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Joined: Jul 2012
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Patient Advocate (old timer, 2000 posts)
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Joined: Jul 2012
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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
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"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
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"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
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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)
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"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
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Platinum Member (300+ posts)
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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)
Offline
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 Offline
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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