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

Joined: Jul 2012
Posts: 3,267
Likes: 1
I have seen some T1 patients have chemoradiation, just radiation, including myself, and it depends on the doctor, institution, tumor size, thickness, area of primary, nodal involvement, patient. NCCN is just a guideline.

BOT can be persistent tumor, more difficult to treat, due to the deep musculature, lymphatics in the area for tumor to spread, go deeper in the BOT. Was chemoradiation offered or just a question?

I have a long history with T1 tonsil confirmed by biopsy, possibly BOT, valeculla involvement by PET, but not found in tissue sample. Was scheduled for Induction Chemo, followed by concurrent chemo radiation, but reaction to IC prevented that. 5 days IC killed the tonsil cancer, but it returned, as I later read would happen in less than a year. Anyway, had 4 more recurrences after that went into my neck muscle, skin, outside of primary and lymphs somehow to be "free form" or "roaming cancer" in my neck that can spread anywhere. Had positive margins from one surgery, Perineural and lymphovasvular invasion, so cancer can travel anywhere along the blood and veins lines too, and needed a number of treatments, radiation, surgeries. i have been continuously in some form of CRT treatment, recovery, surgery, dental, HBO, transfusions for 3.5 years for an original T1N2bMO.


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: Apr 2013
Posts: 14
timm Offline OP
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Joined: Apr 2013
Posts: 14
Thank you all so much for taking the time to respond. To add to frustration, our appointment with our ENT surgeon to discuss our plan after he met with tumor board did not happen. Doc had flight delays. Set us up with resident who clearly did not know what was going on & we spent 20 mins telling him & found out by asking him that tumor board did not meet & to top it off he told us margins were not clear, which our doc said they were so told boy wonder resident to check his computer screen again & he verified we were right. Grrrrrrrr...took every ounce of my will power not to jump over table at him. So now we wait again for this life alterring appointment....2 weeks but hopefully less. Sadly, this incident puts a sour taste in my mouth & not totally confident anymore. This is a comprehensive well respected cancer clinic. Ah well. I suppose it happens everywhere. Could also look at the bright side: clearly docs do not have any sense of urgency regarding him so that could be good. smile Thank you all again. Now we have time to hear others opinions on this.


T - 55 yrs old
BOT - right lymph node
T1N2AM0, Stage 4, SCC HPV+
Diagnosed: 4/23/13
Surgery 5/10/13, ND, BOT lesion removed
Pathology report: 23 nodes taken, no cancer; clear margins; no extracap
Treatment recomm: Radiation only - 30 sessions, lower dose of 60gy to start in approx a week.
Joined: Feb 2013
Posts: 78
Supporting Member (50+ posts)
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Supporting Member (50+ posts)

Joined: Feb 2013
Posts: 78
I was given the option between surgery with at a minimum radiation (possibly with chemo) and concurrent chemo and radiation.

I saw 4 different cancer centers before deciding on my treatment and cancer center. A general thought that was communicated to me was that having 2 modalities of treatment was superior to 3 modalities with respect to long term effects and complications. If the doctors could keep it to 2, that would be an ideal situation.

I ended up going with chemoradiation as the surgeon ordered a PET and judged that he may have issues with clean margins on the primary and based on that they thought there was a good chance I would still need chemo and radiation. If the imaging and presentation had indicated a low chance of adverse features and bad margins than I may have ended up on the surgery + radiation route.

I was also told that the long term effects and complications of radiation + chemo were worse than surgery + radiation.

It sounds like the surgery went well and there were no adverse features, so I would think that radiation only is a candidate for treatment (which is supported by the NCCN Head and neck cancer guidelines).


Andrew
age 25

early 10/12 - enlarged lymph node area
01/13 SCC of L tonsil, L BOT, 2 L lymph nodes
stage IVa, T2N2bM0, HPV+

2/13 2 doses cisplatin big bag, 2 doses weekly cisplatin + 35x IMRT
4/13 TX finished
7/13 PET/CT - NED!
Joined: May 2013
Posts: 63
"OCF Kiwi Down Under"
Supporting Member (50+ posts)
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"OCF Kiwi Down Under"
Supporting Member (50+ posts)

Joined: May 2013
Posts: 63
Just been diagnosed stage IVA as well (T1-2,N2b,M0) and also think that you're a great candidate for surgery & rads only (this is what I'm looking at having too).

I think that where it allows, it's better to surgically remove everything and then have a lower dose of radiation. It's faster, less damaging & has a quicker recovery time. I personally also feel better at the idea of the tumor/mets no longer being there.

I hope this helps you in your decision-making. Keep us posted.


39yr old female, DX BOT SCC Stage IVA (T1N2bM0) HPV+
28 May 13 - Pharangoscopy & tongue biopsy
29 May 13 - BOT Surgery & right ND (lvls 2-5)
31 May 13 - Hemorrhage, emergency trach, critical care
BOT clr mgns, 9/67 nodes & extracapsular extension
Finished chemo (cisplatin) & 30 rads
Joined: Jul 2012
Posts: 3,267
Likes: 1
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,267
Likes: 1
I had 70Gy IMRT radiation alone, and it did not kill the cancer, it recurred. To eradicate SCCC you need more than 50Gy, but more like 70Gy or higher. especially those areas difficult to treat, likely to recur like BOT. It is shown in studies that by adding chemo improves outcome up to 20 present or so, depending on the type of chemo or tagged therapy. NCCN is just a guideline not set in stone. and each doctor, patient is different. All I can say is you do not want a recurrence, and should do it right the first time.


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






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