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#28675 03-19-2007 07:08 PM
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TXJesse Offline OP
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Any squamous cell cancer upper lip patients out there? Mine is poorly differientiated with perineural invasion. This cancer is very rare and very aggressive. My dr. at MD Anderson Cancer Hospital in Houston said he had never seen it and I received wrong treatment...radiation is wrong place after surgery.

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How lucky for you that you live in Houston, where MDA is located, so at least you don't have to worry about not getting the best treatment.

Where was your first treatment....the wrong one? what did they do then, and what do they plan to do now?

I'm curious....are/were you a tobacco user? or did you just get this surprise out of the blue?

I sure do hope you that MDA can help you to get back on track and on the road to good health again. Please stay in touch with us on the forum!


Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
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TXJesse Offline OP
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Deara Colleen, Lucky I am in Houston? No! MD Anderson Cancer Center took away most of my already slim chances for survival. It was at MD Anderson that I was not radiated properly. If I had been radiated properly my chances of survival could have been around 60%, now they are about 15-20%...same as if I had not had radiation. And I have all the terrible side effects from radiation and many keep getting worse. And at MDA they used the wrong lead shield on me near the end of radiation course and tore open my face, the lip and nostrils and gave me a staph infection. The staff at MDA laughs about how they have never seen a doctor was his hands in head and neck radiation and that spreads infection. I immediately went elsewhere for a culture and was started on antibiotics.Fortunately the staph was not MRSA or it could have killed me or at least put me in the hospital for months. Don't believe the advertisements in the media about MDA being a good place to go. They wouldn't have to spend the millions of dollars they spend on advertising if MDA was a good place for cancer treatment. Local doctors know MDA is not the place to send a patient. The patients I met at MDA were all from out of state, usually rural patients whose doctors didn't know MDA was to be avoided. My surgery was OK, it was not at MDA. I am now going soon to Johns Hopkins, but MDA has done the damage and I don't know what can be done at Hopkins.
No, I never smoked nor drank.I am female. I have eaten organic food for the past 20 years. I don't eat red meat, fried foods, sugar, or drink caffeine. I have always lived a healthy life. I do yoga and meditate and have for years. This is genetic. No one in my family has ever survived oral cancer. My cousin and I have it now, he at the base of his tongue and wrapped around his carotid and jugular, but chemo and radiation a year ago put him in remission. He is 6'2" and weighed about 195 lbs, now he weighs 134 lbs. He does not live in Houston and went to a smaller hospital for treatment. A good, small treatment center is usually better than the biggest grant-crazy institutions. At MDA the first priority is getting grants, second is careers and training docs. and a distant third are patients. Read what Lance Armstrong says about how he fled from MDA, he knew they would kill him. They told him he would never ride a bike again. It is in his book, It's Not About the Bike. I think on page page 102. In person he speaks even more strongly against MDA.

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Wow! What a story! My heart goes out to you. I hope that Hopkins can offer you something that improves your situation. This is a beast of a disease, for sure. Your story is disturbing, to say the least. I was treated at a university medical center at which I received excellent treatment, though I wished that I had gone to MDA, just for my peace of mind. Maybe I am fortunate that things worked out the way they did. Please keep us posted on your progress.


Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
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Jesse - I can highly recommend Dr. Ralph Tufano at the Head and Neck Center at Johns Hopkins Hospital - ENT and one of their best surgeons plus the fact that he is a wonderful, caring human being. Good Luck to you.
-------------------------------------------------
CGiver,husband,dx 5/06 SCC left tonsil,3 lymph, nodes,HPV+,IMRTx35, cisplatin/tarcevax35, neck dissection 11/06-starting HPV vaccine trial 04/07 JohnsHopkins


MARTY-Caregiver to husband (non-smoker/non-drinker)Dx 04/06 SCC Stage IV left tonsil-3 lymph nodes,HPV+,Tx 35xIMRT,35xcisplatin/tarceva,neck dissection 11/06, beginning HPV vaccine JHopkins 04/07.
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You are certainly welcome to have your opinion about any institution, doctor or whatever. But these boards are meant to be a place to share CONSTRUCTIVE ideas and help for each other, not to trash any particular place. I would appreciate it if you would abide by the rules of the board that you agreed to when you signed on, that


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.
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Brian makes a really good point about the importance of second opinions, ideally one should be gotten even when you are being treated at a CCC. I was getting treatment by a radiation medicine extension of a CCC (with all the ROs at the CCC evaluating whether I needed radiation)and they originally said I didn't need radiation. I went to another CCC for a seocnd opinion (because my ENT was not convinced the first advice was correct and also informed me that the vote on whether I needed radaition had been a close one) and the second opinion CCC was very clear that I did need radiation. BOTH of these were CCCs, although it turns out my radiation oncologist had apparently failed to inform some of the others voting on that decision of all of the risk factors associated with my tumor.

Often when we give advice, we tell people if they're at a CCC that's all that matters. But CCCs can make mistakes as well--a second opinion is ALWAYS a good idea if you can get one.

Nelie


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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Jesse posted again, and again did not abide by the rules of the board that we are not here to trash individuals or institutions which she did again in her posting this date. That statement was made in the post answer to hers, as well as in the terms of agreement that she agreed to in order to participate here. This most recent post was deleted and this thread is closed. The rules of the message board, especially when they are related to using this forum to bad mouth any particular doctor or institution are set in concrete and everyone agrees to them as a process of getting a screen name and password. I understand that she is very angry, and exchanged emails with her about all this before her first post here. But we have rules for reasons, which include liability, and individuals that participate in these forums must adhere to them.


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.

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