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suspected cancer but no one's telling me anything. help

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ayeisha20281
ayeisha20281

First time I've ever been on these discussions but Ineed to talk to someone as my doctor iisn't giving me much information as I can tell they don't want to scare me. Basically I've been having abdominal pain bloating back pain needing to wee more and tiredness for over 2 years doctors kept putting it down to periods stomach spasms even ibs for ages but said they'd send me for a scan last year unfortunately that had to be postponed as I found out I was pregnant so couldn't do scan had my son he was 7 weeks early as I have a history of bleeding in pregnancy and my waters broke. Been advised before there could be an underlying problem and that I should get a smear but they won't do it because of my age. Anyway shortly after having my son I got the coil in. While there the doctor done an internal and could feel a mass near my ovary done a scan and I could tell by her face she was worried was sent for more scans and it was confirmed I had a large mass on my left side of my pelvis but they wernt sure what it was so am awaiting an emergency mri but it could take up to 12 weeks to get an appointment. They done blood tests an 1 of the blood tests ca-19.9 came back elavated I'm quite concerned as I no its a sign of pancreatic cancer and that runs in my family as well as colon cancer. I'm just worried as it's going to be ages till my mri and that's with an emergency appointment and doctors aren't saying much as they want mri first before they talk to me. I can understand why as they don't want me worrying but if anything it's making me worry more as I've noone to talk to about it

0 likes, 3 replies

3 Replies

  • chica
    chica ayeisha20281

    Posted

    the answer is to go back to your doctor and say you will pay for a torso mri.

    see what he says.

  • sarah28436
    sarah28436 ayeisha20281

    Posted

    Hi Ayeisha,

    Hope this repy help. I tell you a little about my story and it might help you feel a bit better?!

    Years i suffered with IBS issues and doctor just said it was related to that but i knew it wasnt and the pain started to get worse i had the Mirena coil for nearly 12 years (They normaly in for 5 years i was on my 3rd one) So i just had to have it out cause i thought it was causing problems. so i had it removed in April 2013 but pain got worse. I then went to A&E in June 2013 as i was with severe pain. For a good 2 years before i was getting very bloated and very sore back pains.

    They did a scan and it showed a mass over my right ovary. I was in severe pain, i mean i was bend over  and constant pain that wouldnt go away...so i was taken into surgery and they found a 9cm plus dermoid cyst (These cysts dont usualy go away as they contain teeth hair and bones). The reason why i was in pain was because it twisted and cut the oxygen supply to my right ovary and tube. So that was also removed.

    Straight after the operation i felt a big relief. I didn't have such pain it was different and anxiety was better and everything was easier. However, things seem to start getting sore again about half a year later, slowly gettin worse so i was given hormone injetions as i didn't want to be put back on the coil. Then it got more painful so i had a MRI arrange Dec 2014, the scan showed a solid mass (WHICH SUSSPECTED CANCER) I was a mess. So they checked my CA125 Levels and they showed high, but my surgeon said that they can be high for many reasons. then we played a watch and wait game....(my god that was sooo stressful) so Jan 2015 i had a scan and it showed multipe cyst. so one week ago i had an operation to remove the cysts from my ovary which werent too big but were causing pain, but i did have cyst on my bladder too which didn't show on the scan at the time so they much of developed.

    I am ok now, but as soon as i started ovulating my pain come back, but i am seeing the specailist in a few weeks to discuss.

    I have no children and really want children.

    By the way its common for cyst to grow during pregnancy.

    It is very common to have cyst but some cyst do cause problems. The one they just removed was a simple cyst. and they usually burst and your bosy absorbs it. some people it doesnt affect them and they dont feel it. but some people do, so maybe you are one of them or its growing to big and maybe need to have it removed to help your pain.

    Regarding what you have wrote i wouldnt worry too much about the CA125 levels being 19.9. If you have endometriosis or cyst it can be elevated anyway. I think its right that you are having an MRI, cause that will help them see other areas.

    I personally wouldnt have the Mirena coil again, and i have spoke to so many people that have had cyst or hormone inbalances sue to the coil. but i cant have the pil cause it make my breast leak fluid milk stuff. 

    Cancer of the bowel runs in my family but having cyst and cysts on bladder isnt related to it so i wouldnt worry too much about that. I believe ur doc dont have any information to say because they dont have any information yet and there isnt any point in guessing. Stress effects our hormones massively and can make symptoms worse. I was stressed from 2014 dec to feb 2015 waiting for operation and scan and thinking its cancer etc, and it made my pain levels rise massively. its very stressful and not easy to relax but i would try and relax as much as you can.

    As for symptoms when i have a cyst.. i get constipated at times and i get uncomfortable bloating and need to wee all the time. The wee issue could be cause its pressing against your bladder - even if its just small.

    when i had my big cyst over 9 cm i couldnt poo without taking over 8 laxative a day for days or over a week. but i went to wee every sec and woke up in the night to do it. it was horrible.

    please feel free to messge me privately or on her and i be happy to talk about any other symptoms.

    hope i have helped a little bit xx 

  • ChooChoo
    ChooChoo ayeisha20281

    Posted

    you should not have to wait 3 months for an emergency referal - you should get a  CT /MRI within 3 weeks as an emergency.  
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