Scared Ovarian Diagnosis

Hi, I'm new here and petrified. I haven't had a cancer diagnosis yet so you may think I shouldn't be hear but I'm petrified. I've had bloating for about 4 weeks and after routing blood test an elevated CA125 of over 300. I'm so swollen round my middle and now think it could be ascites not bloating and I feel so stupid and worried that might be a sign I have more advanced cancer. I've got an appt on Monday morning with a gynaecologist. I have a 5 year old and can't even think about what this may mean. Anyone who has been through this or has any advice welcome. Thank you x

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  • Hi-I have also just recently been told the devastating news after my blood results came back as high.. I had an mri/ ct scan pretty much straight away where they found a tumour on my left ovary also bowel and adrenal problems.. I'm so sorry.. please don't worry.. I know it's very difficult... and scary... I'm here if you need to chat..xx

  • I saw the consultant yesterday who asked for urgent CT and MRI scan. I am beyond petrified as I keep reading about ascites (I have a swollen tummy and she said she could see fluid around the pelvis). Did you have the swelling? What are your next steps. I've got a two week wait for results and not sure how I will get through it. I'm not sleeping, crying, worrying about other symptoms I seem to have developed. If it was only the high reading I think I would be less concerned but I'm worried the ascites is a sign I have advanced cancer.

  • Hi JM, all of this is just torture isn't it. At least you will know sooner. I found out the MDT meeting to decide my next steps is at 2pm tomorrow so hoping I might know more tomorrow evening.
     

    Thank you for checking on me yesterday I had just had a bad couple of days. I have my husband to talk to although he is still thinking everything will be fine, I know it's good to have a positive outlook but it's just as though he is ignoring that it could be more serious. I have friends and parents too who are all there for me so I am very lucky x

  • Hi Ac,

    Psychology is an interesting science, it could be that he is trying to keep you positive, or he needs to keep himself positive, or even that he just doesn't know how to feel so he defaulted to being cheery and positive.  So many reasons behind someone's behaviour.  I sat my husband down and asked him how he was feeling, it must be hard for him too, plus when he gets stressed he swears and blusters and shouts a lot, which just winds me up, so I wanted to head that off at the pass so to speak.  Apart from the morning of the scan when the central heating sprang a leak and I thought his head would explode, he hasn't done too badly, though I have to admit that I'm taking my daughter with me next week and not him!

    You know where we are if you need to chat, take care xx

    JM

  • So I've just heard from my consultant and the MDT team do feel that we are dealing with something benign but due to the 10litres of fluid are recommending I have my surgery performed by a Gynae Oncologist at a cancer Center. (Not sure I'm allowed to mention the name on here?!). I should hear from his PA and my consultant thinks the surgery will be this week or next. 

  • That's fantastic news, I hope it's made things a little easier for you, though facing surgery is still scary. Sending hugs.

  • Good luck tomorrow JM. Will be thinking of you X

  • Well ladies, I'm taking that as a positive.  Whilst cancer still isn't ruled out, it's only a 20% chance that it is cancer, so I take that as an 80% chance that it isn't.  The CT scan shows no trace of cancer anywhere else at all. With the biopsies already taken from the polyps and endometrium indicating that growth is abnormal, and with the elevated CA125 levels, the indicators point towards cancer, if not already there (20%) then it is very likely to develop in the future so, next steps, as with most of us it's the full hysterectomy but the surrounding tissues and organs are fine, so no bowel resection.

    Now it's just another wait to hear from the hospital as to when.

    So, all in all, that's a massive sigh of relief xx.

    Hope everyone else is doing ok xx

  • Hi Jm least there is a positive there and im glad you have found some relief.  Im still waiting on my Ct scan results, thats just over 3 weeks so hoping i hear soon.  

    Take care xx

  • Hey Acw, wishing you well on your surgery, thats great news 

    X

  • Thats great news JM, take every positive you can in this road. I spoke to my  Operating consultant yesterday, seems what they know about me doesn't all quite add up. My lump is 12x12x13.5cm and attached to my uterus not my ovary. Anyway I am booked in for a radical hysterectomy next Wednesday with removal of ovaries, uterus, tubes and omentum. Mine could be benign but just a less common phenomomenon. 
     

    I can't wait for the surgery now as my fluid has built up again and is so uncomfortable so hopefully surgery recovery will be an improvement!

  • So I had ny radical hysterectomy yesterday (last night in the end) and actually feel ok. Im off oxygen, had my catheter out and even walked up and down the corridor with the physio. Hoping for a better nights sleep tonight as last night was interrupted but apart from that I'm feeling well. The large lump was removed and was in fact attached to my ovary but everything else looked normal. I've got to wait for the biopsy result but still a possibility it's all benign (fingers and toes crossed!). Hope this reassures people about the op xx

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  • So I had ny radical hysterectomy yesterday (last night in the end) and actually feel ok. Im off oxygen, had my catheter out and even walked up and down the corridor with the physio. Hoping for a better nights sleep tonight as last night was interrupted but apart from that I'm feeling well. The large lump was removed and was in fact attached to my ovary but everything else looked normal. I've got to wait for the biopsy result but still a possibility it's all benign (fingers and toes crossed!). Hope this reassures people about the op xx

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