| | Joined: Feb 2011 Posts: 8 Member | OP  Member
Joined: Feb 2011 Posts: 8 | OK, where do I begin? Spouse of 24 years recently diagnoised with Squamous Cell Carcinoma at the age of 52. non Smoker. Preliminary results from ENT doctor, T2N1M?. We are scheduled for Laryngoscopy and Esophagoscopy Rigid or flexible biopsy on Thursday, 2/17. Oncologist appt on Monday followed by radiation consultation the following Thursday.
Just found this site last week and have begun reading all the posts.
Dr said the biospy exam/surgery will last about 30 minutes and then he will be able to tell me more on what he sees. No PET yet, the radiation doctor wants to order the test.
Gianna
Spouse of Brian
Brian diagnosed with SCC Feb 8th, 2011
Cisplatin 2X , 35 RT,
3 cm tumor in mouth, swelling in node
HPV Positive, Non Smoker, moderate drinker, Age 52
| | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | Gianna - So glad you found this site. There is a wealth of information here and support by compassionate, helpful others who have been where you are. It's good that your husband has a biopsy scheduled so that you can know for sure what is happening. Make a list of all your questions so that you can get them answered when you see the doctor. You could start from the main page of OCF with information on diagnosis at: http://oralcancerfoundation.org/diagnosis/index.htm - or any other links that can help you get your questions together. And until Thursday, try to keep busy so you don't start thinking too much about the whys and what-ifs but more about the very possible good outcomes that come with surviving oral cancer. We'll be thinking about you. Do let us know what is happening.
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Have they mentioned HPV to you?
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.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Welcome to our family and the best of everything to you. The best advice I have for right now is to keep your mind occupied on your everyday normal life. Yes it is hard to do that but try your best. We get to the point where we dwell on OC and what might be going on with us. Wait until the test are over before reaching any conclusions. It isn't OC until the biopsies say it is.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,406 | Gianna, welcome. Sorry you have to be here, but it's a great place for support and info. We're all pulling for both of you and will be reading and thinking about everything you post. David's question is an important one, btw.
david 2
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | Joined: Aug 2008 Posts: 238 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Aug 2008 Posts: 238 | Hope all goes well and good luck for the testing. Until then, try to keep busy and know that we are all thinking of you and praying for you and your husband. You have definitely found the best place here for answers and support. Hang in there!
CG/Mom: 5 1/2 years SCC upper palate,4 recurrences, surgeries, chemo & radiation. Mom went to Heaven 1/21/11.
| | | | | Joined: Feb 2011 Posts: 8 Member | | OP Member
Joined: Feb 2011 Posts: 8 | Thank you all for your suppport, encouragement and knowledge sharing. Nervous about Thursday, Dr said he will meet with me immediately after the surgery to inform me what saw.
I will post Friday any new updates.
Gianna
Spouse of Brian
Brian diagnosed with SCC Feb 8th, 2011
Cisplatin 2X , 35 RT,
3 cm tumor in mouth, swelling in node
HPV Positive, Non Smoker, moderate drinker, Age 52
| | | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | | "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 | Welcome to the best support group you will find for OC Gianna.
It is normal to be nervous about your Thursday appointment.
You need to make sure that someone is with you for support and to take notes and as Anne-Marie says have a list of all your questions.
If there is something that you are told that you do not understand make sure you get it explained to you until you do.
I did not find this site until a year after my first appointment and remember I just nodding my head even when I did not know what was being said and blindly accepted what was in front of me.
This is no time to be shy which is the normal effect that professional people have on most of us.
Best wishes for your visit.
Gabriele
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 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: 6 | Welcome to OCF, Gianna. You have found the best place for info on oral cancer. This forum is full of insight from patients and their caregivers. We even have a couple medical professionals around here from time to time. Make use of the search function on both the forum and also the main OCF pages.
You have been given good advice by everyone. Especially Gabe who said to make sure you understand what they are telling you. Remember the doc works for you! Is your husband being seen at a cancer center? Are they familiar with these types of cancer? How many do they see per month/per year? These are some good questions to ask on your appointment. Some people tape record their doctor sessions. Thats a very good idea cuz most of us tend to go a little numb when talking about cancer. Its also a very good idea for you to accompany your husband to all of his doctor visits. Men tend to clam up and then complain to their wives instead of their doctors.
If you have questions just ask, we are here to help you. Best wishes with your husbands upcoming appointment.
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: Jan 2011 Posts: 49 Likes: 1 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Jan 2011 Posts: 49 Likes: 1 | Welcome and I have recently been diagnosed myself...Jan. 24, 2011 I got the news. I have yet to begin treatments. Port going in on Friday and then chemo and radiation begins on Monday. 3 rounds of cisplatin and 7 weeks of radiation.I don't know about any surgery at this juncture but I am not forgetting about that as a possibility. It is just not possible due to the location of the SCC.
I think you have found the very best place to get good info. from those that have been through and have experienced a variety of situations through their treatments.
Where is your husband being treated?
Good lucks and prayers,
NonaChris
63 years old
Nona to Alora, Emery, Ilyana, Harper, Nolan, & Rory. Yogini since 2012. Namaste.
Diagnosed 10/5/20 Oral Cancer/ RT side of tongue SCC Stage I Partial Glossectomy 10/23/20 Right Neck Dissection 12/4/20 Clear Nodes
BOT SCC 1/18/11 Stage IV N3 M0 HPV+ Port2/18/11
Treatment start 2/22
CISplatin 2rnds, Rads:35 treatments
July 12 doctors' deemed me cancer free-port out July 18.
Non-smoker, was a light-drinker No drinking since diagnosis
| | | | | Joined: Feb 2011 Posts: 8 Member | | OP Member
Joined: Feb 2011 Posts: 8 | Great news! All went well with todays procedure. The doctor did not find anything new today. As our doctor put it, things were "clean as a whistle". so there was nothing new to biopsy. There were no surprises so the only thing we have to deal with is the 3 cm SCC tumor in the mouth.
Oncology appt on Monday followed by Radiation Oncology appt on Wed. We are beginning to see progess instead of just waiting.....
I have made a binder to keep my my medical notes, calendar and doctors information organized and in one place. It has been very helpful and it has given me a sense of control over a situation that I have little control over.
This forum is a wonderful source of information. I am very happy I have found it at the beginning stages of our long journey.
For those that asked..... Brian is being treated in Santa Cruz, CA.
ENT - Santa Cruz
Radiation - Santa Cruz Radiation Oncology
Oncologist - Santa Cruz, have yet to meet them.
Thanks again for sharing your stories, knowledge, and experience.
Gianna
spouse of Brian
Diagnosed SCC 2/8/11
Waiting on radiation therapy and still waiting to meet our Oncologist.
Spouse of Brian
Brian diagnosed with SCC Feb 8th, 2011
Cisplatin 2X , 35 RT,
3 cm tumor in mouth, swelling in node
HPV Positive, Non Smoker, moderate drinker, Age 52
| | | | | Joined: Feb 2011 Posts: 8 Member | | OP Member
Joined: Feb 2011 Posts: 8 | Great news! Hubby went to surgery today for euroscopy and no other suspicious tumors were found, so no more biopsies needed. Dr said his larnyx was "clean as a whistle". The only issue is the 3 cm tumor in his mouth that was diagnosed as SCC. Meeting with the Oncologist on Monday and the Radiation consultant on Wed.
I am glad I found this forum users group so early in my journey. Thanks for sharing your wisdom, experience, knowledge and friendship.
For those that were asking, we have an oncologist in Santa Cruz, CA and Radiation therapy will be done at Santa Cruz Radiation Oncology.
Gianna
(second attempt at posting this, dont know why my other post did not post. possible duplicate? )
________________________
Spouse of Brian
Diagnosed with SCC Feb 8th,
Meeting the oncolgist for the first time on Monday
Radiation consultation on Wed.
Spouse of Brian
Brian diagnosed with SCC Feb 8th, 2011
Cisplatin 2X , 35 RT,
3 cm tumor in mouth, swelling in node
HPV Positive, Non Smoker, moderate drinker, Age 52
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Welcome - everyone here is fantastic and knowledgeable - if you have questions someone here can answer - take care and many blessings yto you.
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
| | | | | Joined: Feb 2011 Posts: 14 Member | | Member
Joined: Feb 2011 Posts: 14 | Great news! Keep up the faith, and good luck. I'm sure you will keep us posted.
Letitia Baker mother of beautiful 26 year old daughter who is my best friend. Squamous carcinoma Stage 1. T1N0N0
| | | | | Joined: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,406 | That's good news, Gianna. Please let us know as soon as you know more.
Courage!
David2
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | Joined: Feb 2011 Posts: 4 Member | | Member
Joined: Feb 2011 Posts: 4 | i,m a newbie to just wanted say this site is great, my husband had cancer on his lip had surgery doing radition and chemo ,he has 14treatments of radition today. can,nt spell to good lol welcome to this site love and prayers gerry | | | | | Joined: Feb 2011 Posts: 6 Member | | Member
Joined: Feb 2011 Posts: 6 | Please be encouraged. I went through a similar regime. 35 radiation, 7 Chemo for SCC stage 4on my tonsil. I am 13 months out without any signs of anything unusual. My schedule is now check ups every other month after 1 year of monthly visits. It's a journey, but this site appears to offer incredible support from sincere people having experienced a similar journey.
Deal with each day at a time and recognize that there are many survivors having been where you are.
Blessings to you.
35 radiation txs. 7 cistplatin. SCC on tonsil and 2 possible nodes. 14 months out and holding the line. Just graduated to ENT visits every other month.
Life just seems to keep on happening with or without you.
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