Ovarian cancer

Hi I'm new to this group Sandra Powell -

I am 41 years old three weeks ago, due to pain in right side, i was sent for an ultrasound and a 6.5 cm cyst was found. So then I was sent to see a gynaecology doctor, who sent me for a CT scan and CA-125. I saw the gynaecology doctor last Wednesday and he advised me based on CT results and elevated CA-125, I had ovarian cancer I am scheduled to have a full hysterectomy on the 16th may I'm a little scared

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  • Very sorry that you've needed to join this group, but welcome!

    It does sound like things are moving pretty quickly for you, which is very good.

    For me, the waiting from suspected OC until surgery was almost unbearable so do talk to friends/family if possible, and post here if helpful.

    Just a couple of hints, if you can make yourself available at short notice and would like surgery brought forward if any cancellations, write to your surgeon and tell her/him, i did get a slightly earlier date doing this, but of course you must have had your pre op appointment.

    Also, it came as a shock to me to find results (and therefore full diagnosis) is a couple of weeks after surgery, so more waiting, though they did tell me on the ward what they could from observation. Tbh i did not really take in what was said then as still on pain killers.

    Very best wishes for May, it is so much better when it finally comes around, it's the waiting that is so frightening.

    Finally, I hope all worry is for nothing and it turns out not to be OC. Everyone here will be hoping this for you xxx

  • Hi Sandra

    Welcome to our group most of us would have wished not to be joining it but as you will find out it is a great place for advice or just have a rant or just need talk to people in the same situation

    The beginning is the worst it's like being sucked up in a big tornado going round and round endless hospital visits, tests, surgery I know it doesent seem possible at the moment but once surgery out the way and treatment plan sorted does get a bit easier

    It is really frightening but don't google the statistics on there are so dated I did and thought I wouldn't last six month but I am now 3 years 4 month since diagnosis

    Use Macmillan or ovacome for any info

    Come on here anytime you need talk x Babs

  • Hello Sandra, welcome to our group. As your medical team feel from your CT scan and CA-125 results that you do have ovarian cancer, do ensure that your surgery is conducted by a gynaeoncology surgeon as opposed to a gynae surgeon. As surgery isn't scheduled until mid-May you have time to check.

    Are your ovaries and fallopian tubes also going to be removed? If so, and you've not yet reached the menopause you could do some research as what steps to take to mitigate the effects of going into immediate menopause. Younger ladies on this forum will be able to advise you.

    The waiting will probably be difficult but it's not until after the surgery when your cyst can be properly examined that the exact type and grade can be determined, and consequently future treatment.

    Best wishes and we also have lots of info here as what best to pack, etc. and what to expect while in hospital.

  • Hello Sandra, I'm so very sorry you've had cause to join the group. I was diagnosed at a similar age to you and felt a bit like I'd been swept up by a whirlwind.... If you haven't already found it, there's a really good guide specifically for younger women. It was created by the four main charities; Target Ovarian Cancer, Ovacome, Ask Eve & Ovarian Cancer Action. It can be downloaded or ordered for free from each of their websites. Lots of women who've been diagnosed & treated contributed too. Wishing you strength & hope Sxx

  • Sorry you've had to join us but welcome and I'm glad you've found the site early in your treatment as it's a mine of information and very supportive. Of course you are scared but I was diagnosed in 2010 with stage 3/4 and I'm still here and have had long remissions when I've been completely well. It sounds as though your disease may be at an earlier stage, too. Have they told you ?

    I recovered quite quickly after surgery. It's useful to get yourself as fit as possible ready for it, and then start moving around as soon as they say it's ok. Wind was the worst pain for me and that was relieved by moving, just around the room at first.

    I hop fit all goes well x

  • Hi Sandra

    Sorry you find yourself here with this news. I was 42 when I had my surgery in 2014. I had a full hysterectomy and two sets of lymph nodes removed which meant immediate menopause which frankly was not as bad as the terrible periods I had experienced throughout my life so I don't feel negative about it at all. The Psychological effects of having cancer for many of us the tough part so do seek help from the experts and on here as I found friends without shared experiences were well meaning but a bit unhelpful!

    Definitely ask to be put on the cancellation list thats excellent advice.

    Any questions or queries we are all here for each other

    Wishing you the best

    Esther

  • Hi and welcome. I too am new to this group via a similar path to yourself.

    I have had abdominal pain and awful periods - fast forward from an elevated ca-125, ultrasound and ct scan and 5 cm septated cyst I am now almost 4 weeks post surgery.

    It all happened really quickly over a 5 week period, so a bit of a shock, so I know how you feel.

    Can I ask how elevated your ca-125 was as I've not been given definitive confirmation of what my cyst and raised ca-125 might mean for me. Although I have been looked after by a gynaeoncologist - he hasn't made any comments except to say he would be keeping me under his care until my pathology results have come back - not received yet.!

    I feel a bit in limbo.

    I hope that being in this group helps and can say that everyone here seems really welcoming plus it's probably better to find answers here rather than googling things - not a good idea.!

    Welcome! 😊

  • Hi. Sorry you're in the situation you are in but this is a great place for support. I was a bit sceptical that forums weren't for me but it is honestly invaluable. A detached but experienced view is what you'll get here. Friends and family are fab but you'll get practical answers here.

    I'm very similar to you but the cyst was unexpected as id had no symptoms other than horrible periods which were unrelated.

    I was diagnosed in the new year following scan and total hysterectomy and debulking. I was 46. It is weird waiting for confirmation following the op but there is always the chance you could be lucky. Ca125 can be raised for other reasons.

    The stats are horrendous so don't look. Bear in mind all such stats are 5 years old and treatments improve. Plus there are different types of OC and therefore different likely successes. Also even Mr Chirpy/smiley (not!) my oncologist said being younger stands in our favour. Take it from me, from such a non positive person that was really encouraging!

    I'm half way thru chemo. Fingers and everything else crossed it works. Keep positive.

    Em

  • Hey Sandra!

    Welcome to the forum! It's a great place for advice and support and I would advise keeping in touch as you go through whatever treatment is planned for you!

    I was 45 when I was diagnosed and it was a shock for me too! My cyst was 16cm so big enough! I had surgery to remove that and when it was positive for cancer (stage 1 high grade) I had further surgery with full hysterectomy etc! I am a year out from Chemo now and am doing great thankfully!

    The stage in the process that you are going through now is definately the worst. The waiting with tests and appointments is so stressful and I was so anxious at that time it was awful! It does get better when plans are put in place you begin to feel much better about it all!

    Wishing you the very best of luck with everything! Keep in touch and let us know how you are getting on!

    Take Care!

    Dx

  • Just wanted to say hi, sounds like we are in a similar boat. I have a 10cm cyst and elevated ca125 and have been told I'm high risk. Am now waiting for news of an op. Wishing you all the best with all this.

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