Unknown primary cancer site

12-1/2 yrs. ago my husband was diagnosed with stage 3 colon rectal cancer.  Went through chemo and rad.  Now, for the last three months we have been going through test after test trying to find out where his primary site is because he has a 4" mass in his liver and a small mass in his lung with nodules.  We have gone to two doctors, one was the Univ of Chicago primary site unit of oncology, both have different opinions about treatment.  In fact, our oncologist asked us what we wanted to do protocol for colon cancer or bile duct/lung cancer.  We literally flipped a coin on what to do.  We were told that we may never really know what the primary site is.  Has anyone else had this happen to them or know of someone who has?  Do we need to go to another doctor and more tests? or do we just start chemo and see how it goes?  Help and advice  

This is similar to my mom's problems with the fact that they call it non primary cancer. Here in saskatoon, sk canada after doing only one biopsy the local cancer centre staff refuse to look for the origin of the cancer. It is so frustrating and confusing, we feel so helpless. At this point mom has refused chemo fearing that it is not worth it, doctors told her it could add a couple months onto her life. They did propose a chem regime specifically called non-primary cancer chemo. 

We are now planning to go through her family doctor search further, we are thinking it is bile duct cancer. I understand how frustrated and unsure you feel. My thougths and prayers are with you.

 

On 8/28/2009 Anjeanette wrote:

This is similar to my mom's problems with the fact that they call it non primary cancer. Here in saskatoon, sk canada after doing only one biopsy the local cancer centre staff refuse to look for the origin of the cancer. It is so frustrating and confusing, we feel so helpless. At this point mom has refused chemo fearing that it is not worth it, doctors told her it could add a couple months onto her life. They did propose a chem regime specifically called non-primary cancer chemo. 

We are now planning to go through her family doctor search further, we are thinking it is bile duct cancer. I understand how frustrated and unsure you feel. My thougths and prayers are with you.

Sorry to hear about your mom.  When they did the biopsy, where was it?  Has it mestasised to any other organs? When they did the biopsy, what strains showed up?  In my husband's, it was a special strain  showing the gestro tract, and that is why they looked at the colon again and did an endioscopy of the stomach etc.  Of course, nothing showed up.  However,  Bile duct cancer is really hard to fine from what they tell me.  The same chemo they give for lung cancer is the same for bile duct.  My husband has started chemo a couple of weeks ago.  We decided to go with the lung and bile duct so, they are giving him cisplatin and gemset.  So far, he has had two treatments and is off now for one week.  He handled it ok, his blood has taken a little dive, but we hope to build it up in the next week.  We will go through one more round or possibly two before he has to take a cat scan and see if this is helping.  If not, then they may go to the other protocol and that is colon rectal and folfox.  Did they tell you exactly what type of non primary cancer chemo they would be giving?  Did they do a PET scan yet?  Your mom is in our prayers.  I encourage you to just keep asking questions and sometimes it is necessary to get a second and third opinion.  Good luck.

Hi!

I was diagnosed with Unknown primary Aug of 2007. There were tumors in my liver and I was given 3-11 months prognosis. I'm happy to say that was all wrong!

I first was given gemcitibin and cisplatin, since lung was the best guess - I'm a smoker. But test showed no lung cancer nor anything for sure, but best guess was bile-duct. I switched to a GI cancer oncologist and after several unsuccessful tries and injected chemos, they stopped for awhile. Taxol and Carboplatin were tried as well. Later I was on oral chemo, Xeloda.

Later they took a second biopsy of my liver and sent it off for genetic testing. They compared it to 13 of the more common types to see what it most matched. Their analysis said "liver". My doc (and I) didn't buy it as I've never had any liver problems, jaundice, hepetitus, cirrhosis -nothing.

But now they are calling it a rare combination of two types of cancer cells in one tumor - a combo of bile duct and liver. cholangio-hepatic. That lead them to have me try a newer oral chemo, Nexavar, which is one of the few things to show some effect on kidney and now liver cancer.

I started it on full dose a few weeks ago, but that was too much, so after a week off I'm now on 1/2 normal dosage.

We'll see!

Message is, don't give up! I'm still here and healthy after 2 1/4 yrs. showing small growth. Of course I have a lot of tumors, but the point is we don't know WHat might work, and clearly this is uncharted territory and no one really knows. I highly suspect a specific "treatment' for Unknown Primary, since that only means they don't Know what it is!

hang in there and all the best to your families.

Patti