| | Joined: May 2009 Posts: 114 Senior Member (100+ posts) | OP  Senior Member (100+ posts)
Joined: May 2009 Posts: 114 | I went to University of Virginia Health Systems where I had my initial surgery in June. I did a new MRI and apparently a large area at BOM in the former surgical area is lit up with cancer.
My ENT ONC wants to do another surgery and the RO says radiation didn't work the first time, so doesn't recommend again.
I asked if they minded me seeking a 2nd opinion and they did not. They actually have set it up with John Hopkins in Baltimore. The nurseline at my insurance company recommended them.
I am hoping a doctor calls soon with an appointment. I think I lost 2 months when a resident took a biopsy from an area adjacent to but not at the former cancer site. The hospital seemed to find it more important to not admit to wrongdoing before finally retaking the biopsy from the area where they performed the initial surgery.
I am more frightened than I have ever been. In this scenario they want to remove teeth on the left side of my face. They want to remove jawbone to fix an area of bone they exposed and then a huge area of surgery to fix an radiation ulcer and cancerous area. Essentially all of the base of my mouth.
Has anyone here heard anything on how John Hopkins is with OC?
Age 52, T2 N0 M0 SCC of left anterior floor of mouth. Esophagoscopy, Direct laryngoscopy, Resection of left anterior FOM lesion w/ lateral tongue. left selective neck dissection levels I-IV. 5x6cm skin graft coverng excision. Finished 33-35 rad Tx. False recurrence 12-22-10 last surgery 2-15-10
| | | | | 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 | It's one of the best. They have lots of experience with oral cancer treatment, and have been one of the centers of research on HPV and oral cancers.
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.
| | | | | Joined: Oct 2008 Posts: 251 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Oct 2008 Posts: 251 | I see an ENT at Hopkins. When I first called them for a second opinion, I had no trouble getting an appointmnet within a few days. Send me a PM if you want more info; contact numbers, etc. I have not gone through the tx you have, but I like and trust this doctor.
Wishing you the best!
Catherine
2mm tumor excised 09/23/2008 (floor of mouth)
SCC (superficially invasive, well-differentiated)
Stage 1, T1N0M0
01/2009 and 01/2010 - PET/CT clear
Four and 1/2 years - NED!
"Detection can be easy, treatment is not!"
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Hisnibs, I can imagine the fear you are having. Good luck and you will be in my prayers at church in the morning.. I have to get an MRI of my area Tuesday the 12th. I'm not really looking forward to it. I know it's back by the way my mouth and thraot hurt. Good luck.
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: Sep 2009 Posts: 148 Likes: 1 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Sep 2009 Posts: 148 Likes: 1 | So sorry. Looks like Happy New Year...not so happy. March forward & press on.
BOT T3N2M0 No surgery, 38radiation treatments,4 chemo rounds, peg removed 11/08, still have a port. Treatments ended 6/20/08. So far, so Good ! "I know God won't give me anything I can't handle. I just wish He didn't trust me so much !"
*** Admin update --- Dianne has passed away on August 25, 2015 ***
| | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | For their Ear Nose Throat program they earned the top honors last year (2009) and third in cancer care out of all US hospitals...according to US News and World report. I don't think you can go wrong with Hopkins at all.
Hopkins and MD Anderson Houston are rated highest in both ENT and Cancer care in the US.
Good luck, keep strong
Eric
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: May 2009 Posts: 1,412 | So srry about this news. I will defnintely put you on the prayer list at church. I know how scary this must be for you. Keep strong and we are here for you. Vent all you want or need.
Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
| | | | | Joined: Apr 2003 Posts: 136 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Apr 2003 Posts: 136 | i was treated at Hopkins in 2001. my experience is all positive. best wishes to you... i think that Hopkins is as fine a hospital as you can find and their OC group is highly rated. the cafeteria at Duke in Durham, NC probably is better.
'01 diagnosis.. jaw hing and base of tongue. surgery not possible. JHU used radiation and chemo to seemingly rid me of the beast. peg for about 19 months. 100 cases of 24 cans of liquid food. 9 months eating therapy. 3x esophagus stretches. non-smoker. previously a social drinker.
| | | | | Joined: May 2009 Posts: 114 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: May 2009 Posts: 114 | I have Dr. Koch who appears to be the director of the Head and Neck Ceter. I am going in on the 15th of February. A Dr. Boheme (I think) is doing the jawbone and flap reconstruction. Thanks for your off of help.
Age 52, T2 N0 M0 SCC of left anterior floor of mouth. Esophagoscopy, Direct laryngoscopy, Resection of left anterior FOM lesion w/ lateral tongue. left selective neck dissection levels I-IV. 5x6cm skin graft coverng excision. Finished 33-35 rad Tx. False recurrence 12-22-10 last surgery 2-15-10
| | | | | Joined: May 2009 Posts: 114 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: May 2009 Posts: 114 | Hi Jim,
Good to see you since I dropped off for a while. Hope you are as well as can be.
Age 52, T2 N0 M0 SCC of left anterior floor of mouth. Esophagoscopy, Direct laryngoscopy, Resection of left anterior FOM lesion w/ lateral tongue. left selective neck dissection levels I-IV. 5x6cm skin graft coverng excision. Finished 33-35 rad Tx. False recurrence 12-22-10 last surgery 2-15-10
| | | | | Joined: May 2009 Posts: 114 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: May 2009 Posts: 114 | Thanks Brian and everyone who has posted back to me. Happy New Year!
I decided to go with John Hopkins and am being scheduled for surgery on the 15th. They will do a similar surgery as described above. They will remove teeth, the outer portion of bone in my jaw under the teeth removed. They will excise the cancer areas BOM but also recommend removing about half of my tongue. They will reconstruct using bone from a leg and tissue as well as tissue from a forearm.
They are calling this my last best chance at removing all of the cancer.
I still do not know if this is cancer that was left after last surgery or something new. I am assuming it was left because a skin graft there never looked like it healed correctly. A dentist told me it looked like it was 2 weeks old after a surgery when it was close to 6 months old.
I guess I should move this conversation to the recurrance forum
Last edited by hisnibs; 01-18-2010 04:58 AM.
Age 52, T2 N0 M0 SCC of left anterior floor of mouth. Esophagoscopy, Direct laryngoscopy, Resection of left anterior FOM lesion w/ lateral tongue. left selective neck dissection levels I-IV. 5x6cm skin graft coverng excision. Finished 33-35 rad Tx. False recurrence 12-22-10 last surgery 2-15-10
| | | | | Joined: Oct 2008 Posts: 251 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Oct 2008 Posts: 251 | He is the ENT at Hopkins I see. I think you have made a wise decision.
Good luck with the surgery, and keep us posted about how you are doing!
Catherine
2mm tumor excised 09/23/2008 (floor of mouth)
SCC (superficially invasive, well-differentiated)
Stage 1, T1N0M0
01/2009 and 01/2010 - PET/CT clear
Four and 1/2 years - NED!
"Detection can be easy, treatment is not!"
| | | | | Joined: Nov 2009 Posts: 396 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Nov 2009 Posts: 396 | good luck with your surgery. keep us updated. i will send prayers out to you.
Teresa
-----------
CG to ANDY. Nasopharyngeal Carcinoma (NPC)
T2N2cMxG4 stage 4. 43 @ dx 8/31/09
tx 9/21/09-11/06/09 cispatin/docetaxel/5-FU X3
PORT 9/9/09, PEG 12/07/09
35 IMRT-1/wk carbo 11/30/09-2/3/10
tx stopped due to complications
IMRT BOOST 3/08-3/12/10
PET 4/12/10 CLEAR!
PEG out 4/14/10
| | | | | Joined: May 2009 Posts: 114 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: May 2009 Posts: 114 | Thanks, I am new at prayer. I have been seeking spirituality in all the wrong places and cancer got me to look at what is right in front of me. I will be praying for OCF and it's members always.
Age 52, T2 N0 M0 SCC of left anterior floor of mouth. Esophagoscopy, Direct laryngoscopy, Resection of left anterior FOM lesion w/ lateral tongue. left selective neck dissection levels I-IV. 5x6cm skin graft coverng excision. Finished 33-35 rad Tx. False recurrence 12-22-10 last surgery 2-15-10
| | | | | 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 |
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: Aug 2008 Posts: 238 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Aug 2008 Posts: 238 | Hang in there. It sounds like you've got some great docs and a good place to take care of the surgery you need. Will definitely be keeping you in my prayers. Take care.
CG/Mom: 5 1/2 years SCC upper palate,4 recurrences, surgeries, chemo & radiation. Mom went to Heaven 1/21/11.
| | | | | Joined: Jul 2007 Posts: 211 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jul 2007 Posts: 211 | Dr. Koch is my husband's ENT and I have the greatest respect and admiration for his skills and compassion. My thoughts are with you as you go through this as I can only begin to imagine how frightening it must be to be preparing for your upcoming surgery.
Take care.
Sophie T.
CG to husband: SCC Stage 4, T4, N1, M0; non-smoker and very light social drinker; HPV+
induction chemo begun 7/07; chemo/radiation ended 10/10, first cat scan clear; scan on 5/9/08 clear, scan on 10/08 clear; scan 1/09 clear; scan 1/10 clear; passed away July 2, 2016
| | | | | Joined: May 2009 Posts: 114 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: May 2009 Posts: 114 | Dr Koch is a great Doctor! The University of Virginia Med Sys told me I had a recurrance of BOM cancer, I think the Pet scan showed I had no other active areas, and Dr. Koch found I had no cancer recurrance! So I am seeing him on monthly visits for a while. Probably 2 years. 
Age 52, T2 N0 M0 SCC of left anterior floor of mouth. Esophagoscopy, Direct laryngoscopy, Resection of left anterior FOM lesion w/ lateral tongue. left selective neck dissection levels I-IV. 5x6cm skin graft coverng excision. Finished 33-35 rad Tx. False recurrence 12-22-10 last surgery 2-15-10
| | | | | Joined: May 2009 Posts: 114 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: May 2009 Posts: 114 | Oh... and Knock on wood....
Age 52, T2 N0 M0 SCC of left anterior floor of mouth. Esophagoscopy, Direct laryngoscopy, Resection of left anterior FOM lesion w/ lateral tongue. left selective neck dissection levels I-IV. 5x6cm skin graft coverng excision. Finished 33-35 rad Tx. False recurrence 12-22-10 last surgery 2-15-10
| | | | | Joined: Oct 2008 Posts: 251 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Oct 2008 Posts: 251 | [quote=hisnibs]Dr Koch is a great Doctor! [/quote]
There are several of us here that agree with you!
Congratulations!
Catherine
2mm tumor excised 09/23/2008 (floor of mouth)
SCC (superficially invasive, well-differentiated)
Stage 1, T1N0M0
01/2009 and 01/2010 - PET/CT clear
Four and 1/2 years - NED!
"Detection can be easy, treatment is not!"
| | | | | Joined: May 2006 Posts: 720 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2006 Posts: 720 Likes: 1 | I'm another one who agrees -- he's my husband's doc.
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.
| | | | | Joined: Oct 2008 Posts: 251 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Oct 2008 Posts: 251 | I am not the only one on this Forum to have benefited from Leslie's sage advice. Thank you Leslie for steering me in the right direction toward JH.
Catherine
2mm tumor excised 09/23/2008 (floor of mouth)
SCC (superficially invasive, well-differentiated)
Stage 1, T1N0M0
01/2009 and 01/2010 - PET/CT clear
Four and 1/2 years - NED!
"Detection can be easy, treatment is not!"
| | | | | Joined: May 2006 Posts: 720 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2006 Posts: 720 Likes: 1 |
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.
| | | | | Joined: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2006 Posts: 756 Likes: 1 | It is very reassuring to read the many favorable recommendations on Dr. Koch at Johns Hopkins � he is doing my surgery next week!
Susan
SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2022 (ORN)
| | | | | Joined: Aug 2007 Posts: 42 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Aug 2007 Posts: 42 | My Mom, Minnie, went to Dr Koch as well. He is a wonderful man. His assistant Cheryl is one of the nicest women I have ever met!
Lost my mother, Minnie, to Oral Cancer October 29th, 2008. I am so thankful she had the OCF to help her through her five year struggle.
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