#28460 01-04-2007 09:53 AM | Joined: Aug 2005 Posts: 158 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Aug 2005 Posts: 158 | he is now Massachusetts Bill. I doubt there is any mechanism for changing ones name so I guess I will remain Florida Bill here.
CT scan of neck and chest on 12-29-06 revealed a lesion at the base of my tongue, in the general vicinity of the previous tumor.
PET/CT scan done on 1-3-07 revealed an "intense increased uptake at the level of the left lingual tonsillar region, correspoiding to the area of ulceration seen on the CT portion of the study."
Today, 1-4-07, I met with a doc at Mass Eye & Ear Infirmary in Boston. He basically confirmed what I already knew from the findings of the CT and PET/CT scans. His suggested approach if to preform a biopsy of the lesion and go from there. Yes, I pretty much expected that.
He then asked if I wanted to know what to expect should the biopsy tell us what we really do not want it to. I requested he not hold back anything and he let me have it all. Since about 1:00 today my constant mantra has been, "It isn't until they say it is!"
I will be contacting Dana Farber Cancer Institute in the VERY near future for a second opinion. Any and all treatment will be done there and nowhere else!!
I will not break any site rules by asking for recommendation here in the open. However, for you folks that may have been treated at Dana Farber I would grately appreciate you contacting me via Private Message with any recommendations you may have. I will likely be looking for the best of the best surgeon I can find at Dana Farber.
Thanks in advance. Bill - winner of the first battle and the guy I will place all my money on this time around too.
No love, no friendship can cross the path of our destiny without leaving some mark on it forever. - Francois Mauriac
Thank you for leaving your mark.
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#28461 01-04-2007 09:59 AM | Joined: Sep 2005 Posts: 325 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Sep 2005 Posts: 325 | Bill, I sent you a PM before I read your latest news. I am so sorry to find you back in the battle again, but I have no doubt of your perseverance, perspicacity or patience. You will win this one!
Andrea
SCC L lat tongue,Dx 9/15/05 T1N0MX L MND and L lateral hemiglossectomy 10/03/05. Recurrence 11/15/06 2nd surgery 12/04/06 hemiglossectomy 3rd surgery 01/15/07 tonsillectomy Radiation 01/25/07 to 03/08/07 3-D/CRT X 30
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#28462 01-04-2007 11:35 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2004 Posts: 1,116 | Bill, I am hoping and praying it is not c again. God Bless, Love, 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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#28463 01-04-2007 11:35 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2004 Posts: 1,116 | Bill, I am hoping and praying it is not c again. God Bless, Love, 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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#28464 01-04-2007 11:55 AM | Joined: Sep 2006 Posts: 493 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Sep 2006 Posts: 493 | Bill,
Sorry to hear you have to go through this again. You seem very positive and I'm definately betting on you! Good luck and my prayers are with you.
Tim Stoj 60 yr old. Dx Jun 06 with BOT Stage IV. Neck dissesction on 19 Jun 06. Started Tx on 21 Aug 06/completed 33 IMRTs and 3 CT (2 Cisplat & 1 Carboplat) on 5 Oct 06.
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#28465 01-04-2007 12:45 PM | 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 | Bill,
I assume that the Tx alternatives you were told are unacceptable since you didn't go into any details. I want to mention 2 Tx protocals that you may not of heard of that may warrant you looking into.
First one....I am not a doc but I have read a recent article on a new emerging Tx involving protons that can deliver it's strike more precisely and with more potency and cause less adverse side effects than IMRT. It's called IMPT or Intensity Modulated Proton Therepy. It's only being used at 5 U.S. locations and one of those is Mass General Hospital in Boston. The article was about MD Anderson which is also one of the 5. Basically the IMPT is designed to penetrate the skin with minimal damage to non targeted cells and once it reaches it's tumor, the proton is programed to conform to the tumor and deliver it's full impact. The article said it's not suitable for all cancers but they did mention Head and Neck cancers as one of the types of cancers that they have used it on. Go to MD Anderson's web site for additional info.
Second one...A few months ago a poster discussed that he was only receiving a cocktail of chemos and NO radiation and it was his first occurrance of SCC. I haven't seen any further posts from him but if his docs were willing to treat him with just chemo to kill his cancer it might be useful to you.
Hope this info may be helpful.
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.
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#28466 01-04-2007 01:56 PM | Joined: Oct 2006 Posts: 248 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Oct 2006 Posts: 248 | Bill no matter what happens to you -- YOU will always be a WINNER in my book. Boston has some of the best cancer minds as well as hospitals in treating cancer, and with a patient like you that's a win- win combination. I don't live that far away so if you need anything please don't hesitate to let me know.Maybe we can talk a little baseball together to get our minds of this awful disease.
Mark D. Stage 3 Nasopharynx dx10/99 T2N3M0 40xrad 2x Cisplatin 5FU. acute leuk 1998.
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#28467 01-04-2007 03:13 PM | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: May 2002 Posts: 2,152 | Bill, That is just ugly news. Surgical biospy asap is probably the best that way there is no guessing. Hopefully they caught the reoccurence early. Been thinking about you and wondering how you were doing. We are all pulling for you.
Take care, Eileen
---------------------- Aug 1997 unknown primary, Stage III mets to 1 lymph node in neck; rt ND, 36 XRT rad Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND June 5, 2010 dx early stage breast cancer June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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#28468 02-04-2007 08:46 PM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2003 Posts: 928 | Bill.... we just wanted to let you know we are thinking of you and wishing for the best. Take care Marica
Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
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#28469 02-11-2007 05:14 AM | Joined: Jan 2003 Posts: 95 Senior Member (75+ posts) | Senior Member (75+ posts) Joined: Jan 2003 Posts: 95 | Bill and David my husband is in a simular situation 4 yrs ago ca base of toungue radiation and chemo now second lesion biopsy positive oncologist is sending him to mass general for consult.the ent didn't want to consider surgury because of the extent of damage to his abiliy to eat or speak . Please keep me posted wih any info you get and I will do the same. Take care Diane | | |
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