Am I being over protective of myself?

Hi ladies

The sun is shining in my part of Cork today but very windy.Just need a feed back from my question.If you remember I was in CUH in May due to pain just below my shoulder blades.Only had X-ray done and that didn't pick up anything.The problem is the pain came back worse on Friday night it's been niggling since May but sometimes it does get bad.Also I've been running to the loo every 15 mins with bladder urgency.Ive no pain or any sign of infection so I'm worried it might be fluid build up again.I took the bull by the horns this morning and spoke to the liaison nurse.I want to get an MRI not a PET scan within the next few weeks as will be seeing both of my doctors in middle of August.She will try to make an appointment for me for a Catscan but not sure if she can make it without doctors referral.

Am I right in wanting the best type of diagnostic tool they have? Was told an MRI would be too intricate and a lot of scanning would need to be done between the Thorax and Pelvis.I didn't want the Pet scan as only had one done in April.

Just another question.My CA 125 test is done every 3 weeks while on Avastin yet,my husband and I were informed that they don't really go by the levels of the CA125 while on Avastin as it can give false reading. Forgive me if this seems like I'm ranting but I'm not getting much advice or help from the medical side.

3 Replies

  • Annie. You poor thing; having to worry about pain & possible 'other' problems when you have just finished chemo. You are right to request the best diagnostic tool/scan to check out any issues and most medics will not mind, taking into account your disease.

    Anyway - in relation to a build-up of fluid, either pelvic, abdomen or even lung, an ultra-sound can also be done to check this and it so non-invasive. I never had a pet-scan sos can't comment on that.

    Now, you mentioned you were peeing a lot - ask you GP to do a urine test to check that you haven't a urinary infection: I'm the opposite at the moment, not peeing enough. despite the large quantity of water, tea etc I am drinking. But I always had great bladder hold and I am paying for it now.

    Glad you did ring the liaison nurse - and continue to do so, if you are worried.


    Maureen xx

  • Thanks Maureen.Seeing my G.P soon regarding bladder so hopefully only infection.She said she will also check I'd there's fluid in the abdomen and if maybe I might have an infection on the lung,so at least my mind will be put at ease somewhat.

    You poor thing,it's bad enough going to the loo constantly but not going enough must be a nightmare,although it could come I handy if your queuing for something ;-).xx

  • Hi Annie, if you feel unwell, ask for a referral for a thorax abdomen ct scan. Your doc has a duty of care to do this when symptomatic. Tell him so if needs be. I understood that the onc nurses keep an eye on the ca125 every few weeks and if they are worried, they speak to the gynae liason nurse or the onc. I was told that by the professor. As regards the bladder, they do your urine test every three weeks before Avastin so its not a kidney issue just might be cystitis. If you burn when you pee, drink plenty water or barley water diluted. I got aches across my back and it gets worse if I cough when bending over but it goes again so I put that down to age and also have osteopeonia which is the indicator for osteoporosis. Should get that checked really in case in got worse. I think the Avastin irritates the outer passages if you follow my meaning. Hoping you will get some answers

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