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PJE #188970 04-01-2015 02:24 PM
Joined: Mar 2015
Posts: 55
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Thanks so much to all of you for the welcome. Just letting you know that I got the biopsy results back from the ENT office today, and they confirm the diagnosis that's now in my profile. From the reading I've done over the past 2 days here and elsewhere, every word of that is good news for me (except carcinoma, of course). Next step is staging, which I guess we'll get a start on when I see the surgeon day after tomorrow.

Meanwhile, I've been reading a lot of the posts here on the forum of other cases. I am humbled to be among such strong and supportive folks. Reading all this has lifted my spirits and given me the confidence to know I can get through this. Thanks so much to all of you.


Peter, age 62 at Dx
3/27/15 Dx T2N2aM0 Tonsilar P16+ G3 SCC
4/6/15 Full PET clear except for above
4/24/15 TOLM tonsillectomy/clear margins. Neck dissection 20 nodes (1 w/cancer & extracapsular extension)
5/28/15 PEG in
5/27 - 7/10/15 Daily Radiation to 66 units cumulative; Cisplatin weekly X 7
8/24/15 PEG out
9/24/15 Full body PET - N.E.D.
12/22/15 CT and physical exam. Continued clear.
3/11/16 Physical exam. Continued clear.
7/12/16 One year post-treatment! CT clear.
7/7/17 2 years post - still clear
PJE #188975 04-01-2015 07:43 PM
Joined: Apr 2014
Posts: 236
Gold Member (200+ posts)
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Gold Member (200+ posts)

Joined: Apr 2014
Posts: 236
Hi Peter

Welcome to OCF.
Good luck in your battle. Be strong along the way and you will do fine. There is always someone here who has been through what ever hurdles you may cross. Just ask and we all will answer.

Best Wishes
Heidi


Sweetpe
Caregiver
RE:My Mother
Age 70
Non Smoker
SCC 3/4/2014 Left rear jaw
Mandiblctmy 3/25/2014
35RAD Completed on 06/03/2014
MRI 9/3/2014
25mm lobulated recurrence left mandible/floor of mouth carcinoma
9/23/14 Salvage Surgery
MET(s)
9/23/14 Salvage Surgery Not Successful
Chemo Recommended
1st Round of Cisplatin Chemo Started 10/20/14
Cisplatin stopped 11/20/14. Side affects to bad.
Chemo started again 1/22/15 Carbo/Docetaxel
Passed Away April 22,2015


PJE #188984 04-02-2015 01:28 PM
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
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Welcome, Peter.


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






PaulB #188985 04-02-2015 02:59 PM
Joined: Jul 2011
Posts: 945
"Above & Beyond" Member (500+ posts)
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"Above & Beyond" Member (500+ posts)

Joined: Jul 2011
Posts: 945
Hi, Peter
Remember to bring a list of questions, and write down the answers! You sound really together but brain freeze in the surgeon's office is always a possibility wink
Maria


CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
PJE #188988 04-03-2015 12:19 AM
Joined: Mar 2014
Posts: 79
"OCF across the pond"
Supporting Member (50+ posts)
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"OCF across the pond"
Supporting Member (50+ posts)

Joined: Mar 2014
Posts: 79
Welcome Peter , sorry you have to be here but you will find amazing support and tons of help and advice from people who have been there before you .
I check in most days and it really does give you comfort and a feeling of belonging . Personally for me I've been speaking recently to people who don't live far from me and that too is a massive help and also gives me a chance to support and give back a little .
We are all here for you.
😃 Di


Di 47 none smoker / drinker

T4 SCC left tonsil
1 Cistplatin,30 RAD finished treatment on 4/12/2013
Trismus
First MRI scan appears clear
TX
NG tube 9 weeks
acute vommiting, syringe driver 9weeks
2 month checks
PJE #188995 04-04-2015 07:39 AM
Joined: Mar 2015
Posts: 55
PJE Offline OP
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Joined: Mar 2015
Posts: 55
Maria, that was really good advice to write down questions/answers. I'm normally a pretty steady person, but I was so worked up before the meeting with the oncology surgeon yesterday I had to ask my wife Deb to drive us there. The written question list kept me on track and focused.

Well, it was a good news, bad news, good news visit. First of all, the surgeon really impressed us. He is an assistant professor at U of Wisconsin medical school, trained at Harvard (which I understand to be a reasonably good college...), and more than ten years experience treating this kind of stuff. We have a lot of confidence in him.

The bad news is the cancer has spread to multiple lymph nodes. Hence the staging info that I've added to my profile below. The final good news is the surgeon thinks this is very amenable to TORS surgery, on which he is a certified expert. The reading I've done had me hoping for exactly this. So we expect the most likely treatment to be a tonsillectomy via TORS, with a neck resection to get at the lymph nodes, followed by radiation therapy to kill off those pesky stray cells that might be hanging out.

Of course there's more to do here. I have a PET scan scheduled for Monday (Apr 6) afternoon, and a consult with a radiation oncologist on Wednesday morning. The Carbone CCC cancer board meets on Wednesday, so it's conceivable we could have a treatment approach confirmed next week at the start of treatments shortly thereafter.

Mentally, I think I'm doing OK - although getting back to sleep in the middle of the night has been hard. I accepted a prescription for Escitalopram (Lexapro) 10mg against the possibility of depression - can't hurt, right? Daytimes are pretty good for me - the stories I've read here have been a real help.

Thanks again for your kind words of support. I'll check back here often, and post updates as I get them.

Go Wisconsin Badgers against Kentucky tonight in the NCAA semifinals!


Peter, age 62 at Dx
3/27/15 Dx T2N2aM0 Tonsilar P16+ G3 SCC
4/6/15 Full PET clear except for above
4/24/15 TOLM tonsillectomy/clear margins. Neck dissection 20 nodes (1 w/cancer & extracapsular extension)
5/28/15 PEG in
5/27 - 7/10/15 Daily Radiation to 66 units cumulative; Cisplatin weekly X 7
8/24/15 PEG out
9/24/15 Full body PET - N.E.D.
12/22/15 CT and physical exam. Continued clear.
3/11/16 Physical exam. Continued clear.
7/12/16 One year post-treatment! CT clear.
7/7/17 2 years post - still clear
PJE #188996 04-04-2015 07:44 AM
Joined: Mar 2015
Posts: 55
PJE Offline OP
Supporting Member (50+ posts)
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Joined: Mar 2015
Posts: 55
Gosh, I forgot to ask what your opinions are of the treatment plan I'm favoring. Does anyone have experience pro/con? Thanks in advance.


Peter, age 62 at Dx
3/27/15 Dx T2N2aM0 Tonsilar P16+ G3 SCC
4/6/15 Full PET clear except for above
4/24/15 TOLM tonsillectomy/clear margins. Neck dissection 20 nodes (1 w/cancer & extracapsular extension)
5/28/15 PEG in
5/27 - 7/10/15 Daily Radiation to 66 units cumulative; Cisplatin weekly X 7
8/24/15 PEG out
9/24/15 Full body PET - N.E.D.
12/22/15 CT and physical exam. Continued clear.
3/11/16 Physical exam. Continued clear.
7/12/16 One year post-treatment! CT clear.
7/7/17 2 years post - still clear
PJE #188997 04-04-2015 08:42 AM
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
I didn't have this type surgery, but It's pretty common now having a tonsillectomy with TORS, with HPV, at places that are experienced, and have equipment to do them, as well as the patient qualifications, followed by a neck dissection, then radiation, and chemo possibly, based upon the pathology of surgery. I'm not familiar with the cancer center, but see they have a tumor board, and most likely have a multi team approach. I've seen reports with better outcome, shorter hospital stays, deescalation of radiation, reduced peg need and duration with this type surgery first, followed by radiation. All surgeries have risks. 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






PJE #188998 04-04-2015 12:16 PM
Joined: Jul 2011
Posts: 945
"Above & Beyond" Member (500+ posts)
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"Above & Beyond" Member (500+ posts)

Joined: Jul 2011
Posts: 945
Hi, Peter
It sounds like you are in good hands for your treatment. They were just beginning to do the TORS surgery when my husband had his treatment and he did not have access to it. His doctors did the best they could at the time to reduce the debilitating effects - which was to replace the the cytotoxic plantinum-based chemo with the Cetuximab. He still had a hefty dose of radiation - 72 grays.
There are some recent study results out that show good results for the TORS / slightly reduced radiation combination. You could ask your doctor about those as compared to the radiation / cisplatin protocol. I'd also ask about the radiation schedule - accerated may yield some advantage, but is harder for the institution to accomodate.
But - just a word about numbers (and also to Deb). When you are stressed, your ability to do math in your head goes to heck in a handbasket. The doctors on the tumour board will be professionaly weighing your individual characteristics with the study and their own personal results when they discuss your case and make the recommendation. Unfortunately, we need at time machine to take us into the future to determine what really is optimal. Our doctor friends emphasized that it is important that you trust your ENT and surgeon. It sounds like you have that, so you should be able to move forward.
Maria

Last edited by Maria; 04-04-2015 12:17 PM.

CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
PJE #189038 04-06-2015 09:18 PM
Joined: Jan 2012
Posts: 42
Contributing Member (25+ posts)
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Contributing Member (25+ posts)

Joined: Jan 2012
Posts: 42
Condolences on the Wisconsin Badgers, was a great game right till the end.

From personal experience I have to say I was impressed with the TORS surgery. The process, recovery, and now at just over 3 years glad I made that decision. lucky it was available for me.

Always good to get multiple opinions...


Nov2011Tonsil Cancer Stage3 T1N1 HPV+, Non-smoker, slight drinker
Dec2011 Radical Tonsilectomy (TORS),
Jan2012 Neck Disection areas 2,3,4
Feb2012 Opinions from 5 RO's decision for No Rads/No Chemo
Jan2013 all clear at 1 year , continue regular check-ups
Jan2014 all clear at 2 years, less frequent check-ups
Jan2015 all clear at 3 years, MRI, chest x-ray, blood work all good
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