so I started again in November 2020, had 2 cycles and had an allergic reaction so they had to stop the chemo and now, I am in limbo....still trying to stay positive, next follow up in April, fingers crossed 🤞1
