#54827 05-16-2004 05:03 PM | Joined: Dec 2003 Posts: 207 Platinum Member (200+ posts) | OP  Platinum Member (200+ posts)
Joined: Dec 2003 Posts: 207 | Hello all, tomorrow morning I have my first P.E.T. scan since I completed radiation in January. Wow, has it really been four months?
I originally had the test scheduled for July but my ENT said to go ahead and do it now "for my peace of mind." Well, right now I can tell you that my mind is OK but my stomach is in knots. I thought I was going to lose my lunch earlier today... And my wife is out of town... argg...
Like the day I originally found out I had cancer, this is a big benchmark. Either it's going to come back negative, and I'll continue the slow but upward healing process or it'll come back positive and... I don't even want to go there...
Here's hoping/praying I can stay completely still for 30 minutes straight tomorrow a.m... and that the results will come back positively negative...
Tongue cancer (SCC), diagnosed Oct. 2003 (T2 N0 M0). Surgery to remove tumor. IMRT Radiation 30x in Dec 2003 - Jan. 2004. Recurrence lymph node - radical neck dissection June 2004. Second round of rad/chemo treatments ended Sept. 2004.
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#54828 05-16-2004 09:44 PM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | Good wishes are on thier way from me to you.. tell tham you need the results NOW.. I hate waiting for results..
Let us know as soon as possble
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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#54829 05-17-2004 04:21 AM | Joined: Mar 2004 Posts: 417 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Mar 2004 Posts: 417 | Thoughts and prayers for the news you want to here, "Cancer free"......
Stage 3, T3,N1,M0,SCC, Base of Tongue. No Surgery, Radiationx39, Chemo, Taxol & Carboplatin Weekly 8 Treatments 2004. Age 60. Recurrence 2/06, SCC, Chest & Neck (Sub clavean), Remission 8/06. Recurrence SCC 12/10/06 Chest.
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#54830 05-17-2004 04:49 AM | Joined: Mar 2004 Posts: 164 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Mar 2004 Posts: 164 | I hope the PET Scan comes back with good results for you, Helen. I would love to hear some good news from you very soon.
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,
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#54831 05-17-2004 06:17 AM | Joined: Feb 2004 Posts: 162 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Feb 2004 Posts: 162 | Hoping for good news.
-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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#54832 05-17-2004 07:35 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 | I remember the tech scolding me because I coughed twice during the MRI and she had to start over. I was worried about choking to death on the dreaded brown strings of goo and she was worried about having to start over. I asked her if she was paid by the patient or by the hour. She didn't have a sense of humor, no surprise to me.
I hope the PET scan went well 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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#54833 05-17-2004 07:38 AM | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 52 | Remember that the PET will pick up lots of things besides cancer, specifically areas that are metabolizing sugars more than the rest of your body. Sometimes in areas where healing is taking place, especially so close to treatment as you are, you MIGHT show something positive there which is not cancer. This will of course need to be explored further, and will make your nerves and blood pressure numbers shambles. Hopefully they will give you a PET/CT fusion scan which is significantly more accurate than the PET alone. Best wishes for no surprises........
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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#54834 05-17-2004 09:44 AM | Joined: Feb 2004 Posts: 372 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Feb 2004 Posts: 372 | AzTarHeel,
Prayers are going up for you for great, negative results. I know how unsettling this time is for you...may God give you peace as you test and wait!
Take care,
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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#54835 05-17-2004 10:04 AM | Joined: Oct 2016 Posts: 284 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Oct 2016 Posts: 284 | AzTarHeel,
Here's all my prayers for a negative scan. I'm sure everything will be just fine!
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
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#54836 05-17-2004 01:19 PM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2003 Posts: 1,163 | Good Luck AzTarHeel,
As Brian stated the combo PET/CAT scan will pick up everything. My 1st scan showed activity in the surgical bed. They couldn't say what it was as it was my first pre=treatment scan. I am having the second scan this Wed. 5/19. They will be able to compare the two scans and give me a more accurate Dx. I am sending some good vibes your way. Hope all is well!!!!
Your Friend, Dan
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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#54837 05-17-2004 05:40 PM | Joined: Apr 2004 Posts: 482 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Apr 2004 Posts: 482 | AZTARHEEL:My first test results after rad/chemo came back with suspicious results. This 6 weeks after treatment. Went in and did the surgery and just got the report 3 days ago (Friday, 5/14). No cancer. Totally cancer free. Cured. Now, I could have spent that time between suspicious results and no cancer all worried, or doing what I normally do and wait for the final results. In neither case would the outcome have been any different. So don't worry. Let the results fall where they may and do what you have to do. Worrying won't change anything and you'll have to do whatever you need to do anyhow. My prayers go with you that the end result will be the same for you as for me. Cancer free.Regards, Kirk Georgia.
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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#54838 05-17-2004 07:36 PM | Joined: Dec 2003 Posts: 207 Platinum Member (200+ posts) | | OP Platinum Member (200+ posts)
Joined: Dec 2003 Posts: 207 | Thanks all, they told me it would be 24-48 hours before I know the results... arggg...
Actually, I'm prepared for about anything... I was pretty darn relaxed during the scan, thankfully... I actually shut my eyes for about 10 minutes and just zoned out...
I've heard enough about false positives so close to the end of treatments that this is in the back of my head if anything does come back suspicious...Will keep you posted when I hear the results... Thanks again for the prayers and "vibes"
Eric
Tongue cancer (SCC), diagnosed Oct. 2003 (T2 N0 M0). Surgery to remove tumor. IMRT Radiation 30x in Dec 2003 - Jan. 2004. Recurrence lymph node - radical neck dissection June 2004. Second round of rad/chemo treatments ended Sept. 2004.
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#54839 05-18-2004 05:50 AM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | Hi Eric,
Don't get your expectations up - you may more disturbed after your scan for all of the reasons that Brian outlined. None of my MRI's gave me ANY piece of mind, actually exacerbating my fears. It all turned out to be NOTHING and I hope and pray that yours will as well.
Maybe this is why the NCCN guidelines don't recommend any post Tx scans except for an annual chest x-ray?!
Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#54840 05-18-2004 08:46 AM | Joined: Mar 2004 Posts: 164 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Mar 2004 Posts: 164 | Eric,
I also would like to caution you about PET. PET is notorious for giving false positives and false negatives for cancer. It's a technology that I believe will get better like CT, but for now it's just a bit dicey. Try not to worry too much.
I rooting for 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,
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#54841 05-19-2004 06:44 AM | Joined: Dec 2003 Posts: 207 Platinum Member (200+ posts) | | OP Platinum Member (200+ posts)
Joined: Dec 2003 Posts: 207 | To those of you who warned me of "false positives" I am hoping that you are right...
I got my results back this morning, and there are two "small suspicious" areas... one in a lymph node in the area that was treated with radiation... the other on the other side near my right molar...
The doctor of course said not to panic, that it could be inflamation, an infection or something like else benign. But it's suspicious enough they want me to come back ASAP for an MRI, which they say will help them get a better picture...
So, as Brian predicted, my nerves are in shambles. But as so many others have said, "It ain't cancer till they say it's cancer." so I'm hanging my hat on that big time right now...
Will keep everyone posted as we go along... Once again glad that this board exists...
Peace,
Eric
Tongue cancer (SCC), diagnosed Oct. 2003 (T2 N0 M0). Surgery to remove tumor. IMRT Radiation 30x in Dec 2003 - Jan. 2004. Recurrence lymph node - radical neck dissection June 2004. Second round of rad/chemo treatments ended Sept. 2004.
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#54842 05-19-2004 07:06 AM | Joined: Jul 2003 Posts: 382 Likes: 3 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jul 2003 Posts: 382 Likes: 3 | Eric-
Yep, it ain't cancer till they say it's cancer!! Keep looking up and know that there is one more out there praying for you and your shambled nerves!! With ya - 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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#54843 05-19-2004 07:32 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | Eric
Think some of our treatment should involve a shrink.. to take care of all these overstreached nerves of ours.. try to stay positive..tell them ASAP means NOW.. keep us posted
prayers, 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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#54844 05-19-2004 07:41 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 | Eric,
I had a "large suspicious area" in the same spot as the largest lymph node that was cancerous and the doctor even told me because it felt so hard he was pretty sure it would require a neck dissection and most likely indicated a recurrence. It went away on the next exam/scan. Please try and be positive and it ain't cancer till the pathologist proves it.
My thoughts and prayers are with you and if there was any way I could take the burden from you, I would.
Calmness and hugs your way.
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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#54845 05-19-2004 07:51 AM | Joined: Dec 2003 Posts: 207 Platinum Member (200+ posts) | | OP Platinum Member (200+ posts)
Joined: Dec 2003 Posts: 207 | Thanks everyone for the thoughtful and quick responses... I feel a lot calmer now than I did at first...
Tongue cancer (SCC), diagnosed Oct. 2003 (T2 N0 M0). Surgery to remove tumor. IMRT Radiation 30x in Dec 2003 - Jan. 2004. Recurrence lymph node - radical neck dissection June 2004. Second round of rad/chemo treatments ended Sept. 2004.
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#54846 05-19-2004 09:32 AM | Joined: Mar 2004 Posts: 164 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Mar 2004 Posts: 164 | Eric,
Just to calm you down a bit more. I also had a "hot" lymph node on my PET scan. They did a sono-guided needle biopsy and it was negative for cancer.
If the MRI is a better test, I wonder why they didn't use it to begin with? Call me cynical, but I think PET generates so much revenue for the owners that it is occasionally overused.
Try to rest as easy as you can.
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,
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#54847 05-19-2004 09:41 AM | Joined: Dec 2003 Posts: 207 Platinum Member (200+ posts) | | OP Platinum Member (200+ posts)
Joined: Dec 2003 Posts: 207 | Great question, Lynn... I believe I will ask my docs this next time we're in touch (which should be soon, since ASAP means now)...
Tongue cancer (SCC), diagnosed Oct. 2003 (T2 N0 M0). Surgery to remove tumor. IMRT Radiation 30x in Dec 2003 - Jan. 2004. Recurrence lymph node - radical neck dissection June 2004. Second round of rad/chemo treatments ended Sept. 2004.
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#54848 05-19-2004 01:26 PM | Joined: Dec 2003 Posts: 207 Platinum Member (200+ posts) | | OP Platinum Member (200+ posts)
Joined: Dec 2003 Posts: 207 | OK, here's the latest scoop -- I have my MRI scheduled for tomorrow morning at 9 a.m. in Flagstaff (about an hour away from here)... I was feeling OK about things until my ENT talked to my wife... He sounded "very concerned" after reading the PET report...
He hasn't actually seen the scan, however, just read the report... He's worried, I think, that since I'm a young guy that doesn't drink or smoke, that this may be an aggressive form that doesn't respond so well to treatment... How's that for making your day... OK, so now I'm officially freaking out...
Any and all prayers are appreciated... Will keep everyone updated... Thanks for all the support so far... You guys are awesome...
Eric
Tongue cancer (SCC), diagnosed Oct. 2003 (T2 N0 M0). Surgery to remove tumor. IMRT Radiation 30x in Dec 2003 - Jan. 2004. Recurrence lymph node - radical neck dissection June 2004. Second round of rad/chemo treatments ended Sept. 2004.
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#54849 05-16-2004 09:44 PM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | Good wishes are on thier way from me to you.. tell tham you need the results NOW.. I hate waiting for results..
Let us know as soon as possble
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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#54850 05-17-2004 04:21 AM | Joined: Mar 2004 Posts: 417 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Mar 2004 Posts: 417 | Thoughts and prayers for the news you want to here, "Cancer free"......
Stage 3, T3,N1,M0,SCC, Base of Tongue. No Surgery, Radiationx39, Chemo, Taxol & Carboplatin Weekly 8 Treatments 2004. Age 60. Recurrence 2/06, SCC, Chest & Neck (Sub clavean), Remission 8/06. Recurrence SCC 12/10/06 Chest.
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#54851 05-17-2004 04:49 AM | Joined: Mar 2004 Posts: 164 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Mar 2004 Posts: 164 | I hope the PET Scan comes back with good results for you, Helen. I would love to hear some good news from you very soon.
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,
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#54852 05-17-2004 06:17 AM | Joined: Feb 2004 Posts: 162 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Feb 2004 Posts: 162 | Hoping for good news.
-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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#54853 05-17-2004 07:35 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 | I remember the tech scolding me because I coughed twice during the MRI and she had to start over. I was worried about choking to death on the dreaded brown strings of goo and she was worried about having to start over. I asked her if she was paid by the patient or by the hour. She didn't have a sense of humor, no surprise to me.
I hope the PET scan went well 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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#54854 05-17-2004 07:38 AM | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 52 | Remember that the PET will pick up lots of things besides cancer, specifically areas that are metabolizing sugars more than the rest of your body. Sometimes in areas where healing is taking place, especially so close to treatment as you are, you MIGHT show something positive there which is not cancer. This will of course need to be explored further, and will make your nerves and blood pressure numbers shambles. Hopefully they will give you a PET/CT fusion scan which is significantly more accurate than the PET alone. Best wishes for no surprises........
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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#54855 05-17-2004 09:44 AM | Joined: Feb 2004 Posts: 372 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Feb 2004 Posts: 372 | AzTarHeel,
Prayers are going up for you for great, negative results. I know how unsettling this time is for you...may God give you peace as you test and wait!
Take care,
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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#54856 05-17-2004 10:04 AM | Joined: Oct 2016 Posts: 284 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Oct 2016 Posts: 284 | AzTarHeel,
Here's all my prayers for a negative scan. I'm sure everything will be just fine!
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
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#54857 05-17-2004 01:19 PM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2003 Posts: 1,163 | Good Luck AzTarHeel,
As Brian stated the combo PET/CAT scan will pick up everything. My 1st scan showed activity in the surgical bed. They couldn't say what it was as it was my first pre=treatment scan. I am having the second scan this Wed. 5/19. They will be able to compare the two scans and give me a more accurate Dx. I am sending some good vibes your way. Hope all is well!!!!
Your Friend, Dan
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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#54858 05-17-2004 05:40 PM | Joined: Apr 2004 Posts: 482 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Apr 2004 Posts: 482 | AZTARHEEL:My first test results after rad/chemo came back with suspicious results. This 6 weeks after treatment. Went in and did the surgery and just got the report 3 days ago (Friday, 5/14). No cancer. Totally cancer free. Cured. Now, I could have spent that time between suspicious results and no cancer all worried, or doing what I normally do and wait for the final results. In neither case would the outcome have been any different. So don't worry. Let the results fall where they may and do what you have to do. Worrying won't change anything and you'll have to do whatever you need to do anyhow. My prayers go with you that the end result will be the same for you as for me. Cancer free.Regards, Kirk Georgia.
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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#54859 05-17-2004 07:36 PM | Joined: Dec 2003 Posts: 207 Platinum Member (200+ posts) | | OP Platinum Member (200+ posts)
Joined: Dec 2003 Posts: 207 | Thanks all, they told me it would be 24-48 hours before I know the results... arggg...
Actually, I'm prepared for about anything... I was pretty darn relaxed during the scan, thankfully... I actually shut my eyes for about 10 minutes and just zoned out...
I've heard enough about false positives so close to the end of treatments that this is in the back of my head if anything does come back suspicious...Will keep you posted when I hear the results... Thanks again for the prayers and "vibes"
Eric
Tongue cancer (SCC), diagnosed Oct. 2003 (T2 N0 M0). Surgery to remove tumor. IMRT Radiation 30x in Dec 2003 - Jan. 2004. Recurrence lymph node - radical neck dissection June 2004. Second round of rad/chemo treatments ended Sept. 2004.
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#54860 05-18-2004 05:50 AM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | Hi Eric,
Don't get your expectations up - you may more disturbed after your scan for all of the reasons that Brian outlined. None of my MRI's gave me ANY piece of mind, actually exacerbating my fears. It all turned out to be NOTHING and I hope and pray that yours will as well.
Maybe this is why the NCCN guidelines don't recommend any post Tx scans except for an annual chest x-ray?!
Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#54861 05-18-2004 08:46 AM | Joined: Mar 2004 Posts: 164 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Mar 2004 Posts: 164 | Eric,
I also would like to caution you about PET. PET is notorious for giving false positives and false negatives for cancer. It's a technology that I believe will get better like CT, but for now it's just a bit dicey. Try not to worry too much.
I rooting for 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,
| | |
#54862 05-19-2004 06:44 AM | Joined: Dec 2003 Posts: 207 Platinum Member (200+ posts) | | OP Platinum Member (200+ posts)
Joined: Dec 2003 Posts: 207 | To those of you who warned me of "false positives" I am hoping that you are right...
I got my results back this morning, and there are two "small suspicious" areas... one in a lymph node in the area that was treated with radiation... the other on the other side near my right molar...
The doctor of course said not to panic, that it could be inflamation, an infection or something like else benign. But it's suspicious enough they want me to come back ASAP for an MRI, which they say will help them get a better picture...
So, as Brian predicted, my nerves are in shambles. But as so many others have said, "It ain't cancer till they say it's cancer." so I'm hanging my hat on that big time right now...
Will keep everyone posted as we go along... Once again glad that this board exists...
Peace,
Eric
Tongue cancer (SCC), diagnosed Oct. 2003 (T2 N0 M0). Surgery to remove tumor. IMRT Radiation 30x in Dec 2003 - Jan. 2004. Recurrence lymph node - radical neck dissection June 2004. Second round of rad/chemo treatments ended Sept. 2004.
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#54863 05-19-2004 07:06 AM | Joined: Jul 2003 Posts: 382 Likes: 3 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jul 2003 Posts: 382 Likes: 3 | Eric-
Yep, it ain't cancer till they say it's cancer!! Keep looking up and know that there is one more out there praying for you and your shambled nerves!! With ya - 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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#54864 05-19-2004 07:32 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | Eric
Think some of our treatment should involve a shrink.. to take care of all these overstreached nerves of ours.. try to stay positive..tell them ASAP means NOW.. keep us posted
prayers, 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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#54865 05-19-2004 07:41 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 | Eric,
I had a "large suspicious area" in the same spot as the largest lymph node that was cancerous and the doctor even told me because it felt so hard he was pretty sure it would require a neck dissection and most likely indicated a recurrence. It went away on the next exam/scan. Please try and be positive and it ain't cancer till the pathologist proves it.
My thoughts and prayers are with you and if there was any way I could take the burden from you, I would.
Calmness and hugs your way.
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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#54866 05-19-2004 07:51 AM | Joined: Dec 2003 Posts: 207 Platinum Member (200+ posts) | | OP Platinum Member (200+ posts)
Joined: Dec 2003 Posts: 207 | Thanks everyone for the thoughtful and quick responses... I feel a lot calmer now than I did at first...
Tongue cancer (SCC), diagnosed Oct. 2003 (T2 N0 M0). Surgery to remove tumor. IMRT Radiation 30x in Dec 2003 - Jan. 2004. Recurrence lymph node - radical neck dissection June 2004. Second round of rad/chemo treatments ended Sept. 2004.
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#54867 05-19-2004 09:32 AM | Joined: Mar 2004 Posts: 164 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Mar 2004 Posts: 164 | Eric,
Just to calm you down a bit more. I also had a "hot" lymph node on my PET scan. They did a sono-guided needle biopsy and it was negative for cancer.
If the MRI is a better test, I wonder why they didn't use it to begin with? Call me cynical, but I think PET generates so much revenue for the owners that it is occasionally overused.
Try to rest as easy as you can.
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,
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#54868 05-19-2004 09:41 AM | Joined: Dec 2003 Posts: 207 Platinum Member (200+ posts) | | OP Platinum Member (200+ posts)
Joined: Dec 2003 Posts: 207 | Great question, Lynn... I believe I will ask my docs this next time we're in touch (which should be soon, since ASAP means now)...
Tongue cancer (SCC), diagnosed Oct. 2003 (T2 N0 M0). Surgery to remove tumor. IMRT Radiation 30x in Dec 2003 - Jan. 2004. Recurrence lymph node - radical neck dissection June 2004. Second round of rad/chemo treatments ended Sept. 2004.
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#54869 05-19-2004 01:26 PM | Joined: Dec 2003 Posts: 207 Platinum Member (200+ posts) | | OP Platinum Member (200+ posts)
Joined: Dec 2003 Posts: 207 | OK, here's the latest scoop -- I have my MRI scheduled for tomorrow morning at 9 a.m. in Flagstaff (about an hour away from here)... I was feeling OK about things until my ENT talked to my wife... He sounded "very concerned" after reading the PET report...
He hasn't actually seen the scan, however, just read the report... He's worried, I think, that since I'm a young guy that doesn't drink or smoke, that this may be an aggressive form that doesn't respond so well to treatment... How's that for making your day... OK, so now I'm officially freaking out...
Any and all prayers are appreciated... Will keep everyone updated... Thanks for all the support so far... You guys are awesome...
Eric
Tongue cancer (SCC), diagnosed Oct. 2003 (T2 N0 M0). Surgery to remove tumor. IMRT Radiation 30x in Dec 2003 - Jan. 2004. Recurrence lymph node - radical neck dissection June 2004. Second round of rad/chemo treatments ended Sept. 2004.
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#54870 05-19-2004 01:32 PM | Joined: Apr 2003 Posts: 148 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Apr 2003 Posts: 148 | Lots of prayers coming your way from Kansas.
Sincerely,
Lisa
Lisa
SCC of Tongue Stage 1 (T1,N0,M0)
partial glossectomy,modified neck dissection 4/14/03
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#54871 05-19-2004 01:32 PM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Eric, I am praying for you and thinking about you...God Bless You!!!!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---
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#54872 05-19-2004 04:25 PM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2003 Posts: 1,384 Likes: 1 | Eric, My cyber hand is streched out for you to grab if you need it. Be thankful your doctor is being very proactive. Take a deep breath and think CALM....
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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#54873 05-20-2004 05:45 AM | Joined: Mar 2004 Posts: 164 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Mar 2004 Posts: 164 | Eric,
My prayers are being lifted up for you. I know these are the most difficult days while you wait, but try to do normal things while you wait for the results. I hope the radiologist reads the scan right away and you can get the results before the weekend. I was constantly bugging my doctor for results. I also am praying that you get good news.
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,
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#54874 05-20-2004 03:13 PM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | Hang in there Eric - it's probably just scar tissue and they want to be sure. Like I said in an earlier post both of my MRI's sucked but still turned out to be nothing.
I'll add you to my prayer list never the less.
Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#54875 05-20-2004 03:49 PM | Joined: Dec 2003 Posts: 207 Platinum Member (200+ posts) | | OP Platinum Member (200+ posts)
Joined: Dec 2003 Posts: 207 | Hello again, folks, Eric here... Well, here's the verdict. The MRI "sucked" as Gary so eloquently put it, so they followed that scan up with a CT/needle biopsy this afternoon (giving me the trifecta for this week -- a PET scan, a CT scan and an MRI). So I'm now anxiously awaiting those results, which the docs told me I should get tomorrow afternoon. Gary, I hope it's just scar tissue for sure or something else benign!! While "it ain't cancer till they say it's cancer," all signs point to a recurrence from what everyone is saying... The one bright spot, if you can call it that, is that the node that's showing up "suspcious" falls out of the original field where they did the radiation. That stinks, of course, that they missed this. But it's good news in that it doesn't necessarily mean this tumor is just laughing at radiation. Everything within the IMRT radiation field came up negative... So basically, unless things come back negative tomorrow (still praying for that!), I'm going to go another round with cancer -- a neck dissection this time (wasn't done originally) and another round of radiation to this new area... yippee :rolleyes: I'm still holding out hope that this is scar tissue or something like this but realistically.... I will say this. My ENT has been unbelievable. He's been a bulldog for us. He first ordered the early PET scan when I told him my neck was still feeling tender (it was originally scheduled for July). He got my MRI scheduled for today, when all the other powers that be had me pencilled in for next week. He pulled strings to get me the biopsy today rather than next week. And he pulled more strings to get the folks in the lab to get me results (hopefully) before the weekend... He said he lost sleep over me last night and then actually cried a little bit as he told me he still aims to save my life... I was touched because this is a pretty tough guy. I think I'm really affecting him because we're the same age (early 30s)... Anyway, so the beat goes on... prayers and warm thoughts continue to be appreciated... I will continue to keep folks posted... Those of you who have been through recurrence stuff, I'd love to hear from you if the final word is positive... I already know a lot of the reality, and it's not good (which is my doc got so choked up)... Throw in some hope as well... Thanks  Love to all of you... You don't know how all of you have inspired and blessed me... Eric
Tongue cancer (SCC), diagnosed Oct. 2003 (T2 N0 M0). Surgery to remove tumor. IMRT Radiation 30x in Dec 2003 - Jan. 2004. Recurrence lymph node - radical neck dissection June 2004. Second round of rad/chemo treatments ended Sept. 2004.
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#54876 05-20-2004 04:40 PM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2003 Posts: 1,384 Likes: 1 | We need a special OCF pin (or something) for a doc that gets this deep for us. I AM praying, please tell him my prayers include him too.
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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#54877 05-20-2004 07:45 PM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | It makes such a change to hear of a doc going that extra mile.. there are more posts here about docs that were to conservative at the start.. Hang on in there Eric.. You can do this..
prayers 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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#54878 05-20-2004 08:48 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 | Eric,
I am so sorry for all you have had to endure this week especially. You are truly blessed to have been paired with such a dilligent health care provider. I am hoping and praying that your results will be nothing but good news! May God continue to bless you and shower His love and healing upon 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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#54879 05-21-2004 01:03 AM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Apr 2004 Posts: 837 | Eric,
Here's hoping for only the best results for you.
I totally agree with your point about the value of a doctor who keeps on the trail of this disease and its after-effects. I've been fortunate that the oncologist who was the "point man" on my case 15 years ago has stayed on ever since as my primary care doctor. He still sees me 2-3 times a year and constantly tells me to call him about any symptom, any time, anywhere. (When I had to call his nurse about a bad case of poison oak, I told her the doctor needed to keep me on for comic relief.) Given how nasty and persistent oral cancer can be, it's really important to know you have a doctor who knows your history well and can be an advocate and who will expedite tests when they need to be expedited.
Cathy
Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
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#54880 05-21-2004 02:57 AM | Joined: Jan 2003 Posts: 95 Senior Member (75+ posts) | | Senior Member (75+ posts)
Joined: Jan 2003 Posts: 95 | Eric ,
Hoping for the best results here too. My husband is playing the waiting game too. He had base of tongue stage 3 or 4 did the radiation and chemo ended one year ago April still can't eat well and now has a spot blemish on his lung and the oncologist said he should have it removed ca or not so he has an appointment wed to see someone. The waiting game stinks . He's a mason and started working a little and started feeling good about himself after a long winter . Anyone had a lesion removed from their lung? How long recovering? I'm a nurse but he tends to ignore me.He also minimizes things but I know he's a basket case. I'm concerned he won't go for removal if he thinks it's a big deal because he went through so much last round. Unfortunately I'm big on personal choices and have to keep my mouth shut. Very hard to do if you knew me.This whole situation for him and many of you here is like waiting for the axe to fall and really sucks
for all . I'd be greatful if anyone has a positive experiance to share.You have all been so helpful in the past because I don't have anyone to share my concerns even getting it out helps. So I'll already say thanks .
Diane | | | 
#54881 05-21-2004 05:11 AM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2003 Posts: 1,163 | Hi Erik,
They sure put you through the wringer this week. Nice to see you keeping us up to date. I am praying for good results from Wisconsin. I am just one of many pulling for you. Waiting for results drive me nuts! I try to just keep that old sayin going. "It ain't cancer til they say it's cancer" Keep the upbeat tone of your posts going.
Dan
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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#54882 05-21-2004 06:02 AM | Joined: Mar 2004 Posts: 164 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Mar 2004 Posts: 164 | Eric,
After all that, you ended up with a CT after all. CT is what detected my lung mets.
I am proud of your physician for going the extra mile for you. I think your assessment is right on, he is wasting no time in getting a proper diagnosis. Time is of the essence. He wants to pull out all the stops so that your chance for a cure is as good as it can be.
Thinking of you often.
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,
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#54883 05-21-2004 07:29 AM | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Eric,
Sorry to hear you may have to go through this again. Neck dissections are a 'walk in the park' in comparison to radiation. I have survived two 4 years apart. My second cancer was not a reoccurance of the first but a completely new one that cropped up 4 years to the day from the first one. While it is disheartening to have to do it all over again, IF it is cancer, they probably have caught it early by their diligence and the sooner it is out, the better. Some of us do survive a second go round.
Still hoping it's a false positive.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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#54884 05-21-2004 10:19 AM | Joined: Oct 2016 Posts: 284 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Oct 2016 Posts: 284 | Eric, My mom had a recurrance (or so they say) but it was very close to the primary cancer so we are still unsure of it being a recurrance. She didn't have radiation with the first surgery although they did the radical neck dissection with no nodes positive and the neck dissection was not that bad at all especially when compared to the radiation and chemo. Even though she had IMRT after the second surgery they radiated bascially her entire mouth area both sides of her neck and even the chest area (heavily concentrated on the right side where the cancer was). I am praying so hard for you that it is not a recurrance. Its the pits to have to go through more surgery and treatment. I checked your profile and realized that you are my husbands age. I can't even begin to imagine how hard this is for you and your wife. I will be praying for you both. Take Care, 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
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#54885 05-21-2004 03:31 PM | Joined: Dec 2003 Posts: 207 Platinum Member (200+ posts) | | OP Platinum Member (200+ posts)
Joined: Dec 2003 Posts: 207 | Eric Update -- A GOOD DEVELOPMENT!! but not completely out of the woods yet...
Hello all, just got off the phone with the ENT (after sweating bullets all day)...
Here's the scoop: the biopsy of the lymph node came back negative for cancer (great news indeed). But my doctor, considering all the circumstances, wasn't 100 percent ready to pronounce me out of the woods yet. He wants to either biopsy again or possibly even take the whole lymph node out just to be sure.
I think the concern is over the quality of the sample they got with the CT-guided biopsy. They know they were inside the node, because I watched the pictures on the screen in front of me. But he had to take three samples to be sure (and didn't really like the first two too well)...
Anyone else been down this road before (i.e. multiple biopsies, still having questions even though the report was negative)?
I'm breathing a big sigh, at least for the weekend, though I'm being cautiously optimistic because of the nature of this disease and reality in general...
Love to all who have prayed for me and my (amazingly wonderful) wife... will keep everyone updated on the latest...
I'm definitely staying in prayer for Daniel and his situation... prayer does work... hoping for similiar developments in his case...
Eric
Tongue cancer (SCC), diagnosed Oct. 2003 (T2 N0 M0). Surgery to remove tumor. IMRT Radiation 30x in Dec 2003 - Jan. 2004. Recurrence lymph node - radical neck dissection June 2004. Second round of rad/chemo treatments ended Sept. 2004.
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#54886 05-21-2004 04:30 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 hope this news eases your burden this weekend. Be sure and tell your doctor how much all of us appreciate his dilligence and suspicious nature! He is a jewel. I will be praying especially hard for you this weekend.
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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#54887 05-21-2004 04:45 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | Erik,
That is wonderful news, take the weekend to celebrate!
Love,
Minnie
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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#54888 05-21-2004 05:47 PM | Joined: Oct 2016 Posts: 284 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Oct 2016 Posts: 284 | Eric, Before my mom went in for her second surgury she noticed a swollen lymph node in the back of her neck. The nodes in the front had been removed it was really small just like the size of a pea my mom was all prepped up for surgery when she mentioned it to her ENT he stopped the surgery to do a needle biopsy on it. He took 5 samples just to be safe and we went home and waited the 5 days for the results. The longest five days of my life. The results were negative and even after chemo and radiation the node is still there the same size and hasn't changed at all. Her doctor's all tell her that sometimes they may stay swollen for no good reason and maybe it has always been swollen she just never noticed it before. My sister has multiple swollen nodes in her neck and her doctor said they were swollen because she is extremely dehydrated (she's never had cancer). Your news is awesome.. I am soooo happy for you. Have a terrific weekend. 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
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#54889 05-22-2004 10:28 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 | Eric, Dani's mom's story reminds me of the huge swollen lymph node under my jaw that started this intense journey for me. It is still over 1 cm after the radiation but it has not shown any cancer on any scan since radiation last October. I got a copy of the medical oncologist's reports and I noticed he made a comment that a neck dissection appeared inevitable back in November because of the still hard mass. I am hoping the biopsy was accurate (and my doctor is, too  ). 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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#54890 05-22-2004 10:48 AM | Joined: Mar 2004 Posts: 164 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Mar 2004 Posts: 164 | Eric,
I work for a group of radiologists and they don't always get a good speciman to work with. (not enough cells for the pathologist to work with) That's why they sometimes take 2 & 3 samples. Rest easy this weekend. Take one step at a time! Celebrate the small victories.
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,
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#54891 05-22-2004 10:52 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | Eric
You are doing well.. thank goodness for some good news..and yes biopsies are still only a guide.. the histolgy is only as good as the sample.. my last one was subject to 'cross cutting'which left an undecided result of 'may be' it is not invasive yet.. so ride with it kid..
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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#54892 05-22-2004 03:44 PM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2003 Posts: 1,163 | Erik,
It's about time we got some good news. This week was kind of a bad week for several of us on the board.
I would be dancing around this weekend If I were you. Enjoy the small victories while you can. We love to hear good news. Here's hoping it's all downhill for you.
Your Friend, Dan
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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#54893 05-22-2004 05:39 PM | Joined: Dec 2003 Posts: 207 Platinum Member (200+ posts) | | OP Platinum Member (200+ posts)
Joined: Dec 2003 Posts: 207 | Thanks Dan -- you remain in my prayers and thoughts daily...
Eric
Tongue cancer (SCC), diagnosed Oct. 2003 (T2 N0 M0). Surgery to remove tumor. IMRT Radiation 30x in Dec 2003 - Jan. 2004. Recurrence lymph node - radical neck dissection June 2004. Second round of rad/chemo treatments ended Sept. 2004.
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#54894 05-25-2004 05:44 AM | Joined: Dec 2003 Posts: 207 Platinum Member (200+ posts) | | OP Platinum Member (200+ posts)
Joined: Dec 2003 Posts: 207 | Quick update on my front --
The initial biopsy taken last week of my "suspicious" lymph node came back negative for cancer. My ENT feels, considering my history, that this isn't enough evidence to fully convince him that it's not cancer. So he's going to go ahead and take out the whole node and have it checked out.
I'm totally fine with that. Better to be safe and proactive, than to wait around and let it grow if it is cancer. Of course, he's booked until late next week, so I get to play the waiting game for awhile yet before this proceedure is done. In the meantime, he wants me to take antibiotics to see if that might knock out any infections I may have. Nerve-wracking indeed.
Here's another crappy part to all of this. A few days before my initial PET scan that started all of this, I got a job offer from a newspaper in North Carolina, which would put my wife and me much closer to our families than my current situation (we live in Arizona right now). They loved my resume and writing samples. They offered me the job sight unseen. Wow!
But when all these "suspicious findings" showed up on tests and I let them know why we were hedging on accepting the offer, they dropped me faster than all of us dropped our radiation masks after our last rad appointment. It's pretty frustrating, but if I'm going to believe God is in control of my health, then He must know what He is doing with regards to jobs, etc. LOL
I guess it's the lame excuse they gave me as to why they were withdrawing the offer that hurt the most, especially after enduring what I endured nerve-wise the past week or so...
I realize job stuff is petty in light of what many on the boards are going through, but it's a bummer nonetheless...
My love and prayers to all of you... Thanks for listening...
Eric
Tongue cancer (SCC), diagnosed Oct. 2003 (T2 N0 M0). Surgery to remove tumor. IMRT Radiation 30x in Dec 2003 - Jan. 2004. Recurrence lymph node - radical neck dissection June 2004. Second round of rad/chemo treatments ended Sept. 2004.
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#54895 05-25-2004 05:52 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | Hi Eric
What a bummer...I hope the jerk that dropped you so fast NEVER has to face what you have been through.. Do they not realise that what you have been through is what made you the writer you obviously are today.. Crazy.. hope your week doesn't drag to much.. sooner it's done the better..
prayers.. 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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#54896 05-25-2004 08:06 AM | Joined: Feb 2004 Posts: 162 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Feb 2004 Posts: 162 | Eric,
I'm glad you're being proactive regarding your suspicious lymphnode, but sorry to read about your missed job opportunity and a chance to move back east. I'm affraid that if you share your challanges with other future employers, they may be just as reluctant to hire you, though hopefully not as cheesey about it. There is some debate over how much to share with a prospective employer as we all want to be forthright and honest about our journey, but this may not be the best policy where an employment search is concerned.
-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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#54897 05-25-2004 08:15 AM | Joined: Apr 2003 Posts: 148 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Apr 2003 Posts: 148 |  Erik, That just sucks. Especially since you would have to COBRA anyway for the first year of employment with them. Doesn't sound like someone I would want to work for, I am saying big prayers for your upcoming surgery and job situation. Whew, I never react like this. That felt pretty good! Watch out guys, we may have unleashed a monster. :rolleyes: Sincerely, Lisa
Lisa
SCC of Tongue Stage 1 (T1,N0,M0)
partial glossectomy,modified neck dissection 4/14/03
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#54898 05-25-2004 08:46 AM | Joined: Dec 2003 Posts: 207 Platinum Member (200+ posts) | | OP Platinum Member (200+ posts)
Joined: Dec 2003 Posts: 207 | Lisa -- I appreciate your "monster" and have felt pretty much that way all morning...
Thanks, everyone, for sticking up for me... The job thing just seemed like such a cool opportunity -- a fresh start in many ways, a chance to live in the beautiful NC mountains, plus a wonderful chance at being much closer to family and friends...
It kind of gave me extra hope as I went through this latest series of tests and such... But, no time to sit around and feel sorry for myself -- I've got to rally and put my "fighting" attitude back on for the road ahead... I will, however, drown my sorrows in some Chinese food this afternoon, being thankful for each bite and for the ability to taste it and enjoy it (except for the really spicy stuff)... Thanks again...
Eric
Tongue cancer (SCC), diagnosed Oct. 2003 (T2 N0 M0). Surgery to remove tumor. IMRT Radiation 30x in Dec 2003 - Jan. 2004. Recurrence lymph node - radical neck dissection June 2004. Second round of rad/chemo treatments ended Sept. 2004.
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#54899 05-25-2004 10:16 AM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2003 Posts: 1,384 Likes: 1 | Let's see...how far is Cottonwood from Las Vegas? I think you know why some things happen, Because they are supposed to! 
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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#54900 05-25-2004 06:13 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | Hey Eric,
When you're a huge, famous sports writer 20 years from now that little old newspaper in North Carolina will regret acting like they have. I, for one, am going to take advantage of the moment.......can I have your autograph now??
Blow them off.
Love,
Minnie
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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#54901 05-26-2004 12:57 PM | Joined: Dec 2003 Posts: 207 Platinum Member (200+ posts) | | OP Platinum Member (200+ posts)
Joined: Dec 2003 Posts: 207 | Ironically, the newspaper editor who withdrew the job offer from me yesterday had a glowing story in her paper today about Relay For Life and cancer survivors. The focus was all about how a diagnosis of cancer doesn't have to be a death sentence anymore, etc.
It was tough to read that, knowing deep down that my cancer journey is likely the thing that scared her and her bosses off... I was pretty much over this whole thing until I read that a few minutes ago, then that sinking kicked-in-the-stomach feeling came back...
Sorry, folks, I'll rally... I know God is in control... thanks for letting me vent one more time...
Tongue cancer (SCC), diagnosed Oct. 2003 (T2 N0 M0). Surgery to remove tumor. IMRT Radiation 30x in Dec 2003 - Jan. 2004. Recurrence lymph node - radical neck dissection June 2004. Second round of rad/chemo treatments ended Sept. 2004.
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#54902 05-26-2004 01:07 PM | Joined: Dec 2003 Posts: 528 "OCF Down Under" "Above & Beyond" Member (500+ posts) | | "OCF Down Under" "Above & Beyond" Member (500+ posts)
Joined: Dec 2003 Posts: 528 | I am thinking positively for you Eric, down here in Oz.
From Helen, with love
RHTonsil SCC Stage IV tx completed May 03
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#54903 05-26-2004 01:19 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 | Eric,
I am glad the biopsy came back negative and relieved at the proactive approach. Every time I hear the dread r- word, I wonder if I should have had the neck dissection.
Bummer about the job thing. Better to find out the depth of their character before you get all the way out there. I hate giving advice but I would not be able to resist the temptation to send the editor the article with a few hand written comments on it. You don't have to accuse her as much as relay your feelings as you did above. Keep in mind, I am more direct and confrontational than most. :p
I hope your wait is not a teepee and a wigwam! (You know...two tents..or is that too tense?.)
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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#54904 05-26-2004 04:21 PM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2003 Posts: 928 | Eric just wanted to add my good wishes for you. As for the NC job, their loss . keep your chin up and May your God Go With You. Marica
Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
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