#54931 05-21-2004 04:34 PM | Joined: Nov 2002 Posts: 274 Platinum Member (200+ posts) |  Platinum Member (200+ posts)
Joined: Nov 2002 Posts: 274 | I have come to learn that these false positive post are the most emotionally destructive of all. Clearly, PET scans have been patient driven. We read about them and push our physicians to do them and then we minimize their reliability when they go bad. I hate to say this, mine was on the money! I have lung mets and had a wedge resection on 5/6/04 and my next step is up in the air. I have avoided posting here for many reasons, most prominently being my heretofore poster child recovery. The most disturbing aspect of my PET scan results was the ultimate realization that they were accurate. I had all the doctors, not involved in my pet scan, telling me that they are often wrong when what I needed was guidance as to what to do now that I may have a reoccurrence. Dan, the other shoe may have dropped here and you need to clear your head and decide where to go. I have elected to fight. I agree that it aint cancer till the biopsy but I think you will be better served if you assume it is, and be happy if it aint! You have displayed a remarkable dedication to this forum and when a supporter like you may be facing a reoccurrence it is doubly unsettling. Ground yourself like you did when you dealt the initial diagnosis and get on with the fight! | | |
#54932 05-21-2004 08:26 PM | Joined: Oct 2016 Posts: 284 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Oct 2016 Posts: 284 | Danny,
I had to go back and read and re-read your posts. My heart aches for you. At this point it is just a scan and my mom's PET/CT scan in October showed absolutely no cancer and then in Novemeber there was a recurrance. I don't know how I feel about those things......Is there anything that the doctors feel when they palpatate the area and I'm confused as to why they are already giving you options for chemo etc without a biopsy?
At any rate I am praying so hard for you right now. You are such a warm hearted man and have been such an inspiration to so many. My baby Keeley and I will be keeping you at the top of our list in our nightly prayers.
Hugs & Prayers,
Dani
Originally joined OCF on 12/12/03 as DaniO or Danijams
Dani-Mom SCC BOT & floor of mouth surgery-recur then surgery/rads & chemo completed 3/04
surgery 11/06 to remove dead bone & replace jaw w/ leg bone & titanium plate
| | |
#54933 05-21-2004 11:12 PM | Joined: Nov 2002 Posts: 541 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Nov 2002 Posts: 541 | Hi Dan, by judging from the high number of posts in response to yours within a day can simply reflect how much you are cared about by others. I am sure you won't disappoint us and will do your best to fight. Things move so fast that I share the same doubt as Dani: how can your doctors decide on treatment so early when the diagnosis is not yet confirmed? Take care and be strong. All your friends are standing by your side.
Karen.
Karen stage 4B (T3N3M0)tonsil cancer diagnosed in 9/2001.Concurrent chemo-radiation treatment ( XRT x 48 /Cisplatin x 4) ended in 12/01. Have been in remission ever since.
| | |
#54934 05-22-2004 08:29 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Danny, My thoughts and prayers are with you, Keep Looking up!!!! Carol
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
| | |
#54935 05-22-2004 09:16 AM | Joined: Mar 2003 Posts: 62 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Mar 2003 Posts: 62 | Dan, My thoughts and prayers are also with you.
David | | |
#54936 05-22-2004 10:24 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 | Glen,
It is good to see you back. I have been thinking of you and hoping for the best for you. I am sorry that the final news turned out lung mets for you. I will lift you up in prayer and I hope for the best possible course of treatment for you right now, too. No matter what, never give up the fight! We are in your corner doing what we can to support 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
| | |
#54937 05-22-2004 11:58 AM | Joined: Mar 2004 Posts: 164 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Mar 2004 Posts: 164 | Dan,
I think the answer to Karen's question about deciding on treatment is based upon you clinical history. I had many physicians tell me after my chest CT that based upon my history there was little doubt about what was in my lungs. They only did the biopsies to prove themselves wrong. I think your physicians may be taking the same approach. I think they would love nothing better than to be wrong in this case. I would love it too, but I think you probably, realize as I did, it's doubtful. I will pray for a miracle and hope for the best.
I am still stunned about your recent posts. I was on the site several times yesterday and these were posted after I checked the site. I am so sorry you are having to face this enemy again.
I care about you!!!
Lynn
Stage 3, N0, M0 oral tongue cancer survivor, 85-90% of tongue removed, neck disection, left tonsil removed, chemo/radiation treatments, surgery 11/03, raditation ended 1/04, lung mets discovered 4/04,
| | |
#54938 05-22-2004 04:01 PM | Joined: Feb 2004 Posts: 372 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Feb 2004 Posts: 372 | Hey Danny,
Hadn't been on the board for a little while, and obviously was heartbroken with your news. I pray for you everyday and will continue. May God be with you and your family and may He heal you from any more cancer. I struggle daily with fear and you are such an inspiration to me in this daily fight. Stay strong, and know we are with you in spirit!
Deb
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.
| | |
#54939 05-22-2004 04:19 PM | Joined: Feb 2004 Posts: 372 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Feb 2004 Posts: 372 | Dan,
I posted a few minutes ago here but can't see it yet, so I will post to you again.
I haven't been on the board much, and was so sad to see your latest news. Please know that you are in my prayers everyday and I will lift you and your family up that it isn't more cancer and that God will comfort you during this most difficult time. Keep us posted!
Deb
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.
| | |
#54940 05-22-2004 04:30 PM | Joined: Apr 2003 Posts: 148 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Apr 2003 Posts: 148 | We're sending you prayers and hugs from Kansas, Dan.
Lisa
Lisa
SCC of Tongue Stage 1 (T1,N0,M0)
partial glossectomy,modified neck dissection 4/14/03
| | |
| Forums23 Topics18,170 Posts196,933 Members13,106 | | Most Online458
Jan 16th, 2020 | | |
|
