Hidden Primary

My husband was diagnosed with SCC after having two lymph nodes removed from his neck.  He's had a full-body PET scan, lung CT scan and several CT scans of neck. All scans came back clear. 

 Also, he's had his tonsils removed and several basal tongue, pharynx and throat biopsies which all came back negative.

 He's about midway through his chemo (6 treatments total) and radiation (35 treatments total). 

 My question is this:  How common is it for a person with SCC in the lymph nodes to have an undetectable primary? 

Thanks for responding.

 

On 11/19/2007 ecmb709 wrote:

My husband was diagnosed with SCC after having two lymph nodes removed from his neck.  He's had a full-body PET scan, lung CT scan and several CT scans of neck. All scans came back clear. 

 Also, he's had his tonsils removed and several basal tongue, pharynx and throat biopsies which all came back negative.

 He's about midway through his chemo (6 treatments total) and radiation (35 treatments total). 

 My question is this:  How common is it for a person with SCC in the lymph nodes to have an undetectable primary? 

Thanks for responding.

 

My husband  was also diagnosed with SCC in 3 of his lymph nodes and all other biopsies from other locations as well as the PET and CT scans came back clear.  They don't know where the primary is and we were told that they may never know.  He is also doing IMRT and Cisplatin.  He has done 2 rounds of high dose Cisplatin and 22 of the 33 radiation treatments.  I don't know how common it is, but from the message boards I have found I don't think it is too common.  Good luck!!!

I was told it comprises about 10% of head and neck cancers.   I am one, also. SCC, stage IV, metastasized to at least 4 lymph nodes on right side. Diagnosis Jan '07, after a 3.1 cm lymph node excized.  Had IMRT radiation and concurrent cisplatin. Then a selective neck dissection-where 13 nodes and tissue removed and no malignancies found. Had a PEG, and still have a port. They are also watching my lungs for 2 tiny nodules that are showing some minor metabolic activity on PET.; one of which also shows in a hilar lymph node. So--------------I still wonder how it is they   cannot EVER find the primary tumor? I underwent 2 pandenoscopies as well as endoscopy and broncoscopy to search.  Puzzle!  Gayle

 

 

 

 

Thanks for replying.  After doing some additional research on my own, I have found out a few things .  I'm assuming they are accurate.  But they may not be.

 Primary cancer sites can be "taken care of" via the body's immune system.  That is, after the cancer cells have migrated from the primary, the body's defense system kicks in and destroys the primary.

 I also read that the migrating cancer cells can somehow affect the primary and also result in its demise.  How, I have no idea.

Of course, to me, the most obvious cause of unknown primary would be a primary that is so microscopic that it doesn't show up on PET or CT scans.  I was told by an oncologist that primary cancer cells may never become active cancer, growing and spreading at the primary site.  But this does not mean they are harmless as they have the ability to send cancer cells throughout the body.

 Keep praying for a cure.

 

Interesting! I had been told by one Dr. that the immune system thing was a fact, but another Dr. poo-pooed it! My radiology oncologist said to think of the area as a lake with many inlets and bays-you can't always find a marble (for example) in a big area with all sorts of 'hiding' places. It's still scary-if you can't find it it doesn't mean it isn't there or it was taken care of by chemo/radiation. I have an endoscopy every 2 mos by my ENT-always looking for evidence of IT. I think this is the standard of care. Gayle

 My husband, Dirk, went in on Feb.14 to have what we thought was a cyst, removed. At that time the ENT came out of the OR to tell me it didn't "feel" right and he was sending it off to be biopsied. He told me he wasn't going to tell Dirk, that we'd wait for the results. I had to hold this in for two days! I didn't tell anyone. I truly thought it would be negative. On Feb. 16 the ENT told us the biopsy came back positive for squamous cell carcinoma. He also told us he was sure it wasn't the primary site. Less than a week later Dirk went in to have several biopsies including a tonsillectomy. All those came back negative. Next he had a PET/CT scan. All clear. He even had a colonoscopy and upper GI endoscopy. According to all these tests the only cancer  was removed on Feb. 14. He should have started treatment two weeks earlier than when he actually did but we insisted on a 2nd opinion at UCLA. The DR at UCLA agreed with everything that had been done and the treament that was recommended. The only difference was our ENT believes now Dirk's cancer originated from a cyst know as a branchiogenic carcinoma(very rare and considered a myth by some) and UCLA said he probably has a primary site that is so small it's undetectable. Either way the treatment is the same. He won't have a neck dissection since the DR feels he already removed all ne needed to. UCLA also agreed with this.

I actually copied the previous part from a message I posted several months ago. My husband completed 33 days of radiation, 3 high-dosages of Cisplatin, and 4 months of Xeloda. His first post treatment PET was all clear last month.

The "unknown primary" thing still worries me. One thing our ENT told us was every dr. will tell you something different. We found that to be very true.

The only thing that has remained constant and helps with the fear and worries is staying strong in our faith. Learning how to pray and taking time to listen carries us through everyday.

 

My husband's story is nearly identical to your husband's.  My husband first had a biopsy of the neck cyst which came back negative.  What a relief, I thought.  Then surgery removed two cysts which the ENT also said he thought were  branchiogenic cysts.   BUT, the biopsy on the cysts came back positive!  What a shock!  My husband had many biopsies:  tonsils, pharynx, back of throat, etc. and no primary has every been found.  He endured 6 chemos and 35 radiations after having the cysts removed.  One oncologist referred to the cysts as lymph nodes.  To tell the truth, I don't think anyone knows the complete truth.  Were they branchiogenic cysts or were they lymph nodes or are branchiogenic cysts a type of malformed lymph node?  I've asked many, many questions and get all kinds of different answers.  So they don't know.

 We met with my husband's main oncologist at Ireland Cancer Center and I asked him if the chemo and radiation would have destroyed the primary, wherever it is.  He looked surprised that I asked that and said that yes, that's the reason for the treatment.   So I worry all of the time.  And it's because this cancer is so hidden, that no one knows where it is.  We were told that often the primary never really develops into full-blown cancer.  But it sends out seeds of cancer that grow into the tumors that they find.

I have the same SSC with unknown primary....presenting with a right neck mass in lymph..3cm in size with smaller lymph effected as well....numerous biopsies and one tonsil removed reveal no more info except for the mass in the neck lymph has poorly differencited SSC. I will start chemo in a week then plan to endure radiation afterthat.....good to connect with others in the same boat...lynne