Confused

Diagnosed with OC or possibly PPC in April last year, had chemo and op and was clear in Nov, went for 3 month check in Jan and was told that the CT scan showed a mass in the liver but my CA125 had gone down to 15 (I had specifically acked for the scan, they were just going to do the blood test) anyway they decided to do a liver biopsy to make sure what they were dealing with, went for the results of that yesterday and was told these were inconclusive! So still not sure if OC come back in liver or primary liver cancer. It now has to be discussed with histologist, who will look at my origanl cancer again and compare it to the new one.

However it is most likely to be a return of the OC, which is not good news to have happened so quickly, therefore might be very resistant form.

The treatment that has been suggested is something called ECX (epirubicin, cisplatin and capecitabine) which having read the information leaflet is usually used for stomach and gullet cancers, but I presume they know what they are doing.

I wondered if anyone else has had this treatment and how they got on?

On the bright side, I managed to negotiate with the doctor a delay in starting the chemo (which to me feels like a reprieve from and death sentence) for another month, as I am well at the moment.

The plan is to have a scan in 3 weeks to see how fast it is growing, then go from there. It's like constantly being on a roller coaster and just when you think you might be able to get off for a while, it starts again.

5 Replies

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  • Hi George

    Sorry to hear you are in this position - not knowing exactly what you're dealing with and how it will be treated. I was in a similar position in so far as my OC recurred quite quickly and made an appearance on the liver. I am 4 years and 2 months down the line, still having treatment, but I am still here!!

    I haven't heard of ECX - its amazing how fast new treatments and combinations are coming into use. This has to be encouraging. I had a whole year off in between treatments even though the cancer was sitting there. I felt well like you so I am sure there is no rush to get on with treatment.

    I really hope the histologist comes back with a definitive answer quickly so you know where you stand.

    I am in Norfolk so not a million miles away. Which hospital do you attend?

    Good luck. Don't panic.

    Love Sarah

  • Hi Sarah

    Thanks for that, thats really encouraging, I'm thinking at the moment I will be lucky to still be here this time next year, so your message has given me a bit more hope. All the horrible treatment is worth it, if you can have some time off to enjoy life a bit more.

    I'm attending Addenbrooks hospital in Cambridge, what about you?

    Love George

  • Hi George

    I am at the Norfolk and Norwich most of the time but I have been on a trial drug administered from the Royal Marsden since September. This involves 3 weekly trips down to see them in Sutton but its worth it.

    I am sitting by the phone waiting from a call with my scan results. I hope you are able to enjoy the warm sunshine.

    Love Sarah

  • Hi Sarah

    Wow that's a bit of a haul down to Sutton, but as you say, worth it, Fingers crossed for good scan results.

    Love George

  • HI George,

    I am so sorry to hear what you are going through, I had my surgery in Addenbrookes and will be having more surgery this year (same hospital), they are an expert bunch of pros, you in a good hospital, I went out of county as I live in Lincolnshire but its only 60 mile to Cambridge.

    Sending you love from Tina xxxx

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