| Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | HockeyDad
What kelly said. I'm alive even and will be even after getting cancer 3 x because I went to Comprehensive Cancer Center. One bit of practical advice: get yourself a blood test right now to measure your TSH hormone level. You will want the exact number of the TSH so that after treatment, you can compare the TSH levels. The thyroid lab ranges are so large as to be meaningless for an individual (0.40 to 5.00) If you do not have you TSH number now, then you won't be able to get it back to where it needs to be. Maybe you will be lucky and not need thyroid medication but without a pre-treatment number, you will not be able to know. Do not think your oncologist knows what they are talking about in this area. Sad to say, they don't. Word to the wise. Charm
Last edited by Charm2017; 08-30-2012 05:13 PM. Reason: typos
65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Aug 2012 Posts: 214 Likes: 1 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Aug 2012 Posts: 214 Likes: 1 | Thanks for the info. I had surgery that removed the node 8/24. At that time the doctor did not know it was cancer. However it was large and had to go. The biopsy found cancer.
As for the CCC in Cleveland. Its a little confusing. UH Seidman Cancer Center is part of Univerisity hospitols. It is also affiliated with Case CCC. Case CCC is affiliated with The Cleveland Clinic. All of the web sites are linked to each other. I don't know what to think.
Hockey Dad 43, No smoke, Small BOT HPV+16 8/30/12 Biopsy found SCC in Lymph node (removed) 9/19 DX 4a T1N2aM0 10/1 TX 2x Cisplatin 35 IMRT 70 gry (Done 11/15) PEG tube in 11/7. Out 1/4, Back at work 2/4/13 PET 2/13 Clear, 10/16 all Scopes Clear, 4/14 Chest X-ray Clear, 5/14 Abdominal ultrasound Clear, 8 yrs clean!!!
| | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2011 Posts: 805 | We know exactly where you are and really what you are feeling. My husband was 52 when he was dx. We have 3 kids we had adopted 2 years before. They are now 15,13 and 11. It WAS a terrifying time, but we got through it. He was off work for 6 months but has been back since January. The surgery they scheduled is probably to find the primary tumor. That was what they did a couple of days after our PET. They found it was BOT and couldn't see anything in any of the scopes. It was also HPV+ which has a much better prognosis. Hang in there Hockey Dad. You can do this and we will be with you every step of the way. If your wife would like to speak with another caregiver I would be happy to talk to her. It will be overwhelming and her having an outlet is VERY important. I wish I had found this site earlier in our tx, but once I found it I had SO much support. Keep in touch. Blessings, Kathy
Kathy wife/caregiver to: Kevin age:53 Dx 7/15/11 HPV16+ SCC Stage IV BOT/R Non smoker, casual drinker 7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11 PEG placed 9/1/11 Removed 11/8/11 Clear PET 10/12 and 10/13 and ct in 6/14 | | | | Joined: Oct 2011 Posts: 225 "OCF Down Under" Gold Member (200+ posts) | "OCF Down Under" Gold Member (200+ posts) Joined: Oct 2011 Posts: 225 | Hello, just wanted to chime in and wish you the best. You probably feel like you've woken up in some sort of horrific parallel universe - I know that's how my brother felt when diagnosed. But you'll get through it. Post often, because in my experience, no issue is either too big or too small for the forum to offer information and support.
Brother 49yo DX 22/6/11 Tonsil SCC HPV+ Stage IV T4N1(?)M0. Carbo/docetaxel (Taxotere)19/7, 11/8 (with E-tux), 1/9; E-tux 11/8, 25/8, 15/9, 30/9, 14/10, 28/10; IMRT X 35 (70gy tumour;63gy nodes;56gy gen area) 19/9-4/11/11. Clear PET scan 1/2/12. 1 and 2 year post treatment checks good. | | | | 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! Sorry you are here but glad you found the very best place for up to date correct medical info and support. I am another member who suggests heading to a cancer center for another opinion. Surgeons cut and if they arent sure whats going on then you dont want things removed that shouldnt be. Its just a good plan to get checked out by a facility which sees many cases of oral cancer and a whole team of professionals will be following the NCI guidelines to make you well. Cancer Centers At this point you should be seeing a dentist to make sure your teeth are in good shape. They should make a mold just in case you will do radiation, you will need flouride trays made. Get the full blood work done including thyroid. Many of us (including myself) have had their thyroids crap out after going thru cancer treatments. Right now, eat all your favorites and make sure you hit up all your favorite restaurants. Your sense of taste will change for a while and swallowing may become difficult so you want to get all your cravings in now. Every person who offers to help you , write down their name and number and let them know you will call on them when the time comes. This battle is not easy but with help it can be much easier on everyone. Dont be afraid or too proud to ask and accept help from friends and relatives. Since you mentioned Cleveland, I will be there next week as the speaker for the Cleveland oral cancer awareness walk. It would be great if you and your family would come out. You would get to meet other survivors and get some important info about oral cancer. Plus, oral cancer survivors are free! Cleveland walk
Last edited by ChristineB; 08-30-2012 07:04 PM.
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: 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 | HD, I know we're throwing a lot at you but this is a critical time and believe me different docs do different things when it comes to this cancer and not all are necessary and some have unnecessary life altering consequenses. One of these is unnecessary surgery so that's why we are harping on getting a 2nd opinion from a CCC as they see 100's of your presentations a year vs a typical ENT seeing maybe less than 10. Your presentation is VERY common in the oral cancer world. Finding the painless lump is very often the first clue that we had this cancer growing in our body and because it has already spread from the Primary to a node, it's already Staged a III so like me, you are very fortunate that your ENT persisted otherwise the next spread would have been deadly. Your presentation will probably result in your cancer being positive for HPV which is good in that studies have concluded that HPV+ SCC responds better to existing Tx than HPV- SCC and therefore that chances of a recurrence is less. What they do want to do right now is to try and find your Primary. Here's my short story. One day, while shaving, I found a totally painless lump in my neck. Totally healthy, never been sick a day in my life except colds, etc. Riding my bike 100 miles a week. Exercise and health nut. I ignored it. A month later it was still there, no bigger? and still painless but I showed it to my wife. She called me every name in the latin book. Got me an appt that day with a doc. He said "don't know what it is BUT it needs to stay." Not satisfied she got me another appt with a neck surgeon. He said "don't know what it is BUT it needs to come out." Wife happy, me not. I told my wife I needed another opinion. Again the latin words poured from her sweet lips. Went to see my neighbor, a MO, who put me on antibiotics. After 2 weeks I came back and HE SHOOK MY HAND AND SAID "CONGRATUATIONS YOU DON"T HAVE CANCER!!" Me really happy, wife very quiet. Not satisfied my wife tricked me into taking her Mom to another ENT who after seeing her Mom turned to me and said I understand I need to look at that lump in your neck. He did an FNA. Two weeks later told me I had SCC and after performing a radical neck dissection I would have chemo and rad and he gave me a 60% chance of surviving 5 years. I fainted. He also told me he would get me in at Moffitt. While waiting for Moffitt, a CCC, I went back to my neighbor MO who said only a partial neck dissection followed by chemo/rad and he gave me a 70% chance. Got in at Moffitt and they said NO surgery just chemo/rad and a 90% survival chance. Who you gonna use? lol Moffitt did put me under to find my primary and luckily it was the first spot they looked at, my BOT. Moral of story, just don't take the first opinion thrown at you and listen to your wife!
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: 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 | ditto what everyone said and welcome, youR ENT was on the ball and acting in your best interest by booking the surgical date post pet - he wanted to make sure he had the available time. Welcome and best of luck. You'll get through it!
Last edited by Cheryld; 08-31-2012 07:38 AM.
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: Aug 2012 Posts: 214 Likes: 1 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Aug 2012 Posts: 214 Likes: 1 | Thanks David 2.
Ours situation looks similar. He already removed the big lymph node. He did not remove anything else. I have a slight discoloration on the left side of tomgue(same side node). 1/4" high 1 in long. But tongues are weird looking any way. Could just be where I bite it. ENT did not think it looked suspicious. He does have several other Oral cancer case right now.
PET Scheduled for Wednesday 5th. He said we have to stage it. Follow up surgery 12th. Biopsy what he sees. Dig at the tonsils (and I still have mine)and try to find something.
Is this fast enough? When do I contact other parties for second opinions?
Right now all I have is Clear CAT, and Biopsy Left lymph node positive SCC. No primary not PET.
Hockey Dad 43, No smoke, Small BOT HPV+16 8/30/12 Biopsy found SCC in Lymph node (removed) 9/19 DX 4a T1N2aM0 10/1 TX 2x Cisplatin 35 IMRT 70 gry (Done 11/15) PEG tube in 11/7. Out 1/4, Back at work 2/4/13 PET 2/13 Clear, 10/16 all Scopes Clear, 4/14 Chest X-ray Clear, 5/14 Abdominal ultrasound Clear, 8 yrs clean!!!
| | | | Joined: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 618 | You want a second opinion ASAP. Knowlage is everything in this fight.
Kelly Male 48, SCC (Soft Palet) Rt., Stage 1, T3n0m0, Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09 04-20-10 NED 8-11 recurrence, node rt. neck N2b 10-11 33 IMRT w/chemo wkly 3-12-12 PET - residual cancer 4-12 5 treatments with Cyberknife & Erbitux 6-19-12 Pet scan CLEAR 12-3-12 PET - CLEAR
| | | | Joined: Aug 2012 Posts: 214 Likes: 1 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Aug 2012 Posts: 214 Likes: 1 | I found two cancer treatment center in Cleveland. Cleveland Clinic Taussig Cancer Institued and University Hosipital Seidmen Cancer Center. Both are affiliated with Case western University CCC. My ENT is sending my stuff to UH Seidmen center.
Has any one use these facilities before? I would like to look at both.
Last edited by Hockeydad; 09-02-2012 02:13 PM.
Hockey Dad 43, No smoke, Small BOT HPV+16 8/30/12 Biopsy found SCC in Lymph node (removed) 9/19 DX 4a T1N2aM0 10/1 TX 2x Cisplatin 35 IMRT 70 gry (Done 11/15) PEG tube in 11/7. Out 1/4, Back at work 2/4/13 PET 2/13 Clear, 10/16 all Scopes Clear, 4/14 Chest X-ray Clear, 5/14 Abdominal ultrasound Clear, 8 yrs clean!!!
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