#80968 09-23-2008 01:56 PM | Joined: Sep 2008 Posts: 10 Member | OP  Member
Joined: Sep 2008 Posts: 10 | Hi, I am Becky from Oklahoma. I am new to the forum and new to the subject of oral cancer. I just discovered the news this week. I went to the doctor for a painful mouth sore that had been continuing to spread over the past two months. I never dreamed of it being cancer, I could kick myself for not going to the doctor sooner. But, at least the catscan and neck xray show that it hasn't spread past my mouth or glands.
I put my description of my diagnosis below as others suggested but I'm not sure if it is exactly correct - just going by memory. I am at Stage 2 at this time.
I am very scared,but I have a positive attitude. Fortunately,I have a very supportive family and many people praying for me.
The fear of the unknown is the worst I suppose.
God Bless Everyone, I am looking forward to chatting with you and reading more of your posts.
9/18/08 Diagnosed SCC/Stage 2 Left floor of mouth and tongue.
9/26 Laser Surgery
10/9 First appt. at CTCA in Chicago
11/24 RO Tomo TX (5x wk)for 7 wks
11/26 Port Insertion w/access
12/2 -Chemo/Cisplatin (1X wk) 123 min. for 6 wks
12/15 - Peg Tube Insertion
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | What is CO2 Laser Tx and why are you getting a Neck Dissection with no positive nodes? I mean are they doing both sides of your neck? And if not, how did they pick one side over the other?
Where are you being seen?
I personally did not and would not let anyone cut my neck(s) open without at least another opinion. In fact, I would get another opinion from a Comprehensive Cancer Center anyway.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Sep 2008 Posts: 10 Member | | OP Member
Joined: Sep 2008 Posts: 10 | Hi David,
I am probably not describing it correctly. They are only doing one side of my neck. I am being seen by and ear nose and throat specialist in OK. He will be doing the procedure at SE Medical Center.
The left side of my tongue has blisters and white patches on it, my gums on the left side of my mouth feel inflamed and I have a very deep ulcer under my tongue on the floor of the left side of my mouth. My biopsies all came back positive. I was able to eat soft food before the biopsy but now my tongue is so numb and/or swollen that all I can eat is Ensure, broth or cream soups because I can't chew and it is difficult to swallow.
My doctor welcomed me to have other opinions. His personal options were 1. To do nothing 2.To do a complete jaw removal with chemo and rad.(Radical Surgery) or 3. To attempt to remove the cancer with a CO2 Laser and remove the glands on the left side of my neck in order to make sure it doesn't spread.
Becky
Last edited by Becky C; 09-23-2008 08:05 PM.
9/18/08 Diagnosed SCC/Stage 2 Left floor of mouth and tongue.
9/26 Laser Surgery
10/9 First appt. at CTCA in Chicago
11/24 RO Tomo TX (5x wk)for 7 wks
11/26 Port Insertion w/access
12/2 -Chemo/Cisplatin (1X wk) 123 min. for 6 wks
12/15 - Peg Tube Insertion
| | | | | Joined: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | Becky,
Have you had a PET/CT scan or just a CT scan?
David is right, you should definitely get a second opinion from a Cancer Center where you'll have a whole team of doctors to evaluate you and come up with a treatment plan.
- Margaret
Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
| | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Becky,
Just reading that option #1 was "DO NOTHING" is enough for me to say that you MUST get another opinion. You seem to be with the wrong doctor.
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
| | | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | | "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 | What extremes of options. From DO NOTHING to COMPLETE JAW REMOVAL WITH CHEMO & RAD. Unbelievable !!!!!!
Please follow the advise given here and get other opinions.
Gabriele
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | Becky, the single most important thing you can do is to get your case seen at a comprehensive cancer center (CCC). They see hundreds of cancer cases every year, not a handful like a single Doc might see in his/her practice. They also bring a multitude of cancer professions to the table to look at your case -- All of these people are keeping up with the latest and best in treatments, and you don't get stuck with one person's possibly erroneous opinions. They may approve your Doc's approach or may suggest something different based on their expertise. Here's a list from this site of CCC's: http://www.oralcancerfoundation.org/resources/cancer_centers.htmWhen I had my recent bout with oral cancer, had there not been a good free-flap CCC here in Washington, I'd have gone to M D Anderson in Houston. People travel from several states away to come here to Washington. Don't be afraid of annoying your Doc by getting a second opinion; a good Doc will respect you for it and encourage you to do it and who cares about how a less-than-good Doc feels?
Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | | Joined: Sep 2008 Posts: 250 Platinum Member (200+ posts) | | Platinum Member (200+ posts)
Joined: Sep 2008 Posts: 250 | Becky,
As I said in my PM to you earlier, please get another opinion from an ENT in a cancer care center. If I had done that, mine never would have gotten as far as it did. How yours is now is how mine was 3 years ago. And if properly treated then, it would have ended there, maybe even for good. Maybe not, but the chances are..... I'm really glad to see everyone else here is telling you the same thing. Must be a sign, right?
Lani
SCC part glossectomy 3/06, recur 8/06 glossectomy, floor of mouth, part of jaw removed, RT/chemo thru 10/12/06, PET clear 7/08
"A bend in the road is not the end of the road, unless you fail to make the turn"
Passed away 12/14/08
| | | | | Joined: Sep 2008 Posts: 10 Member | | OP Member
Joined: Sep 2008 Posts: 10 | Hi all,
Thank you for your responses. I agree that I probably do need a second opinion, but I am afraid that if I wait the cancer will spread.
What if I ask for the laser for the cancer and ask to wait on removal of glands? He said the reason he wanted to remove the glands was for the precaution of spreading.
Jerry, I notice you had 30 nodes removed, did the doctor do this when he/she did the SCC? What exactly is the SCC? Was laser offered to you instead of the glossectomy?
Sorry to sound so ignorant, but this is all new to me.
Thanks you
Love, Becky
9/18/08 Diagnosed SCC/Stage 2 Left floor of mouth and tongue.
9/26 Laser Surgery
10/9 First appt. at CTCA in Chicago
11/24 RO Tomo TX (5x wk)for 7 wks
11/26 Port Insertion w/access
12/2 -Chemo/Cisplatin (1X wk) 123 min. for 6 wks
12/15 - Peg Tube Insertion
| | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Becky,
You are not ignorant. This is all new to you and you need to be educated. It appears that your doctor has not taken the time to explain your situation to you in a manner that you can understand. This is another reason to get a second opinion by a specialist, hopefully at a comprehensive cancer center (CCC)
I assume that the glands that you refer to are lymph nodes. They are not removed "to make sure that the cancer doesn't spread". They are removed to make sure that the cancer hasn't spread to them. It is not a preventive treatment. I'm not sure if your misunderstanding of the lymph node removal is on your part of the doctor's, but this again, is another reason for another opinion.
To answer your questions, I had the partial glossectomy (part of tongue removed) at the same time as the lymph node removal. SCC is squamous cell carcinoma, which is the most common cancer of the oral cavity. Laser removal was not an option given to me.
Waiting is certainly not a good thing, but entering into treatment with someone that appears to not be the right person, is much worse. Don't ask for partial treatment. Get on the phone after checking out the link above given to you by Pete. You may he to travel, but it is well worth it.
Good luck.
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
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