Does everyone feel nervous when writing their first post?

I went to the Dr with minor symptoms. I'd had a cold and lingering cough, which I thought had caused me to damage or strain muscles around my pelvic floor and under my ribs. She examined me & found a lump in my abdomen. Not sure how I'd missed it - you could see that one side of my abdomen was a different shape to the other.

She arranged blood tests. My CA125 came back at 5,600.

CT scan showed a 20cm mass (which we've named Bella). Blood supply coming from my ovary. No apparent spread anywhere else (phew!).

Had biopsy last Friday (probably for grading & staging).

I've been told by my GP, McMillan nurse, my specialist consultant and by the surgeon that they all believe that I have ovarian cancer.

So why is it that until they tell me the results of the biopsy do I still think that this is a cyst?

I'm tired, uncomfortable and often have painful twinges at various points around my abdomen.

I see the consultant or one of the team next Tuesday for biopsy results & to find out the treatment plan.

I don't think it's sunk in, or perhaps the practical libran in me has taken over & I'm just waiting for things to start happening.


18 Replies

  • Hi Val

    I think we all deal with the diagnosis differently. When I was originally told I had a large cyst I said 'oh that's ovarian cancer' which I was told I couldn't possibly know and they certainly didn't know until after the results of my op and biopsy. I just knew, my mum had had ovarian cancer. It wasn't until I had it confirmed the day after my radical hysterectomy that I cried or in fact started to deal with it. Here I am now over 8 years later, two recurrences, but still here NED (no evidence of disease) and living life day by day as none of us know what's round the corner. I wish you well for your results and going forward. Please keep us updated and keep posting. You will find support and advise here. Kathy xx

  • Thanks Kathy. My partner was diagnosed with breast cancer last March. She had it successfully removed and has recovered well. It just seems a little unfair that it's happened to both of us in less than 12 months! V

  • Both you and your partner are obviously having a really tough time of it . I'm glad to hear she is recovering well. I nursed my mum at home with her cancer and was diagnosed myself just over 17 months later. I sometimes wonder if my cancer was caused by stress - albeit I didn't show it outwardly. I was dealing with my mum and going through a grievance at work as I was being bullied - seems odd for a 46 year old to be bullied especially as I am quite assertive - but bullied I was and I won that grievance. I had two recurrences, one shortly after my dad was diagnosed with cancer and the second just after he died. Please keep us updated. Wish both you and your partner all the very best xx

  • Hi, welcome to the party

    I was exactly the same as you, however the consultant also thought it was a simple cysts, so histology was a surprise. Stage 1c, my CA125 was 34. I've been clear for three years and recurred in September 2015 so back on the conveyor belt.

    The CA125 does point towards it being OC, however I read about a woman who presented with a CA125 of over 5000 and it turned out to be her thyroid upsetting the reading. It was a paper in the BMJ.

    I hope it isn't anything serious, fingers crossed for you


  • Really sorry you've found yourself in this situation. This is a great forum with no shortage of wonderful, knowledgable women who are doing battle with variants of OC.

    I'm relatively new to this too, but I totally resonate with your 'denial'. I doubt we're alone.

    I was taken into A&E with a partially collapsed lung. More perplexed by the level of activity surrounding my admission, given that I thought I had asthma (silly GP diagnosis), my husband enquired of the lovely young Doctor who had arranged for immediate scans and and Xray, what on earth could have caused his previously healthy and very active wife to be so suddenly poorly. After gently squeezing my hand the doctor replied ' Pneumonia, TB or.....(very serious Holby face) ..Cancer'. I grabbed my hand away pretty sharpish and said 'Behave yourself mate..' and 'are you even sure that Xray is mine?, that neck looks a bit scrawny to me...'

    Denial? Yep.

    A range of emotions and tantrums later, I'm still trying to get my head around it all.

    That said, you seem to be remarkably measured and balanced (certainly more so than I) and I believe this will hold you in good stead to work with your results and through your options.

    I would make sure that an Oncologist opinion forms the diagnosis though. Gynaecological Cancer = Gynaecological Oncology not just Gynaecologist. I'm on a mission to make sure that women should be referred immediately to an oncologist and not as in my case a obstetrician gynaecologist. Thats another story..

    My very best to you and please keep us updated.


  • Thank you, yes I have a specialist ovarian cancer team, most of who I have met.

    I keep saying "but I only had a cough"....

  • Yes everyone feels nervous when posting first but most of us will do it because we feel we need support and hear good stories. Well you will settle once a treatment place is in place and you will feel more in control. If you think of any questions you need to ask, write them down as you think of them to have them ready for the consult. I had no great symptoms on diagnosis just a bit of pain which I thought was from bending washing the dog. My gp did find a mass and had me in hospital asap. I had never been in hospital before and didnt know what to expect. One junior doc advised me not to pre empt but of course all these things do run amok in your head. That was in 2005/2006. I am still here alive and kicking. I have had recurrences but as long as the cancer is manageable I am okay with it I think. I am glad you have a team who is caring and you will find the Macmillan Nurse very supportive. We have a different system here in Ireland, we have a gynae oncologist and a gynae liason nurse and then you see the oncologist post surgery. Be kind to yourself over the next few days and weeks and do come back and let us know how you are doing

  • Hello Val,

    I first went to my GP because I had a slight ache in my hip and I thought I'd done something dismounting from a horse. He said there was nothing wrong with my hip but examined my abdomen and said he could feel a lump. I couldn't feel it (although I soon could as it grew). He took some blood and said one of the tests was to rule out ovarian cancer. I really thought to myself he's just doing that because I'm 67. It came back high and while I was waiting for various other tests I still didn't really believe it. I even came up with the idea that my blood had been mixed up with another sample. As my symptoms started to increase, I did start to read a lot on the internet but didn't post anything until the day I got my diagnosis.

    You've come to the right place; there's a lot of encouraging kind ladies here who have been through these initial stages. Many great stories of survival and lots of good advice to help us get through our own survival.

    All the best.


  • Hi Helen, yes I keep telling myself that they've mixed up my results, or just that they are simply wrong.... I mean 5,600 for my CA 125 .....that can't be right surely. But....each time a new specialist tells me the more I have to accept it.

    I also think that since they found it, I now have the symptoms that I either didn't have before, or I didn't notice...and they are getting worse quite quickly. I just want it all out now and quickly....although I suspect they are going to try shrink it first. Not sure I would want to tackle a 20cm beast!


  • Val, I have the same with the symptoms. As soon as a medical person asks me if I have so-and-so and my answer is no, within two weeks or so I have it.

    I then fool myself into thinking this must mean I've been caught early whilst knowing in reality this just isn't true.


  • I think denial is actually a pretty valid coping technique.

    Every stage of my diagnosis was met with denial. Every stage of surgery/treatment was met with denial...

    It breaks it down into manageable chunks.

    You deal with the news of a cyst, then you deal with the news it's a tumor, then you deal with the news the results might come back as cancer, then you deal with what comes next. It stops you leaping ahead and trying to tackle it all at once.

    On a side note, I had a 25cm mucinous tumor removed via keyhole surgery (That one was borderline).

    The 6cm mucinous tumor that was cancerous came out via an open. Size isn't everything when if comes to surgical removal :)

  • That's a very large key Indego!

    My surgeon has indicated that he'll remove everything, so it will be open surgery - to be honest I'm glad - I don't need it any more & is only likely to cause me more trouble.


  • I ended up having an open staging after the keyhole removal of the borderline tumor, so if they go in open you'll save yourself a surgery.

    A few women I know online have had their staging done via keyhole, along with the ovary/tumor removal, and they haven't gone on to have any issues.

    I was kind of jealous they got out of having the open surgeries... But I've come to quite like my scars. They're kind of like badges of honor for what I've come through.

    ...Plus. You get a morphine button with open surgeries. Morphine buttons are the best invention ever.

  • So sorry to hear it may be OC. I kind of felt the same, a bit disengaged. It's a coping method and helps us to carry on. I'll keep my fingers crossed that all turns out well for you. I had an op in Nov 2014 and it wasn't as bad as they thought. All signs of C removed. So far so good. Next CT scan is Sat 23 Jan. Fingers crossed all will be well.

    Wishing you well

    Aemi xx

  • Thank you Aemi, I wish you well for your scan on the 23rd. It does help to hear the positive stories.


  • I don't know if I'll mess with your mind even further and wasn't sure if I should post this, but I had a 22cm 'mass' which my local hospital - only an ObGyn consultant - also thought was cancer. I held on to the fact that my GP had said, 'It's a v good thing that you're feeling so well. When you walked in, I thought, wonder what's the matter with her. Perhaps she's stubbed her toe.' I was only there because an A&E nurse thought my abdo was distended, but the junior doctor, encouraged by me, dismissed it as OK.

    And I was only in A&E because I'd fainted during root canal and the dentist had a bit of a panic and called an ambulance. I just wanted to get home, not be diagnosed with something serious.

    We called it 'Spawn of Satan'. Even when I was rung up by a CNS after scans and an MDT meeting, and she started talking about 'suspicious' cysts on my omentum and chemo, not surgery, it didn't really hit home. (Well, I was up a ladder pruning the hedge at the time. That's not how you're told you have cancer. I got 'a million apologies' for that.)

    They could be wrong, I thought. Haven't even had a biopsy yet.

    And my point is: they WERE wrong! I was transferred to a teaching hospital and the lovely, lovely gyn-onc consultant said, 'Well - I think it's benign and am going to operate in 13 days' time'. It was a Borderline mucinous tumour. 'Cured by surgery'.

    I don't want to falsely raise your hopes. My Ca125 was 130 but they thought it had spread to the omentum. However, you've got to get through the next bit, the worrying bit, the worst bit, waiting for results. You can either think the worst or hope for the best. Even if it does turn out to be bad news, I'd have liked to have heard a story like mine in the run-up to the appointment at the teaching hospital.

    Btw - my biopsy was 'inconclusive'. Which I take to mean that they didn't find any malignant cells, but the tumour was so huge they couldn't rule out that there might have been some in a bit they hadn't sampled.

    The very best of luck from a gloomy old Capricorn. Not usually the Pollyanna's of the Zodiac, but well-grounded I like to think.


  • Blimey, that was a roller coaster ride for you. I guess there is always that little doubt, the little glimmer of hope and your experience shows that it's not always a false hope.

    Thank you for sharing.


  • Hi, when I saw the consultant four the first time and he showed me the large cyst on ultrasound scan, I asked him if he thought I had cancer but he wouldn't be drawn, he told me hge could not tell me that until he operated. I still felt it was cancer but my husband preferred not to face it until the consultant gave me the answer day after surgery. Ann

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