in ovarian cancer limbo

[Lily2023]

Grateful to hear everyone’s experience. I’m Stage 3c, had major debulking, 6 rounds carbo/doxil, in remission about a year, on Zejula with minor side effects. The big challenge for me is more psychological/emotional than physical at this moment. The uncertainty weighs on me and my carer.

[Heidels]

Lily, I was diagnosed in 2019 with 3c as well, had the entire debulking, cervix, appendix removed as well. I have been taking Zejula now for over 3 years now. So far, things have gone well. Blood results are good, I C-scans are ok and I really dont think much about it until I am due for the scan again. I get nervous then and worry. I go now every 3 months for the scans . Longer you go being NED, the farther they stretch out your scans and blood work . I was a wreck when I found out I had OV. I had just lost my husband unexpectedly 4 months prior so I was a mess !! I have calmed down since then and keep telling myself, it wont return. One can only hope that . Do not let it control you and drive you nuts. No one knows what lies around the corner. Longer you go and are NED, the better you will feel.

[Lily2023 in reply to Heidels]

Heidelberg, thank you so much for your message. First, my condolences on losing your husband. ❤️ I can’t imagine how difficult a time that was for you.

It’s very encouraging to hear that things are going well three+ years out. For better or worse, I have read the 5 year survival statistics, and that leaves me fearful that recurrence could happen any minute. It’s not good for mental health. Not letting it control me can be hard, but it’s a good goal.

I also appreciate knowing you get scans every three months. I had to ask to have them every six, rather than 12. For me, knowing outweighs the anxiety of the scan.

I feel validated knowing others have felt the way I feel.

[Heidels in reply to Lily2023]

Hi, Hope you are doing well. I was getting blood work done at the strt every week and after a few months, they made it longer, just as they do now with my scans. I go every 3 months and have blood work done twice during those 3 months. I I dont even think about it until I am due to go back for another scan. The Ca-125 always makes me a wreck. I get scared when I go to my portal to check that test result. I do take Zejula but often wonder how anyone would know if that is doing anything because I never had a recurrence so how would they know if it did work IF I ever get a recurrence?? There is nothing to base that on. I guess the longer you go, the better chances one has. Hopefully your doctors will keep up with future scans and blood work being done on a regular basis. I was checked for the BraCa gene but I was negative. No one in my family has ever had OV. Hang in there and dont waste time fearing it and thinking you will die.... I thought that at first and then told myself, I will get through this and so far, it has been good. Hope all the best to you.

[Lily2023 in reply to Heidels]

At first I was very discouraged, but I’ve made progress with that. About knowing whether or not Zejula works, my oncologist points to one of the big studies being done. It looks like the data show Zejula adds months in remission. Maybe even years? I spoke with one researcher who said they’re seeing a lot more women make it to 5 years and beyond.

It’s that old joke about elephant spray - it may not work, but you don’t see any elephants! (Cancer humor!)

[Lily2023 in reply to Heidels]

Um, that’s “Heidels.” I blame auto-correct. 😄

[Sophieluvs]

Hi Lily and everyone,

I was diagnosed in October of 2017 with SHGC OVC Stage 3C. Did you notice the date? I set a initial goal of five years and I did it! I believe you can do it too! Now it’s on to the next five years.

I’ve been thru a major debulking, 2017. I have Lymphoedema on my right side, as a result of lymphoid removal. Managed well with PT. I’ve only technically been in remission for about 6 months, that was in 2018. Since that time I’ve been on every treatment available.including Zejula and Tamoxifen.

My current situation, I’ve had one infusion of the brand new OV drug Elahere. Very interesting drug I suggest looking it up. My chemo team and me me me are very very excited to see the results. I’m scheduled for 8 treatments, one every 3 weeks.

Sorry if I’m rambling. But I think this is important. I was scheduled for surgery 1-17. For removal of 2 larger growths on the outside of the sigmoid area of my colon. This would have also involved a temporary colostomy bag. My surgeon had a complication with his patient before me and asked if I wanted to cancel or go ahead. I followed a gut feeling and canceled. Rescheduled for the following Friday. In the meantime my Oncologist scheduled a PET scan. Additional growths were found. So my Elahere began asap. If I would have had the surgery the infusions would have been delayed, during the surgery recovery period. I’m so grateful for this series of events.

My Guardian Angel works very hard for me. The delay was meant to happen. The PET though not originally scheduled-was meant to be.

What I hope I have expressed is for us to trust in our strength. Know we are not alone. Illness isn’t our fault. Sometimes things change for a reason. Be grateful.. There’s always someone who’s situation is worse than ours -pray for them. This is our life journey and we need to enjoy this life. Express on the outside what we want to mirror on the inside.

Love and hugs beautiful flowers, treat yourself well. ❤️

Remember, there’s more to our life than a button front shirt If you know you know. ❤️

[Lily2023]

Sophieluvs, I’m very grateful for your post, for several reasons. I appreciate knowing that you’ve made your five-year goal (congratulations!). With all the uncertainty of this disease, it’s encouraging to know that five years is really truly possible.

I also am glad to know about Elahere. When I asked my surgeon about recurrence, she said, ‘Then we treat it.’ But I wasn’t sure what that might look like. I see that life does go on past recurrence, with options.

I’m curious about PET vs regular scans. When do we get to have PETs? I’ll ask my oncologist.

Most of all, thanks for your morale boost. Yes, this is our life journey. As hard as it’s been to accept that, it changes my appreciation of my world.

Treat myself well? What a concept! I’ll try it. Thank you! 💖