First post here and terrified, What happens next. - My Ovacome

My Ovacome
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First post here and terrified, What happens next.

12 Replies

Hi All,

First post here and terrified. Just back from a ultrasound scan and what they thought was a cyst has doubled in size in 4 weeks ( could well be a fluid filled cyst though) Been sent for an urgent blood test and referral to oncologist. Ultra sound woman said it doesnt look good, though if it is cancer it is very small and early. Other details, Im 47, not overweight, healthy lifestyle but a bit of a worrier.

So trying not to get ahead of myself and of course panicing. How long does the CA125 take to come back and what happens at your first appointment.

Also Im in Sussex does anyone have any recommendations of if Brighton, Haywards Heath or Worthing are the best to be sent too.

Im trying not to google to much stuff as I dont want to scare myself any further

Thank you all for just listening


12 Replies

Snow, try not to panic or worry too much, they will see you pretty quickly, my CA125 results were with my consultant in the afternoon after having it taken at my docs that morning, but you can usually ring up specialist nurse for the results the following day.Good luck. Sue x



"Small and early' is (even if it is cancer - which is far from a given) is GOOD. Ring your GP for your ca125 the day after it was taken - should be with her/him by then. Elevated ca125 is only an idication - NOT a diagnosis- as any inflamatory process can send it up.

Very best wishes,



Thanks Bosue and Isadora, trying to stay calm and grounded, and not googling to much. Going to watch a chick flick, hot bath and early to bed.

Thanks to you both



Hunni dont google at all-it will only give you bad news, my consultant said not to google anything as theres so much mis-information on the net and what you are reading is about others and stats. Well I dont take any notice of stats! Until you have anything to 'worry' about (and lets hope that you dont hun) try not to worry too much x Easier said than done I know, the mind is a cruel thing that plays tricks and makes us so scared. I dont really think about what I have too much now, Im getting on with my life and not letting it take over any more than it has-Im in control, not 'it'.

Keep us posted on your results and as Isadora said, a rise in ca125 isnt an indicator of OC

Kate x


Thanks Sunny, bit overcome by the care from you all so quickly. Thank you

Snow x


Hi Snow, I am at a similar stage to you and first on here. Went to my GP c/o lack of energy, tiredness and in-between bleeding/spotting. Went for routine ultrasound and radiologist then wanted to do transvaginal ultrasound. She said she thought I had another cyst on the ovary then later said there were lots of them. I have a long gynae history of a cyst on ovary at age 21, then pre-cancerous cervical cells, unexplained fertility other than slight blockage one side(weak fimbria) then five years ago had a polyp removed. I am approaching 50 and now rather p...eed off to learn still more problems. I have googled galore, which was helpful to me as I have some basic medical background. Can see there is a high possibility I may have to have surgery to remove what ever is going on and actually nothing is very clear until actual surgery and biopsy so to speak. I am more relaxed now just rather daunted by the incapacity of any surgery and disruption etc. One thing is for sure if caught early, anything sinister is very treatable, and the success stories and tremendous emotional support on this forum prove that. Try and keep busy and not worry too much. Perhaps change routine before bed to some relaxing time and activity as that is what I find most difficult, laying there awake mind doing overtime! I am hoping to see GP at end of week and be referred for more investigations and take it from there. Keep in touch.


Hi Snow!

You have come to the right place .... there are lots of us who have had similar experiences and are still well after it all. I'm nearly 10 years since my op for OC. Google is scary sometimes. Wait a while yet ;-). I think I described on my profile what happens in most cases to get a diagnosis. It isn't at all scary. I can honestly say it was all reassuring and I recovered well cos I had an early diagnosis. I know I'm really lucky ... that's why I'm on here now.

Let us know how you get on

All the very best

Love Wendy xx


Hello Snow

I was in your situation just over 6 months ago so I know what you're going through. It was stage 1a. Obviously the surgery knocks you sideways but the post op pain was well controlled and negligible. All the others have given you good advice and info on coping with worry and negative thoughts so I'll just wish you all the best. Go well :-) Linda


Hi So sorry you are having all this worry. I also had a referral to a Gyne Oncologist as I had an ovarian mass that grew from 2cm to 5cm in weeks. I was high risk as had previous Breast cancer and mass looked suspicious also CA125 was raised at 57. Had operation to remove ovary on 29th Feb turned out cysts on both ovaries so both were removed and samples taken. My histology was all good so all that worry over nothing really. CA125 unless really high is not a good marker so don't get to hung up on that

Wishing you well with your journey and hope all turns out well for you also

Wendy x x


Hi Snow

cant help with the hospital as am in suffolk, but I do know that they will send you to the most appropriate place, as I bypassed my local hospital and went to addenbrookes, as not all hospitals deal with ovarian cancer treatment. I remember that this is a scary time, but the CA125, as everyone else says, is not a good marker for everyone, and does not always indicate what the real issue is.

you should get a quick referral to your hosp for further tests to check stuff out a bit more.

hope that lots of people saying the same thing help to reassure you!

p.s. even tho I googled, didnt help me at all- try and keep away from that search button!

take care




Hi Snow

I ended up post surgery going to see a great gynae/oncologist in Brighton who was so reassuring and caring. Are you in West Sussex? Just wondered as you mentioned Worthing.

I'm in Bexhill so actually had the op in Hastings- like you they found a cyst which turned out to be a very rare tumour that just required excision and no further treatment except for a couple of CTs to double check nothing else was going on.

Try not to worry too much,


Anne x


Hi Snow,

I am in Sussex. My daughter had OC 2 years ago. Her first op was done in Worthing for a massive ovarian cyst but because of what they found she was referred very quickly to The Royal Marsden and went through two more ops there. She is still under their care for MRIs and blood tests and monitoring. She has her treatment in Worthing. The CA-125 is not a great indicator. My daughter's level was not particularly high and yet she had a very serious, rare tumour! It can be raised though for reasons other than OC. I agree with not googling - I scared myself silly in the early days of all this and ended up confused as well. Far better to wait and see, which is incredibly hard if you are inclined to worry as indeed I am!

I really hope your outcome is good.


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