Can't Find The Primary Tumor.

I have been diagnosed with SCC which metastasized to one lymph node in the Level II neck. I am very healthy and have absolutely no symptoms except the enlarged lymph node which was a little over 2cm and was removed and biopsied. Despite doing PET/CT and MRI scans, they still cannot find the primary. I have been very disappointed with my treatment so far here at UCLA and am going to NY tomorrow to meet with doctors at Beth Israel and Sloan Kettering. I have done tons of research on the internet in the past two weeks including reading abstracts from articles in medical journals. As I am not a heavy smoker or drinker and have tested positive for HPV, I believe this tumor is a result of HPV and will probably have a tonsillectomy in NY as 70% of HPV head and neck cancers are HPV positive and 50% of the primaries are eventually found through blind biopsies of the tongue and tonsillectomies. I am wondering if anyone out there has a situation similar to mine either in terms of the HPV or the unknown primary. If so, I'd love to hear about how you were treated and how it all turned out. The problem with not finding the primary is that they have to extensively radiate from the base of the skull to the top of the clavicle and the morbidity is horrible. Thanks.

I have SCC of  unknown primary, but not HPV. It also metastisized to neck lymph nodes on my right side. Before treatments, I had all sorts of proceedures and scans to try and find the primary. 2 larynscopies w/biopsies; endoscopy and bronchoscopy included. Went ahead w/chemo and radiation; which as you said is extensive due to the big area they treat. I had IMRT. It was no fun. About 3 1/2 mos afterwards I had a modified neck dissection. Lucky for me, my neck is fine, I have normal range of motion and none of the side effects I've read about! (nice scar, tho!) I have the usual side effects from the rad: lack of saliva, limited taste, swollen and constrictive swallowing ability, etc. I had the PEG tube for 5 mos. and still have a port in my chest for ease of chemo. But now-6 mos from end of chemo/rad and 2 1/2 mos out from neck surgery-I am doing very, very well, mostly back to my usual routine and living well, at my "new" normal. Best of luck to you!! Gayle

Gayle, Thanks for your reply. I hope you will answer a few more questions. Did they do or think about doing tonsillectomies to fiind the primary? May I ask how many neck nodes were involved when you were diagnosed? I had only one a little over 2 cm which makes it N1. Some of the research I've read indicates that some hospitals treat it only with radiation and chemo. That's what UCLA did. Did you have your neck dissection because you had more nodes at first or there were still nodes after or you just wanted to be sure? And where did you take your treatment? Did you have fractionated (2X/day) radiation or regular once a day? What Chemo drugs did they use? Did you also use Erbutux? And finally, why do they keep a port there if you are done with chemo? Thanks. I am so glad you are doing so well! ----quote------ On 10/23/2007 gayleann wrote: I have SCC of  unknown primary, but not HPV. It also metastisized to neck lymph nodes on my right side. Before treatments, I had all sorts of proceedures and scans to try and find the primary. 2 larynscopies w/biopsies; endoscopy and bronchoscopy included. Went ahead w/chemo and radiation; which as you said is extensive due to the big area they treat. I had IMRT. It was no fun. About 3 1/2 mos afterwards I had a modified neck dissection. Lucky for me, my neck is fine, I have normal range of motion and none of the side effects I've read about! (nice scar, tho!) I have the usual side effects from the rad: lack of saliva, limited taste, swollen and constrictive swallowing ability, etc. I had the PEG tube for 5 mos. and still have a port in my chest for ease of chemo. But now-6 mos from end of chemo/rad and 2 1/2 mos out from neck surgery-I am doing very, very well, mostly back to my usual routine and living well, at my "new" normal. Best of luck to you!! Gayle -----end quote------

Glad to be of help! I had my tonsils out when I was 6 and even tho they told me it would be a common place to find the primary; since the biopsies didn't show anything they didn't try to remove any more tissue from there. I had 4 nodes positive, as far as they knew for sure. The one excised first (Jan '07) was 3.1 cm and then the PET in Feb showed 3 more enlarged ones w/FDG intake. (N2) I thought I would only need to have the chemo and rad; but after a PET in June, after all treatment, it showed one node still a bit over 1 cm. My ENT onc said there was a 1 in 3 chance of that one (or more) could still have malignancy and that a dissection would be the way to go. I didn't want it-I was recovering so well-but after a 2nd opinion which was YES, DO IT-for peace of mind if nothing else! He took 15 nodes then and tissue and path came back all clear! I had IMRT-once a day, 5 days wk, 7 wks. Cisplatin, 2 out of 3 recommended rounds-too sick for round 3. No Erbutux-it was never suggested. It's been only recently found to have a positive effect, I understand, after clinical trials. I'm in MN and had chemo at the local hospital, a Fairview facility, but rad at Mercy Med Center, in the cities. It's a radiology facility using all the latest technology. The port is there because I also have 2 nodules in my lungs they are watching-cannot rule out lung metastesis; there is a 1 in 3 chance of that, too. IF it proves to be the case, I would have to have chemo and maybe rad again-not a pleasant thought. We are watching it closely with scans every 2 mos and regular checkups, also. Please continue to ask Q-I would love to be of help as you go thru this unexpected and unwanted journey-Gayle

My husband was treated 2 years ago for unknown primary that spread to his lymph nodes, stage iv. Treated with surgery, to remove 14 lymph nodes, and biopsy many places on base of tongue. He was radiated and treated with cysplatin. Peg tube also. Many times the primary is never found. Besides side effects being of dry mouth from radiation, hearing loss from cysplatin. The most on going pain comes from the neck dysection, and cutting the nerves. Anyway. the treatment only changes as to the radiation when the primary is found.....they then know where to aim. With unknown primary they have to shotgun both sides of neck......but we have heard success rate very good. Only time will answer this. Good luck.....

Thanks for your reply. May I ask if the removal of 14 nodes was for the purpose of diagnosing the N (nodal) stage of the cancer? So far mine is N1. But the doctor I saw today says if the blind biopsies and the tonsillectomies still don't turn up the primary, he wants to do a selective neck dissection to see if there were any more nodes involved. He says there is a school of thought that if there is only one node, which was removed, and there is no extracapsular spread, to not do radiation/chemo and just be monitored very closely. Sometimes the primary never turns up. But if it does, he says then we could do salvage radiation. Was that offered to you as an option? Also, he told me he has never cut anyone's nerves in even his modified neck dissection, and 14 nodes is certainly considered selective as he said mine would be with 35-40 nodes. Did he tell you there was going to be nerve damage or do you think he might have just done a bad job? Also, what does the scar look like and are there any other cosmetic issues besides the scar? And finally, the side effects you mentioned about dry mouth and hearing loss, did they go away after radiation was finished? Thanks so much for answering.

Thanks for offering to keep answering questions. I have one based on your last email. You say they found one node on the June PET. But then you said they took out 15 and all came back clean. Did that include the one they found on the PET? Because if so, perhaps the PET was a false positive and you might not have needed the neck dissection. Or I am misinterpreting what you wrote?

Treatment of unknown primary is evolving in some ways.  Althought still done, blind biopsies are positive in 15 to 25 percent of the cases.  They also check the esophagus and lung if the Lymphnodes are in the Supraclav.  Treatment is also changing.  Some still advocate treating all the mucosal surfaces including the nasopharynx.  But it has been discovered routinely treating all areas is no more effective than more limited treatment which spares more normal tissue.  Many people only treat the lesion and the most likely primary areas and with IMRT they only treat the involved side.  The exception is bilateral lymphnodes and posterior lymphnodes which would increase suspicion of a nasopharyngeal primary.   Also certain histologies may increase suspicion.

Survival is generally dictated by the degree of neck disease.  Bilateral disease has a survival of 10 15 percent.  Early disease around 80 to 90 percent.  For all comers historically it has been about 50/50.

Yes, it included the larger one found on PET. They know that PET isn't always right-maybe 70-80%, but an enlarged node after treatment is still a worry-so the dissection was a safeguard. Since there still was a 1 in 3 chance of more malignancy that treatment didn't get OR recurrance-like the 2nd opinion Dr. said-it's also for Peace of Mind. Since it was selective, there was no nerve damage and luckily for me it all came out so well as far as recovery. I was told, too that sometimes with only 1 small node positive that they might choose not to do chemo or rad-I was so hoping that would be me!!! As far as the scar-the incision is usually from the bottom lobe of the ear curved down and around to the base of the throat (neck). It should follow your natural creases in the neck and be virtually unnoticable eventually. Mine was done Aug. 4th and other than some redness it isn't very noticable already! However, the swelling and numbness linger. Most people have side effects that continue-sometimes forever, after treatments. Lack of saliva and taste problems can be forever! Or you may get some function of either or both later on. You won't know! Hearing loss and ringing of the ears-which I have-is forever. If I had know that, I would have refused cisplatin.  

Thanks. I just got a third opinion from MD Anderson. They advise doing the biopsies and tonsillectomies and if they don't find anything a selective neck dissection to check if more nodes are involved. If none are, they suggest watching it every two months. Radiation can be used if the primary turns up. I think I am going to go for this as the radiation effects scare the hell out of me. Of course, if it turns up in the tonsils or if there are more nodes involved, I will do the radiation. But if the tumors remain microscopic, I may ask for the microscopic disease dose to the neck which is 55-60 GY. Do you know if that will make the effects less severe?