Sorry for the longish post: Hello, I haven’t... - My Ovacome

My Ovacome

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Sorry for the longish post

Tay100 profile image
11 Replies

Hello, I haven’t posted for quite a long time but I do read through your posts when I can.

I really could do with some advice. I found out that I had High Grade Serous 3c in March 2018. I did the chemo then debulking and was NED until early last year when a scan showed some activity in some lymph nodes in my pelvis and by my vena cava. However I have been classed as stable as they hadn’t grown very much at all.

I had my blood test done a couple of weeks ago and when I saw my oncologist she said that my numbers had jumped to 352 in a couple of months. I’m waiting for an appointment now for another scan.

I guess my question is, have any of you had you numbers shoot up like that and it not be a reoccurrence ?

My head is all over the place and I’m scared that it has grown. I don’t remember feeling this stressed and anxious for a long time. I’m trying to be positive but the unknown is so hard.

I know I should be grateful for having all this time without anything happening, and I’m sorry if I’ve offended anyone.

Stay safe and take care xx

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Tay100 profile image
Tay100
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11 Replies
Lyndy profile image
Lyndy

Hi Tay100I had a high ca125 (about 250) for quite a while but my disease was considered stable… this went on for about 2 years. But then suddenly I became symptomatic… it was a recurrence of disease.

Is there anything that makes you think this might be something else? Like inflammation?

What I did learn is that it is often more tricky for them to diagnose recurrence. Hope that’s helpful xx

Tay100 profile image
Tay100 in reply to Lyndy

Hi Lyndy, thank you for your reply. I’ve been quite sore with pain in my pelvis and tummy recently and I’m also really tired but this has been going on a while now. I do have quite a large hernia and also some adhesions so maybe that’s what causing the pain. I think I’ve just got to keep my fingers crossed I guess and see what happens. The waiting is I think the hardest bit

I hope that you’re doing okay with your reoccurrence now? xx

Lyndy profile image
Lyndy in reply to Tay100

I am doing well atm…on Olaparib. Perhaps you do have inflammation from adhesions … difficult when there aren’t clear answers xx

Cher96 profile image
Cher96 in reply to Tay100

Hi Tay100The waiting is the hardest bit. I am waiting to get the result of my ca125 today. It has been creeping up to 343 once I finished chemo and was placed on Avastin. Now I’m on Avastin and oral low dose cytoxan waiting waiting waiting to see if that might have an effect. Getting second opinion this week. Diagnosed March 2021 high grade serous 3c. I was never NED so this can’t be a recurrence if it never left. I would love to know what is happening with you and what your numbers really mean.

Joan (cher96)

chemlcali profile image
chemlcali

Sorry about your reports. It is the day we all dread. Take it one day at a time.

Tezzaa66 profile image
Tezzaa66

I am in exactly the same position as you are my last scan showed nothing but fluid but yesterday my CA 125 was 356 up 200 in 6 weeks spoke on phone to oncologist and she is taking it to the meeting on tues to find out what next. I did ask about pet scan but apparently not done for ovarian cancer only as extremeWishing you good luck and the best outcome xx

Tay100 profile image
Tay100 in reply to Tezzaa66

Thank you! I hope you have a great outcome as well. I’ll keep

My fingers crossed for you andI wish you all the luck in the world to xx

MPee123 profile image
MPee123 in reply to Tezzaa66

I was given a pet scan - number were increasing and ct was clear so I was given a pet which was also clear! Ca125 still increasing! 🙈

Grankidsxxx profile image
Grankidsxxx

My CA125 has been rising from July 2021 On a "watch & wait" two ct scans clear waiting on another one end of February. But I'm getting indigestion & pain in lower tummy. 🤷‍♀️ its living with a ticking time bomb xx Best of luck

Rosalita20 profile image
Rosalita20 in reply to Grankidsxxx

Have you checked your digestive system? Did you have a colonoscopy? Worth a try. Hope the bebest for you.

Ruebacelle profile image
Ruebacelle

Hi well...who knows. Here I had a tumor in an I inguinal node and we zapped it 25 sessions over 5 weeks and it was reduced and continues to shrink. I think most cancer institutions have the latest radiology equipment and there are sites conducive to zapping nodes being one altho in my case we did 4 sessions of carbo to get rid of a wee tumor outside the node once it was gone we proceeded w zapping.Remember our mantra...it ain't over til it's over. OC is now being treated as manageable in many stage 3 cases so stay strong. Love from paris

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