Anyone else with mucinous cyst/adenocarcinoma?

Parisdeb
Parisdeb Member Posts: 4

Hi. Just found you all and thankful. I was wondering if I am alone with my type of cancer - a mucinous cyst on my right ovary with adenocarcinoma tumor inside. 3 years ago I had exact same type of cyst on the tail of my pancreas (but tumor much smaller and consider stage 1 - this time there were mets on the omentum, but no place else that they were able to identify - and they removed everything in the area - full hysterectomy, omentumectomy, ovaries, tubes).

Just curious, as I'd like to compare treatments (doing gemzar+xeloda for 6 cycles of 3weeks on, 1 week rest).  I know my situation is unusual (the researchers at my hospital love my cysts :) ), but you never know!

Thanks, 

Debbie

 

Comments

  • abrub
    abrub Member Posts: 2,174 Member
    edited April 2017 #2
    Any chance that this is of appendiceal origin?

    That's how my mucinous adenocarcinoma of the appendix was found.  If there is any possibility that the appendix was involved, you need an appendix cancer specialist.  Feel free to PM me for my experience (or click on my name to see my "About Me" page.)

  • Parisdeb
    Parisdeb Member Posts: 4
    edited April 2017 #3
    No signs on my appendix, but

    No signs on my appendix, but I'll make sure my oncologist looks at that area during my next scan.

    Actually, and weirdly, my pancreas cyst was determined to be traced back to an ovarian cell which migrated when I was an embryo (at 7 weeks of gestation!). The theory is that when the digestive track cells broke away from the reproductive track cells, a rogue ovarian cell clung to what would become my pancreas at the tail. I guess it waited until I was going through menopause to activate and start growing... pretty weird. And now 3 years later, after a really bad period of personal stress at yhe end of the summer,  a new one developed on my ovary (there was no sign of it in June at my last scan, so it was fast growing.)

  • abrub
    abrub Member Posts: 2,174 Member
    Parisdeb said:

    No signs on my appendix, but

    No signs on my appendix, but I'll make sure my oncologist looks at that area during my next scan.

    Actually, and weirdly, my pancreas cyst was determined to be traced back to an ovarian cell which migrated when I was an embryo (at 7 weeks of gestation!). The theory is that when the digestive track cells broke away from the reproductive track cells, a rogue ovarian cell clung to what would become my pancreas at the tail. I guess it waited until I was going through menopause to activate and start growing... pretty weird. And now 3 years later, after a really bad period of personal stress at yhe end of the summer,  a new one developed on my ovary (there was no sign of it in June at my last scan, so it was fast growing.)

    Then likely not appendix

    A good pathologist reads the origin of the cell, and with your history, it sounds definitely ovarian.  For me, my tumor was found on my ovary (my appendix looked normal) but the pathologist could tell that the tumor had originated in the appendix.  Some simply assume that what's found on the ovary originated there, and I know of appendix cancer patients who were first incorrectly treated for ovarian cancer.  The chemos and treatments are different.  That's why I was asking.

  • Nouna78
    Nouna78 Member Posts: 1
    Hi, I wil lshare my case

    Hi, I wil lshare my case below. excuse my not so perfetct English.

    I was diagnosed with OC in 2012, had three large cysts on both ovaries, inside the cysts there were adenocarcinoma tumors, i had total hystrectomy and i was 34 years old. after the surgery the doctor recommended 6 cysles of chemotherapy as a (precaution) because all other sites were clear including lymph nodes. Then  iwas on remission for three year.In October 2015 i had aother large cyst in the pouch between bladder and rectum, i had another surgey and a temporary iliostomy because surgeon had to remove part of the rectum where the cyst was attached. In pathology it was OC cells. this time, i chose not to have chemotherapy and went on a complete vegan diet and juicing and made major changes to my lifestyle. i am on remission still for 20 months. last CA 125 test shoed a slight increase and is 23. i am a bit worried i will be doing more tests next week. fingers crossed!

  • Trp35
    Trp35 Member Posts: 2
    edited June 2017 #6
    Debbie - your case is very similar to mine

    just recovering from surgery on recurrent ovarian cancer of the mucinous type. 2 years ago a tumor was found attached to one of my oval. It was the size of a six month fetus.  They removed ovaries tubes uterus and all other girl parts. This second surgery removed my spleen, lower curvature of stomach, lympno, omentum and a small piece of my appendix. Starting chemo on Thursday. Carboplatin, taxol and advisten