Hi all, I am new here this month, and starting a regimen of radiation & cisplatin on July 10th, to treat my lymph node Squamous Cell Carcinoma (HPV16). Petscan indicated BoT origin, but surgical biopsies all came back negative, so, primary site is considered unknown.

On June 26th I got a second opinion at Dana Farber Cancer Center:

I had the good fortune to meet with a panel of four oncologists (including Dr. Robert Haddad, Dr. Charles Norris, & Dr. Roy Tishler) at Dana Farber on Thursday. Though they said the team treating me had done everything they would do, there was a slight difference of opinion from the radiation oncologist, Dr. Tischler. He takes a more aggressive approach with radiation, and would treat the nasal pharanx as well as the tongue, lymph nodes and tonsils that Dr. Bill O'Meara is aiming for.

Tishler says O'Meara's approach is the standard that most would give. O'Meara says the nasal pharanx is not implicated in many HPV16 cancers among non-smokers of causcasian ancestry. He (after treating hundreds of HPV16 H & N cancers)has very rarely seen a pharanx origin, and when he had it was before the testing for separating HPV16 from other types. In O'Meara's take, if one is not asian (subject to other viruses) and does not consume major amounts of smoked meat and fish, then pharanx is unnecessary, and he suggests if I want that to go to Tishler (which is impractical- the ride in during the day is horrendous, so I would face rather than a ten minute commute, more like 2-3 hours of travel time to and from appointments).

What is the thinking here on this question?

Part of this is redundant from my intro thread, but I thought it best to post here with a dedicated title to get the best response. Apologies for The Dept. of Redundancy Dept. ;-)

Never heard of anyone SCC HPV+ having rads to the Nasal Pharanx.

That's said.... Your origin is unknown that's also concerning - is there no way they can check the nasopharyngeal area first?

Often times with HPV+ SSC the primary at the BOT resolves itself before the cancer is found in a node or 2.

Thanks, David and Cherl D. I fortunately have access to a friend of my aunt's who is also an oncologist, so I ran O'Meara's reaction to Tishler's take.

This third doc backed O'Meara's reluctance to radiate the nasal pharanx. He said Tishler's statement that I would expereince "some soreness in the nose" was really softpedaling the extra discomfort involved. He agreed the origin was extremely unlikely to be in the nasal pharanx. O'Meara described the approach that if there was a 10% or greater likelihood of an origin in a given area, radiate, and the nasal pharanx does not come close to that criteria.

And Cheryl, I did have a petscan which showed activity at base of tongue and none in the nasal pharanx. I have been examined with the endoscope both by my ENT and the team at Dana Farber.
Surgical biopsies of the BoT were negative, so the origin is considered unknown, as the petscan is not definitive enough.

[quote=JGD99]?...if one is not asian (subject to other viruses) and does not consume major amounts of smoked meat and fish, then pharanx is unnecessary...[/quote]

I have never heard of this. So if I'm part Asian and have eaten a lot of smoked meats and fish, I should expect nasal pharynx cancer??

I heard of it being a risk factor, Uptown, salty fermented foods too. I met one patient last year at a SPOHNC meeting. In addition, Epstein Barr Virus, EBV, and now HPV is being implicated more than thought when it was originally thought to be an extension of oropharynx cancer, maybe not always.

http://www.infectagentscancer.com/content/8/1/30

http://www.cancer.med.umich.edu/:/news/nasopharyngeal-cancer09.shtml

First time posting because haven't seen any nasopharyngeal entries. NPC is sometimes called Canton Cancer but this relates to one type which is by far the most commonly diagnosed and certainly known risks are salty cured foods. EBV is implicated but there is an increase in Caucasians being diagnosed with some of the same risk factors as SCC oral cancers. My husband had no known risk factors and keeps being told that he is really unlucky.

[quote=Uptown][quote=JGD99]?...if one is not asian (subject to other viruses) and does not consume major amounts of smoked meat and fish, then pharanx is unnecessary...[/quote]

I have never heard of this. So if I'm part Asian and have eaten a lot of smoked meats and fish, I should expect nasal pharynx cancer?? [/quote]

I think it's not ancestry as much as connection to the old country. I have heard there are viruses in asian populations which can express as nasal pharanx cancers. The other risk factor common in nasal pharanx was smoked fish, but that dovetails with the "salty fermented" thing Paul mentioned

I'm glad I don't obsess about the causes of cancer. The salty, fermented, salty fermented, smoked meat, smoked fish diet of 50 years would take me 10 years trying to go through all those permutations and combinations. My life gets more and more like a math word problem every day.

The salted fish and fermented tofu curds have been blamed for the prevalence of nasopharyngeal cancer in the southern Chinese population (Cantonese). There is a brush biopsy that can be performed to determine if one has this form of cancer, doctors also scope and use needle biopsy.

Well no more salted fish or fermented tofu curds for me (ACK!!!!!!!!) seriously even if I was NOT an odd vegetarian who hates tofu I wouldn't ever be drawn to either of those two foods.

LOL, Cheryl. And those Asians wouldn't touch poutine.

Right??? Me neither... Call me a dietary freak. I think I've had it twice in my life.... Ack!!!

Having recently undergone two separate biopsies for a BOT tumor myself I wanted to share my experience.

The first, surgical, biopsy was inconclusive. The surgeon deduced that he hadn't been able to get deep enough inside the tongue (tumor embedded) to get a representative sample.

The second biopsy was done 'fine needle' where they sedated me and lay me on a CT scan bed and inserted the needle (checked the scan, moved a little more) until they were confident that they could extract a representative sample.

Just wondering if that was brought up at all - doing a fine needle style biopsy after the surgical biopsies were inconclusive?

Paul