Recurrence symptoms : Wondering what others felt... - My Ovacome

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Recurrence symptoms

SuzanneKau profile image
14 Replies

Wondering what others felt at recurrence and when it’s time to mention. Originally I had abdominal pain which was relieved with ibuprofen. Then I discovered large lump which turned out to be in omentum/peritoneum. (PPC 3C 1/17). Had surgery 1 year ago follow by 6 sessions carbo/taxotere. I am now having twinges of pain on both sides of lower abdomin but pain doesn’t require ibuprofen. Still healing? New growth?

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SuzanneKau profile image
SuzanneKau
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14 Replies
Katmal-UK profile image
Katmal-UK

Hi Suzanne. I have had twinges, pain quite often, got checked, no recurrence. both recurrences (and at diagnosis) no symptoms, go figure. What I did find though is that if I focused on a twinge it got worse ( not that Im suggesting thats what you are doing) and once I got checked out the twinges disappeared. If you are concerned, and its so easy to be concerned lets face it, please go get checked out to put your mind at rest. Sending you a hug, Kathy xx

SuzanneKau profile image
SuzanneKau in reply to Katmal-UK

Thanks Kathy. I expect it is just continued healing. I’m still pretty new at all this. I think I’ll wait a little longer and try to relax.

WorriedHusband profile image
WorriedHusband

Hi Suzanne,

Doesn’t sound like recurrence to me.

Signs and symptoms of ovarian cancer recurrence include:

Persistent abdominal bloating, indigestion or nausea

Changes in appetite, typically a loss of appetite or feeling full sooner

Pressure in the pelvis or lower back

Urge to urinate more frequently

Changes in bowel movements

Increased abdominal girth

Lethargy, fatigue or lack of energy

Abdominal pain or swelling

Some people don’t have any recurrence symptoms. They just find out after a ct when CA125 triples from its baseline value. It usually takes about 3 months after a rise in ca125 for tumors to show on the ct or mri.

Good luck 👍

ScardyCat40 profile image
ScardyCat40 in reply to WorriedHusband

Not everyone gets those symptoms at reoccurrence and it can depend where the cancer spreads to as well.

My first reoccurrence I started getting breathless then I became more constipated but that was it. It was also the same with my second but I was also very fatigued and a lump in the fatty layers of the skin on the left side of my hip. My third time I got backache on the lower left side from a nodule in the peritoneum and I also noticed another lump in my groin from my lymph nodes.

I would say any new or unusual symptoms for you mention them to your CNS.

Saleh123 profile image
Saleh123

When my wife recurred, the bloating with ascites was the indicator and the CA125 doubled up every 3 weeks or so. Sounds like you have not got that sympton, should be alright. But double check with CT Scan to ease your worries.

Yoshbosh profile image
Yoshbosh

Hi Suzanne,

If the pain carries on, you should probably speak to your doctor or someone from your medical team - it doesn’t hurt to be checked out, and it will put your mind at ease. Are you due a routine review anytime soon? Maybe see if you can bring it forward a little?

I didn’t have any symptoms at all at recurrence. In fact, I felt better than ever.

Vicki x

SuzanneKau profile image
SuzanneKau in reply to Yoshbosh

Spoke with nurse. I have a check-up on 2/21 and am allowed a CT at 6 months so I’m going ahead with one plus a CA125 test. Doctor had ordered neither but I’ll feel better having them. Some day I’ll settle into all of this but I’m not there yet, sigh...

Yoshbosh profile image
Yoshbosh in reply to SuzanneKau

I takes time...to be honest, I doubt many of us have really settled into our ‘new normal,’ we just live with the uncertainty and worry each day!

Caroles1 profile image
Caroles1

Agree with all the ladies, you know your body and what is normal, I have twinges until I get checked, find out Im ok and then they miraculously they disappear after my checks.

But, if you are at all worried seek advice,

Love Carole xx

January-2016-UK profile image
January-2016-UK

I would get the pain twinges checked out. Within three months of NED and a CA-125 of 35, I had a CA-125 of 1290. Only with hindsight did I recall a very slight intermittent twinge in my right pelvis towards the back. A CT-scan showed I'd recurred in the lymph nodes.

It may be nothing, but why worry?

SuzanneKau profile image
SuzanneKau in reply to January-2016-UK

Thanks. I requested a CT scan and CA125 for my next visit and they have been scheduled. I’ll feel better just knowing. Recent research has shown that length of time to when recurrence is determined has little baring on outcome but I just want to know. Only in my first year and low grade generally recurs in year 1 or 2 soooo. Plus, I’m nosey!

Lily-Anne profile image
Lily-Anne

My recurrence symptoms were occasional pin prick type pains and bags under my eyes!

LA xx

Nancy222 profile image
Nancy222

Hey Suzanne,

I'm coming to this late as I'm searching the site for others with low grade serous cancer.

I'll know for sure on this coming Thursday (March 22/18) but my recurrence is in the liver. I was first diagnosed in Feb/Mar 2016. Had a complete hysterectomy and bowel resection in March 2016.

In late December of 2017 I knew something was up. My recurrence systems were extreme fatigue and darkish circles under my eyes. Also some intermittent back pain. Oh, and some minor liver pains but that could be my imagination :) My CA markers have gone up a little, nothing to gasp at.

I wanted to let you know that what really helped my abdominal pain (that seemed to linger far too long) was identifying that I had a small hernia and meditating to podcasts that I found on the Kaiser Permanente website. The meditations were a game changer for me, because I didn't realize I was holding stress in my stomach/pelvic area.

Take care and let us know how things are with you.

SuzanneKau profile image
SuzanneKau in reply to Nancy222

Thanks Nancy. I’m still having twinges but had my meeting with Gyn/Onc. My CT scan is clear and my CA-125 has risen a little. I run a VERY low CA-125 that was only 43 before surgery and chemo (yet My dx is 3C). We’ll see what numbers are next time. I’ll take your advice regarding holding stress in. I know I do that!

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