Some help, reassurance and advice please!

Hi, looking for some help and advice!

For the past 15 months, I have had a dull pain on my left side along with a persistent backache (usually at night and on waking). My GP has been pretty good and we started with a colonoscopy which showed evidence of diverticultis.

Pain didn't subside despite meds and diet so did blood tests. This is where I started to get panicky as CA-125 came back elevated at 58 so straight to hospital and ultrasounds, both internal and external - nothing showed up.

Repeat of CA-125 and it was 48, still outside the "norm" so referred to gynae . He did another u/s, more detailed and again, nothing untoward.

Referred to gastro, consutant understaood my anxiety and she sent me for a full CT scan on all internal organs. results came back all clear, nothing wrong!

Final tests as back pain still ongoing was a x-ray of pelvis/hip area, again all clear!!

So, after 3 x u/s, 1 x CT scan and an x-ray, all of which have come back clear, I guess I should assume my CA-125 baseline is just higher than normal.

I still have pains but am trying not to be anxious about it. Dr seems to think that I have two things going on, the diverticultis and back spasm; next stop is physio for the back to see if that helps.

However, my mother has just been diagnosed with a small "tumour" in her ovary, very early days as no referral yet to hospital, just results of an u/s (I'm not sure how her GP can say exactly what it is to be honest without further tests) . She gets very confused about things these days so I will go with her to her appointments from now on.

All that has raised my anxiety levels again about me!! My GP and consultants don't want to keep repeating CA-125 as they say it does more harm than good! I keep telling myself that after all those invasive "looks" at my bits & pieces, if there was something, it would have been noticed!

Any reassurance for me please would be wonderful!

Also, what questions should I make sure I ask with my mother?

Thanks you very much and sending my best wishes to you all as you travel this road x

11 Replies

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  • Hi Nessie

    I am so sorry that you are feeling like this.

    All I can say is that , based on my own personal experience, if you had had ovarian cancer for 15 months plus , then the likelehood is that your CA125 would have been much much higher, you would have other symptoms such as weight loss etc and one of these doctors would have picked it up.We really cannot take CA125 levels in isolation.

    As you so obviously know CA125 can be raised for many other reasons and a level of 58 ish is really not very high.The fact that it is falling and has fallen over 15 months would point to a condition that is not getting worse .

    I had ( after numerous "diagnoses" ) an 18 cm borderline tumour and my highest measured level was 68 , which fell to 48.

    Take care

    Chin up

  • Hi,

    It seems unlikely that you have an ovarian cancer, but it must be unnnerving!

    A number of benign conditions can cause elevations of the CA 125 level, including pregnancy, endometriosis, uterine fibroids (benign tumors), pancreatitis, normal menstruation, pelvic inflammatory disease, and liver disease. Benign tumors or cysts of the ovaries can also cause an abnormal test result.

    What I don't understand is what harm taking blood for ca125 testing can do - unless they mean you are extremely stressed about it. In which case, I suspect just stopping taking tests isn't going to reassure you!

    I would have a test taken every couple of weeks, to see if it's rising or staying put or falling.

    Very best wishes,

    Isadora

  • Hi!

    I can understand how worried you are, but it does look as if monitoring things is the best option for you at the moment. When I was operated on for OC I was given a monthly CA125 test for three months after my op, (mine was 545 before my op), then every 3 months for a year, then 6 monthly for 2 years then every year. That was deemed enough to monitor any future problems. If all your scans and examinations have come back all clear, it would seem you're OK. My mother has diverticulitis and has a lot of pain in her back, shoulder, leg. It seems to flare up when she eats the wrong sort of food, and seems, to her, as if there is a trapped nerve which is causing pain like sciatica and then sometimes, shoulder and elbow pain. She would love some ideas about how to help this, if anyone knows anything. It seems that management of this condition is little-researched! As to your Mum's diagnosis, have you tried doing the BEATonline symptom tracker with her. It gives more evidence of symptoms to take to your appointment with the doctor. Did he give her some idea of what the next steps would be for her? All the best to you and her

    Wendy xx

  • Hi Wendy

    Has your Mum tried seeing a reflexologist? I had sciatica caused by a bulging disk last January, I saw my reflexologist she gave me a deep massage on my back, then worked on my feet. It was wonderful, within a few days I was pretty much back to normal, I had a couple more sessions to make sure and have had no problems since. I know it is different from your Mum's problem, but it is amazing what a good reflexologist can do...a few months later mine sent me to my doctor recommending tests after an out of hours GP gave me laxatives for the same symptoms, oc diagnosed

  • Thanks, Chris! I will definitely suggest it to her.

    Wendy xx

  • Has anyone suggested pancreatitis to you...? I only ask because that's the first thing which sprang to mind on reading your post. It's one of those things which can flare up, bugger off for a while, and then return with a vengeance! Gastrointestinal and hepatic problems appear to be notoriously difficult to diagnose, particularly in us lasses, because we're more prone to common bowel disorders, such as IBS and IBD than guys appear to be. 

    I speak from personal experience here; I spent 2 years in agony, traipsing from GP, to walk-in, to A&E and back again, each time being told "It's just IBS", and no-one would listen to me when I argued I knew damned well it wasn't!

    My life was on hold (it still is) - until I was told in August last year I had gallstones. The thing is I don't believe that's all it is now, as I'm experiencing other, rather more alarming, symptoms and I'm having to go through the whole rigmarole again! I have the added complication of autism, which I'm always 100% upfront about (why should I hide it...? It's just as much a part of who I am as my ash blonde hair and bluey-green eyes!) but I've seen doctors' attitudes change the second I tell them, from being interested in getting to the bottom of the problem, to total uninterest, and implying I'm faking it for the sake of attention! If they knew the first thing about autism, they'd know that folk like me go out of our way to AVOID attention, we DON'T want to cause bother or nuisance to anybody. 

    But this isn't about me, it's about you, and I don't really know what to say (sorry for being a total failure at being helpful... :o(). 

    There's just one thing - and I'm rather reticent to mention it, because the VERY last thing I want to do is insult and/or upset you - but are you on the larger side...? It is relevant, because I was obese (was 24 stone, now around 8, so I've seen things from both ends of the scale, if you'll pardon the rather terrible pun!) and it took FOREVER to receive a diagnosis of PCOS about 20 years ago for precisely that reason - because I was such a blimp, not only was there a ton of subcutaneous fat getting in the way, but a great deal of adipoidal (I can't spell that word; it means the fat round your organs) flab, too, which made it nigh on impossible for the sonographer to get a good view of my ovaries. I had to shed about 12 stone before I received a diagnosis (being short doesn't help matters, either!)

    Apologies again if my asking offends, but it is something to take into consideration.  Sound waves have their limits!

    I hope you get to the bottom of this ASAP and PDQ, and that your Mum's tumour turns out to be nothing more than a benign cyst. 

    Thinking of you both,

    Hugs,

    Sarah

  • Thanks to you all!

    I am beginning to feel a little less anxious about me as there are no other symptoms, no bloating, no loss/gain of weight (well, apart from the odd pound over Christmas through good/too much food & wine!) and no increase in severity of my original symptoms - in fact, things are beginning to ease up thankfully. I think I will ask the nurse about the blood tests when I go next time for something and perhaps have it done every few months, just to keep an eye. The consultants/Dr said not to do it anymore because it was falling each time and it was stressing me out - keep away from Dr Google! I am a real worrier and get very anxious (and a bit obsessive my other half would say!)about things....

    As far as my mum is concerned, I will make sure I go to appointments with her and ask the right questions, I'll use the symptom tracker to help.

    My best wishes to you all, I'll pop back here now and again :-) May 2012 bring you all increasingly good health and, above all, have a wonderful time.

    ps: ShrinkingViolet - you are who you are and don't let anyone tell you otherwise!! No offence taken in your question, I am not a bigger lady so everything was quite clear on my scans. Take care x

  • Nessie, my CA125 is in the region of 48, my oncologist has now decided its a red herring (just had scan and all clear at moment) you can have three bloodtests in a day and get different results, I know its worrying but after all the tests you've had I'm sure they would have found something, so try to stop worrying, I'm still trying. good luck. Love Sue x

  • Hi nesse,

    35 and below is normal range for CA125, even after cancer our oncologists wouldn`t be worried about it rising to just above normal range ie 38.

    We all have our own level and yours could be in the hughest normal range, mine now is 9 however when I had cancer it was in the thousands.

    Please rest assured this is muscular. A pain lasting as long as 15 months would be showing other symptoms by now if it was cancer.

    Diverticultis, is very painful and is often acompanied by outbursts of Irritable bowel syndrome (IBS). this can include pain as you describe. My friend has both these conditions and she has medication for them from her GP.

    Don`t turn your nose up at a low dose of Amitriptyline. I take one 10mg tablet at bedtime, but even 25 mg is classed as a low dose. It is an anti-depressant in higher measures however, in low doses it is perscribed to treat muscle pain and IBS and other chronic pain. This drug is no longer used to treat depression because the dose needs to be in the high 70`s and above and then it has side effects. Of course there will be other medication your GP can help you with. He may even perscribe tramadol if the pain is intence.

    Hope this helps - and good luck with it love Tina xx

  • P.S just another thought - you may have pulled a muscle and that is painful. Muscle injury will take longer than a break to heel and if you continue to use it, your muscle won`t stand a hope in hell at healing itself. Complete rest is the answer and patience is a vertue. I am taking tramadol at the moment for a muscle injury and they make me sleep, and while I sleep I heel, its the only answer.

  • Dear Nessie

    I am one of the support line nurses and am sorry to hear of the all the concerns you are experiencing as a result of your raised Ca125. It seems very unlikely to be ovarian cancer as nothing has been found on your other investigations and although your Ca125 is raised, it is not going up - in fact it went down slightly,and this can be part of the problem with a raised Ca125 when nothing is found on other investigations. It sounds as if your normal level is one that is slightly raised. I have known people with a constant reading of 100 with nothing found on investigations - this was as part of a trial - and so nothing further was done. If the Ca125 was going up all the time there would be cause for concern. If you would like to discuss things further do give us a ring and we could also discuss what questions to ask re your mum

    Best Wishes

    Ruth

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