Bloating but no rise in CA125

Hoping for some advice please. I've had bloating and a bit of abdominal pain in the past few weeks. Pain is very mild. I've had my bloods checked and ca125 is 9 so nothing untoward there.

Has anyone experienced this ? Relieved there is no rise in markers but still bit concerned as to what it could be. I've been stressed in work for a month or so, thinking it could be this ? Any advice appreciated as I don't want to run to my Oncologist over nothing.

42 Replies

  • Watching this post with interest. My CA has gone from 12 to 17 (nothing much) due to have bloods and scan again in 4wks. Been 4 months since last scan. Generally feeling unwell again. Bloating, nausea, pains that range from dull ache to something resembling pins and needles. Small amount of blood occasionally when I wipe. Urine test and lots of different blood tests shows no sign of infection anywhere.

  • I feel like that too and my bloods were all clear. Strange that we are experiencing this but but not reflected in our markers

  • I suffer with bloating from constipation and indigestion. Gallstones can also cause similar symptoms. Where is your abdominal pain?

  • It's around my rib cage under my left breast and niggly pain on the right

  • Julie, could you have developed IBS? I have read that some women on this site do develop this. Thinking of you. Ann xo

  • I'm going to ask doctor about this. Thank you xo

  • Hi there .. I honestly don't know what to say. I wonder what your CA125 was at diagnosis? And then after treatment? When is your next gynae oncologist appointment? Questions, questions, I know. Xx

  • My ca125 was 3194 and it's dropped to 9. My next appointment is April but they have told me to come to clinic anytime xo

  • Maybe it's a good thing to go with what you feel. Xx

  • Hello. I know that none of us like to give or offer medical advice. So with that in mind - I found that I was getting bloated and ca125 reading always low. But constipation was the cause of most of my bloating - I know OC is there also, so my registrar & oncologist have advised me to use laxatives on a daily basis - and that has greatly reduced my problem.

    In some women, OC and the treatments/drugs can result in our digestive systems becoming very sluggish, BUT before you, or any of us, self diagnose - visit your GP and ask for advice.

    Hope it can be resolved and it is not too serious.

    Best wishes, Daisies

  • Great advise D .. I too have stimulants and water bulkers which have helped greatly but, as you say, the first port of call is the doc. X

  • Thank you Daisies. My bowels are sluggish. I take docusate daily. I'm going to GP on Monday try to get some help x

  • I'm bloated one more Caelyx to go feeling o k but after reading your post I'm going to take meds for ibs as you say it might just be that simple . See my guy next week meantime on toilet watch yo xx

  • I think if I was in your shoes I would call my cns and let her decide if I need to see the oncologist. My ca125 was elevated at diagnosis but has been low ever since. I have had two more lines of chemo and begining each one my ca125 was 7, so no longer a marker for me. This has made me more aware of my body and picking up on signs that things may not be quite right. I quite often panic that the symptoms I'm getting are disease progression but usually they are not but I let my medical team decide that. Your oncologist is there for You. you are not a burden so put your mind at rest and call your cns for a little chat. Hope all goes well and it's just one of those unexplained blips that we get from time to time . k. X

  • Hi. Saw your post. Just curious as to how they found you needed more chemo. I too sometimes have to go to the oncologist because I feel like something isn't right and my levels are still the same. Also does 2nd line mean another round of chemo?

  • Hi after first line chemo Carbo/ taxol and a radical debulking I felt fine for a few months I then felt a full feeling in my vagina. I though I had prolapsed but a scan showed disease on my vaginal vault so I had 6 cycles of caelyx. Fine again for a few months when in started to get a tight feeling around my rib cage a scan showed disease on my diaphragm so I had 6 cycles of Carbo/ gem. All this time my ca125 has bobbed along at a very healthy 7 ???? hope this helps K. Xxx

  • Yes thanks it definitely helps. I have bloating along with abdominal pain due to adhesions, constipation. My gyn/oncologist did say that I have a 75% chance of recurrence of the peritoneal cancer so I am trying to be aware of whatever is happening with my body since my last ca125 was still in the normal range and hadn't gone up. Dr did say it would probably be in the lower abdomen next time. You were very helpful. Again many thanks. Cheryl

  • Thank you for sharing xo

  • Thank you. I was content that my markers were still low but after reading some info on here I'm a bit concerned so definitely getting checked xo

  • Julie has PPC so I think she may be concerned about a recurrence which I think is a normal reaction. Not every women has a raised CA125 on a recurrence even if it was raised above 35 at diagnosis so spotting a trend for a recurrence is difficult. When I've rung my CNS in the past, I've been triaged and sent to my GP who has then said that there's no correspondence from the hospital and she's not an oncologist. If a pelvic examination isn't very sensitive and an ultrasound too expensive, what do you suggest women in Julie's position do? Maybe the answer is regular scans.

  • Thank you Tina.

  • Sorry Adoctor, a few years back my 125 was normal my calcium levels in bloods were high and I had bad pain in my posterior. Gynae team offered me back xray which showed degeneration. I wasnt allowed a ct scan because one symptom didnt warrant it and the expense wasnt deemed necessary. In the meantime I couldnt sleep with the pain and was losing weight. So my hardworking gp was annoyed at gynae team for their response. He thus referred me to a Rheumatologist who ordered an mri because he said my back was stiff. Lo and behold the mri showed my Ovarian Cancer was back and it was around nerves connected to my sciatic nerve thus the severe pain. So in my case an early ct scan would have detected the reason for my pain. I can tell you the result of the mri was faxed through to the gynae team and then I got action. I went through hell so please dont tell me any test has to be cost effective. A doctor or consultant has a duty of care to each patient. A ct scan or mri or ultrasound can save a life, in my case my Rheumatologist saved my life by sending me privately for an mri. I am sorry if you feel I am angry, I have every right to be. I have been fighting OC for many years and I am now under an oncologist who takes his work very seriously and cares for me

  • You're right about a duty of care. Thank you. Xx

  • This is an Ovarian Cancer support website all of us here either have been diagnosed, are going through diagnosis or know someone with the disease so most of us think about ovarian cancer most of the time

  • I was not self diagnosing. I was diagnosed with stage 4 PPC and was concerned that my cancer was back as anyone would in my position. As my Oncologist advised that I have a high risk of recurrence I think I'm entitled to be cautious. Perhaps it would best to read the profile before posting responses like this when ladies are asking for advice or support ..........

  • Of course you are entitled to be cautious and worried, I am sorry if my reply to Adoc upset you in any way, but I dont agree with a doctor wondering if a test is cost effective for the patient and the NHS, I am sure no one meant to offend you, after all we are in the same boat waiting and waiting and worrying re scan etc. I wish you the best

  • Hi Suzuki. Please don't apologise. I was not in any way offended. I was a little bit annoyed at the adoctor post. All you ladies are a wonderful support and it's great to ask opinions of women who have experienced this x

  • My mum is experiencing a lot of abdominal bloating atm, she is currently having chemo though. Did you bloat during chemchemotherapy at all? Im wondering if this is normal, she is finding her clothes to be a bit of a squeeze. No real pain when ahe pokes and prodes, but suffers from mild constipation some days...

  • Hi there, your Mum might be more constipated than she thinks. As she is on treatment, I would talk to the oncology nurses or the oncologist. They would have a fair idea of the cause and maybe prescribe something to relieve the bloating. If your Mum has steroids with the treatment that could cause her to increase her weight a little. Best to ask when she has treatment next time or see her gp in the meantime

  • I am the same as your mom last Clemo Caelyx . Next Monday I'm very bloated no pain drink orange juice in the morning I'm also worried about the bloating . I hate it look like a pregnant 60 year old

  • I will only say that at the point of diagnosis my Ca125 was incredibly high, and same down back into normal at the end of chemo. My consultant said my Ca125 was a good indicator for me and that it is the trend of the Ca125 after treatment that's important. Sadly for me in has gone up albeit slowly at every check up since finishing chemo.

  • Thank you all for your responses. I spoke to my CNS and I'm going to go to my GP to get checked and if he or I are still concerned I'm going to go to my Oncologist. I can see the team anytime it's jus the fact that I have to fly to Manchester to do so and didn't want to do so unnecessarily. I may have also been trying to avoid the possibilities of what it could be !

    My ca125 was 3194 when I was first diagnosed and it has been a good indicator all the way through treatment. I'm a bit worried though that some of you have mentioned recurrence even when markers are low. I'm going to make urgent appointment for Monday and if not feeling good then will book flight and go to Christies mid week xo

  • I wasn't saying you have a recurrence. I only feel it's natural to be concerned. X

  • I was thinking it was ok because my markers were low but few comments have made me rethink and I'm going to get checked out to be sure. Better safe. Thanks for coming back Tina. This forum is so helpful xo

  • hi Julie I'm not saying I think you have a reccurance either and I'm really sorry if I have upset you. I think my point is don't rely too much on ca125 numbers, go with your gut feeling as you say better to be safe. Best wishes K xxx

  • K, please don't apologise. I came on and asked the question as I think it is useful to hear other stories. I'm going on my guy feeling and getting it checked even though my markers are low. Thanks again for your responses xo

  • I used to be under the same consultant but I moved recently and decided to transfer my care closer to my new home.

    For me the CA125 has been a reasonable indicator as well all my reoccurrences have been proceeded by a rise in CA125 although it sometimes takes a while for this to show up on a scan.

    I think you said your pain was in your upper left quadrant I get pain here too. I also get a stabbing pain that comes and goes down my left flank I think that is to do with my bowels which pass along that side.

    In that upper left you have your stomach, part of your bowel, pancreas and spleen they all can pretty much cause the symptoms you describe. You are right in going to your GP

  • Hmmm Adoctor, I am fairly confident that our 'struggles' are of a different nature given that the posters on this site have been directly affected by a diagnosis of ovarian cancer!

    Perhaps you may consider the 'context' of your posts a little more carefully? S

  • I apologise for beating you up, I suppose doctors do get in the firing line from time to time. I still believe if my consultant ordered a ct scan when I needed it first day, my pain would have diminished much faster. That was in 2009 didnt get treated until six months after c/o to the gynae team. However the bigger picture is that the delay in treatment didnt affect the outcome of the chemo but it could have? I lived to fight another day and still fighting. I do realise that budgets also affect the number of ct scan etc that a hospital can allow. I agree there are no new treatments out there other than targeted therapy which I am lucky enough to be on now, Here in Ireland Avastin only stops when the kidneys start producing excess protein. So having a scan in April and see the onc at the end of April as in the interim he is taking a well earned break, Thanks for the link and I am interested in following that link. I know doctors do their best and get upset when they lose patients, ye are human like the patients

  • ADoctor we are not beating you up just asking you to consider as Sunfleury puts it 'the context' of the forum and the posts.

  • I'm going to Manchester to see my Oncologist on Wednesday.

    Thank you all for your advice and support. You are all very supportive and it's really appreciated. I'm unsettled and bloating/pain has not gone so better to get it checked than continue to worry about it x

  • This interaction has been fantastic and a huge learning curve on CA125  markers.


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