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#192223 04-12-2016 12:45 PM
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punkin Offline OP
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Hello I am punkinsue, recently diagnosed with Squamous Cell Carcinoma of the Tonsil. I had a left tonsillectomy with removal of a portion of the palate and excision of surrounding tissue last Thursday, April 7th. I have a referral to an oncologist for radiation therapy more than likely. The extent of the therapy to be determined pending tests. I am going to need much support as this came out of left field. No one in my family has cancer and I have never smoked in my life. Hope to meet some wonderful people on here to be mutual supports and to gain information as I progress through the stages of recovery

Last edited by punkin; 04-12-2016 01:47 PM.

Suzanne B 62 non-smoker
04/07/2015 Excision of left tonsil with surrounding tissue
04/11/2015 Biopsy results SCC of Tonsil HPV16
04/23/2016 New diagnosis oropharyngeal cancer
05/12/2016 Radiation begins each weekday X 7 weeks
05/17/2016 Chemotherapy start
07/01/2016 treatments complete
punkin #192224 04-12-2016 01:06 PM
Joined: Jun 2007
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Administrator, Director of Patient Support Services
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Patient Advocate (old timer, 2000 posts)

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Welcome to OCF, Punkinsue! You have definitely found the right place for support. We will help you get thru this.

There are many here who are nonsmokers who have ended up with OC. Many of them are HPV+ with their tumors being in the base of their tongue or tonsil areas. When your test results come back, you may want to inquire if your HPV+. There are also some eher who have no known cause yet they have developed OC. Regardless of why its happened, it needs to be removed.

Best wishes with your continued recovery. Check in often and keep us updated as you go.



Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
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 xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Apr 2016
Posts: 13
punkin Offline OP
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Thank you for your encouraging words


Suzanne B 62 non-smoker
04/07/2015 Excision of left tonsil with surrounding tissue
04/11/2015 Biopsy results SCC of Tonsil HPV16
04/23/2016 New diagnosis oropharyngeal cancer
05/12/2016 Radiation begins each weekday X 7 weeks
05/17/2016 Chemotherapy start
07/01/2016 treatments complete
punkin #192228 04-12-2016 08:24 PM
Joined: Oct 2013
Posts: 559
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"Above & Beyond" Member (500+ posts)
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Hello Punkin - welcome to the family. It's a big family, very supportive and knowledgeable about all aspects of diagnosis and treatment of oral cancer. You will get better quality answers here than perhaps anywhere other than what your doctors tell you.

There's lots of important information on the website, so start reading that. It will help prepare you for what will occur during treatment.

There is a search function at upper right of this page where you can type in any phrase you want to learn about. It is a great place to start getting your questions answered.

Good luck with your upcoming initial meeting with the oncologist. Take a notepad with you to that meeting, you will get a lot of new information that you will want to know more about.

Good luck, and welcome to the family.


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

punkin #192229 04-12-2016 08:38 PM
Joined: Apr 2015
Posts: 91
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Hi Punkinsue! I am also an RN. After my surgery, I was anticipating chemo and radiation and ended up needing neither which was a bigger surprise than the diagnosis for me. I hope all goes well at your initial meeting with oncology. They told me I had a 30% chance of not needing chemo/radiation and I ended up not needing it! So who knows. Keep us posted! Denise


Biopsy tongue 3/24/15
Diagnosis SCC tongue/floor of mouth
Partial glossectomy, resection and right neck dissection done
4/22/15
T2aN0M0
05/01/2015-no further treatment indicated at this time,
monthly check ups for two years
n74tg #192240 04-13-2016 05:40 PM
Joined: Apr 2016
Posts: 13
punkin Offline OP
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Thank you for your encouraging words.

I'm having a problem locating new people on the forum. Many new people to the forum are family members. Maybe you can guide me.


Suzanne B 62 non-smoker
04/07/2015 Excision of left tonsil with surrounding tissue
04/11/2015 Biopsy results SCC of Tonsil HPV16
04/23/2016 New diagnosis oropharyngeal cancer
05/12/2016 Radiation begins each weekday X 7 weeks
05/17/2016 Chemotherapy start
07/01/2016 treatments complete
punkin #192241 04-13-2016 06:19 PM
Joined: Oct 2013
Posts: 559
Likes: 1
"Above & Beyond" Member (500+ posts)
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Look for them here in the Introducing Myself forum, and for people making their first post. Similarly, when they joined the forum is shown as registered date at left. Lastly you can go to top of page and click user list and then sort by date, by state, by a lot of different things.


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

punkin #192242 04-13-2016 08:20 PM
Joined: Apr 2015
Posts: 91
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Posts: 91
When I first joined there were several people who were diagnosed about the same time, within several weeks. I have noticed some people do not find the forum until after they are further along in treatment. I hope you are doing well! Denise


Biopsy tongue 3/24/15
Diagnosis SCC tongue/floor of mouth
Partial glossectomy, resection and right neck dissection done
4/22/15
T2aN0M0
05/01/2015-no further treatment indicated at this time,
monthly check ups for two years
punkin #192249 04-13-2016 10:05 PM
Joined: Jan 2013
Posts: 1,291
Likes: 1
Patient Advocate (1000+ posts)
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Welcome to the best first-hand OCF cancer forum around. We all know it cause we been through it. We're not doctors but with hundreds of folks discussing their situations you will get a lot of knowledge very quickly here.

Start reading up and ask plenty of questions. You've arrived early in the days so have time to get educated to make informed decisions you will be comfortable with.


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
donfoo #192256 04-14-2016 07:45 AM
Joined: Apr 2016
Posts: 13
punkin Offline OP
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Thank you for your message and encouragement. I appreciate all the support at this time. I am still trying to accept this as a reality and each day I feel I am making progress. I see the oncologist for the first time today. Hopefully it will be informative and not terribly stressful. Thank you
Suzanne B


Suzanne B 62 non-smoker
04/07/2015 Excision of left tonsil with surrounding tissue
04/11/2015 Biopsy results SCC of Tonsil HPV16
04/23/2016 New diagnosis oropharyngeal cancer
05/12/2016 Radiation begins each weekday X 7 weeks
05/17/2016 Chemotherapy start
07/01/2016 treatments complete
n74tg #192257 04-14-2016 07:49 AM
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Posts: 13
punkin Offline OP
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Thanks I'll keep looking. First appt. with the oncologist today at 3. Hopefully I will know more after that. Still in mega pain from the surgery. Maybe he can help with that too...


Suzanne B


Suzanne B 62 non-smoker
04/07/2015 Excision of left tonsil with surrounding tissue
04/11/2015 Biopsy results SCC of Tonsil HPV16
04/23/2016 New diagnosis oropharyngeal cancer
05/12/2016 Radiation begins each weekday X 7 weeks
05/17/2016 Chemotherapy start
07/01/2016 treatments complete
Neicy #192258 04-14-2016 07:54 AM
Joined: Apr 2016
Posts: 13
punkin Offline OP
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Thank you so much for your message. I will continue to look each day for some partners to go through this with. I appreciate hearing from you survivors as it gives me hope that it can be arrested. I'm a fighter but I know it's gonna be
Tough. Thanks again
Suzanne B


Suzanne B 62 non-smoker
04/07/2015 Excision of left tonsil with surrounding tissue
04/11/2015 Biopsy results SCC of Tonsil HPV16
04/23/2016 New diagnosis oropharyngeal cancer
05/12/2016 Radiation begins each weekday X 7 weeks
05/17/2016 Chemotherapy start
07/01/2016 treatments complete
punkin #192263 04-14-2016 07:31 PM
Joined: Mar 2016
Posts: 8
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Welcome! I too, am new to this journey. I have found this site to be very encouraging and truthful and helpful. You will find out lots of information here from people who have gone through and are going through what you are.
best wishes with your journey!


51 year old non smoker
Dec.2015 Diagnosed with squamous cell cancer of tongue
Jan 2016 Clear PET
Jan 2016 Partial glossectomy
April 21,2016- hemi glossectomy with RFFF and left neck resection.
-trach for 6 days
-feeding tube for 8 days
-home on day 9
Pathology May 2016
T2 N2B M0
2 positive lymph nodes
30 rads completed July 13/2016

punkin #192272 04-15-2016 01:37 PM
Joined: Mar 2015
Posts: 55
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Be sure to let us know how things went with your oncologist yesterday. The first couple of days after surgery can be tough, so I hope you're getting through it OK. I know from experience that keeping the pain meds flowing before it starts to feel awful is the way to go. Need to stay ahead and not chase the pain. I'm sure your docs and nurses have told you this. They're right!


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
punkin #192308 04-27-2016 08:26 PM
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Posts: 13
punkin Offline OP
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My pet scan came back without mets or lymph node involvement. I will be having a scope of the throat to rule out any possible problem. My mask was made for my radiation treatments and that was interesting. Made it through though. Thank you for all your kind words and advice. Tonsil area is still healing after 3 weeks which is concerning me. My surgery was a little more involved than the regular tonsillectomy as much tissue was removed surrounding the tonsil including part
Of the palate.



Suzanne B 62 non-smoker
04/07/2015 Excision of left tonsil with surrounding tissue
04/11/2015 Biopsy results SCC of Tonsil HPV16
04/23/2016 New diagnosis oropharyngeal cancer
05/12/2016 Radiation begins each weekday X 7 weeks
05/17/2016 Chemotherapy start
07/01/2016 treatments complete
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