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.

Well this is unexpected.  This morning I had a call from a research nurse at the hospital asking if I would be happy to be part of a study trying to identify ways of screening for early ovarian cancer.  She was then rather quick to insist that she wasn't telling me that I have cancer as I've not seen the consultant yet and my appointment is still three weeks away, just that they would like me to be involved.  She is sending more info by post, will call again next week, and will meet up with me in clinic when I go to see the consultant.

I have every intention of saying "yes" but I did chuckle when I put the phone down.

Oh dear, that would have terrified me.  Im still waiting on my ct scan results been 2 weeks, hoping they come through soon as im sick of this pain i have just feel sick and bloated all the time 

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

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

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

Glad to hear you are well, will keep my fingers and toes crossed for you, hope u have a speedy recovery.  Im still waiting on my ct scan results, just over 4 weeks however i was in hospital 2 days ago as had crushing pain in ribs, i have suspected long covid. Doctor said that apparently my cysts look benign, im like i havent had any results yet, he said my upper intestine is sitting lower or higher than it should so no idea still waiting for official results and appointment with gynaecology, even more stressed now and still in pain.   Hopefully get full answers soon

Hi, so glad to hear everything is going well for you.  How many days are they looking to keep you in, do you know yet?

I had my surgery at 7pm on Wednesday and looks like I will be home Saturday morning! Consultant said I am presenting As though I am day 4/5 post surgery 

Hi AcW, just touching base with you and checking how you're doing.  Hope the recovery is still going well xx

Hi , 

How did you have your hysterectomy  if you don't mind me asking? 

I'm waiting for my total on the 24th vertical cut . 

My cyst measured 17 x 11 x 11 cm the last time it was scanned . I'm hoping recovery from the op is ok x x 

Hi ladies, my recovery from the Op has gone well, I'm still taking it easy but doing more each day and off painkillers.  I also had the best news tonight, my consultant rang to say my 'lump' was a benign ovarian fibroma caused by Meigs syndrome. It's very rare and unique and I feel so so lucky as appreciate that many other people with my symptoms have a very different diagnosis. It has been such an emotional nightmare and I know you ladies appreciate that. I have learnt things I did not know on this journey so intend to pay back the kindness I have received by raising awareness of symptoms of ovarian cancer and might even do a 10k for charity x