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Joined: Oct 2013
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n74tg Offline OP
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In my cancer diagnosis I have been receiving radiation only, ie no chemo. Several on this forum have mentioned they thought rads with chemo is the way to go. As you can imagine it has caused me to question my treatment protocol and ultimately to ask my doctor point blank did he think I needed to be getting chemo also. He shook his head NO. I asked could he explain further.

He goes and gets a copy of the NCCN (National Comprehensive Cancer Network) Guidelines for my diagnosis (tonsilar cancer for T2N0 staging). And there it is in plain english, for this diagnosis radiation only is the recommended treatment plan.

He then offers on his own that the downside risks of chemo for your diagnosis are riskier than the benefits you will receive. So, for your diagnosis it's radiation only.

If your diagnosis changes then we will consider chemo. I asked how much change for that. He says lymph node would have to grow to larger than 1cm size and give doctor reason to think it was involved in the cancer. I expect I would then receive a fine needle aspiration biopsy to confirm cancer and surgical removal prior to chemo.

For those of you not familiar with my case, my first CT showed one lymph node same side of neck as tumor swollen to about 1cm size. As part of my treatment simulation they run a second CT. On this CT lymph node swelling had gone down back to normal size.

I hope this helps future patients.


Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)

09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good

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

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NCCN guidelines indicate 3 modes of treatment for T2 oropharyngeal. 1. Radiation 2. Resection of primary with ipsilateral or bilateral neck dissection 3. Radiation with systemic treatment (chemo/targeted therapy), It's just a guideline, and not set in stone, and other matters are taken into account, and if adverse effects still show they move on to the next step. Your next step after radiation, if it fails, is really salvage surgery, not chemo, which doesn't kill this cancer, and would only be palliative. Chemo could be used with radiation after surgery.

Good luck.

Last edited by PaulB; 11-15-2013 07:06 AM.

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: Aug 2011
Posts: 269
ngk Offline
Gold Member (200+ posts)
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Joined: Aug 2011
Posts: 269
Hi Tony, I too was in the same situation as you and was very worried about not getting chemo along with the rads. I trusted my dr and hoped for the best.
All the best to you also! smile


Nancy (53 at dx)
Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs
7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo.
5/29/13 - Found primary
7/3/13 - TORS
7/8/13 - Emergency Surgery/Blood vessel burst in throat
8/9/13 - Peg in
9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck
10/14/13 - Radiation ended!
11/12/13 - PEG out!
Joined: Jan 2013
Posts: 1,293
Likes: 1
Patient Advocate (1000+ posts)
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Patient Advocate (1000+ posts)

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Likes: 1
Hi Tony,

Obviously no doctor here but throwing 2 bits in anyway. You are T2n0 which means the primary tumor is pretty small and no metastasis at all so there is good reason to believe the cancer has not spread at all anywhere, even microscopically.

Chemo can and is used to kill microscopic cancer that escapes from the primary. It also is used as a radiosensitizer to improve the radiation therapy.

Given the radiation can target the primary effectively quite well and low concern of micro cancers, it seems quite reasonable that your case does not warrant chemo dosing which does carry sometimes significant downside risks.


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
Joined: Jul 2012
Posts: 3,267
Likes: 4
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,267
Likes: 4
To add, complicate matters further, chemo is sometimes used as "adjunct treatment", after radiation, Chemoradiation. How long, I'm not sure, maybe piggybacking on making radiation work better, as mop up for any microscopic cancer, which can't been seen by the eye, testing, only in pathology under the microscope. 1cm is small, but not microscopic, and to my understanding, radiation keeps working just as long as treatment lasted, like 6 weeks. One risk with adjunct chemo is "radiation recall." Some I know of are on Erbitux or Tarceva as maintenance chemo, mostly with distant mets, unresectsble tumors, but one of my oncologists was looking into it or me for "chemoprevention."

I had 35 IMRT, 70Gy, bilaterally, alone in 2011. My oncologist said my body would not be able to handle chemo then, a year after disastrous induction chemo. Radiation alone is being looked into, especially with HPV related HNC, which is different biology than tobacco/carcegenic related caused, but not all HPV related HNC are as favorable, a small group reacts like tobacco/carcegenic caused.


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: Jul 2009
Posts: 1,409
Patient Advocate (1000+ posts)
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Patient Advocate (1000+ posts)

Joined: Jul 2009
Posts: 1,409
When they were poking and prodding me back in early 2009 my RO sent me to an MO for consultation. After my neck dissection I remember being in the ICU when the latter came in and told me "I have good news for you - no chemo." He seemed surprised that I wasn't more demonstrably excited. At the time, with an emergency trache in and more tubes than the London Underground, I barely could open my eyes.

The reason he gave was that there was no extracapsular spread from the 2 infected nodes, the larger of which had been removed a month or two earlier during my first neck surgery, when they still thought it was a cyst.

Maybe protocols have changed in the last two years?

Anyway I put my trust in my team and I'm okay now nearly 5 years later. I should add that the MO, just recently retired, was at the time a professor at the UCLA medical school, which is a decent place so they tell me.

FWIW...


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18

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