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#139141 - 09/02/11 07:13 PM New Patient, recently diagnosed, Stage II SCC
Falcon Offline
Member

Registered: 09/02/11
Posts: 5
Loc: Texas
My cancer was diagnosed 8/17, in my tonsil. It is about 2.5 cm and restricted to the tonsil. Originally the EENT thought that it was spread into the neck and the roof of the mouth, as per his exam and the Catscan. I then did a Petscan, and when I met with the medical oncologist, was somewhat relieved to find the tumor is isolated only in the one tonsil. It is considered as Stage II. So, I am here to learn experiences of other patients and their viewpoints.

Treatment will be two cycles of chemo, followed by radiation. I wondered why they didn't choose to do a tonsillectomy, but apparently the chemo/radiation is the best regimen. I conferred with my family MD on this, and he said yes, that is the way most of his oral cancer patients have been treated. So, that's what I will go for. The prognosis seems to be pretty good, and I think I am ready for the fight.

I am 66, in good health, and probably more fit than most guys my age, with good exercise and diet habits. I was a fairly heavy smoker and drinker, but quit smoking in 1985, and quit drinking in the early 1990s. Have never used any smokeless tobacco.

It appears that my doctors are highly-regarded cancer fighters. Communication has been good, and everything has moved super quickly. No waits for appointments, etc. yet. I figure there will be challenges, and am ready to accept them.

Thanks in advance for any comments.

Old Falcon

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#139148 - 09/02/11 09:14 PM Re: New Patient, recently diagnosed, Stage II SCC [Re: Falcon]
Deejer47 Offline
"Above & Beyond" Member (500+ posts)

Registered: 09/16/08
Posts: 709
Loc: Chico, Ca.
Hi Falcon, my primary was also on my to0nsil. It was explained to me that a tonsilectomy would not be needed as radiation would burn the tonsil away anyaway.
_________________________
David R. 65 yr old male non-smoker, light drinker, stage 3 or 4, depending on which doc you ask, scc rt. tonsil, 2 nodes, 7 weeks radiation and chemo. No surgery. Teatment ended 3/20/08. PET scan 8/08 showed no cancer.
And now, as of oct, 2010, caregiver to wife, Linda, with breast cancer.
May, 2013, Linda diagnosed with stage 3 ovarian cancer. Enuf already.

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#139149 - 09/02/11 09:14 PM Re: New Patient, recently diagnosed, Stage II SCC [Re: Falcon]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 4804
Loc: Toronto canada
Hi - welcome there are quite a few of you guys here someone will be along to talk to you soon enough. Are you bring seen at a ccc? Because - I could be wrong ( very possible) but as far as I know usually they remove the tonsil ( why not - you don't need it? It has a tumor... Get rid of it so the bulk of the cancer is gone... Then use radiation and chemo for any micro scopic cancer that may be left. If you arent at a ccc then you should get a second opinion there - take care and good luck!
_________________________
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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#139153 - 09/02/11 09:48 PM Re: New Patient, recently diagnosed, Stage II SCC [Re: Cheryld]
davidcpa Offline

Administrator, Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Registered: 09/28/06
Posts: 8303
Loc: Gulfport, Florida
I would ask that my cancer cells be tested for HPV.

Normally the Tx is concurrent radiation and chemo not chemo first and then radiation. Also the chemo is usually given in 6 weekly doses or 3 larger doses spread throughout the radiation days, i.e. 1st day of rad, 14th day of rad and last day of rad. Chemo is most often recommended if there is nodal involvement which is usually the case when the primary is located in the Base of Tongue or tonsil region.

I would not hesitate to get another opinion from a CCC like MD Anderson.
_________________________
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 14, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.

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#139161 - 09/03/11 02:28 AM Re: New Patient, recently diagnosed, Stage II SCC [Re: davidcpa]
Eshwar N Offline
Gold Member (200+ posts)

Registered: 05/19/11
Posts: 285
Loc: Delhi, India
Hi Falcom, welcome to OCF family. We all may give you varying advices and may have difference of opinion but our objective is to get a best treatment and care for you.

While you can refer to NCCN guidelines (Page 18 for T1-2,N0-1) published at OCF website: http://oralcancerfoundation.org/treatment/pdf/head-and-neck.pdf

Your Stage II cancer may just require surgery or chemoradiotherapy but induction chemotherapy may have been planned to reduce the risks.

I would also suggest getting second opinion from CCC
_________________________
Father; 67 yrs; RIP: 2012/05/26

TX:SCC pT2N1M0G2;Glossectomy+SND+CCRT(59.3Gy+6xCis.)[2009]
TX:Nodal Mets; 3xDCF[2011/05/05]
TX: RND + PMMC Flap[2011/07/11]
DX:SCC PNI+ECE
TX:Re-RT 60Gy[2011/09/21]
TX:Gefitinib 250mg[2011/12/18]

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#143260 - 11/24/11 12:26 AM Re: New Patient, recently diagnosed, Stage II SCC [Re: Eshwar N]
Falcon Offline
Member

Registered: 09/02/11
Posts: 5
Loc: Texas
Thanks for all the posts and wellwishers. I am now past the three massive rounds of veterinary-issue chemo. Cisplatin/Taxatere(sp?) with all the trimmings (I haven't learned all the terminology and abbreviation to make a tag below) I have now completed two weeks of radiation. 5 more to go. I also am taking three lighter rounds of Carboplaxin/Taxol
chemo to work in tandem with the radiation.

Both the Med Onc and the ENT say the tonsil tumor is gone. There is one tiny tumor in one node, as indicated on the last CT scan.
ENT today said he thinks it is gone. He says no surgery will be necessary. I thought this might mean that I could get a shorter radiation term. No such luck. Same for everyone, regardless of tumor size, I guess. BTW, mine is HPV. Drs. say that is to my advantage.
Thanks to all,
Falcon

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#143262 - 11/24/11 01:57 AM Re: New Patient, recently diagnosed, Stage II SCC [Re: Falcon]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 8277
Loc: PA
Falcon, welcome to OCF. Sorry I missed your original post. Your doc's are correct, it is an advantage for your cancer to be HPV+. Being HPV+ usually responds better to treatment and has less of a chance for recurrence.

Best wishes with your treatments! Most people who push themselves with high calories (2500+ daily) and 48+ oz of water daily get thru this a little easier. If you run into any questions, please feel free to ask. We will help get you thru this.
_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

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#143284 - 11/25/11 12:17 AM Re: New Patient, recently diagnosed, Stage II SCC [Re: Falcon]
klo Offline
"OCF Down Under"
"Above & Beyond" Member (500+ posts)

Registered: 05/18/10
Posts: 638
Loc: Sydney Australia
Hi Falcon

I have nothing much to add except to let you know that my Alex underwent a similar regimen as you can see from my signature. We found out at the end of treatment that he was HPV+ which was a welcome surprise as he was a heavy smoker/drinker and we assumed his tumour was smoking caused.

Whilst many undergo chemo/radiation alone, (that's where you have chemo and radiation at the same time either once a week or once every 3 weeks), the addition of induction chemo (the "veterinary" dose chemo you describe) has shown to be similar to surgery plus radiation in terms of survival and recurrence. We opted for this as surgery wasn't an option.

It might have been a bit of overkill - we will never know, but better this than discovery or development of mets down the track, possibly watching Alex die and wondering the whole time if we could have saved him if we had done the induction chemo.

Good luck with the rest of your treatment, keep us posted, and keep asking questions. One of the great things about this site besides it being obviously great for support and information, is that you will realise that whatever you are going through has happened to someone else before and you will hopefully be reassured that your reactions (physical and emotional) are not uncommon.

Karen
_________________________
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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#143307 - 11/25/11 06:08 PM Re: New Patient, recently diagnosed, Stage II SCC [Re: klo]
David2 Offline
Patient Advocate (1000+ posts)

Registered: 07/12/09
Posts: 1252
Loc: Los Angeles
Falcon - sounds to me as though you're doing all the right things. And I'm so glad to read of the HPV+ status!

You're not complaining (as I certainly did!) about the rads, which I take to be a good sign. It's a tough treatment, no question, so please post any and all questions about any of it - side effects especially as there are real experts here on how to manage those.

Assume you'd visited a dentist and gotten fluoride trays prior to the radiation (?). Anyway it's something to ask about if not.

Good luck and courage - from all of us.
_________________________
David 2
SCC of occult origin 1/09 (age 55)| Stage II TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 5 years all clear in 6/14

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#143431 - 11/30/11 04:20 AM Re: New Patient, recently diagnosed, Stage II SCC [Re: David2]
Falcon Offline
Member

Registered: 09/02/11
Posts: 5
Loc: Texas
Thanks for the followup, everyone. To klo, yes, I understand about your idea of overkill, I have felt the same way. I just felt that a little too much was a lot better than not quite enough. I was originally scheduled for just two rounds of induction chemo, but the ENT wanted it changed to three. And I was OK with it. Whatever it takes.

Re: the flouride trays, I don't have those and they weren't suggested by the Rad ONC. I know nothing about them, but will ask.

I have started to experience the mucositis mouth sores. Had some thrush with it last week, but got rid of that with medication. I Got the magic mouthwash today and tried it prior to evening meal. It does help. This stuff is pretty expensive. $42 for 480 ML bottle. Compound pharmacy doesn't take any insurance, although my insurance company said I can file an exception form, and they will almost certainly reimburse for it. Has anyone had experience with this? My rad ONC says he must go through a compound pharmacy in our city for this prescription.

Also, 30 ML, (three tablespoons)seems to be a BIG dosage on the Magic Mouthwash. Has anyone tried maybe 20 ML?

Thanks,
Falcon



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