Cancer of the unknown primary (CUP) / omentum

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DanP
DanP Member Posts: 5
in Rare and Other Cancers #1

Trying to find anyone that has been diagnosed with CUP?  Any alternative treatments.  My brother was just diagnosed with what is called cancer of the unknown primary.  Basically means the doctors do not know where the cancer originated, however they know it is in his omentum.  Doctors are stating his cancer is treatable, but not curable.  However, treating with chemo is not a long term solution.  I'm curious what type of treatment(s) anyone else has gone through?  My brother just started chemo(folfox) two weeks ago.  Thanks  

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  • abrub
    abrub Member Posts: 2,174 Member
    #2
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    Has he been to a cancer specialty center?

    Worth going to Sloan Kettering (NYC) MD Anderson (TX) or one of the other specialty cancer centers.  I had cancer in the omentum - appendix was primary, but that's rare, and many drs might not check for that.  I'm almost 10 years out from diagnosis.

  • DanP
    DanP Member Posts: 5
    #3
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    cancer centers

    10 years.  Keep on going!  No, we have not been to a specialty center, but are looking into going to MD Anderson.  We've reached out to some sources to determine which location(s) will have the best clinical trials for his type of cancer.  I keep on reading about Immunotherapy and the amazing results it is having, though small results.  Of course he would have to qualify for it.  What types of treatments have you had?  Any additional information you can provide would be great.  I'm just trying to gather as much information as I can.        

  • abrub
    abrub Member Posts: 2,174 Member
    #4
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    DanP said:

    cancer centers

    10 years.  Keep on going!  No, we have not been to a specialty center, but are looking into going to MD Anderson.  We've reached out to some sources to determine which location(s) will have the best clinical trials for his type of cancer.  I keep on reading about Immunotherapy and the amazing results it is having, though small results.  Of course he would have to qualify for it.  What types of treatments have you had?  Any additional information you can provide would be great.  I'm just trying to gather as much information as I can.        

    Surgery and chemo

    I had debulking, cytoreductive surgery to remove all visible cancer, followed by intraperitoneal chemo (directly into the belly to bathe the area in chemo.)  And I recently had a recurrence - same treatment - surgery to remove visible cancer, followed by intraperitoneal chemo.

    Get to MDA - they'll know which way to turn.

  • DanP
    DanP Member Posts: 5
    edited December 2016 #5
    Options
    As of now, we were told the

    As of now, we were told the procedure you had is not an option since the cancer has spread and they do not know the primary location.  We're questioing why the primary can't be determined.  Anyways, we're going to continue down the path of obtaining more information to go to a speciality center.  Most likely will be MD Anderson.  An alternative has to be out there.  Not going to give up!!  I am so thankful you have been willing to provide your information to me.  If you come across any other information to help, please let me know.  Thank you so much!  Happy Holidays!

  • abrub
    abrub Member Posts: 2,174 Member
    edited December 2016 #6
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    DanP said:

    As of now, we were told the

    As of now, we were told the procedure you had is not an option since the cancer has spread and they do not know the primary location.  We're questioing why the primary can't be determined.  Anyways, we're going to continue down the path of obtaining more information to go to a speciality center.  Most likely will be MD Anderson.  An alternative has to be out there.  Not going to give up!!  I am so thankful you have been willing to provide your information to me.  If you come across any other information to help, please let me know.  Thank you so much!  Happy Holidays!

    You're doing the right thing by going to MDA

    They may be able to determine the primary, and also determine if cytoreduction and/or intraperitoneal chemo is right.  Go get that opinion and report back!  (And since I don't always check all the forums, I'd love it if you'd send me a private message when you get the info.)  Dr's Fournier and Mansfield there have a lot of experience with cancers from the appendix, and other peritoneal masses.

    My current recurrence was listed simply as "Metastatic tumor to the vagina" - no origin was listed (tho we know from my history that it was appendiceal in origin.)

    Alice

  • paella
    paella Member Posts: 81
    #7
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    CUP

    What procedures have been done?  When it was recently "thought' that maybe my husband had a hernia, they (City of Hope) did a CT scan and discovered, instead, lots of swollen lymph nodes (from a metastasized cancer) but with unknown originating organ - just that it was GI area.  A week later they did a CT guided needle biopsy and a few days after that an ultrasound guided endoscopy.  Biopsy came back as pancreatic cancer, but our Onco had them re-analyze the biopsy AND sent part of it to Cedars Sinai and both agreed that it was a particular kind of pancreatic cancer called Acinar Cell Carcinoma (rare).  He started almost immediately on Folfirinox and will have at least 8 treatments with a CT after 4 to see if the lymph nodes are clearing up at all.  Acinar is slightly more reactive to chemo and a bit slower than the most common type of Pancan.  No clinical trials, however - too few people have it.  For clinical trials, try calling the American Cancer Society...they'll research for you. 

    Good luck - Paella

     

     

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