#27401 05-18-2005 12:51 PM | Joined: Mar 2005 Posts: 54 Supporting Member (50+ posts) | OP  Supporting Member (50+ posts)
Joined: Mar 2005 Posts: 54 | Hi All,
I haven't been on the site in a while, for my son just started little league baseball and work has had me very busy. This disease has me a bit neurotic also, however, I try to stay positive. Many people replied to my earlier posts and I truly appreciate the support and advise, although I did not follow the advice of those who recommended a Comprehensive Cancer Center (not by choice...however). Since my surgery, I have had 2 biopsies, one negative (inflammation), the other hyperkeraytosis w/moderate to severe dysplasia. The ENT who has been treating had me scheduled for surgery, cancelled brcause it looked better (he said could have been because of the surgery) and was going to refer me to Roswell Park for Photodynamic therapy. The biopsy was almost 2 months ago and they have now determined that I am not a candidate for th PDT. I was looking very forward to being treated in a CCC. I have since discovered another suspicious "lesion" in the area of the primary tumor (a bit more anterior) on my lower inner gum. I am EXTREMELY concerned and very scared. I am about 3 1/2 months post-op (surgical excision w/no rad tx or chemo), was given a pretty darn good prognosis, but have this TERRIBLE fear of recurrence...esp with dysplasia and a new area that has not healed in over 3 weeks. I see my ENT tomorrow and am sure another biopsy is in store. Any advise or suggestions about other treatment options, or what I should do would be GREATLY appreciated. I may just be making myself a nervous wreck for nothing, but I don't think so! Any advice would help! Thank you so much, and I wish all of you the VERY best in you recoveries!!!!
Rick T
Stage II SCC(T2N0M0). Dx:Jan.05 Surgical removal w/Neck Dissection (nodes clear) Feb 1,2005.
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#27402 05-18-2005 02:27 PM | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | Rick, I'm confused. Did you ever go to Roswell Park to get a true second opinion from them? Whether you are a candidiate for PDT or not, you may find their opinion is that you need some other treatment. I think your mind would be set at ease one way or another by having someone at SOME comprehensive cancer center really look over your whole history and give you their opinion.
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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#27403 05-18-2005 06:21 PM | Joined: Mar 2004 Posts: 76 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Mar 2004 Posts: 76 | Rick, "Neurotic" DOES NOT APPLY to someone who has had SCC in the oral region & is now diligent about anything in that region. You were advanced by one stage to what I had removed and I think with my first treatment (yesterday)at a major cancer center(since my DX Jan 2004, concurrent partial glossectomy, numerous biopsies for lesions, etc and thyroid lobectomy) that this is the first time I can truly say, I do not fear a recurrence. Because of the thorough screening they gave me. Do go, if you can, the relief is atronomical and no matter what the Drs, H & N, ENT, Dentist, whomever come up with, the assurance is there when the Cancer center tells you, all clear & healthy looking & healing well. I had to share my relief in the hopes that you get some also. Best of luck,
Maria
01/04 SCC of tongue base, T1N0M0
03/04 Partial glossectomy
04/04 Rad
12/04 Throidectomy(follicular cancer)
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#27404 05-18-2005 07:14 PM | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | Rick, I am assuming you know what I'm about to say, but reading your story again, I thought I'd say it just in case you don't. You do not need to go through your ENT, or wait for his reommendation of who to go to, for the second opinion. Some comprehensive cancer centers have web pages you can go to as a patient to fill out a request for a second opinion---as simple as that. That's what I did (in my case, my ENT recommended I get a second opinion somewhere but I did the rest of the legwork myself).
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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#27405 05-19-2005 05:48 AM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Apr 2004 Posts: 837 | Rick,
I agree wholeheartedly with Nelie. Given your past experience with SCC, don't let anyone stand in your way when it comes to getting seen at a comprehensive cancer center.
Cathy
Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
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#27406 05-19-2005 12:14 PM | Joined: Feb 2004 Posts: 218 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Feb 2004 Posts: 218 | Rick, I too would strongly recommend that you go to the nearest comprehensive cancer center. According to the National Cancer Center (www3.cancercenter.gov), the nearest one is Roswell Park and the contact information is: Roswell Park Cancer Institute Elm & Carlton Streets Buffalo, New York 14263-0001 Tel: 716/845-5772 Fax: 716/845-8261 (Comprehensive Cancer Center) Their web site has a page specifically on how to get a second opinion - http://www.roswellpark.org/document_4310.html. Please don't wait. Best, Sheldon
Dx 1/29/04, SCC, T2N0M0
Tx 2/12/04 Surgery, 4/15/04 66 Gy. radiation (36 sessions)
Dx 3/15/2016, SCC, pT1NX
Tx 3/29/16 Surgery
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#27407 05-19-2005 12:40 PM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2003 Posts: 1,163 | Sheldon you are always so helpful with the informationyou share on this site. All I can add
is my support to you Rick. Please know that I and many others will be pulling for you.
Best Wishes, Danny Boy
Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.
Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06
Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
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#27408 05-19-2005 12:40 PM | Joined: Mar 2005 Posts: 54 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Mar 2005 Posts: 54 | You guys are awesome...Thanks!!!
Rick T
Stage II SCC(T2N0M0). Dx:Jan.05 Surgical removal w/Neck Dissection (nodes clear) Feb 1,2005.
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#27409 05-19-2005 12:45 PM | Joined: Mar 2005 Posts: 54 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Mar 2005 Posts: 54 | Thank you guys VERY Much!!!!
Rick T
Stage II SCC(T2N0M0). Dx:Jan.05 Surgical removal w/Neck Dissection (nodes clear) Feb 1,2005.
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#27410 05-19-2005 06:20 PM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2003 Posts: 1,384 Likes: 1 | Rick, I can't offer "advise" beyond the above suggestions. I will say that even if it is the worst, you will still have options. I can feel your anxiety and in fact it drags up some old feelings in myself.
Just remember; one day at a time.
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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