Very very worried

My sister has a large mass on or near her ovary. She is very swollen and had to be admitted to hospital whilst waiting for her appointment with the Consultant. She had fluid on her lung which was drained and a week ago and then had 5 litres or so drained off her abdomen over the weekend. She is seeing the Consultant today but so far no one had explained what it might be. Obviously we are hoping it is a cyst but given her age (55) most likely it will be more serious. This thing whatever it is was missed by her GP for 6 months and 8 visits complaining of various problems. She did have a scan last September but it was clear. Repeated visits to her GP were diagnosed as IBS or asthma (due to a persistent cough which turned out to be the fluid on the lung. Finally a locum doctor sprung into action and she was given an urgent gynaecology appointment to the very next day. This was 8 days ago and they have had an MDT meeting with the appt to see the Consultant taking place this afternoon. However they have kept her in since Friday which leads me to think they may have to go straight into surgery this week. Does this sound a likely scenario?

13 Replies

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  • Hello Lovely,

    It all depends on what the outcome of scans biopsies and all the other tests they do are. If its worst case scenario then depending on what type and which grade then the consultant and their team will decide on the most appropriate course of action. My special person was told Ovarian Cancer and had the diagnosis of 6 months with chemo she's nearly 2 years later her onc team also said she had it at least 5 years before diagnosis, please remember everyone has their own journey and if you're not sure question it or ask your sister to question it.

    Xxx

  • The results of the scans and tests will determine what the issue is and the MDT team will decide on the best course of action for your sister. I'm sorry you and your sisyer are having to deal with this but you will know this afternoon what you are dealing with so I have fingers crossed for you both. Big hugs ❤xx Jane

  • I am so sorry your sister is in this situation. The not-knowing is one of the toughest things. The consultant is your best source of information, so aim to get the most out of the appointment with him this afternoon. Make a list of everything you want to ask, as it is easy to forget things once you are in the meeting. Don't feel awkward about asking a lot of questions; nothing is a silly question! Some people want to know more than others, so if you are going to the appointment with your sister, check with her first if she is happy for you to ask things or not. Jay x

  • Hi hun - gosh, what a shock for everyone. Your sister is definitely in the right place for sure and once the MDT have met, they'll have a better idea than anyone as to what the best course of action will be. It's always easy to worry it's the worst case scenario, but until you know what you're dealing with, try not to panic (easier said than done i know). All of us here can appreciate how frightening this is for you and your sister and we are here to offer any advice and guidance we can, especially once things become clearer. Thinking of you all in the meantime.

    Jemima xx

  • Thank you all. Confirmed as OC. CA125 was around 250 mark. Referred to specialist unit for treatment. Appointment next week. I am gutted.

  • Hi

    Sorry that you and your sister are faced with this awful situation. My mum and I had the same scenario just before Christmas.

    Mum is much older than your sister but her CA125 was 250 and she had ascites drained 3 times because of the wait to get treatment. That was the worst part. You will feel more in control once there's a plan in place. OC responds well to chemotherapy and after 3 cycles her CA 125 is 25. She feels much better and I'm relieved.

    Keep positive. There is fantastic support when you start treatment

    Keep strong

    Chris

  • Here is some positive information. Just something I learned when I was going through all of this. A CA125 number does not always indicate cancer. Mine after surgery was 300 something. Before surgery it was 125. And I had a tumor with cancer but it did not spread. So I asked the doctor what was up. He said infammation and other conditions can cause the ca125 to rise and it is not always a cancer scenario. So I guess when I had the surgery it caused inflammation therefore the number went up. I don't know if that helped or not. But now that this is almost behind me I try to help people to not get so alarmed with numbers.

  • It's hard Luv,I know,but it's not all doom and gloom now you know what you are dealing with a plan will be put in place and it is time to motivate your sister.grit your teeth,fight pants on and she will see your positive mood and it will be contagious.

    My family wouldn't let me give up,I'm so glad I grasped the nettle, I am still here 2 years after finishing chemo and in remission.

    It sound like she has ascites,I had them too and was drained over 2 weeks,then had my op to remove everything then 6 months chemo.

    It is so doeable,so I hope you get comfort from that.

    Best wishes,

    Carole xx

  • I'm so so sorry you and your sister find yourselves here. But as the ladies have said, the surgery and treatments are doable and do work, in many cases for a long remission and even possibly cure, all depending on stage/type/grade of cancer. So do not give up hope and stay strong for your sister, she is lucky to have you with her on this unplanned journey. Things will get better once there is a definite plan in place. The initial shock of diagnosis is horrific but it does get more bearable with time and when you know what support and treatments are planned. Take care both of you

    Madeline xx

  • The start of it all is the hardest part, especially when your sister probably sensed that something was not right for many months and her worries dismissed. I wonder what sort of scan she had ( maybe ultra sound rather than C.T.?) as it seems weird that nothing was detected In September - but now it is all action stations forward. You may think 250 is a high reading for CA125, mine was 3,500+ at the start and when you read more posts you will find many women have/had even higher... Chemo does reduce this drastically.

    Make sure that you and your sister write all your questions down before your next appointment - don't rely on memory.

    I have now read you have the diagnosis so all I can say is good luck - you will feel a lot calmer once specific treatments are underway...

    Lots and lots of advice here to read

    Janet 🌈

  • Hi there. CA125 of 250 isn't so high for an initial reading. I don't really know about these things but quite possibly it's been caught before it's spread. Good luck. Pauline

  • As i mentioned in an earlier post. Try not to get alarmed by numbers on the CA125. I had a high one after surgery 300 plus and then before surgery it was 125. Inflammation and other conditions can cause this to rise. And my cancer did not spread so I was very blessed. Mine is now 6 after chemo. I asked the doctor about all of this and different scenarios mean different things. It is not always cancer or spreaded cancer. God Bless.

  • It may not sound like it to you but this has many positive elements to it. Her scan was clear. The fluid situation sounds like it needs attention. But I would not spring to any conclusions at this point. I will keep you all in my prayers.

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