| Joined: Apr 2016 Posts: 13 Member | OP Member Joined: Apr 2016 Posts: 13 | 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 | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | 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. ChristineSCC 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 | | | | Joined: Apr 2016 Posts: 13 Member | OP Member Joined: Apr 2016 Posts: 13 | 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 | | | | Joined: Oct 2013 Posts: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2013 Posts: 559 Likes: 1 | 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
| | | | Joined: Apr 2015 Posts: 91 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Apr 2015 Posts: 91 | 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
| | | | Joined: Apr 2016 Posts: 13 Member | OP Member Joined: Apr 2016 Posts: 13 | 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 | | | | Joined: Oct 2013 Posts: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2013 Posts: 559 Likes: 1 | 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
| | | | Joined: Apr 2015 Posts: 91 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Apr 2015 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
| | | | Joined: Jan 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,293 Likes: 1 | 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 | | | | Joined: Apr 2016 Posts: 13 Member | OP Member Joined: Apr 2016 Posts: 13 | 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 | | |
Forums23 Topics18,235 Posts197,106 Members13,294 | Most Online1,788 Jan 23rd, 2025 | | | |