why havent i had definite diagnosis,

had high ca125 ,had transvaginal ultrasound and mri,showed up 3.5 x 2.5 cm lump in the wall between womb and bladder,been told have to have hysterectomy and possibly part of my bladder removed then they will biopsy the lump,this has been going on since 10th january,went to see consultant 2nd april and he said maybe endeometriosis,but what if it is not and it is something else?what else could it be and why havent they biopsied it yet?sorry to rant feel very alone,phoned hospital monday and they hadnt even typed up notes from 2 weeks ago,tried to speak to my local doctor but secretary refused to put me through to her,feel like they are not bothered about getting this lump out even though they know i am in pain.have anyone been told endeometriosis only to find out something different at biopsy,please any info appreciated

8 Replies

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  • Hi there

    I am so sorry that you are going through this. How terrible that the notes from 2 weeks ago haven't even been typed up, no wonder you are concerned amd feel so alone, poor thing.

    Sadly nobody can give you a diagnosis until you have been operated on and whatever is of concern has been removed and has been anaylsed by a pathologist.

    Ultrasounds , blood test results , examinations etc will give impressions but nobody will know for certain until you have been operated on. I went through a similar scenario two years ago, had a big 18cm mass , raised CA125 , anaemia which all pointed to advanced OVCA. Then I had an MRI scan to be told "great news it's just a cyst with a fibroid sitting behind it" . Then literally months and months later it was a question of "oops , it's a borderline cancerous tumour ". It was of course never explained to me at the time that all of these tests just give a guide to what the diagnosis might be.

    Similarly sticking a needle in something in a biopsy situation , where the doctor can't really see where she is going , is not without its risks. If there is something nasty in there the last thing you want is for it to spill its contents around your poor little abdomen. Also masses aren't the same the whole way through, so a biopsy won't necessarily tell them exactly what the mass is.

    In my experience those who shout the loudest get the most, so keep nagging until you get a date for your surgery. Make sure you take plenty of painkillers to try to keep yourself comfortable. It won't do your case any harm to suggest that the pain is really really really bad.I would also make an appointment with your GP and ask her to agree a care plan with you.

    I have been fine since, I just need checkups and lead a full life, and there are many of us on here who do do. Fingers crossed you will be too.The waiting around is the worst and never again having periods is great.

    Take care and let us know how you get on.

    Love

    Charlie xxx

  • hi charlie and thanks for replying,did you have to ask what it was after biopsy or do they phone you,i take it you had hysterectomy.was it keyhole?as he told me he cant do keyhole as need to get to the lump.

    He did say that my ovaries seemed fine.also how long after op did you get told it was borderline?sorry for so many questions love sonya

  • Hi. What you're going through sounds awful and charlie is right that you need to nag or get someone to do it on your behalf.

    Some issues to think about and get answers to. What kind of consultant did you see? Just gynae or gynae with oncology? Will your surgery be done by a specialist team covering both disciplines? Will they send a 'frozen section' to the lab to get results before the end of the op? You need to be referred to a hospital where this is the standard. There should also be a specialist oncology nurse available for you to call for advice and information.

    I was lucky that all these services were in place in Belfast City Hospital cos how are people in this situation supposed to know what to ask for?

    Hope this helps a bit and that you get some action and answers very soon.

    Linda

  • hi originally i think it was gynae with oncology but at the minute it is gynae with referral to bladder specialist,not really sure though.yes he did say they would have bladder specialist and this other consultant there,i didnt really ask any questions as didnt know what to ask,all i know is he said my ovaries looked fine but the lump is in the gulley between womb and bladder,he did internal and could feel it.i have no symptoms for endeometriosis,only bleed 2 days a month and that is it no painful sex no painful cramps.just had really bad pain in my rgiht side for over 3 years and pain on urination,been scanned 18 months ago but apparently they missed it because they didnt scan low enough.thanks for your replies take care love sonya

  • Hi again Sonya

    Thanks for your reply.

    They didn't biopsy before the operation . My understanding is that sometimes this is warranted but in most cases the mass is removed before anything is done to is.

    Yes I did have a full hysterectomy and had both my ovaries out. Again this is always done by open i.e. not keyhole surgery if anything is suspect, as the doctor should do a good look around to see if theer is anything else of concern. Also they need to remove everything intact, key hole means that the bits get chopped up inside ( I think) , and they cannot test them all. In any case I have very large fibroids as well so they couldn't be taken out by keyhole in any case .My consultant told me at the post op checkup, 9 weeks later in my case, that the cyst was borderline. There was lots of muddle , but as I say I'm fine now.

    Many lumps and bumps aren't cancer and I do hope you get sorted out soon.

    Love

    Charlie xxx

  • Hi Sonia, sorry you are going through all this worry. Maybe you could try ringing the Ovacome helpline nurses and leave a message on there. It's 0845 371 0554. Also, the BEATonline symptom tracker on the Ovacome home pages may give you evidence to take to a doctor. It's specifically designed to point out and record symptoms

    All the best,

    Love Wendy xx

  • Dear Charlie

    We are sorry to hear about all the uncertainity you are experincing at what must be a very worrying time for you. I wonder how old you are as obviously if you are premenopausal you are likely to want to avoid a hysterectomy if possible. If you would like to give us a ring on 08453710554 Mon- Fri 10-5 we can talk things through or you might want to get in touch with your specialist nurse so that they expalin things more fully.

    Best WIshes

    Ruth

  • hi and thankyou,i am only 39, i will phone you later as my cat is having kittens on my bed at the minute lol,it is amazing to see,thankyou for replying what time are your phone lines open tilll and also where do i get the beat online symptom checker from please x

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