| Joined: Aug 2012 Posts: 1 Member | OP Member Joined: Aug 2012 Posts: 1 | Well where do I start okay June 29 2012 I went in for a mass removal in my neck on the left side. When i came back for my post op on July 13 I received news i didn't want to hear I was diagnosed with Squamous cell carcinoma. Apparently I had cancer in my lymph node so they removed the infected one and the one behind that had just a little in it. From there on July 24 I had a tonsillectomy and they found that the cancer started in my left tonsil which had spread to the lymph node that was removed from the previous surgery. I don't smoke or drink but I do carry a HPV strain that this cancer likes . The doctors told me they removed almost all the cancer but to be on the safe side I will have to go through Radiation and 3 rounds of chemo. I also had to have oral surgery and had all my molars and wisdom teeth removed on my lower jaw since i had some bad cavity's. Now I m getting ready to get a feeding tube and chemo port put in next week cause come in two weeks i start my treatment for 6 weeks 5 days a week. I am scared out of my mind but ready to get this over with. i went from perfectly healthy to this over night but i am blessed that they caught it when they did and i have high expectations that i will be cancer free soon. I have a pretty good support team with my awesome husband and my family backing me and sending me prayer every day Now I just need to beat this and be a better and more stronger me | | | | Joined: May 2012 Posts: 114 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: May 2012 Posts: 114 | Welcome, glad you found us but so sorry you have to be here. I'm glad you have your treatment plan put in place already and you have a great support system, you will certainly need them so lean on them as long and as hard as you can. Being a caregiver myself, though it is not an easy role to have, when you love someone you can't imagine being anywhere else.
I'm sorry you have to go through this, as I am sure you will read on here it is not an easy road, but you will get through it. There is so much great information AND support here, everyone will do whatever necessary to help you. You should encourage your family to join as well, there is so much here that I did not know when I was caring for my mom that I know would have made things a bit easier along the way.
Best of luck with your upcoming treatments! Keep that positive attitude and it will carry you through... you CAN be cancer free.
Amy CG to mom Janet - diag w/ early SCC 8/11-surg w/ rad neck dissect & graft from arm/thigh 9/11-evid in nodes tx 6 wks rads (5/wk) w/cistplatin (1/wk for 6 wks) began 11/11-wk or 2 break 12/11 due to severe side effects-done 1/12- 3/23/12 mets to liver lung bone-hospice 4/7/12-lost fight 4/22/12 | | | | 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! Im so glad you took my suggestion and have joined OCF! This is the very best site to get correct up to date medical info. You will find many knowledgeable members who will help you get thru everything you are facing. While facebook has its networking benefits, it is unmonitored and there can be alot of bad medical advice given. This site complies with Health of the Net standards to provide correct trustworthy medical info. What concerns me about your post is taking the lymph node that had cancer and then only taking the very next one which also had "just a little" cancer in it. You also wrote about your doctors getting almost all of the cancer. If you have not done so already, please seek out a major cancer center. I do not think what you have been thru sounds to be correct procedures from a cancer center. Before you do anything else get a second opinion. A major cancer center can make a huge difference in your treatment. You will have a team of specialists all working together on your individual case who have more experience in oral cancer than small facilities. Cancer Centers 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 2012 Posts: 42 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Jan 2012 Posts: 42 | Welcome again.... Just want to reinforce Christine's observations. I just went through the left tonsil cancer spread to lymph nodes, non smoker, minimal drinker, HPV. The approach was different, they dug and biopsied first to pinpoint the original tumor (tonsil), then the tonsilectomy, then neck dissection to remove all lymph nodes, then test nodes to determine stage, decide on radiation. Another opinion from an experienced cancer center would really make sense..
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 | | | | Joined: Apr 2012 Posts: 47 "OCF across the pond" Contributing Member (25+ posts) | "OCF across the pond" Contributing Member (25+ posts) Joined: Apr 2012 Posts: 47 | Hi Cnunn21 This site has kept me sane. I am 9 weeks into chemo radiation and it is getting tough. Take the advice offerd above, I dont know what got most off the cancer means?? as I understand it you want to get it all and that is where radiation and chemo come into things. If you get a stomach tube learn to love it, the harsh treatment is for the big reward so be strong here is a stranger in London praying and caring for you. CubanKeith
21st March squall cells.Endescopy not oesophagus, ENT .April endo nose CAT MRI general Panendoscopy prim-HPV 16 base of left tongue one node-stage 2.23rd of May.14/5/12 9 teeth out.8/6/12 PICC inserted.11/6/12 1st Chemos 25/6/12 2nd Chemo Cisplatin5FU:27/6/12 PEG23/8/12 Radiation finished 1/9/12.
| | | | 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 | Hi there and welcome. It sounds like they are doing a little bit of everything to you - removing the tumor is a good thing and the nodes though generally when they do the nodes they take out quite a few. HPV + cancer generally responds well to radiation and chemo so often they try to treat it with that first, but I have heard of them removing the tonsils Prior to treatment. It's not an easy path but you'll get through it. Good luck and many blessings. | | | | 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 | Cununn21,
You my friend are lucky! Yea that sounds crazy but in the oral cancer world you are. I often tell people that I had the "baby oral cancer" even though I was staged a IV. I know you are scared out of your mind right now but you will be able to handle this and your thoughts will eventually return to the normal crap we humans have to deal with. Now don't get me wrong, the next 2 months or so won't be a walk in park and it will take you up to 2 years to recover as much as you will but with our knowledge and support it will be a lot easier to get thru.
I don't care what your weight is you need to eat all of your favorite foods as often as you like. Pizza for breakfast, done deal! Not sure how many teeth you will have left but discuss with your dentist getting the fluoride trays made. He'll explain. Also in your next blood workup make sure they test your TSH levels and keep that number for possible future use. I'm not a fan of getting the PEG tube but if you must then please do not use it UNLESS YOU ABSOLUTELY HAVE TO. There is an alternative avoiding a surgical procedure, that is meant for short term use and that is a nasal tube. I had to have one for 2 weeks and it worked perfectly. Just saying. Do you have a caregiver?
Welcome to this site. Use it often and encourage your caregiver to join as well.
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.
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