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Carcinoma of Unknown Primary

Nutty1
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Hello all,

 

i was wondering if anyone might be able to help.

 

My Father was recently diagnosed with Adenocarcinoma of unknown primary (CUP) He is 82 years old. He has a tumor located in the pelvis that is about 9cm. This tumor is a solitary mass and no other cancer has been found. No lymph node involvement and the primary site has so far alluded the doctors. He has had PET scans / CT scans, MRI's, endoscopy, colonoscopy, multiple blood tests, tumor marker tests, prostate checks but still no primary site has been discovered. 

 

The tumour is not attached or located in or on any organ (which is confusing) and so is currently confined to a space within the pelvis. It has a blood vessel feeding it. It's as if the tumour has appeared from nowhere in a very unusual place. I really don't know what to make of this! 

Has anyone ever heard of this sort of presentation of CUP? 

Is it worth getting a second opinion? 

Could this his be an unusual primary tumour? I have never heard of anything like this before. it has taken nearly 7 months to get to this point and he has currently received no treatment for it at all (I'm extremely upset by the time this has taken). He is now scheduled to start radiotherapy in about 3 weeks time. 

 

Does anyone one have any advice?

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    Hi there, sorry to hear this news. Can a biopsy of the tumour not be done due to the location? CUP can be due to the initial site being so slow growing and other reasons. My dad had squamous cell carcinoma of unknown primary and they still never found the primary site at post mortem. These cells are in the linings of the body. Cancer sure acts in strange and horrible ways.

  • Offline in reply to Michelle1978

    Hi Michelle,

     

    Thanks for the reply. Sorry to hear about your dad. These unknown primary cancers appear to be very mysterious in nature. I'm sorry the post mortem didn't provide you with any further answers. This type of cancer has been very hard to cope with because there just doesn't ever seem to be any answers. The doctors have all been scratching their heads over my dads case. I'm sure that was the case for you as well?

    Did your dad receive any treatment? 

    My dad had a biopsy but was poorly differentiated and the primary source was  still undetermined. 

    He had a radioactive glucose PET scan but still no luck. 

    My dad is quite well at the moment (eating, drinking walking around doing usual day to day activities). 

     

    The thing that concerns me the most is that he was urgently referred (within 2 weeks) to a specialist for suspected cancer  more than 6 months ago.  The whole process has taken more than 6 months and no treatment as of yet. Did you find the process took a lot of time as well? 

    Thanks again.  

  • Offline in reply to Nutty1

    Hi, my dad never had treatment as passed away 3 days after diagnosis unfortunately. The 2 week referral is the agreement in place that you should be seen that quick if cancer is suspected. That's a ridiculous amount of time to wait and be no further forward. How frustrating for you all. Glad your dad is currently well though.

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