What's next? I'm new here

After going to the doctors with heavy bleeding for 5 weeks, i was sent for a ultrasound where they found cysts on both ovaries and fibroids, had a Ca 125 test, which came back raised. been back to hospital today for more tests. The doctor is sending me for a CT scan and told me it is highly likely to be Ovarian cancer and i've got to have a total hysterectomy. What happens at the scan? Do you get results quickly? i was a bit shocked when the doctor gave me the news, that i didn't ask questions, now i'm worrying

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  • Being told you may have cancer is a devastating blow which can make you numb... I had bleeding for two months they found a mass on ultrasound then I had ct ,... the scan results took maybe two weeks but they may discuss your case at mdt meeting to get best treatment options .... during the ct they may inject dye or give you an aniseed drink and water ... the dye might make you feel as if you have wet yourself strange sensation don't worry ..... once you have a diagnosis you may have an op and them chemo if it is found to be cancer ... there is also the option of chemo op then more chemo it all depends what is seen on your scan .... try not to worry this is the worst stage waiting fir results once you have a plan and know what your dealing with it dies become easier .... this is a great supportive forum we are all in this together .... sending huge hugs and tins of positive vibes 🤗

  • Thank you, it's lovely to hear from people going through the same thing. Had my ct scan today, now a waiting game till my next appointment next week x

  • Hello,

    The CT scan is quite straightforward and only takes a couple of minutes. Assuming you are having a similar scan to the one I had, you might have to have a contrast drink before hand (takes a while to drink it all) and IV contrast too. The IV contrast goes through a cannula and can make you feel like you've wet yourself, which is a very odd sensation! The scan itself is over and done before you even realise it. How long the results take depend on your hospital. Mine have been around a week, but it's really how quickly they can be looked at.

    I'm sorry you are in this position and I'm keeping my fingers crossed that it turns out to be nothing significant.

    Yosh x

  • Thanks for the reply, you were spot on about the feeling of wetting yourself, it was a weird feeling. Just got to wait for results now xx

  • It's odd, isn't it? I got up and had to discreetly check I hadn't wet myself, even though they had assured me I wouldn't!

  • Lol, I did exactly the same, a quick glance back to see if there was a wet patch x

  • Hi nik7nak, beleive me this is the worst bit waiting for the results. Once your a couple of weeks down the line and they know what the results are you be well looked after. Put your faith and trust in the professionals xxxx

  • Thank you, this site is so helpful and everyone is so kind and reassuring. X

  • Do you know how much I love these doctors who tell you that it's highly likely that you have cancer?! Not at all!! Mine was realistic and said "We can't rule it out" which is much better as in the majority of cases you need a biopsy or a visible look to confirm.

    There are usually quite a few tests and days/weeks to get through even before you get to surgery then there may be a wait for the Pathology report so it can be quite difficult to get your head around that. My experience was first CT scan 21st Jan 2016 followed by external.and internal Ultrasounds, MRI, and contrast dye MRI then another contrast dye CT and finally surgery on 8th March.

    Keep positive, keep breathing, keep talking, keep.sharing.

    Write down all.your questions on a big sheet of paper and take a friend if you can with you to your next meeting so they can write the answers and go through your list taking all the time you need to make sure you don't forget to ask something...easily done!

    Take care

    Clare

  • Such good advice from you Clare, you always give such wonderful support. How are you? Thought of you a lot the last few days. xx

  • Thank you ❤️💐 I finally received a call at 5.35 pm from the nurse yesterday after the morning MDT which confirmed recurrence. Just now waiting to see if I meet criteria for trial. Doing ok and still smiling xxx

  • Lots of hugs Clare!

    Keep on keeping on your a beacon of hope on this forum!

    Mind yourself!

    Dxx

  • Sorry to hear it Clare,

    Take care, lots of hugs

    Zaneta, xx

  • Rubbish news but I suppose now at least you know what you're dealing with. Good luck with the trial criteria, keep up your positivity, sending big hugs and lots of love ❤xx Jane.

  • my doctor did say until they do the hysterectomy and take it all out, they couldn't be 100% it's cancer, just waiting for results of ct scan now and then I'm sure they'll book me in for it :-/ xx

  • My Oncologist told me, she was positive it wasn't cancer, and my CA125 test came back negative. So I had to have a radical hysterectomy after finding Ovarian Cancer and I had a big tumor too. So maybe you don't, I hope you don't. Until they can take it out and have the pathologist look at it. You might have some hope, sending love and hugs your way 💕

  • Thank you, until I get my results I keep having up and down days, just hard waiting xx

  • Yes, it's hard waiting I had to wait 2 weeks, the Oncologist said they found cancer after my surgery, but couldn't tell me the stage yet. So I found out I'm at stage 2, in which I'm lucky it could of been higher.

  • Hey NikNak!

    Doctors can be very blunt sometimes my CA125 was never above normal so all docs were very positive about my cyst being benign and it wasn't! My doc explained it very well and while I was hopeful when I went in to surgery I was aware that it could be cancer and it was! There are others who have high CA125 and it turns out not to be cancer they really can't tell fully until they test the cells!

    You will prob have CT and MRI before anything happens! These scans give the doctors a lot more information about what's happening inside and can give them a fair idea of whether or not it's cancer but they cannot say for definate until they go in.

    Best of luck with everything! This is a very difficult time and I remember it well! It's actually the worst part of the process IMHO so hang in there! This forum was a critical part of both my diagnosis and recovery process it helped me to get through it all and I hope we can all do the same for you!

    All the very best!

    Dx

  • Thank you, you're right this forum is very helpful and everyone is so nice. Just waiting for results and next steps now xx

  • Good Morning Nik7nak,

    These beautiful ladies have describe the process nicely. As you can see Dr's delivery of such news is all over the place in their methods.

    Once I stood up for myself and nearly demanded (not my style) for a scan to find out what my tummy problems were all about, because I really thought I was dying. My Physicians assistant faxed me the scan results with no warning that everything indicated Ovarian Cancer from what the radiologist was seeing, just let me read the news alone. They referred me to an ob/gyn who then referred me to a gyn/onc. I am lucky in that my gyn/onc has a heart of gold and I trust her totally. I sure hope your experiences from this point out will be a bit kinder and clearer in the information they present to you.

  • Thank you, I'm finding reading all your experiences on here very useful so when I go to the appointments I feel a bit more clued up. X

  • Hi. Not much meaningful to add. We all know what a shock it is & the awful uncertainty of the wait. I wasn't told for sure it was cancer until I'd had the hysterectomy & they'd had a look inside. I then had 3 months chemo before they opened me up again to remove the tumours. As regards the scans - no real problem - just the uncertainty of the 1st time. For me, my results can be sent (emailed) straight away to my onc, so COULD be only an hour. BUT, things don't normally work that smoothly in the hospital system. I've learned to tell my onc's secretary when they've been done, so she can chase them up if they haven't arrived when my appt with him is due - about 4 days later. I've been on this treadmill for 5 years - still standing, still positive. My CT scans take about 20 mins all-up. Have to drink a litre of water in the hour prior to your apt time (no fasting). I usually drink just 3/4 litre & keep the rest to flush it thru after. I feel fine after but just a bit tired (mind you, I have another scan at the same time, so could be that one makes me a bit tired). When I had my first symptoms, I had an ultrasound, which showed a "mass", followed by a CT scan. On the strength of those, I had the hysterectomy. I've never had an MRI but I did have a PET scan once - that shows what's in there in colour. Best wishes. Pauline

  • Thank you, I had the scan today, not as scary as I was expecting, just got to wait for results now x

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