hello everyone very long story but i went into hospital march 2013 with abdo pain eneded up being in there a week then they dcided to remove my appndix , when they where down there they found some fluid in the end it came back that i had stage one ovarian cancer they took me back down 2 weeks later and removed everything booked me in fo r preventitive chemo any way i had that they said i as clear then in november i had risne levels of ca125 then wehen they looked into in further they said they dont think it had ever gone away and i was actually diagnosed with stage 4 c ovarian cancer i had 2 courses of trial treatment then i have been a ll clear for 3 months now last week i have lost over 9 lbs and have been told my ca125 is at 587 ? im now so confused and scared i know its not curable but does this mean its back i have only had 3 months remission please any advice would be greatful

8 Replies

  • Hi, firstly sorry to hear your news......for many rising CA125 indicates that it is 'on the march again'....but NOT for everybody, and only a scan can confirm (or otherwise) this. Secondly remember if it is back, the fact that you only had 3 months 'remission' doesnt mean you would only get 3 months next time, you may end up getting 3 just dont know. Whilst that is often annoying that you cannot 2nd guess what will happen with treatment, it is also kind of cannot know from others how you will react to treatment. What works for one may not for the other.....and vice versa.

    My wife had a recurrance within 5 months of 1st line treatment......2nd line treatment was stopped after 4 weeks because our Onc said it wasnt working and that nothing would work. We went elsewhere and had a chemo which we had asked our Onc for (but our Onc said it wouldnt work) and the next 13 months were the best time my wife had with her OC......I know its scarey but you will find great advice and support on this site.

    If your Onc hasnt arranged a scan then ask for one on the basis that your CA125 has gone up and to put your mind at rest......of course many things can make CA125 rise without it being a recurrance. A scan will help you to know what to do next if necessary. Good luck. Laurence,

  • Hi, Laurence has given you good advice so I just want yo send you a hug. Keep your chin up and continue to fight this horrible disease. Ann xo

  • Sandra had her first recurrence within 2 months after her debulking surgery and started 2nd line chemo immediately. Her CA125 had risen from only 10 to only 20 but it was the scan that showed up new spread so soon after her laparotomy. She still survived a further 4 years. Xx paul

  • Hello I am really sorry you are having a bad time. Laurences and Pauls replies are completely spot on about a scan . Your email really touched me and I can empathise with you as last August I was given the 'all clear 'from stage 1 only to be told in the November it had recurred and I too wondered if the OC had really ever gone away. I had some more surgery in April as the cancer had returned in an jsolated place and have just finished some radiotherapy. Personally I also think its about finding the best onc you can and being assertive about getting the best onc as I went thru a patch of seeing less experienced staff and finally saying I wanted to see the senior consultant as i was getting lots of mixed messages re prognosis.I also went for a second opinion last November at the Royal Marsden which helped alot even if only on an emotional level X Fiona

  • thank you laurence , ann , paul and fiona , having a scan today so will update later , thank you all for your time x

  • well had my scan and as i felt its back again there is a small shadow on my lung and the mass that was dispersing on my pelvic area has now gone bigger than what it was in the first instance i cannot even think

  • Hi Lexy you got the news we all dread and I am so sorry. Now you have to start being positive. There is a treatment out there for you and your oncologist will make the right decision on this for you. It is dissapointing, I am lucky, my remissions so far have been good. I am going for scan tomorrow so I could be back on the magic roundabout again. My 125s were ok 6 weeks ago but its the scan really that tells the story. You best bet to to go and talk to macmillian nurses or your gynae liason nurse if you have one. Also talk to your gp, they are good in these circumstances. More thatn likely your oncologist will come up with a treatment to suit you. I know a lady who was on chemo for three years and is off it now for the first time since 2011 and on Avastin so there is always hope, never ever give up

  • Sorry the scan result isnt what you wanted.....that aside you are lucky to get the result the same day as the scan....Christina always had to wait best part of a week which was nail-biting. Anyway basically its onward and upward & onto the next chemo which you and your Onc will decide upon.

    Then touch wood the next chemo gives you a longer remission....good luck. Laurence.

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