| Joined: Jun 2014 Posts: 38 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jun 2014 Posts: 38 | 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. ;-)
Head and neck cancer, Squamous cell carcinoma, HPV p16, Stage 3N (6/14) Occult origin; 58 year old male 35 rads & 2.5 doses Cisplatin chemo 7/10/14> 8/25/14 1.5 years clear of cancer, at this point.
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| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | Never heard of anyone SCC HPV+ having rads to the Nasal Pharanx.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 5 | That's said.... Your origin is unknown that's also concerning - is there no way they can check the nasopharyngeal area first?
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | Often times with HPV+ SSC the primary at the BOT resolves itself before the cancer is found in a node or 2.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: Jun 2014 Posts: 38 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jun 2014 Posts: 38 | 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.
Head and neck cancer, Squamous cell carcinoma, HPV p16, Stage 3N (6/14) Occult origin; 58 year old male 35 rads & 2.5 doses Cisplatin chemo 7/10/14> 8/25/14 1.5 years clear of cancer, at this point.
"This, too is part of Life's Rich Pageant!"
| | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | [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??
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | 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/8/1/30http://www.cancer.med.umich.edu/:/news/nasopharyngeal-cancer09.shtml
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: May 2014 Posts: 2 "OCF Down Under" Member | "OCF Down Under" Member Joined: May 2014 Posts: 2 | 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.
Last edited by sharhoop; 07-03-2014 05:41 AM.
Husband diagnosed 24/3/14 stage 2/3 Type1 Nasopharyngeal carcinoma 35 radiations plus 3 rounds cisplatin (200mg each time) finished 11 June14 Surgical removal 4 wisdom teeth scheduled 10 Jul 14. 3 rounds of chemo - carboplatin/5FU started August and finished Sept 14 Clear PET/CT scan on 8 Sept 14 - NED
| | | | Joined: Jun 2014 Posts: 38 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jun 2014 Posts: 38 | [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
Head and neck cancer, Squamous cell carcinoma, HPV p16, Stage 3N (6/14) Occult origin; 58 year old male 35 rads & 2.5 doses Cisplatin chemo 7/10/14> 8/25/14 1.5 years clear of cancer, at this point.
"This, too is part of Life's Rich Pageant!"
| | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | 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. 
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
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