#43979 10-14-2004 03:37 AM | Joined: Feb 2004 Posts: 261 Gold Member (200+ posts) | OP  Gold Member (200+ posts)
Joined: Feb 2004 Posts: 261 | I saw my ENT Tuesday morning & he said all looked good - another 30 day check up. I told him I had been experiencing a slight sore throat on right side & pressure or fullness & slight pain in right ear, same as before dx. He ordered a cat scan just to be sure. I'm not freaked out, just a little nervous. Of course all the thoughts of reccurance go through my mind. We'll see what shows up. IF it's back, I'm ready this time & will fight like hell even harder than before 'cause I kinda know what to expect & what might lie ahead. I know I'm future trippin'! Isn't that what makes us human? I wish all good health & happiness! Will check in later.
dx 2/11/04 scca bot T3 IU 2B MO poorly differentiated, margins ok, 3/16 modest, jaw split, over half of tongue removed, free flap from left forearm - finished chemo & rad treatment 5/20/04
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#43980 10-14-2004 03:58 AM | Joined: Feb 2004 Posts: 372 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Feb 2004 Posts: 372 | Hey Erik,
Praying for you as I read this...hang in there and let us know what you find out. It's just so hard not to freak out. I get so nervous about every pain Dan experiences thinking all must be cancer related. It's always good to find out they are not!
Take care and God bless,
Debbie
Debbie - Caregiver for husband, Dan, diagnosed with tongue cancer 7/03. Partial gloss., mod. neck dissections, graft. Recurrence neck tumor 12/03. Radical left neck dissection 12/24/03-unable to get all the tumor. 8 weeks chemo/rad beginning 1/12/04.
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#43981 10-14-2004 04:20 AM | Joined: Nov 2002 Posts: 274 Platinum Member (200+ posts) | | Platinum Member (200+ posts)
Joined: Nov 2002 Posts: 274 | Erik,
Not to minimize your concerns, those are very common post treatment symptoms. I'm over 2 year out and I still get those very pains. I had my 2 year neck CT and surgeon visit yesterday so I hope I'm not eating those words on Monday! Seriously, it sounds like normal "5 month out" pain.
Glenn | | |
#43982 10-14-2004 04:49 AM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2003 Posts: 1,163 | Hello Erik,
You wouldn't be human if you were not concerned. Better to stay calm and think positive about those pains. Sometimes easier said then done.
I am hoping the scan shows nothing and you continue to heal.
Best Wishes, Danny Boy
Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.
Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06
Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
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#43983 10-14-2004 06:15 AM | Joined: Mar 2004 Posts: 76 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Mar 2004 Posts: 76 | Erik,
I pray your results are CLEAR, NORMAL, no sign of recurrence NOW & FOREVER!!
I am so angry at this disease that makes us scared of our own bodies. I am anxiously awaiting my pathology results later this morning.
I am glad that we can support each other here.
Best wishes
Take care
Maria
01/04 SCC of tongue base, T1N0M0
03/04 Partial glossectomy
04/04 Rad
12/04 Throidectomy(follicular cancer)
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#43984 10-14-2004 10:43 AM | Joined: Feb 2004 Posts: 162 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Feb 2004 Posts: 162 | Erik,
I get those types of pain and feelings of fullness off and on ever since my treatment ended. I'm happy to say that they get fewer and farther inbetween the farther out from treatment I get. My docs tell me they are only really interested in things that consistently last two or more weeks, which none of mine ever have. Good luck with the CT scan.
-Brett
Base of Tongue SCC. Stage IV, T1N2bM0. Diagnosed 25 July 2003.
Treated with 6 weeks induction chemo -- Taxol & Carboplatin once a week followed with 30 fractions IMRT, 10 fields per fraction over 6 more weeks. Recurrence October 2005.
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#43985 10-14-2004 04:26 PM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Erik,
I have had virtually no pain in my neck for a while and suddenly a couple of weeks ago it started hurting plus behind my ear and my throat. I have had a PET scan, xray and physical exam but everything came back fine. I still worry a bit about it because it doesn't make sense. I am hoping everything comes back NO CANCER for you.
Ed
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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#43986 10-15-2004 01:32 AM | Joined: Apr 2002 Posts: 80 Likes: 1 Senior Member (75+ posts) | | Senior Member (75+ posts)
Joined: Apr 2002 Posts: 80 Likes: 1 | I am 3 years out never had any scans. Went for thyroid panel check Oct. 12, Dr. put me on synthroid. Also while she was checking she found a swollen lypmh node on the same side I had surgery, so she sent me for ct scan they did blood work which the lady that took the blood couldn't tell me what they were checking for, does anyone here know. I hope to hear from the scan today.Erik I know what you are going thru, your mind just tends to go where it wants to go, and you have no control. When I read all these post I just cann't help but wonder how any others are out there with no help like this. I will say a little prayer right now for good news for you, and may God Bless You.
JOAN
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#43987 10-15-2004 05:15 AM | Joined: Jul 2003 Posts: 382 Likes: 3 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jul 2003 Posts: 382 Likes: 3 | Joan-
We are saying a prayer for you too! The waiting for results is always when the clock seems to run on molasses. I wonder why in 3 years you haven't had regular ct scans. Are you having chest xrays at least annually? - Kris
SCC Stage IV left tonsil neck disection 3/02 radiation finished 6/02 chemo finished 9/02
Stage 2A left breast cancer 3/09, chemo and radiation, finished treatment 2/7/10 -Stage 2 right beast cancer 10/14 chemo and radiation
Every day is still a gift :-)
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#43988 10-15-2004 05:47 AM | Joined: Apr 2002 Posts: 80 Likes: 1 Senior Member (75+ posts) | | Senior Member (75+ posts)
Joined: Apr 2002 Posts: 80 Likes: 1 | Kris I have had check ups with the Dr. that did surgery, he said he could feel anything by the time a ct scan could pick it up. I saw him every month for 6 months then every 3 months then 6months. He has just changed to annually and I did get the chest X-ray annually he never has ordered any scans. After he removed part of my tongue the next week I found nodes that were swollen he tried to tell me not to worry it was from surgry, I had to insist on him doing more surgery. He removed 5 nodes 3 were cancer, so it does upset me a little. Even if this is nothing,
Thanks for the support!
JOAN
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#43989 10-15-2004 09:24 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | Joan
I don't know why some Drs think we know nothing about our own bodies. I will be sending positive thoughts to you... I had an MRI scan before my surgery but no-one in the head and neck clinic here talks about ct scans, so I don't know..
Sunshine... love and hugs
Helen
SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
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#43990 10-15-2004 04:29 PM | Joined: Feb 2004 Posts: 218 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Feb 2004 Posts: 218 | Joan, According to my radiation oncologist at Mass General, a ct scan can pick up anything bigger than 1 mm. in size. I don't know what the comparable size for manual palpitation by a doctor but I would be surprised if it is that small. PET scans can find activity at the cellular level but the problem remains the number of false positives and negatives. The recent edition of CURE magazine had an article on a newer technology which combines pet/ct scans and fuses the images of both technologies. You can read the article online at http://www.curetoday.com/currentissue/departments/housecall/index.html. I don't know if you are being treated at a comprehensive cancer center, but most of the people on this board would recommend making sure that you are. Second, I would suggest getting a second opinion from another institution that has a team-based approach to treating oral cancer (the team should include at least an ENT surgeon, an oncologist and radiation oncologist). You should ask about the scheduling of your follow ups and need for scans. I see my ENT surgeon every six weeks and this will continue at least until the end of the first year post treatment. I see the radiation oncologist every 3 months and have a ct scan each time. Others on the board might want to provide information about their follow up schedules so that you will have more data with which to compare. Best wishes and good luck fighting this nasty disease. - Sheldon
Dx 1/29/04, SCC, T2N0M0
Tx 2/12/04 Surgery, 4/15/04 66 Gy. radiation (36 sessions)
Dx 3/15/2016, SCC, pT1NX
Tx 3/29/16 Surgery
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#43991 10-18-2004 07:33 AM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Sheldon, et al, My scans have been mostly the PET/Ct you mention. As an added bonus, for a mere $15 you can get a CD copy to go. My wife wants one and I was thinking of getting her one for her birthday THURSDAY!  I don't know why she wants one but I know it will scare the hell out of me to look at it!! I am pretty much on the same 6 week schedule you mention but after tomorrow at 10:00 a.m., the doctor will be pushing those out to 8 weeks for a while, the good Lord willing and the creek don't rise. I'm not sure what that means but after hearing it for years...it sounds quite apropos. Ed
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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#43992 10-20-2004 02:18 AM | Joined: Apr 2002 Posts: 80 Likes: 1 Senior Member (75+ posts) | | Senior Member (75+ posts)
Joined: Apr 2002 Posts: 80 Likes: 1 | Everyone thanks for your input. Got results back Monday, they say no cancer but I do have signs of osteoporosis. So it was a yea,boo thing. Hey the yea is better than the boo! I will deal with this also. Guess I am turning 50 this year and falling apart. Never took any medicine before and now I'm getting like my grandmother who carries a Wal-Mart bag with her. What would the drug companies do without us.
JOAN
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#43993 10-20-2004 10:43 AM | Joined: Apr 2004 Posts: 482 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Apr 2004 Posts: 482 | Joan, that is good news on the cancer front. Don't know about osteoporosis, is that a bone thing? But it has to be better than another cancer. So hurrah! Will pray thankful prayers for you.
Regards, Kirk Georgia
Stage IV, T1N2aM0, right tonsil primary, Tonsilectomy 11/03, 35 rad/3cisplatin chemo, right neck dissection 1/04 - 5/04.
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