| | Joined: Oct 2008 Posts: 37 Contributing Member (25+ posts) | OP  Contributing Member (25+ posts)
Joined: Oct 2008 Posts: 37 | What is the standard menu for surviellance after treatment. My "team" has me being seen every 4 months for an oral inspection and head and neck CT. I finished treatment in July, was seen 11/18/09 and told I was cancer free. on 11/22/09 I noticed a white spot on my tongue, had it biopsied and it is invasive cancer.
Mike
age 53 TxN2bM0 stage IV tongue and 2 nodes, non smoker, non-drinker, heavy plastic wrap exposure 25+ years, 2 surgeries, neck dissection, 60 GY IMRT+ cisplatin X5 completed 07/09, new primary on tongue 11/09. | | | | | 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 | At first I was seen every 3 months; then 4, and now every 6 months. I had 3 scans early on until I got an all clear. Since then only the visual scope.
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: Jan 2009 Posts: 476 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jan 2009 Posts: 476 | My husband finished treatments April 15th. He saw the RO, MO and ENT once a month for the first three months after treatment ended. He now sees all three doctors every other month. He had a CT Scan with IV contrast of his neck and chest in August - all clear. He is scheduled to have another CT Scan the end of this month. His ENT and RO "scope" him every time he sees them. After January he will spread out his doctor visits to every three months. It makes me feel better that they are keeping such a close eye on him. I'm so sorry to hear about your recurrance.
Wanda (47) caregiver to husband John (56) age at diag.(2009)
1-13-09 diagnosed Stage IV BOT SCC (HPV+)
2-12-09 PEG placed, 7-6-09 removed
Cisplatin 7 weeks, 7 weeks (35) IMRT
4-15-09 - treatment completed
8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear
4-2013 - HBO (30 dives) tooth extraction
10-2019 - tooth extraction, HBO (10 dives)
11-2019 - Left lateral tongue SCC - Stage 2
| | | | | Joined: Oct 2008 Posts: 37 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Oct 2008 Posts: 37 | When you guys say "scope" are you refering to a specific instrument or do you mean a visual inspection?
Thanks,
Mike
age 53 TxN2bM0 stage IV tongue and 2 nodes, non smoker, non-drinker, heavy plastic wrap exposure 25+ years, 2 surgeries, neck dissection, 60 GY IMRT+ cisplatin X5 completed 07/09, new primary on tongue 11/09. | | | | | 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 | A scope is where your doc checks your throat with a thin tube. It has a light on the tip. Not sure if its different for more normal patients. But, since I have trismus, my doc goes up my nose thru my sinuses then down my throat. Doesnt make for a fun visit. Its amazing the things you can get used to when you go thru OC.
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 | Some have a camera at the tip and my surgeon who found my Primary and I see every 6 months, always scopes me with one and I get to watch on a monitor mounted on the exam wall. All looks the same to me though!!
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: 595 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2007 Posts: 595 | I saw my Team evry month for the 1st 6 months and them every two months for 6 months and then every three-four months and now 2 years post Tx I see them every five to six months and get(got) scpoed every visit. My 1st PET was nine months Post Tx and I will get one annually and a chest X-ray annually. Hope this helps. Semper-Fi Bob
Bob age 57, non smoker,non drinker, ended treatment on 11 Nov 2007 and started back to work on 29 Nov 2007. Veterans Day 2012 the Battle was lowered, folded, Taps was played and the Flag buried as I am know a 5 year survivor. Semper-FI !!!
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