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Feeling anxious - raised ca125

Nali786
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I have not done this before so unsure how to start this.

i recently went into A and E for severe abdominal cramping due to constipation and over the counter laxatives not working. When i went in, an x-ray and CT scan were done which showed a blockage in the bowel and a large ovarian cyst on the right ovary measuring 11cm.

I was admitted into hospital as a result to try and unblock the bowel for which i was given 3 enemas none of which worked. I was then given stronger laxatives and sent for an ultrasound to check the cyst and a CA125 test was done. The stronger laxatives still did not work at which point the bowel surgeons came to talk to me to discuss another laxative as a final option before potebtial surgery on the bowel. The whole tome through this i was in severe labour-like pains for almost 6 days and could only take paracetamol as a pain killer. 

Upon the second set of strong laxatives i was able to finally go for a poo and i went about 8 times through the night. The next day when the doctor came in to check me they just asked if i had managed to go to the toilet which i had so they said they will discharge me as it was 1 day before xmas and said that i will get an outpatients appointment for an MRI on the cyst.

At the time nobody mentioned anything regarding the CA125 test and i was discharged. Today i have checked my discharge note properly which lets the GP know to arrange an outpatients MRI scan but in the notes it also mentions that the CA125 result is 125. With it now being the weekend and then New Years straight after I am now really concerned as i know i have large complex cyst and with a raised result on the tumour marker.

would the hospital have discharged me if they thought that this may be pointing towards cancer? Or would they have at least mentioned it to me before being discharged? They did ask whether anyone had mentioned if u had endometriosis before which they havent but that was about everything that they mentioned. 

I am 35 years old with a 3 year old daughter who was conceived after 7 years of trying and after many losses. I went for many scans during this time but endometriosis was never mentioned. I do also suffer with uterine fibroids and have a total of 13. Can anyone that has been through a similar experience please help to put my mind at ease until the GPs are open again on Tuesday please.

  • Offline

    HI :)

    I think that the discharge would have been normal procedure as it would go to the gynaecologist for the Cyst issue. Seeing as you have a complex cyst and raised Bloods, once this gets to the GP, you should be put onto the 2 week pathway and get an appointment really soon. I would definitely call them on Tuesday and make sure that is the case.

    The raised bloods aren't a really accurate tool but they add those details to the size and type of cyst in order to know how to proceed so try not to worry too much (easier said than done! I know) They can be raised for lots of reasons so it might not be a sinister one. Ovarian cancer is very rare and even complex cysts are highly likely to be benign.

    Advanced stage OC can see levels in the thousands and I believe it is most used a test to check for reoccurrence rather than initial diagnosis. It is great that they are thorough though!

    I know it is a really stressful time and hard not to think about it constantly but you will be seen soon and get the tests needed so they can see what is going on xxx

    I have a complex cyst which the Ultrasound showed to be half solid/ half cystic. It is 4cm so not massive but causing me a lot of pain and urinary problems. I've also lost almost 3 stones in the last 4 months unintentionally. I was referred on the 2 week pathway and seen a week later, this was last Wednesday. They called and I have an MRI for New Years Day which should give a bit more info too, though the only way they can truly diagnose is by taking it out and testing it.

    I am 47 and my Mother had Uterine (womb) cancer at 36, her mother had Ovarian cancer so I am a bit worried but not overly. I've been googling like a maniac for months so I think I have reached burn-out and resigned myself to what will be, will be. 

    I am so sorry that you are having all this worry and the bowel issues too.

    I have a son who has special needs and is 11. He is non verbal with learning disabilities and I am a lone parent. That worries me as if I am sick, I have no clue what to do.

    I am kind of putting it to the back of my head or trying to!

    Give them a call and get your referral done and you will be seen really soon xxx They should be able to tell you a bit more about the cyst and what they think. If they have concerns, they will be really prompt in getting the tests done and surgery.

    I'm sorry that I can't put your mind at ease more but just wanted to reply and let you know that you are not alone.

    The waiting is bloody awful.

    Please keep us posted of how you get on and share here. All the best and roll on Tuesday xxx

  • Offline in reply to Ivy76

    Hi  ,

    Thank you so much for your reply! It was definitely reassuring when i was so anxious and thank you for the information on what to expect regarding the referral as I feel like i am completely clueles I have googled a bit but tried to stay off it to stop myself worrying. Tried googling new year’s sales instead ha ha. 

    I definitely sympathise with you about the issues caused by the cyst. Fingers crossed that it is benign but with the issues that it is causing, i do hope they do remove it soon.

    How did your MRI go today? Will you be getting the results soon after? I Have my fingers and toes crossed for you for good news both for yours and your son’s sake. Never easy being sick as a parent and especially on your situation. Please do keep us posted with your test results xxx

    Thank god it’s finally Tuesday tomorrow and i can call my GP surgery to ask them about the referral. I hope they can shed some light on it and tell me whether I will be on the 2 week pathway. I am off work at the moment due to the issues at the hospital but now i feel like i need more time off for the anxiety of all this (and the constant pain doesn’t help either). 

    I will let you know how i get on with it all and hope I do hear from you again as would love to know how you get on.

    Happy New Year and all the best. Hope we have a healthy year ahead xxx

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