| Joined: Apr 2010 Posts: 201 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Apr 2010 Posts: 201 | Hello everyone!! My name is Susan and my sister was diagnosed with Stage 2 tongue cancer yesterday by a deep tissue biopsy. My family and I are devestated. She has been a long term smoker but you never think it would happen to anyone in your family. Well were we ever wrong.. I was wondering if anyone had treatment in NYC on here? We are so confused on who to go to. Any information would be greatly appreciated. She os getting out of the hospital today and we would like to follow up with a speacialist as soon as possible.
CG to Sister (42). Smoker quit @ diagnosis Dx 4/20/10 SCC T2N0M0, Rside of tongue Hemigloss R neck dis, all nodes removed 6/2/10, Trach and NG in, home 6/8/10,8/18/2010 start erbitux x6, 30 IMRT end 10/11/10 with only 3x erbitux due to reaction and one week off of rads 1/10/2011 Clear PET!!!
| | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,219 | In NYC you have access to one of the finest Comprehensive Cancer Centers (CCC) in the world. Run, don't walk her to Sloan Kettering.
I also want to point out that if your sister hasn't stopped smoking yet, she must stop immediately. The success of her treatment can be strongly compromised by her continuing to smoke.
Good luck and welcome to OCF, the best source of support and information on the web. Come here often and you will become part of our family of very special people. It would be good if you can get your sister on here, too.
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: May 2006 Posts: 720 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2006 Posts: 720 Likes: 1 | Look for posts by SusanW, who is also in NYC and whose husband is currently being treated at Sloan. (To find them, click on Advanced under the Search box in the upper right corner of each forum page; then type SusanW into the Display Name Search box.)
If you have any specific questions for her, you can view her profile (which includes an e-mail address) or send her a private message by right-clicking on her name in any of her posts, or click on User List at the top of each forum page and find her profile.
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: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 618 | Susan,
If you look at my signature line you will find that I was a heavy smoker. I quite two weeks after diagnosis (only a smoker can relate to taking 14 days to quit). If your sister needs any help in that regard, let me know. I have a few tips that might help.
Kelly Male 48, SCC (Soft Palet) Rt., Stage 1, T3n0m0, Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09 04-20-10 NED 8-11 recurrence, node rt. neck N2b 10-11 33 IMRT w/chemo wkly 3-12-12 PET - residual cancer 4-12 5 treatments with Cyberknife & Erbitux 6-19-12 Pet scan CLEAR 12-3-12 PET - CLEAR
| | | | Joined: Feb 2010 Posts: 235 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Feb 2010 Posts: 235 | Leslie, you are so good at finding posts. I've used you as a resource since the day I got on here.
We use Sloan and I can't say enough good things about it. We are half way through the treatment and every person we have met has been professional, empathetic and very knowledgeable. Feel free to shoot me a message if I can answer any questions about Sloan.
CG to Spouse BOT, Chemo and radiation started on March 29,2010 Ended on May 14,2010. LET THE HEALING BEGIN!!!
| | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | Welsome to the boards. Sorry you had to join us. This is an amazing place for support and family.
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 2010 Posts: 201 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Apr 2010 Posts: 201 | Thank you so much for your responses! I am just in such shock right now over this. You can only hope you make the right decision for the right doctor. She was misdiagnosed for 7 months now and we finally found someone to do a biopsy, which came back yesterday as cancer. It is uplifting though to come on this forum and see so many survivors. We are debating between two hospitals right now Sloan and Mt Sinai. My sister is saying which ever one has an appointment first is the one she is going to. She just wants it out!! I will try and get her on here but I think she is in the denial state. Again thanks so much and any information would help..
CG to Sister (42). Smoker quit @ diagnosis Dx 4/20/10 SCC T2N0M0, Rside of tongue Hemigloss R neck dis, all nodes removed 6/2/10, Trach and NG in, home 6/8/10,8/18/2010 start erbitux x6, 30 IMRT end 10/11/10 with only 3x erbitux due to reaction and one week off of rads 1/10/2011 Clear PET!!!
| | | | Joined: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 618 | Leslie,
This will take a few weeks at either facility. She wants the first shot at killing this disease to be the only one she has to take. That means going to the best center. I think Sloan is the best for Oral Cancer in your region.
Kelly Male 48, SCC (Soft Palet) Rt., Stage 1, T3n0m0, Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09 04-20-10 NED 8-11 recurrence, node rt. neck N2b 10-11 33 IMRT w/chemo wkly 3-12-12 PET - residual cancer 4-12 5 treatments with Cyberknife & Erbitux 6-19-12 Pet scan CLEAR 12-3-12 PET - CLEAR
| | | | 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 | As Jerry says get her to a CCC ASAP.
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: Feb 2010 Posts: 235 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Feb 2010 Posts: 235 | I don't know if I'm supposed to say things like this so feel free to delete this post if I'm out of line. For this kind of thing, I think there is no contest between MT Sinai and Sloan.
And the advice to go to a CCC is invaluable.
CG to Spouse BOT, Chemo and radiation started on March 29,2010 Ended on May 14,2010. LET THE HEALING BEGIN!!!
| | |
Forums23 Topics18,168 Posts196,924 Members13,103 | Most Online458 Jan 16th, 2020 | | | |