Symptoms of Recurrence: Hi all, hope you're... - My Ovacome

My Ovacome
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Symptoms of Recurrence

Kouyate
Kouyate

Hi all, hope you're keeping well. I've been ned since 2017, but everyday I wonder if and when OC might return. So I was just wondering if you've had a recurrence, what symptoms did you get that prompted you to go and get checked? I just don't know what signs I'm looking for. Many thanks x

42 Replies
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Didn’t really get any symptoms (which is also a bit worrying!) mine was just with a rising trend of CA125...it only went up to 30 but apparently it was the trend and not the number.

Are you having symptoms that are making you worry? Are you checked regularly? I did an immunotherapy trial (which they halted because the whole trial wasn’t working) so I was being monitored every 2 weeks x

Kouyate
Kouyate in reply to Doglover1410

Hiya Doglover, thankyou for your reply, yes i'm still being checked by my onc every 4 months and have a ca125 blood test just before each visit, just being a worry wort I guess as if it does come back I don't know where or how! x

Doglover1410
Doglover1410 in reply to Kouyate

Hard isn’t it? My husbands philosophy...no point in worrying until we have to.....I know he’s right and I try to remember that when I’m having my wobbles! x

Hi, hard question to answer as despite 2 recurrences and even at diagnosis I had no symptoms. I have my CA125 checked regularly and for me this is a good indicator. I try not to worry (easier said than done!) until I have something to worry about as I feel that just wastes my time. Big hug xx Kathy xx

I think we all worry, even if we pretend not to!

I was told that it was back nearly two years ago.... it wasn’t, I waited and waited for symptoms, went on an early holiday because I thought I would be on chemo but it was a false alarm. I try to remind myself of this when I start thinking that a niggle could be ‘it’.

Nothing is easy about living with such uncertainty. We must try to be good to ourselves and not beat ourselves up about the occasional meltdown xx

Kouyate
Kouyate in reply to Lyndy

Ur right Lyndy, even now fir no reason at all i'll have a good cry then dust myself off and carry on 😊 Glad to hear it wasca false alarm x

Hi,

Rising CA125 levels (over 8 months) and (only in retrospect!) digestive upsets (diarrhoea & urgency). I was referred to a gastroenterologist, had an endoscopy.....but when I started my chemo, it cleared up! So in retrospect, it was a symptom! It’s not easy is it? I had an inkling something was happening & asked my GP for a CA125, which led to a scan, which led to watch & wait.

Finally a diagnosis of a recurrence (growth of nodules). I am now on chemo.

Hope this helps.

Linda x

Kouyate
Kouyate in reply to Seasun36-uk

Hope your treatment goes well Linda xx

mupash
mupash in reply to Seasun36-uk

HI- I SEE SO MANY POSTS REFERRING TO THEIR "SCANS" ARE YOU TALKING ABOUT CT SCANS OR PET SCANS? CT SCANS ARE NOT THE BEST. MY CT SCANS WERE CLEAR

AND I INSISTED VERY LOUDLY TO HAVE A PET SCAN BECAUSE MY 125 WAS CREEPING UP EVERY MONTH BY HALF A POINT, POINT UP TO ONLY 26 FROM 7.5. THE PET SHOWED THE RETURN. THE CT SCAN SHOWED NOTHING AND THE DOCTOR TOLD ME IT WAS ANXIETY. I TOLD HER WHEN SHE HAS CANCER SHE CAN BE ANXIETY FREE AND RELY ON CT SCANS.. I WANTED THE PET SCAN. I GOT IT AND THERE IT WAS. SOMETIMES YOU HAVE TO BE YOUR OWN ADVOCATE.

LEE

Kouyate
Kouyate in reply to mupash

Hiya, glad u got sorted but wots a pet scan plz? X

mupash
mupash in reply to Kouyate

HI -

A PET SCAN USES IV RADIO ACTIVE SUBSTANCE, GIVEN IN AN IV. THEY THEN DO A SCAN WHICH TAKES LONGER THAN A CT SCAN. THE RADIOACTIVE MATERIAL "STICKS" TO ANY MALIGNANT CELLS AND SHOWS UP AS BRIGHT WHITE SPOTS ON THE SCAN. HOPE THIS HELPS.

LEE

Kouyate
Kouyate in reply to mupash

I've had scans in the past with something called a "contrast" and another time wen i've had to drink something x

FtMwithOC
FtMwithOC in reply to Kouyate

I think that's probably just a CT. They have you drink a ton of clear fluid and then give you like a 5 minute scan...I've never had a PET either.

Hi Kouyate, i had no symptoms but i was under 4 monthly checks also. Bloods were normal but a suspicious looking cyst was picked up on a scan. I know it’s hard not to worry and stress but you’re being checked regularly so if there was to be anything untoward it’s picked up pretty quickly. If you have any concerns i’m sure your team would see you sooner as well. 🙂

I had an unsettled tum, nothing dramatic, just a bit achy and gripey long before my ca125 and scan confirmed a recurrence. I ignored it, convinced it was just a reaction to eating bread.

We're all different. Try not to let worry about what may not happen spoil a perfectly good today. Life is too precious for that. Be vigilant but not paranoid.

💐

Just been diagnosed with first reoccurrence- a few weeks before had lower back pain, urgency to poo, tummy upsets. I think symptoms spend where the cancer comes back but likely to be in abdomen area. Mine are quite similar to original ones. Hope that helps. Jane x

Kouyate
Kouyate in reply to DouglasPouch

Hope you get better soon xx

I get checked every year with cat scans, chest, abdomen and pelvic, every 3 to 6 months CA 125 test run . and see Dr.my Dr that I see all the time in my on gyn Dr and surgeon. My main issue is constipation and stomach pain. I've never had a reoccurance and cancer free since 2014.best wishes for you. Liz

Thankyou all for your lovely comments and reasurrance, it really helps to touch base with ladies who know exactly where i'm coming from and don't think I'm just wallowing in self pity xx

Rising CA125 and after that noticed gradually increasing ascites.

If CA125 is a good indicator I would stick with that. It can drive you mad looking at your belly for minute changes (I do that sometimes, or else refuse to look at it all, just in case!) or feelign for lymph glands, noting twinges etc.

The bastard will either creep up on us unexpectedly or maybe perhaps not at all. If nothing else it makes us appreciate our time :) All the best to you x

Hi. I had definite symptoms when initially diagnosed. I’m on my 5th recurrence. With the second, I experienced low backache & a general feeling it was back, & was right. The other times I had no idea. And my ca125 is never raised (last month it was 8) & they go by scan results. Di

Kouyate
Kouyate in reply to Di16

Hi Di, that's a worry isn't it when we go by the CA125 and it's normal and yet all the time it's back :( And 5 times for you, you must be one tough lady to go through all of that so I wish you all the very best x

I went to a dance class and couldn’t even complete a short routine. I just knew.

Kouyate
Kouyate in reply to Neona

I've just taken up doing Zumba once a week, so hoping that will help me detect if anything's wrong. Hope you get back to your dance classes x

Hi there, I've often wondered about this myself as I had no symptoms when a first got OC. As it is now 6 years on the worry still doesn't completely go away though I try to bank the worry it till I need it. Every little ache and pain, I wonder if this is the start of it again or a different cancer. Having the BRCA gene hasn't helped either.

All we can do is live our lives, be as healthy as possible and carry on regardless. I still have my CA125 checked as I'm on a trial but when this finishes next month my doctor has agreed to do the test every year with my usual checks. In saying that my doctor has just retired but I'll talk the new one in to cooperating. lol.

All the best to you and try not to worry too much it will only make things worse. (look who's talking lol)

Best wishes,

Zena

Kouyate
Kouyate in reply to ZenaJ

Lol, I know, we're our own worst enemy sometimes aren't we! x

Do you have follow up visits and CA test regularly? When I recurred it was due to my ca doubling from 11 to 22. Still in normal range nonetheless a nodule was picked up by catscan. I had no symptoms and actually felt great. This Oc is a tricky bastard.

Hope you never recur. Stay well bit do get checked just for peace of mind.

Xox

Marisa

Kouyate
Kouyate in reply to Mptelesca

Still having my ca125 along with a check up with my onc every 4 months so I know they're keeping an eye on me, but just can't help worrying sometimes. Hope you're doing okay x

Mptelesca
Mptelesca in reply to Kouyate

I hear ya. Guess worrying has become our way of life. But, as long as we're being checked routinely, we should be fine. I'm doing well, thank you.

Stay strong and healthy!!!!

XOX

Marisa

Kouyate
Kouyate in reply to Mptelesca

You too Marisa ♥

Hi. Originally and on recurrence I had a pain in my lower left pelvis. My CA 125 is not a marker so I have to have symptoms.

Kouyate
Kouyate in reply to delia2

Initially my ca125 was around 1200 before surgery and now 4 years later is down to 11 so hoping mine will continue to be a good indicator for me x

Hello Kouyate, Try and remain positive as hopefully you will be one of the lucky ones and it won't come back. I was diagnosed in 2016 with OC stage 3b. I had 3 years free and then began to have tenderness in my upper abdomen and some discomfort. I did not feel ill at all. I initially thought that I had pulled a muscle at yoga or hill walking. My GP is very vigilant and took a blood test which showed a raised CA 125. A scan then showed up a few small nodules in my abdomen. In January I completed 6 cycles of carboplatin and responded well. My recent scan was clear and today I started on olaparib. I am very worried about side effects but some positive comments here about it especially from Kathy. Rosie

Kouyate
Kouyate in reply to Rosiemd

Hi Rosie, mine was 3c in Nov 2016 so i know i'm very fortunate not to have anything come back yet but on the other hand think it cud be anytime now!! I'm really pleased that ur all clear again tho x

I didn’t have any symptoms. The recurrence showed on my 3-monthly scan. Hope this is helpful.

Kouyate
Kouyate in reply to juliamillen

Hiya, just shows how sneaky oc can be 😔 x

I’ve just recurred and it was only my ca125 rise that alerted me x

Kouyate
Kouyate in reply to MH500

Hi sorry to hear its back, so i wish u the best x

I don't remember the symptoms when I had my recurrence but I just knew. My CA125 was creeping up over 8 months from 7 to 36 but the oncologist only agreed to a CT scan when it rose to 46. The scan showed 3 tumours 12.5cms 10.5cms 5.5cms so they must have been growing a quite a rate over 8 months. The tumours shrunk by 50% after the first scan but I'm not very happy about the situation as the recurrence obviously started 6 months after the chemo finished and I'm now deemed carboplatin resistant. I have just finished 6 months of carbo/caelyx and have an appointment with my oncologist this Thursday for the dreaded final results of my latest CT scan. I'm telling you all this because I feel I was left far too long without a scan. I will never accept such a delay again. Be vigilant Kouyate and keep a close eye on everything. I pray you're ok for a long, long time. Hopefully for ever.

Loads of love

Angela xx

Hi Angela, thankyou for sharing your story with me. I'm sorry that you were left so long, as if we don't have enough of a battle getting diagnosed in the first place :( I think that's why I made this post because I just want to make sure I spot anything if it comes back, as I know everyone says listen to your body, but I have that many aches and grumbles anyway that it's hard to spot when something is really wrong! I'll keep my fingers crossed for Thursday for you and hope that you get some good news ♥ x

Thank you for the good wishes. My scan results were good in a way but the chemo hasn't shrunk the tumours 100pc but quite a lot. I still have the tumours but have now started with Niraparib. 4th day today and no side effects yet. The oncologist told me this wouldn't get rid of the cancer but may hold back a recurrence. I have to go back every Thursday for another 3 weeks to check my CA 125.

No CT scan apparently which worries me. I will ask them about that this Thursday. I'm not really very confident with the CA 125 as a marker as you can imagine.

Thanks for replying and all the best to you.

Love Angela xx

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