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

  • That's an interesting development Just mum...I'm not sure how I would take it. The fact they are not seeing you for three weeks though would suggest they do not feel you are urgent. But what do I know? I'm struggling mentally again, I'm not sure until I know my fate I will cope any better. 

  • Hmm, three weeks isn't very long at the moment, and remember Tinks original appointment was two or three weeks ahead and she was offered a cancellation.  I just don't think you can call it just now, what with waiting lists being months long! I won't know until I get there, and until then there's no point in worrying.  If I expect bad news and I get the all clear then that will certainly be something to celebrate, and just in time for my wedding anniversary .

    oh well, thumb twiddling times again.

    AC, do you have someone to talk to? Have you been assigned a contact at all? If not, can you reach out to your doctor and tell them you're struggling? They may have resources that you can access. Is there anything we can do to help?

     

    JM

  • Now I'm stressed , just had an "urgent" call from the hospital to cancel my appointment on 10th May and bring it forward to next Tuesday.  Funnily enough it feels too soon.

  • 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