PET Scan?

Hi everyone..

I posted about 12 months ago as after a routine scan for a possible hernia, I was found to have a lump in my pelvic area.. 2.5 cm. Next scan 3 cm and then latest scan 3.4 cm. My CA125 remains normal and I am now a 9 years survivor.

After my last scan last week, they have absolutely no idea what the lump is and why it is growing.. It is worth mentioning that I had Stage 1C and Stage3 Borderline so two types but my CA125 has never been elevated so is not a good indication with me.

They said 'it is not measureable against normal reoccurence' but they are sending me for a PET scan in Nottingham..

I only get symptoms when I am stressed but they can't give me any idea what it is... so of course my head is doing 4+4 and making 300..

Can anyone relate to this?

Many thanks

Gilly x

6 Replies

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  • I can, totally! I was diagnosed stage 2b in Nov 14. Had total hysterectomy, removal of omentum and appendix, followed by 6 rounds carbo/ taxol. Had ct scan in june last year- ned and ca125 at 13. 3 monthly check ups - ca125 stayed same. Thought I had kidney stone in May this year so had ct scan- showed a 4cm 'something' pressing on tube leading from kidney to bladder. Ref back to onc who ordered pet scan and mri- both clear apart from this something and now going for biopsy on Friday because they still don't know what it is! Can't sleep for worrying but if it's a recurrence at least they've got it early- and by the way, my ca125 is still 23 so heaven knows what's going on. Hope we both have good news soon xx

  • Hi there.. have you got any symptoms? I have always had twinges down there but in 9 years I have had various scans all clear. I know what you mean about not sleeping.. I run my own dog walking business and it is hard to stay cheerful when I just want to throw in the towel and feel sorry for myself. I really hope we both get good news and that it's just something benign.... They said something about the PET scan showing hot spots.. sure that is what I will dream about tonight.. Fingers crossed for your biopsy. xx

  • I've had twinges since a few months after operation but onc seemed to think it was adhesions so wasn't unduly worried. Then a blood test following agonising kidney pain showed inflammation in kidney (which has now gone back to normal) hence ct scan . I'm still trying to convince myself it's harmless but struggling the nearer I get to biopsy! Still, as you say fingers crossed for good news for us xx

  • Good luck to both of you, hoping the scans show all clear for you both.

    Xx

  • Thanks.... of course my stomach hurts today... I swear when I was signed off for 6 months last time the pain disappeared but now the stress is making it worse. x

  • HI Gilly, pet scans show up stuff we never knew we had, I have never had one, my onc relies on ct and mri if I am complaining. It is easy to say try not to worry because we all worry regardless. I started Mindfulness last year and find it good, I dont get as stressed out as I did over stuff. I am not cured of overthinking but the mind has learned to think about stuff and then put it into a box and throw away the key. We all feel more pain when stressed because we are aware of it more. I wish you well for the petscan, I hope you have a supportive onc who will run through the findings with you. Do let us know how it goes and we are always here for you

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