 
#14965 05-18-2004 05:10 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) |  Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Thanks Gary, so I assume that is a good thing?
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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#14966 05-18-2004 05:27 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Sorry, probably posted in wrong place again! 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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#14967 05-18-2004 06:05 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 | "Localized" is always "good"! Sometimes they also use terms like "well differentiated". It means that it doesn't appear to have spread.
We did kind of hijack Roberts thread but it is related and of possible interest so I wouldn't worry about it.
Gary Allsebrook
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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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#14968 05-18-2004 07:08 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Thanks Gary, don't know if it is age (46) or radiation brain, can't remember things, I know I have been told about the in situ before. Thanks so much, have a great day!
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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#14969 05-18-2004 09:23 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 | As my ENT explained, in situ refers to the location of the cancer in the pathologists examination. In situ, in short, means the cancer was only in the upper layer of cells or the epithelium (surface cells) and is called cancer in situ or cancer in place. This is typically the first stage of carcinomas. However, this does not indicate the cancer has not spread. Squamous Cell Carcinoma sends out thousands of cells throughout the body in the lymph fluid and the blood. For whatever reasons, some of the cells tend to attach and immediately start reproducing versus flushing out of the body through normal processing. I had a biopsy of SCC in situ for the tumor at the base of my tongue. However, and this is very important to know, I had metastatic cancer appear in 2 lymph nodes that then put me in Stage IV. One lymph node was the size of my thumb for 6-8 months while I went from doctor to doctor trying to bend an ear. I eventually went to a plastic surgeon on my own and asked to have it removed. It was so liquid filled and full of what he thought was puss that he just biopsied it and sewed me back up. His initial guess was that I had TB. It came back with a pathology of metastatic Squamous Cell Carcinoma. I then went to an ENT and the PET/CT scan showed not only the tumor on the base of my tongue but also two lymph nodes indicating metastatic cancer.
The ENT was still baffled by the second biopsy he performed when they placed my mediport, feeding tube and pulled my back molars in preparation of treatment. The pathologist report came back as Squamous Cell Carcinoma in situ. He made it a point to tell me that most people believe in situ to indicate an early stage cancer when in fact this is not always the case, especially with Squamous Cell Carcinoma. Even though I had a somewhat slow growing version of SCC, I am lucky to have found it before it spread more.
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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#14970 05-18-2004 11:02 AM | Joined: Mar 2002 Posts: 4,918 Likes: 67 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,918 Likes: 67 | Carcinoma in situ IS the very first level of the staging system for tumors. This starts with TX, cannot be assed
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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#14971 05-18-2004 01:23 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 | I remember the doctor kept saying, "I don't understand how this can be..." over and over. I just smiled and said one can never underestimate the power of prayer and told him thousands of people all over the world had been praying for me regularly. There really is no other explanation. I did spend some time on the phone with someone that used distant healing summoning the Universe to allow me to heal. I also used some Chinese herbs that were concocted by a Taiwanese MD who is an accupuncturist in Dallas. He claims to not be the best in the world...only in the USA! I guess I pulled it out of every nook and cranny I could imagine. I even spent time with a Reiki Master (my older sister). I don't know for sure which channel helped me but I sure didn't give up on my multi-disciplinary approach, huh? How's that for some more stirring of the controversial pot? 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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#14972 05-18-2004 02:54 PM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Thank You Brian and Ed.....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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#14973 05-18-2004 04:27 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 | Oh, I forgot to mention the o-mamuri my aunt had blessed by the buddhist monks at the Narita-ken temple in Chiba Japan. I would be more than happy to provide any of the phone numbers or names if anyone wants to try something unconventional to supplement their treatment.  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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#14974 05-18-2004 05:09 PM | Joined: Feb 2004 Posts: 4 Member | | OP Member
Joined: Feb 2004 Posts: 4 | Hey folks I sure do appreciate your responses. Don't worry about hijacking my post. I spend most of my time educating myself about this disease. In Situ, I had to hit the net and look that one up after the post op visit. Brian and all of you who took the time to share your experience and wisdom it is much appreciated.
Uptown kind of hit on my concerns. I had a bump come up in the hard pallet area. It is sore to the touch. ENT looked it over today and advised it was an infected salivary gland. Now I hit him up about all of these strippings. If there is regrowth after two more of these strippings then we do radiation. The first one was done March 2. There is a partial regrowth. Apparently this is the preferred method as the lesion was localized on the true left vocal cord. However Balancing Brian's comments and Uptown I believe I will seek a second opinion. It took me going through two local ENT for them to even find the lesion.( See my first post). I think I will contact a coworkers ENT and get his input. Thanks again everybody. Robert | | |
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