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#28095 06-14-2006 02:08 PM
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Hi, Darrell. Hope you are faring well through this. I've been thinking about you. Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

:
#28096 06-14-2006 02:25 PM
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James,

"Everything seemed OK until Dec. 23, 2003 (I remember exactly when I first realized I could have a recurrence). I noticed a small "place near the bottom part of front of tongue and my wife noticed my breath was similar to that when I had my first SCC."

I too had noticed a very distinguishable and quite nasty breath smell before my husband was diagnosed and for a few weeks into treatment. The smell is now gone. I was wondering if that smell was related to the cancer myself.


CG to husband, dx 02/09/06 tumor base of tongue spread to lymph nodes. 35 combined xrt/imrt rad plus 3 rounds Cisplatin. Final tx 05/18/06. Parotidectomy & Sel Neck Dis 08/09/06. Lung cancer surgery 04/20/07. All currently in remission.
#28097 08-19-2006 06:07 PM
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Darrell,

Glad to hear you are doing well! Praying for continued miracles to drop in your path.

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
#28098 08-20-2006 01:50 AM
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I also fear re-occurrance. I had small white patches that I FOUND MYSELF all during 2005. I went thru 3 surgeries at the Local Oral Surgeon's office for biopsies. Each time they came back calling it Leukoplakia, blah, blah..that could turn in to cancer. That alone was bad enough.

Finally the 4th time I saw a small white patch, I insisted on someone with more expertise. So I chose Sloan Kettering in Feb 2006. I had surgery, I recoverd (more or less) and went thru 2 checkups.

Now it is August, and I found some white patches a couple weeks ago, watched them, went to the dentist, and then made an appointment. Someone here said don't wait..let them diagnose. I agree, so I made the appointment (Thank you to whomever for that advice)

These lousy spots, they seem to come and go.

Am I crazy?? I look in my mouth, with fear, all the time.. praying no new thing will pop up. Meanwhile, I have an appt. 9/1/06 for Sloan Doctors to look at it. I had 2 good checkups..this will be #3..and it scares me, but this morning I look in, and its almost gone? I think I lost it?? Maybe it jumped out on to my toothbrush. I wish!!

Life is so busy, I have elder relatives I take care of, I don't have time to be sick.. I hate it and I hate the paranoia .

Thank God for this website. I feel so much better, I learn from each of you, and I pray for you all. I may be at the beginning of a battle, but I refuse to lose the war.


You are in my thoughts and prayers.

Nanci
*******************
SCC - Early detection. 1/4 of Tongue Removed, left side. Following carefully.
#28099 08-25-2006 06:09 PM
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Nanci,

Keep following up with the white patches. Being dilligent will only keep you on the right side of progression. Try hard to relax between visits and they probably recommend follow up every 1-3 months depending on who you see. Stay with the experts (i.e. Sloan-Kettering) and remember it aint cancer till they can prove it. Have them educate you on Leukoplakia and which types are more aggressive and warrant watching closely.

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
#28100 08-25-2006 07:18 PM
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Nanci --

My husband is in a similar situation -- his dentist noticed a small leukoplakia on his tongue in early May. The report for the initial biopsy, by an oral surgeon, indicated moderate dysplasia but warned of a possible "skip effect" and strongly urged a more thorough examination; a subsequent excisional biopsy by a local ENT showed SCC in situ and a bit superficially invasive. A followup PET scan had no areas of concern.

At that point, he began being seen by a Johns Hopkins CCC ENT and had his excisional biopsy slides re-read by the Hopkins CCC pathologists. So far he has not required additional treatment (knock on wood).

He has had two "everything's fine" checks at Hopkins and is being seen there every four to six weeks for the first six months. During the second six months, that will stretch out to every eight to 10 weeks, assuming everything stays good (another knock on wood).

The doctor noticed a small white dot during the first check, but he was not concerned and it was gone at the second visit. Both my husband and I know that oral cancer is pretty much all that these physicians see, so they recognize what could be a problem and what likely isn't. My husband is also checking his mouth himself to be on top of anything that might crop up.

As Brian wrote back when I first asked on the boards about leukoplakia (before we knew it was SCC): "Keep an eye on this from now until forever."

I wish you the best.

-- Leslie


Leslie

April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
#28101 08-30-2006 10:56 PM
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Uptown, Leslie,

Thank you for your input. My checkup at Sloan is Friday, this week. I had my local dentist look at the new white spot, we waited 14 days, ( he waitted, I watched intently for 14 days) it was still there, so I pulled my Oct. appt. into September.

Someone here suggested Green Tea swishing. So now I brew a cup of tea, add a small portion of Splenda, and keep it in the refrigerator. When I go past, I open up, take a swig, swish and swallow this lovely brew.

Ever since, Guess what!!! ...the white spot has been getting smaller. I think, when I get to Sloan on Friday, it may be gone. So, maybe the anti-oxidents in the TEA are helping???

Well, what a surprise!!!! I know lots about Leukoplakia, God Bless the internet, and WEBMD and the Merck manual, and I guess you are right, WE WATCH FOREVER.

Thank you all.. for your support.


You are in my thoughts and prayers.

Nanci
*******************
SCC - Early detection. 1/4 of Tongue Removed, left side. Following carefully.
#28102 09-29-2006 07:15 PM
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I would like to add that my hubby's recurrence was found on the first annual PET scan. No one has been able to determine "conclusively" that it is cancer...but highly suspicious. I wish they had done a PET scan right after he finished surgery and treatment so they could see the "new" landscape in his neck. I do not feel confident that the recurrence in his neck is not a false positive. A biopsy has not proven conclusive. He feels fine and looks fine. ?*&%$


Tom
Stage 3, T3,N1,M0, Squamous Cell Carcinoma, Base of Tongue. Surgery, Radiation 6 weeks. Completed Treatment Sep 2005. Recurrence Jun 2006 - Chemo Gemcitabine/Paclitaxol Nov 2006
#28103 10-01-2006 08:07 AM
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TomM,

From everything I've seen on this site, I think it's quite typical NOT to have a PET scan soon after treatment -- there can be so much scarring (and other irregularities) in the treated area that doctors can't get a meaningful read and can too often get false positives, which is why they will wait awhile to do followup scans.

Cathy


Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
#28104 10-01-2006 08:35 AM
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Posts: 137
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My first post treatment PET/CT was at three months, with followups every 6 months. My ENT will do a visual/palpate exam tomorrow.


dx 2/13/06. modified radical neck dissection 3/9/06 multiple biopsies of upper airway and direct laryngoscopy. 1 of 47 lymph nodes positive for metastatic undifferentiated carcinoma (lymphoepithelioma). Unknown primary. Finished radiation 5/24/06.
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