| | 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 | Tamara, Typically doctors don't automatically send the slides out for HPV testing. I had to TELL them I wanted them tested but that was 2 years ago. Maybe some doctors are recognizing the importance of HPV testing where studies have shown a marked increased probability of HPV being the cause like young, non smoker, casual drinker, primary in tonsils and mets to nodes. 72% chance HPV+.
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: Aug 2008 Posts: 716 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 716 | I see my ENT in a couple of weeks and I'm going to request my specimen to be tested for HPV, even though it wasn't BOT or tonsil but it was SCC.
7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer
8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35
11-4-08 Recovering & feeling better
| | | | | Joined: May 2007 Posts: 132 "OCF Down Under" Senior Member (100+ posts) | | "OCF Down Under" Senior Member (100+ posts)
Joined: May 2007 Posts: 132 | Hi Tamara,
I'm sorry that you're here, especially at such a young age. I concur with the others that you should get another opinion. Have there been any discussions with a Radiation Oncologist? If not you might want to speak to your ENT about being referred to one for an opinion.
I have had radiation but my ENT said that it was only done because I had extracapsular spread from the affected lymph node. If it had not broken out of the node then I was given the impression that I could have avoided radiation and chemotherapy.
I guess it's possible that treatment regimes may differ here compared to the United States. Radiation certainly seems more prevalent as a standard treatment even in some N0 necks in the US than it is here. I'm from Melbourne by the way!
Good Luck,
Sue G
55 y/o
SCC LL Tongue 3/27/07
Part. mandibulectomy 9/2/07
Left ND 5/12/08
RT/Chemo
Rec LL Tongue 07/09
Part gloss 8/5 & 8/25
Surg 10/28/09 re mets to R neck & L jaw
RT & Chemo finished 12/22/09
PEG fitted 05/06/10
L buccal SCC 10/10
freeflap (forearm)surgery 2/28/11 L buccal and gingiva
| | | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | | "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 | Hi Tamara,
Welcome to this great forum which is really a family that you can turn to for the best advice from people who understand and have been or are going through what you are.
As you can see I had surgery only (N0) and as mentioned you must get more professional opinions on your treatment options ASAP.
Where were you treated in Sydney?
Also sorry to hear you needed a 2nd flap and hope that this one has been successful.
Please let us know how you are going.
Gabriele
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | | Joined: Dec 2008 Posts: 8 Member | | OP Member
Joined: Dec 2008 Posts: 8 | Hi Gabe,
Thanks for the message. I had my surgery at the Prince of Wales in Sydney. My ENT specialist is Assoc Prof Tom Havas..he's the Director of ENT there (I think). All the medical professionals I've encountered have told me how lucky I was to be referred to him directly.
It was actually the radiation oncologist at POW who advised the radiation. Rationale being that it would only offer minimal gain, and the risks outweighed it. Prof Havas concurred with this.
I'm seeing an ENT and a radiation oncologist here in NZ, so will get their input as a third and fourth opinion.
Tamara
Diagnised 29th Oct 08 (29 years old): SCC, T2N1 - partial glossectomy (25%); flap construction (twice - first one died); neck dissection 8 nodes removed, 1 node positive; trache - 14 days, partially collapsed lung. No radiation at this time.
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