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timm Offline OP
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Hello all. I posted month ago to introduce. Well, hubby has now had surgery. Very small lesion on base of tongue & one tonsil removed along with neck dissection. Is now a T1N2AMO (originally diagnosed as T2N2BMO). 23 nodes taken & pathology results show cancer free in all. Yay!! No extracapsilary involvement, so very good news indeed. So now I'm.curious as to what u all think whether radiation/chemo should be done or not. Have read lots of studies that say not necessary, most recently a 2013 study done by Mayo Clinic that suggests not necessary for certain types of which hubby fits profile perfectly (HPV 16+).

I would be so interested to hear others thoughts! Thanks so much. Oh, meeting with tumor board wednesday & we meet with our ENT surgeon thursday. Being treated at a comprehensive cancee care hospital.


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.
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"OCF Canuck"
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Congrats on getting through surgery.

I am not understanding hubby's staging. T1 is tumour size. N2 would say metasis to 2 nodes locally. So if there is no cancer in any nodes - why the N2?

This is not just a correctness question - it is paramount to what people will suggest to you for future treatment.

Thanks.

Donna


Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
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Personally, I would do chemo and radiation to get any microscopic cancer, which may not be visible by any scans, and can spread elsewhere, even outside the lumps, to distant organs. That's one study, I'm sure there are others that differ, and this one may not work for all. Maybe see what the NCCN guidelines are, but not sure how being restaged at sT1N2aMO, which still shows involvement. Good luck.


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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timm Offline OP
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Sorry. My lingo is still not up to par. He was originally staged T1N2BMO. I guess now he's nothing. Primary tumor on base of base of tongue removed & smaller than thought pre-surgery & tumor in lymph node removed. 23 other nodes removed showed no cancer. Clear margins after surgery. Does that clear it up?? Thanks for responding. Look forward to hearing your thoughts re radiation/chemo or not. We value all of your thoughts!

And thank you, Donna. He got through surgery extremely well, all things considered. smile


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: Mar 2013
Posts: 421
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Hi Timm,

Before my surgery, my team said if the cancer was contained as your husbands was, I would not need chemo but would be getting rads. I was Dx'd Tx (unknown primary) N2b MO Stage IV HPV+. I had two very large cancerous nodes and they broke out so chemo/rads it was.


I was treated at a CCC as well (Johns Hopkins). The tumor board and team will make the final call. Based on what you posted it seems he would just get rads or nothing at all.

However, I have a friend who went through this (treated at JH as well - same RO and surgeon! - small world eh?) Tx'd BOT HPV+ SCC. He had just surgery. Unfortunately it came back with a vengeance within a year. He ended up getting chemo/rads.

Your husbands Dx bodes well to respond to treatment if they go that route.

Positive thoughts and prayers

"T"


57
Cardiac bypass 11/07
Cardiac stents 10/2012
Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+
Palatine Tonsillectomy/Biopsies 12-21-12
Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13
Emergency Surgery/Bleeding 2/18/13
3/13/2013 30rads/6chemo
Finished Tx 4/24/13
NED Since
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"OCF Canuck"
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Thanks for clearing that up. If it was just one lymph node involved - it would be T1 N1 M0 - T is for tumour size, N is for Node involvement and M is for distant metasis.

In my humble opinion, I would get the radiation AND the concurrent chemo. The chemo offered will likely be Cisplatin which isn't like the well known chemo (no hair loss), but its job is to enhance the efficacy of the radiation.

This is an aggressive cancer and needs to be responded to in kind. Again, IMHO (and I am not a doctor - only a patient), I would hit it as hard as I can tolerate. Recurrances are not fun.

Good luck with your decisions - keep us posted. You will no doubt hear many opinions about this, take them all into consideration.

Donna


Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
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IMHO he should not have had ANY surgery BUT he should have had and probably still needs to have concurrent chemo/rad and that's the reason he shouldn't have had the surgery since the chemo/rad is what will kill the cancer.


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.
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"OCF Canuck"
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Right... I was thinking the same thing but what is done is done... However this particular type of oral cancer HPV+ - if it is tonsillary they do often remove the tonsils, but ALWAYS radiation and chemo is the primary treatment. I would do it - definitely.


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
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KP5 Offline
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Me too. Those were my thoughts as well. You get one chance with this. Chemo and rads....take no chances.


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
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Posts: 638
klo Offline
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Hi Timm

Glad to hear that there were no nasty surprises with your husbands surgery. And in the scheme of things, there was some quite good news with the staging being downgraded to a less severe level (all too often it is the other way around).

It is often difficult to interpret what we are told as it is not easy to remember all those numbers when one is not even sure what they all mean. You described the tumour and nodal involvement as below which I have taken to be the latest and most accurate description of your husbands diagnosis.

[quote]Primary tumor on base of base of tongue removed & smaller than thought pre-surgery & tumor in lymph node removed. 23 other nodes removed showed no cancer. Clear margins after surgery.[/quote]

This reads to me that there was nodal involvement ("tumor in lymph node removed") but had not spread very far (" 23 other nodes removed showed no cancer"). If this is correct there would be a number after the "N" and likely a 1???

The National Comprehensive Cancer Guidelines for your grade of oropharyngeal cancer recommends surgery as one of the options (radiation being the other). My read on this is that chemoradiation is NOT recommended for low level tumours (T1) but have attached a link to the guidelines for you to check for yourself (or use it as a discussion point with your oncologist). I think if the grade of tumour is higher, or nodal involvement more extensive, chemo plus radiation is recommmended

http://www.nccn.org/professionals/physician_gls/pdf/head-and-neck.pdf

You and your healthcare team have selected the surgery option and the next recommended step where there is "one positive node with no adverse features" (which in your case refers to the tumour that was removed from the lymph node which had no extracapsular spread) is to "consider radiation".

I would hope your team could quote this stuff in their sleep so for them it might be fairly simple. However, they need to bring you up to speed and help you to make decisions that you are confident with so you probably need to be very clear on how big your husband's tumour was, confirm that the nodal involvement was minimal and ask questions around what other options there might be. Get the doctor to write your husband's staging on a piece of paper if need be (but remember sometimes it changes as more information is uncovered).

Well done on picking up a BOT cancer at such an early stage! All too often these things have progressed to T3-4 before anyone notices anything wrong and as you can appreciate, makes it much harder to treat and leaves more damage behind than a smaller tumour such as a T1 which has better outcomes than the more advanced tumours.






Karen
Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes
Dx March 2010 51yrs. Unresectable. HPV+ve
Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31
Chemoradiation (IMRTx35 + weekly cisplatin)
Finish Aug 27
Return to work 2 years on
3 years out Aug 27 2013 NED smile
Still underweight
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