Ovarian Cancer not in Ovaries

I was diagnosed in July 2017 with Ovarian Cancer in lymph nodes near my pancreas, stomach, liver and heart. There was no cancer in my Ovaries nor had it ever been in my ovaries. This makes my Ovarian Cancer very different to the many other women with OC that I have spoken with. Is there anyone here that has had a similar diagnosis to mine - ovarian cancer that is not in the ovaries? Hoping to connect with someone with a similar presentation.


  • Hi JulesCWA,

    I have not had the same diagnosis as you but just wanted to reach out and say you are not alone. I have been fighting Ovarian Cancer for 25 years on the 11/3/2020.

    The Ovarian Cancer i was diagnosed with was found at stage IIIC it started in the right ovary. Everything was removed in the initial operation and I was give a very poor prognosis. Lucky to see 2 1/2 years gone by 5 years. My journey has been long and at times really tough. I have continued to have Ovarian Cancer treatment through out most of the 25 years and probably will for the rest of my life.

    Never give up hope no matter what one of my little encouragement sayings that I have. Try to always be positive (easier said than done) and I play the glad game on the tough day find something to be glad about something small ( I got out of bed, I saw a butterfly, heard a bird sing) just little things and that helps me start the really tough days.

    You have joined a great group of people and somewhere out in the readers you will hear from someone who has a similar outcome to what you're experiencing. Just talking to other woman fighting this disease can be very uplifting.

    Have a wonderful day.

    Kind Regards

    Michelle xx😊

  • Hi Jules CWA, mine is all through my peritoneum. They don't know whether it is in my ovaries or not as I am inoperable but apparently the fluid/cells they drained and looked at appear as OC (which I don't fully understand as apparently Peritoneal Cancer looks exactly the same as OC). Anyway, let us know if you get any more information.


  • Robyn, I have similar. I had both ovaries and fallopian tubes removed 10 years ago due to cysts (not cancer).

    I have been diagnosed with Ovarian Cancer 9 months ago but in fact it is peritoneal cancer - the tissue is the same apparently.

    I've had 8 rounds of chemo and I'm now on IV Avestan every three weeks. (An antibody treatment.) So far so good but the oncologist has told me that it is a wait and see situations I have 3 more sessions to go. The government covers the cost of it for one year only. $36,000 for the treatment. I dread that things will change once Ive finished the treatment as my doctor says that the average time that it will return is about two years. But then there are other treatments. I'm 72 and frankly I don't know if I can go through chemo again. The doctor said that the next chemo if I decide to have it will not be so gruelling.

    Good luck Robyn and if you feel like it, please stay in touch.

  • Hi JulesCWA. Please see my comment to Robyn. This may explain a little bit as I'm in a similar situation.

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