#88069 01-14-2009 07:58 PM | Joined: Nov 2008 Posts: 3 Member | OP  Member
Joined: Nov 2008 Posts: 3 | My husband's results showed a suspect spot in the original area where the tonsil [font:Comic Sans MS] was surgically removed, treated with cisplatin, and 36 days of radiation. His last radiation tx was 10/8 and he has an MRI this weekend scheduled. How concerned should he/we be on this. He is still in fairly acute pain and the Dr. seems to believe there is a 30-50% chance he is still healing and that this result is not too alarming. Any feedback?[/font]
Husband-diagnosed shortly after his 50TH Birthday celebration-Stage 3 SCC, T3N1M0, R tonsil, radical neck disection 6/25/2008, 1 positive node, cisplatin x2, and radiation (36), completed therapy 10/8/2008. Non-smoker, occasional drinker, all around GREAT guy!
| | | | | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2003 Posts: 1,384 Likes: 1 | My doctor would not even consider a pet scan this close after treatment. (truth is I have never had one). The results are often suspect because normal healing processes and/or infection will show up. Relax (some) til more time has passed.
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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Joined: Mar 2002 Posts: 4,918 Likes: 66 | Too early for a PET that means anything in the immediate area of the primary. Useful for looking at things elsewhere, lungs etc. since this is a head to groin scan. PET's are not designed to find cancer. They find cells that are burning sugar faster than normal. While this is typical of caner cells, it is also typical of healing cells, inflammation from injury and so on. I would not get excited about any elevated SUV from an early scan unless they are in other areas of the body. Even then, rule out joints. I'm old and beat up. I've never had a PET that didn't light up my hips..... Played hard, and now have the chronic inflammation and on going (never to end) healing process there.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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Joined: Nov 2008 Posts: 3 | Thank you very much for the feedback. My husband feels a little better about this now. The rest of the PET looked clear as well which was very positive news. What an emotional roller coaster!
Husband-diagnosed shortly after his 50TH Birthday celebration-Stage 3 SCC, T3N1M0, R tonsil, radical neck disection 6/25/2008, 1 positive node, cisplatin x2, and radiation (36), completed therapy 10/8/2008. Non-smoker, occasional drinker, all around GREAT guy!
| | | | | 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 | ALA:
PET scans show alot of false positives as was previously explained. Its happened to me. Healing seems to take forever and its a day by day thing. I noticed something on your profile, do you know what stage your husband's cancer is?
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 | ALA,
Tell your husband that his recovery, like the majority of ours, will take 1 to 2 years or maybe longer so just don't let him be impatient. Each of us can respond differently but just about everything that he will experience is NORMAL. We are always here to help so don't hesitate to ask this site anything.
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: Nov 2008 Posts: 3 Member | | OP Member
Joined: Nov 2008 Posts: 3 |
My husband's cancer is stage III from what things indicate. And, I am looking forward to him seeing these replies tonight as he is still so sore, lost 50 lbs, but had a big cushion and is probably at his ideal weight now. But, is trying to eat real foods and gets discouraged. He's back on the lidocaine 2% rinse that seems to provide some relief prior to eating. Thanks for the feedback!
Husband-diagnosed shortly after his 50TH Birthday celebration-Stage 3 SCC, T3N1M0, R tonsil, radical neck disection 6/25/2008, 1 positive node, cisplatin x2, and radiation (36), completed therapy 10/8/2008. Non-smoker, occasional drinker, all around GREAT guy!
| | | | | Joined: Mar 2006 Posts: 114 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Mar 2006 Posts: 114 | I also had a 'false positive' on a PET scan about 4 months after I completed my first round of treatment (IMRT X 35 and chemo). The PET indicated FDG uptake in the tongue where my tumor had been. A subsequent biopsy revealed there was no recurrent cancer there, it was just an area that was still healing. As mentioned by others, areas that are actively trying to heal can also light up a PET scan just like cancer does.
-Steve
Age 41 - Stage 2 SCC tongue Dx 2/06. Cisplatin x3, IMRT x35. Mets to neck node discovered 7/07. RND 40 nodes removed, margins not clear. Cisplatin, Taxotere, 5-FU Fall 07, then IMXT/Erbitux for 7 wks. Inoperable mets to both lungs and pleura Dx Oct'08. 4 cycles Carboplatin, Erbitux, 5-FU so far.
| | | | | 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 | Eating after treatments can be a big challenge. One day something tastes good the next day it is awful. Everytime you think that you have improved then its a step backwards again. Seems to take forever to get somewhat back to normal or at least to a point where you feel kinda ok most of the day. Hang in there it does take a very long time to relearn to eat again. If something tastes bad now wait a couple weeks and retry it. I found prior to eating that drinking hot chocolate or hot tea will help loosen up my throat and make swallowing easier. A few easy foods are canned peaches, smooth yogurt, pancakes or light french toast with lots of butter and syrup, french onion soup (watch out for the cheese he can choke on that), canned carrots or applesauce. My nutritionist also suggested that I try baby food but I was too stubborn to do it.
Please update your profile when you can to reflect Stage 3.
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: Jun 2007 Posts: 595 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2007 Posts: 595 | Ala, Tell your husband to hang in there, with time the taste comes back and he will start feeling better and both of you will get use to the "new normal" which is differnt for everyone here!! 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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