| Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | I understand. What I was saying is they found some HPV patients, in a review of years of records, scans, pathology, slides, many were originally misdiagnosed with oral cancer or cancer was missed in the oropharynx, which is sometimes difficult to detect, and the primary was in the tonsil or base of tongue all along, especially when it involved HPV. I'm sure your doctors were thorough.
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: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | I agree with donfoo - both guns blazing... Right between the eyes!
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 2012 Posts: 381 "OCF Canuck" Platinum Member (300+ posts) | "OCF Canuck" Platinum Member (300+ posts) Joined: Sep 2012 Posts: 381 | Kristin, I am a bit more tempered in my view, as I was in the same boat as you. Surgery to remove the tumor, ND with nodes removed both sides. All were clear and I had clear margins. They gave me the option of rads because the tumor had grown quickly and there was peri-neural involvement, but the margins and nodes were clear. I decided to hold off, but it was a really hard decision.
It sounds to me like they just didn't get it all the first time (based on him saying he was going for more aggressive margins), but you have to do what you feel comfortable with.
Good luck with the appointment.
Tina Diag: Aug. 13/12 T3N0M0 50% + glossectomy and bilateral radical neck dissection, removal of nodes zones I - V Surgery October 11/12 Chemo/rad on hold due to clear margins and nodes Sept 21/13 clear CT with anomaly thought to be the artery, being watched closely. Dec 16/13 - anomaly confirmed artery, all clear nickname: "get 'r done" Plans: kick cancer's butt
| | | | Joined: Jun 2013 Posts: 346 Likes: 3 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Jun 2013 Posts: 346 Likes: 3 | Oh, Paul, I see what you are saying. Would it not show on a scan though?
I guess I will see the ENT's recommendations at our follow up on Wednesday. I will be very surprised if I am even swallowing other than liquids by then. I had no idea a tongue could swell so much.
Surgery 5/31/13 Tongue lesion, right side SCC, HPV+, poorly differentiated T1N0 based on biopsy and scan Selective neck dissection 8/27/13, clear nodes 12/2/13 follow-up with concerns 12/3/13 biopsy, surgery, cancer returned 1/8/14 Port installed PEG installed Chemo and rads 2/14/14 halfway through carboplatin/taxotere and rads March '14, Tx done, port out w/ complications, PEG out in June 2017: probable trigeminal neuralgia Fall 2017: HBOT Jan 18: oral surgery
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | I will be curious what the doctor says too, and is worth mentioning. Tumors may or may not show on a scan depending on it's size. HPV, at least in the oropharynx, can be fought off and be undetectable at the primary or metastasizes quickly to the lymphs taking all nutrients with them and killing off the primary sometimes, and HPV are usually small tumors, T1, T2, but the nodes can be much bigger due to nutrients in that area. A PET/CT can go as low as 5mm. I had one that found a 3x7mm that was picked up. I had tonsil cancer, and a pandendoscopy was done to see if there was any other cancer in the upper aero digestive tract, but was never tested for HPV, which was mentioned was probably the cause. Some say the scope is not necessary as HPV oropharynx related is usually confined to the oropharynx, tonsils, base of tongue, unlike tobacco/alcohol related that has a "field of cancerization" that can effect the mucosal anywhere in the upper aerodigestive tract that may cause secondary, synchronous, metachrounous tumors. Also, I read that positive benefit of having HPV is for the oropharynx only, and not found in other locations with HPV, so you may want to ask about that too. Sorry for the tongue pain. I only had a punch, and incisional biopsy, and that was painful. Good luck with your doctor appointment.
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: Jun 2013 Posts: 346 Likes: 3 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Jun 2013 Posts: 346 Likes: 3 | Hmm. Well, my removed nodes all tested clear. I suppose they might have missed one in testing? This second round was just my initial incision hurting, and there was a lump of scar tissue. He said biopsy, because no way to tell what was behind it otherwise. Apparently it was not so much scar tissue as new cancer. My husband says it was something like 1mm by maybe 20mm long. I assume down the length of the tongue. More details next week, of course.
It is kind of interesting how the swelling has not crossed the midline, and you can see the centerline of my tongue is shoved way over to the left to make room for my right side balloon tongue. I would laugh if I was able.
Surgery 5/31/13 Tongue lesion, right side SCC, HPV+, poorly differentiated T1N0 based on biopsy and scan Selective neck dissection 8/27/13, clear nodes 12/2/13 follow-up with concerns 12/3/13 biopsy, surgery, cancer returned 1/8/14 Port installed PEG installed Chemo and rads 2/14/14 halfway through carboplatin/taxotere and rads March '14, Tx done, port out w/ complications, PEG out in June 2017: probable trigeminal neuralgia Fall 2017: HBOT Jan 18: oral surgery
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