Hi-- I am a new member .I am 60 , a lawyer and have just finished ( jan 24 ) 35 radiation and 3 chemo treatments for a secondary site neck lymph node under my right mandible with an undisclosed primary . Is there anyone there who has had a similar diagnosis or knows anyone who has . I would like to correspond with anyone with information about this type of diagnosis . If I am on the wrong web site could someone advise me of another source which might be more specific . thanks .

Hi Welcome
Yes you are in the right place and I'm sure you will soon find your way around the site..
Page up from here and click on search and type in your key words and I'm sure that will help.
I'm also sure that someone will reply with their own experiences.
Also on the home page of OCF there is also a search facility to aid you..
Sorry that you had to find us, pleased that you are so far along your treatment path..
Please stay and keep us up to date...
Sunshine...love and Hugs
Helen

Hi and Welcome,
I had the same diagnosis as you in 1997. Had rt neck dissection followed by 36 XRT rad treatments, no chemo. I had a new occurrence in 2001 that cost me my voice box. Still doing fine. Ask me any questions you would like. If you feel the need to do it privately, use email not the private message facility. I don't always get to the board to post.

FYI, you will notice at the bottom of our posts, most of us have listed our diagnosis and treatments. It's a quick reference so you know our experience.

Take care,
Eileen

Go back to the my profile link ( very small ) under the forum name. In there you can, in the bock designed for a signature, enter the information in that you desire, much like Eileen has done in the previous post.

Hi Toronto! My husband had a left neck mass with unknown primary and just finished (yesterday) 39 radiation treatments and 3 rounds of chemo (actually ended up to be 4 rounds of chemo because they changed the chemo drug after5 the first 2 rounds from Cisplatin to Carboplatin and Taxol). He is scheduled for modified radical neck dissection next week. Are you going to have or have you had a neck dissection? How did you do through your treatments. Please write back with any comments or questions.
Michele

Hi, I'm new here and didn't know this site existed until now. First diagnosed 2/14/06 after wasting 4 months with an ENT who said the swelling under my left jaw was a saliva gland.

Had a modified radical neck dissection 3/9/06 @ UCLA Medical Center. Surgeon removed 47 lymph nodes, one positive for metastastic undifferentiated carcinoma (lymphoepithelioma). Multiple biopsies failed to locate the primary, but positive for Epstein-Barr virus indicating nasopharyngeal cancer.

PETscan in April failed to locate a primary, although it did show mild hypermetabolic activity in the upper right lobe. Went in for a fine needle aspiration of the lung a week and a half later, but the contrast CT showed nothing there (?!).

So........I'm into the 5th week of radiation. Started chemo last week (40mg Cisplatin + 40 mg Docetaxel). The worst week of my life.....really sick. I've declined further chemo right now, but will re-assess after radiation ends in two weeks.

Riley

Riley,Being part of this group will help you along the way. Sorry you had such a bad time with the chemo. How are you holding up with the Rad treatments? Amy

Hi Amy. Sorry I didn't answer your post back in May, I didn't see it until now.

Finished rt 5/24/06. Still on liquid (Ensure) diet, although attempting solid food unsuccessfully. Everything tastes horrible. Have an appt with the hematology/oncology chemo doctor Monday. The decision whether or not to resume chemo is weighing heavily on me.

This 'unknown primary' business is nasty. As I understand it, it's possible the primary is microscopic, or even that my body has defeated it through the lymph system. I'm not looking forward to chemo (Cisplatin + Docetaxol), but will undergo it if there is some evidence that it will prevent a recurrence. Most HNC patients do chemo + rt at the same time, so I don't know how it works out in my situation.

Riley

Riley, Hope you are still reading these. My husband is currently doing Carboplatin and Taxol. He's NOT having nausea thanks to the antiemetics they are using. The only issues thus far have been some stomach burning, hair loss and tiredness. Rather than not do chemo, maybe you could discuss a different combination. John's Chemo Doc told us that Carboplatin and Cisplatin yeidl pretty much the same results. [Hope that statement doesn't open a can of worms] Amy

Riley - my husband had unknown primary as well. Very scary, however, we hope that his radiation treatments and concurrent chemo, with follow-up radical neck dissection, got it, wherever it was hiding. As far as chemotherapy to help prevent recurrence, this was advised by my husband's oncologist locally, but we went to Johns Hopkins for a second opinion. The doctor there (head and neck cancer specialist) advised that studies have shown that additional chemotherapy as a follow up did not prove to be of any value in preventing a recurrence. She (the doctor) did say that if he did have a recurrence, then chemotherapy would be warranted, although if the recurrence was sooner (within 18 months) rather than later, the chemo would not be as effective in treating the recurrence. Just thought I would pass along what we found out. Consequently, my husband elected not to have additional chemo at this time, even though his odds of recurrence are very high, since he had an unknown primary, and following radiation and chemo, he still had viable cancer cells which were noted in the pathology report to be "nearly completely necrotic" (whatever that means) when he had a radical neck dissection after the RT and chemo.

By the way, my husband finished radiation/chemo on April 4, had surgery on April 13, and about 3 weeks ago, he finally started eating, just little amounts at first, but hasn't used his feeding tube since. His taste buds are back for the most part, except for certain things.

I hope you get good advice to determine what is best for your current situation. Best wishes to you during your recovery.

Michele
(P.S. - I will not be on the forum for a couple days because I have to disconnect my computer due to some work being done at my house, just in case you have any follow up questions. Should be hooked back up Saturday or Sunday.)

I just came back from a cancer conference and had a long conversation with a leading doc at MDACC. One of the things that came out of that conversations was that people with unknown primaries have a slight survival advantage in MDACC's clinical experience, (also reported at 3 other major centers). The thinking is just as posted above, that the body's immune system has in some manner dealt with the primary, which was likely very small, and all that is left is the node involvement. This was the first that I had heard of this, but for those thrown into the uncertainty generated by an unknown primary, perhaps it is of some comfort.

Thank you, Brian, for passing along that information. It actually is somewhat comforting, as I never considered the possibility that the primary site of my husband's SCC could have already been gone at the time the lump was discovered on his neck, only that it was there somewhere and hopefully dealt with during treatment. The "unknown primary" status was extremely distressing for us but perhaps if we had thought of this possibility, it would have been easier to get past. I hope others who are just being diagnosed with occult primary will see this post.
Michele

Brian,
Ditto what Michele said about occult primary. We also found the unknown primary status extremely distressing and pushed doctors to make sure they had not missed something. I had never considered the possibilty either that it might be gone. I know you just never know with cancer so I have adopted the theory take it as it comes.
Thank you again Brian for keeping all of the invaluable information on this site so up to date.
Kim