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Am I the only one? Looking for someone with a similar experience.

In July of 2019 I went to the ER with an appendicitis. The appendix was removed. Two days later I was told I had cancer in my appendix. I was just 50 at the time so they decided to do a colonoscopy before going back in to remove more tissue to make sure they had clean margins. A very large tumor was found in my colon right next to where my appendix was. I then had a right hemicolectomy and 74 (yes 74) lymph nodes removed of which 8 were positive for cancer. I was a 50 year old very healthy female with Stage 3c colon cancer with no symptoms other then the appendicitis. 12 rounds of chemotherapy treatment followed. I had No Evidence of Cancer for 12 months but now it's back. And of all places, it's around one of my ovaries. Colon cancer around my ovary? I am currently on adjuvant chemo to reduce the tumor and will hopefully have surgery soon to remove it. I am now Stage 4 colon cancer with Mets to the ovary. I have looked for someone else with a similar experience to ask questions or help support but have yet to find anyone. My prognosis is not the greatest but I know we are all individuals with individual stories and experiences. I am hopeful for a cure or at least several more years with my beautiful family. Is there someone out there with a similar experience? I would love to chat. ❤️

Comments

  • grammadebbie
    grammadebbie Member Posts: 464
    edited May 12 #2
    Keep Fighting

    So very sorry that it has recurred.  I am not in the same situation as you..  I was Stage IIIc in 2007 with no recurrences.  Recently PET scan showed suspicious for 2 areas of active malignancy in Sigmoid Colon.  Had colonoscopy and it is clear so now they say it is outside the colon.   More tests.  Going to a Major Cancer Center for 2nd opinion as they have the latest treatments available.  Remember to seek out the best treatment options and educate yourself.  You have to be your own advocate.  Please keep me posted.  Praying for you!

  • Tueffel
    Tueffel Member Posts: 311
    Abrub

    Hello,

    Abrub is dealing with appendiceal cancer. Considering it is different than colon cancer is some instances I think her tipps might be really helpful for you. 

    Maybe you find some people similar to your history when you include in your research Krukenberg tumor. It is called like that when GI tract cancers spread to the ovary even though I am not sure if it is all GI cancers or only some. 

    I wish that your treatment will work. Stay strong!

  • pamness
    pamness Member Posts: 515
    edited May 13 #4
    My situation was different

    However, I have heard of somewhat similar things.  Are you being seen at a major cancer center?  Boston, Houstine, Stanford, Md Anderson, Sloan kettering, etc. this is really important for odd cases like yours.  

  • Runningwithscissors
    Runningwithscissors Member Posts: 3

    Keep Fighting

    So very sorry that it has recurred.  I am not in the same situation as you..  I was Stage IIIc in 2007 with no recurrences.  Recently PET scan showed suspicious for 2 areas of active malignancy in Sigmoid Colon.  Had colonoscopy and it is clear so now they say it is outside the colon.   More tests.  Going to a Major Cancer Center for 2nd opinion as they have the latest treatments available.  Remember to seek out the best treatment options and educate yourself.  You have to be your own advocate.  Please keep me posted.  Praying for you!

    Thank you. I will. ❤️

    Thank you. I will. ❤️

  • Runningwithscissors
    Runningwithscissors Member Posts: 3
    edited May 13 #6
    I am not at one of the major

    I am not at one of the major cancer centers but I will hopefully have my surgery at OHSU in Portland. Thank you for your advice. It has given me something to think about. Maybe I need to look at this differently.

  • darcher
    darcher Member Posts: 304
    edited May 14 #7
    Cancer spreads
    As I'm sure you probably aware cancer's goal is to spread everywhere. From its point of origin it moves via lymph nodes and bloodstream to find a new home and does it's thing. The name given is usually associated with the organ it's taken up residence in. The number of variables is in the millions as to where and why it starts where it does. For me, I had a brain tumor which was benign albeit huge in size which started about 20 years prior to having colon cancer. Was it the source or cause of the colon cancer? Who knows but I was lucky enough they caught them when they did. The best bet is stick to the program and make sure your medical team knows everything you can think of to tell them. More knowledge leads to better decisions.
  • abrub
    abrub Member Posts: 2,171
    edited May 14 #8
    you need to get to an appendix cancer specialist

    My appendix cancer was found on my ovary.  Treatment for appendix cancer is not completely the same as treatment for colon cancer,  but an oncologist who does not specialize in appendix cancer will treat it like colon cancer.  you will likely need another major surgery along with some form  of intraperitoneal chemo (HIPEC). There are experts in Washington state and California.   there are also some very helpful FB groups.

    PM me for more info.

    Alice

  • Steelkiwi686
    Steelkiwi686 Member Posts: 73
    Colon cancer on ovary

    My situation was also different from yours yet somewhat similar in that I had colon cancer on my ovary. In fact that was where I had a large tumor. My colon cancer encompassed my appendix also. I recall after my surgery the Dr said they couldn't find my appendix. I assured her that I had one before surgery lol. It was eventually found when tumor was sent out to wherever it goes. 
    anyway I had radical hysterectomy at same time as the surgery to remove some of the colon etc.  it wasn't until after the surgery that it was determined I had colon cancer and not ovarian cancer. 

    Mine was not mets per say but found with my original diagnosis. (Stage 4)

    That was July 2018. I did 26 rounds of folfox with avastin. I also got the neulasta. I am currently still NED (2 yrs) with another scan coming in a few weeks. 
    Not sure if this is helpful but wanted to put it out there. If I can be helpful in any way please let me know. 

    I was diagnosed at 54 and was otherwise very healthy and fit. I believe that has helped. 

     

     

  • grammadebbie
    grammadebbie Member Posts: 464
    How are you

    Have been thinking about you!  How are things going?  Hopefully you have a good treatment plan and good doctors.  Please let me know.  Praying for you!


    Debbie