Hi I recently had a CA125 test and a transvag which showed up a mass

[lisa4992]

Hi I recently had a CA125 test and a transvag which showed up a mass on my remaining ovary.I have been suffering bloating, missed periods, feeling pressure in my bladder and not being able to go to the loo properly (for a poo) not constipated as such just never feel like i've got rid of it all.. sounds disgusting sorry! . Been to see the consultant and he thinks the mass is scar tissue from previous ops.(cystectomy's and removal of left fallopian and ovary plus bladder repair due to adhesions on bowel/bladder/uterus. I wasn't offered MRI or CT scan. Going back in July for a follow up scan and blood test. I'm 45 and a bit worried that his diagnosis of IBS and adhesions might be incorrect. Can anyone re-assure me please? The consultant has also said I have so many adhesions that unless it was cancer they wouldn't do anymore ops because it could result in me having a colostomy etc... has anyone had similar probs and what is the best advice? P.S. blood result was only 9 which i was told is well within the normal limits

[charlie12]

Hi Lisa

Sorry that you are going through this.

Of course you are worried, you wouldn't be human if you weren't.

However the fact that your CA125 is so low is surely extremely good news. The trouble is that so many people have these symptoms and only a tiny few have OVCA. Ovacome has wonderfully knowledgeable and supportive specialist nurses that you can speak to. Perhaps you might consider calling them after the weekend , to reassure yourself.

Just a point on the surgeries. I had a borderline tumour removed and a second surgery to investigate ongoing pain, I won't bore you with the details.This was , for me a disaster, it made the pain much worse for ages and obviously left a terrible scar. I have got the pain under control mainly with increased exercise, but also with low dose medication , CBT , accupuncture ...you name it , and am really well now.

I do so hope this resolves for you soon.

Take care

Love

Charlie xxx

[lisa4992 in reply to charlie12]

Hi charlie, Thank you so much for answering so quickly. I will call the helpline tomorrow just to get some re-assurance. I am relieved that the blood test was low of course. It was a bit of a shock when i had the scan and they found a mass and not my usual fluid filled cysts, and a further shock from the consultant about the amount of adhesions glueing up everything in there which would prevent further surgery unless it was life threatening. I suppose I'm scared that his reluctance to do a biopsy on the mass for fear of making things worse is frightenning me in case the mass is sinister and i end up with something much worse...

I'm so sorry you have so much pain to deal with. Since my last op two years ago I don't have lots of pain, just occaisional spasms, mainly when i need the loo. Luckily I'm a reflexologist and massage therapist so I have been giving myself reflexology and abdominal massage which helps. I have been looking into myofascial release massage which is meant to help with internal adhesions. Is this something you have come across?

Thank you again for your advice

Best wishes for ongoing health

Lisa xxx

[Jan76]

Hi there ..

Can you get your GP to get you to the hosp for a scan a bit sooner than July ..

Think I would push it ...my symptoms were needing a wee every tens mins and bloating ..... CA125 normal but after a ultra sound and ct scan in nov found a large mass ...hys in Dec 2011..... results Jan 9th I had stage 1c carcinoscacoma Ovarain cancer ..very rare and agrressive .... They told me my CA125 was with its normal limits .yet look what they found when they did the op .... As we know Ovarian cancer so very often gets miss diagnosed for IBS ...Go back and soon ....Peace of mind .....

Take good care and please let us know how you get on .

Love Janet xx

[lisa4992]

Hi Janet

Thanks for your reply. I have had one scan and seen the gyn/oncol who has advised I have another scan and bloods in 3 months (my next scan is july 2nd) He thinks the mass on the ovary is scar tissue from previous surgery/infection. I'm scared he is wrong, I have told him my concerns but he is reluctent to do further surgery as I'm such a mess inside he says, that I could end up with a colostomy and worse pain etc... He wants to wait and see if the mass gets bigger...I saw my GP and told her what the consultant said and although she was disappointed that he had scared me a bit with the colostomy thing, she seemed to agree that we should watch and wait... Which I suppose is sensible, but I'm scared... and i find myself feeling guilty at being scared, so now I'm scared and guilt ridden!! Lol .... any advice would be appreciated

Best wishes

Love Lisa xx

[hannah98]

Hello Lisa

Im in the same position as you. Normal Ca125 at 16, but complex abdominal mass found on trans vag ultrasound. I am waiting for an appointment with gynae in 2 weeks. The waiting is truly awful.

Hope you gain some confidence in your consultant