#22426 03-04-2007 01:51 PM | Joined: Mar 2007 Posts: 21 Member | OP Member Joined: Mar 2007 Posts: 21 | Hi everybody! My name is Jon and I hail from Western New York. I just had surgery on February 14th to remove my rt tonsil, 20 lymph nodes (2 cancerous) same side, partial soft pallat removed and I believe part of my right esophogus. They made a flap from the underside of my left wrist to graft into my throat, which included a blood supply. Despite all of this, my surgeon say's he believes that I have a high probability for survival and quaility of life. 6 weeks ago I would not have believed you if you told me I had been through all this and now fighting to be a cancer survivor.
I'm going to need alot of help from you folks to help guide me through the coming months. I am 49 years old, but am not ashamed that I have cried a river over the last few weeks.
If anyone can't sleep in the middle of the night, maybe we can hookup for a chat.
Thanks! | | |
#22427 03-04-2007 03:25 PM | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | You have certainly come to the right place! There are lots of great and experienced people here that can help you with any questions your have. Your surgeon sounds very encouraging which really helps a lot. Has he recommended further treatment like Radiation or Chemo therapy? There is a "search" feature for all kinds of information available on this site and on the home page that can help you to ask the right questions when you see your doctor. Most of us have shed a few tears, too so you're not alone there. But it's important too, to let the doctor know how you feel in the event he thinks you might need meds for anxiety or anything else. Keep in touch and let us know how you are doing.
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.)
| | |
#22428 03-04-2007 03:34 PM | Joined: Dec 2006 Posts: 77 Senior Member (75+ posts) | Senior Member (75+ posts) Joined: Dec 2006 Posts: 77 | Welcome! If you are looking for support, you have come to the right place. I am a relative "newbie" here, but I can assure you that this is the best bunch of people around. It is good to hear that your Doc has given you much hope for the future. But for all the questions that I am sure you'll have, this is the place to be.
God Bless,
Amy
Dx 11/30/2006 Stage I SCC of gum/surgery 01/12/07 resection of the right posterior mandible with a right buccal transpositional flap 3 teeth removed/reconstruction to come in 9-12 months
| | |
#22429 03-04-2007 03:35 PM | Joined: Jul 2006 Posts: 446 "OCF Canuck" Platinum Member (300+ posts) | "OCF Canuck" Platinum Member (300+ posts) Joined: Jul 2006 Posts: 446 | Hey Jon, Welcome to the club tht no one wants to belong to. You're doing exactly the right thing...fighting the demon, with everything you've got. If you'd said you hadn't cried over this, I wouldn't have believed you.
I'm about 8 months further along than you, and I underwent major surgery and radiation. It is the biggest battle you will ever fight, but you will learn things about yourself that will amaze you.
Keep hanging around here and you'll meet some of the most amazing and wonderful people you'll ever have the privelege of meeting Wayne
SCC left mandible TIVN0M0 40% of jaw removed, rebuilt using fibula, titanium and tissue from forearm.June 06. 30 IMRT Aug.-Oct. 06
| | |
#22430 03-04-2007 04:30 PM | Joined: Apr 2006 Posts: 583 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Apr 2006 Posts: 583 | Welcome Jon,
Welcome to a great site that will be here for you 24/7 and will help walk with you through your recovery.
Use the search to help you find what you need. If you do not find, then just post in the area, such as after treatment, coping etc.
Tears are for healing so do not feel bad about that. We have all cried over our situation. You are not alone we are all here to help each other through this journey.
2004 SCC R.tip 1/4 tongue Oct. 2005 R. Neck SCC cancer/Chemo Cisplatin 2x/8wks. Rad. Removed Jugular vein, Lymph gland & some neck muscle. TX finished 1/20/06... B.Cancer 3/29/07 Finished 6/07 Bi-op 7/15/09 SCC in-situ, laser surgery removed from 1st. sight. Right jaw replacement 11/3/14. 9 yrs cancer free as of Jan. 2015
| | |
#22431 03-04-2007 04:33 PM | Joined: Apr 2006 Posts: 583 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Apr 2006 Posts: 583 | OOps
Hit the wrong button again!
I was going to say; to make sure you look up Dry Mouth and Thyroid. Those two things are really important along with nourishment & liquid intake.
by for now Take care Diane
2004 SCC R.tip 1/4 tongue Oct. 2005 R. Neck SCC cancer/Chemo Cisplatin 2x/8wks. Rad. Removed Jugular vein, Lymph gland & some neck muscle. TX finished 1/20/06... B.Cancer 3/29/07 Finished 6/07 Bi-op 7/15/09 SCC in-situ, laser surgery removed from 1st. sight. Right jaw replacement 11/3/14. 9 yrs cancer free as of Jan. 2015
| | |
#22432 03-04-2007 04:38 PM | Joined: Apr 2006 Posts: 794 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Apr 2006 Posts: 794 | Welcome, Jon....sorry that you have to be here, but you are a lucky guy to have found this site. I am only a year out from surgery, and I have learned soso much and, more than that, have felt such sincere and caring support here that I know that this site is a true blessing. I have found several new friends here who have had similar surgery to mine, and that has helped a lot, but even those with different actual surgeries all share the fact that we all are fighting this monster that tries to damage our bodies and our spirits. We are determined to fight it with everything we've got, and we are here to help each other do just that.
I have lost part of my hard palate. Do you have to wear an obturator to close the defect in your soft palate?
Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
| | |
#22433 03-04-2007 05:19 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,676 | Hi, Jon, so what kind of concerts do you like to go to ?? And what kind of fish do you like to catch?? Crappie, pan fried, is my favorite to eat, or red snapper grilled and laced with garlic. Please catch us up on what is happening with you at present. There is lots of help available here. If you are having radiation or chemo, please tell us. Amy in the Ozarks
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
:
| | |
#22434 03-05-2007 05:19 AM | Joined: Apr 2006 Posts: 378 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Apr 2006 Posts: 378 | Hi Jon, Jack also had the right tonsil, about half of his soft palate, a base of tongue resection and a neck dissection last year. He was part of a clinical trial at U of PA testing the DaVinci robotic surgical technique. That was followed by chemo radiation.
It's very hard in the beginning to believe there's another side to this and that you will come thru it. None of us had any perspective in the beginning but it really does get better. One year later, we've just come back from our postponed trip to Hawaii where Jack ate everything he wanted to and went scuba diving with me. We even got remarried. I'd say that was pretty good quality of life.
Swelling is very common at this point post surgery, how have your graph sites healed? Are you scheduled for radiation and chemo, and if so when does that start, and how's your swallowing? We were very concerned about Jack's speech and swallowing when he was diagnosed but I am happy to report that his speech is perfect and his swallowing is getting better. He had speech therapy and did exercises to strengthen the muscles affected by the surgery and that worked well. He also had acupuncture for the dry mouth and is one of the ones that had very good results - I know others who have not felt that benefited them.
He's able to eat just about everything he could before but goes a little slower, doesn't chew and talk etc. He does not need an obdurator plate because his graph site on the soft palate healed very well, and he learned what worked and didn't with swallowing. Occasionaly he'll get food stuck but he "repositions" (hacks it up) and hasn't had major issues.
How's the snow up there in Western NY? I went to Niagara University and lived in Buffalo and had a good time up there...when I wasn't freezing. This site is a wealth of information, take some time to browse on the main page and try the search functions. If there is a topic you are interested in you can also search on this forum and come up with what others have said about it.
Regards JoAnne
JoAnne - Caregiver to husband, cancer rt. tonsil, mets to soft palate, BOT, 7 lymph nodes - T3N2BM0, stage 4. Robotic assisted surgery, radical neck dissection 2/06; 30 IMTX treatments and 4 cycles of cisplatin completed June 06.
| | |
#22435 03-05-2007 07:17 AM | Joined: Feb 2007 Posts: 176 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Feb 2007 Posts: 176 | Jon,
I warned you that you will not alone. We will all cry together, and then laugh together. My wife is at home on the couch with a broken foot. She told me to tell your wife to give her a call anytime for some info, along with moral support. Let me know how today goes. All our best.
Rob J
6-05, Left Tonsil-T1N2bM0 stageIVA, chemo(Cisplatin), radiation(6660cGy), neck disection, no PEG. HPV negative. (Doc suspects posit) 3-9-09 last of 30 HBO treatments.
| | |
Forums23 Topics18,168 Posts196,925 Members13,103 | Most Online458 Jan 16th, 2020 | | | |