Hello-husband recently diagnosed with metastic SCC of the neck with occult primary. After discussion with drs and research looks like neck dissection followed by rad. is the course most recommended. Any thoughts?
Thank you

Several things push docs towards one treatment idea or another. One of these is cancer etiology. What risk factors did he have for the disease? If tobacco is out of the picture, I would want them to take the tonsils at the same time and do pathology on them. A patient that is intraorally occult, with positive cervical unilateral nodes, (based on clinical experience at Johns Hopkins) has a high probability of having the tonsil contain the unknown primary. While tonsillectomies for kids are no big deal, for adults it is a bit more involved.

The JH experience found patients that presented like this, when bilateral tonsillectomies were performed prophylactically, they found SCC in one of the tonsils in about 70% of the patients that were visually occult. This could change treatment protocols, and that tissue excised at surgery (tonsil or cervical) should be typed for HPV by PCR testing.

Some institutions are doing chemo /rad and that can be simultaneous or neo adjunctive. It would be helpful to know more about what you have been told at this point, staging etc, and where you are being treated to help in giving you useful information. We all wish you the fastest and most successful path through this treatment process.

Hi. Welcome to the board and I am sure you will get to know many and get the advice you need. At this point I'm not sure what the diagnosis means - what is "occult primary"? I have had radiation to the mouth/neck twice - once to each side, but I think your question is whether the course of treatment is appropriate and I am not the one to answer that or you.

Thankfully we have many knowledgeable people here who hopefully will be able to answer. If you ahve questions about the radiation itself, perhaps I can help with that. In the meantime, take care - you have a difficult role as a caretaker, but know the patients do appreciate it.

Donna

Please be sure all possibilities have been explored to find your husbands primary tumor. For reference, I had several scopes, a PET/CT, Hi-res CT, Sonogram and Surgical Exploratory with biopsies concurrent with the Selective ND.

Normally a Comprehensive Cancer Center can find the primary and if not is better equipped to handle what will likely be more extensive radiation treatment planning (less targeted with more and broader fields which can lead to increased morbidity such as severe dry mouth and burn).

Basic NCCN Guideline recommendations for an Occult Primary include a tonsillectomy, neck dissection, HPV test and depending on the staging of the lymph nodes radiation or chemo/radiation.

Normally they take the tonsils with very wide margins so it takes a couple days in the hospital.

I suggest you ask about a selective neck dissection since these seem to have less long term issues.

Ask about advanced 360 degree IGRT systems such as Tomotherapy or Varian Trilogy, etc..) These systems can be programmed to paint the guesstimated primary target fields with radiation beamlets delivery in smaller fractions from more directions than used by most conventional IMRT systems and may substantially minimize problems during and after treatment.

Good luck

donna-
occult= not visible or identifiable

And after all of this, maybe he will be told the OC is unique as I was.

I can only give my personal experience. I was diagnosed with BOT primary and cervical met. From all the reading I've done here it seems they have a tendency to go chemo and Rad if the cancer has Mets. They can come back an do the radical neck later or not at all if the rad and chemo worked well. The problem with surgery is that it delays radiation. It;s a catch 22 situation. Your at a perfect jucture for a second opnion.

Wife,

I was originally told they thought mine was an OP but they put me under and were planning to do a biopsy of my BOT and then take my tonsils because they wanted to find my Primary. Luckily for me they found mine in my BOT and stopped.

Also Moffitt did not believe in my case it was necessary to do a ND pre rad and chemo opting to save that procedure only if I needed it post Tx which I did not and I'm glad I didn't. I saw 5 different cancer docs before deciding on Moffitt a CCC http://www.oralcancerfoundation.org/resources/cancer_centers.htm and their Tx plans differed drastically from cancer doc #1 to Moffitt #5. So IMO I would get other opinions especially from a CCC.

Hello and welcome. Here's how they found my op. ENT took samples of several areas where he thought it might be which was just in and out surgery. When he found it was on the tonsil he said there was no need to remove the tonsils as the radiation treatment would just burn them away. Seems to have worked that way.

Hi Wife....welcome to OCF. There are many people here that are educated enough to answer your questions. I am not one of them:) I had tongue primary and have only been treated surgically.

That said...I know a lot of people have radiation. It's a long road and is not easy. He will need your support and help. WendyG and her husband Steve have just gone through treatment. Wendy has a blog called "My Steve" and it is an inspiring story.

Good luck to you and your husband. We are here for you.

Thank you all for a nice welcome and wonderful advice. So far, my husband has had c-scan, pet scan, needle biopsy. Tonsilectomy and modified neck dissection is recommended followed by radiation. As what point is the staging done? Glad to have found this site, very informative and supportive!

I'm not sure if they can stage from a needle biopsy. I've never been lucky enough to have one...they always put me under. I can't remember what took place before they told me the stage. I feel like I had a biopsy then a partial glossectomy. There are other people here who I know can answer this question. Sorry I can't help. It's a good question!! I didn't even think to ask my doctor...my sister did.

I have had biopsys of every type I think and they work for staging my surgeon said, Personlly I have no idea and just listen and learn.

Hi
Staging is done by the size of the tumour the invasion of the lymph nodes and the spread elsewhere.If you have had a needle biopsy done then pathology will say if the tumour is primary or secondary and what type,a cat scan may identify the size so staging should already be possible .For more information about staging,go to the search engine at the bottom of the ocf log in page and type staging .The information is detailed and very easy to understand.

Wifey, you have heard from one of the better informed members when Liz commented to you, This is one lady that knows her way thru this stuff. She is great.. Jim

If they have confirmed at least one node as positive they can Stage even without finding the Primary (called Occult Primary). It's always better to find the primary as the radiation Tx field would have to be expanded leaving less concentration to the area that really needed it.