| | Joined: Oct 2010 Posts: 50 Supporting Member (50+ posts) | OP  Supporting Member (50+ posts)
Joined: Oct 2010 Posts: 50 | My husband Bob was diagnosed with stage three left retromolar trigone & alveolar ridge SCC T2N1MO on Sept. 16 2010. Life has been on stand still since. I found your forum and it seems like just what I have been looking for. We have been through so much just trying to get seen by the right doctor. Today was just another day of a let down.
A little history my husband is retired military, we will have to go through VA. Because of where Bobs tumor is he has to have a Emory specialist the one we will eventually see is just that. He does a lot of work at the VA but we can't see him till november 4th.
My fear is how much will it grow between now and then. A week ago you couldn't feel the lympnode by hand now you can, and when he first went to the doctor the tumor was less then 2cm now it is 3.6cm .We have had no treatmeant so far.The only he has had is pain medicine. Any advise would be great
Deb taking care of Bob, left retromolar tirgone&alveolar ridge SCC stage IV pT4anomx
11/3/10 partial mandiblctmy,trech,chest flap
11/9/10 Trech out, PEG in
1/19/11- 3/9/11 Cisplatin x3, IMRT x33
| | | | | Joined: Aug 2010 Posts: 157 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Aug 2010 Posts: 157 | Mine was very agressive and caused extreme pain, I am 28 and had surgery on the 16th. I had SCC of left lateral tongue stage II then possible III at surgery. Just try and keep him calm but as well put a foot on it, You have come to the perfect place for support, I dont know what I would do without OCF. If my opinion does not help any I am sure someone else will know much more. Brian is always a huge help!
Your Friend
Nathan
SCC left lateral tongue, left neck dissection. 2 nodes positive. 3 All Clear then ITS BACK 8/23/11 Shows 1cm in tongue in CT SCAN, Radial Free Arm Flap with Radical Neck Dissection 9/20/11 , All Nodes Negative, But Tongue Tumor Poorly Differentiated. Awaiting next step in treatment on 10/5/11... RIP Nate 7/28/12
| | | | | Joined: Oct 2010 Posts: 50 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Oct 2010 Posts: 50 | Thanks it does help to have people to talk to that understand how I feel .I do my best to stay calm for him. He has always been my rock now it is my turn. Good luck to you. Do you have to take any treatments. like I said this is all new to me so if I ask to much please let me know
Deb taking care of Bob, left retromolar tirgone&alveolar ridge SCC stage IV pT4anomx
11/3/10 partial mandiblctmy,trech,chest flap
11/9/10 Trech out, PEG in
1/19/11- 3/9/11 Cisplatin x3, IMRT x33
| | | | | Joined: Feb 2007 Posts: 790 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Feb 2007 Posts: 790 | Hi Deb,
I know how you feel. Waiting a month seems like an eternity. The thing is with these surgeries it is pretty complex. They have to put a team together and plan it out. Nov 4th is a month. I had to wait a month too. It was terrible as you just want this horrible thing gone from your body forever.
They won't do radiation or chemo before because it will be too hard on him to do that and then have surgery. He'd probably have to wait longer to heal up from that.
Get the best Dr. you can. A lot of what you may think is the tumor growing is just more swelling because the body wants it gone... but I know its troublesome that it is growing... See what you can do to move up the date but I'd stick with getting the best Dr. you can versus getting an earlier date.
Hang in there!
Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor
Finished all treatments May 25 2007
Surviving!!!
| | | | | Joined: Oct 2006 Posts: 383 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Oct 2006 Posts: 383 | Deb/Bob:
Hello, and welcome. This website and forum is a wealth of assistance as you go through this journey. Every second counts but as mentioned above the pre-treatment stages take a little time and planning. Just get the best team you can find and then ACT on it! Ask questions, take good notes, do your homework, trust your heart. Everyone here is a wonderful support system.
Stay in touch and best wishes to you,
Steve
SCC right side BOT/FOM; DX 1-25-06; Neck dissection/25% of tongue removed 2-17-06. Stage 2 Recurrence 7-06: IMRTX35 & 3X Cisplatin ended 10-18-06. Tumor found 03/18/13; Partial Glossectomy 03/28/13 left lateral tongue. Nov. 2014; headaches,lump on left side of throat. Radical Neck Dissection 12-17-14; Tumor into nerves/jugular; Surgery successful, IMRTX30 & 7X Erbotux. Scan 06-03-15; NED! 06-02-16; Mets to left Humerus bone and lesion on lungs-here We go again! Never, Ever Give Up!
**** PASSED AWAY 10/8/16 ****
| | | | | Joined: Sep 2009 Posts: 229 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Sep 2009 Posts: 229 |
Patty
08-10-09 Partial Glossectomy w/suprahyoid neck dissection
SCC T1NOMX Stage I | 46 years old
| | | | | 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 | Deb,
I would be that squeaky wheel and call them often, every day, to let them know it's growth history and to always remind them that you are available for a cancellation or after hours. Beg if you have to. Crying can't hurt. Not that familiar with the VA but I would also call whoever is in charge of the case and keep after them. I personally would not want to wait another month just to see this doc.
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | The 1st Oncologist and ENT I saw told me I needed rads and chemo. Naw, I wanted other opinions and went to 2 bigger and better known hospitals for their opinion. WRONG. Listen to what advice you get from the people here.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Aug 2010 Posts: 157 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Aug 2010 Posts: 157 | Deb,
I am currently in the post surgery and " get ready for radiation " stage of treatment. Like said by others, I felt like I was never going to get to surgery and that the possibility of a cancellation may happen. Do what you feel is right in your heart and for Bob, because the first set of doctors I met were a bit nerdy and dingy, lol. But I tell you when the big bad boss came in, his presence was felt and he treated my disease like the enemy and I felt he cared about me. My decision was made and I let my mother and fiancee know that I did not want to search anymore and I had no insurance anyway, had surgery the 16th and I am just living it up and getting fat for surgery.
Your Friend,
Nathan
SCC left lateral tongue, left neck dissection. 2 nodes positive. 3 All Clear then ITS BACK 8/23/11 Shows 1cm in tongue in CT SCAN, Radial Free Arm Flap with Radical Neck Dissection 9/20/11 , All Nodes Negative, But Tongue Tumor Poorly Differentiated. Awaiting next step in treatment on 10/5/11... RIP Nate 7/28/12
| | | | | Joined: Oct 2010 Posts: 50 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Oct 2010 Posts: 50 | IT is great to have all this advise. I called today and they moved Bobs app.up to the 19 of oct. I am greatful for that. We have never been through a illness where getting the right help has been so hard.I do believe we are on the right path though. Once you get in to VA and the first doctor see's you "I have heard if it is critical you move right along". I hope that is right. My next question is how to help Bob through this. I am a strong person so I hate to let people see me cry. Bob is the one person that I do lean on, now that it is his illness I need to be there for him. I don't want to scare him but I am the person on this internet I know what he is about to endure. I just don't know what information he can handel. Should I just leave it to the professionals.
Deb taking care of Bob, left retromolar tirgone&alveolar ridge SCC stage IV pT4anomx
11/3/10 partial mandiblctmy,trech,chest flap
11/9/10 Trech out, PEG in
1/19/11- 3/9/11 Cisplatin x3, IMRT x33
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