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#2716 06-10-2004 11:00 AM
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Just curious if anyone could tell me about MD Anderson in Houston. My radiation oncologist recommended them if we wanted a second opinion on what to do with me next. My ENT called it "The Big House".

I guess at this point I'm curious what they could do for me that I couldn't already get here in Arizona. I've already had the neck dissection last week...

It was disheartening to read on MD Anderson's Web site that the prognosis for tongue cancer without node involvement was "excellent" but when there is node involvement prognosis "deteriorates" -- that hit me pretty hard today... I always felt like I was among the excellent ones, but alas... frown


Tongue cancer (SCC), diagnosed Oct. 2003 (T2 N0 M0). Surgery to remove tumor. IMRT Radiation 30x in Dec 2003 - Jan. 2004. Recurrence lymph node - radical neck dissection June 2004. Second round of rad/chemo treatments ended Sept. 2004.
#2717 06-10-2004 11:53 AM
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My husband was treated at MD Anderson, four years ago this month. I would highly recommend it to anyone dealing with cancer. Each case is brought before the tumor board, so you get more than one opinion on the best possible treatment for your particular situation. They were very encouraging throughout our treatment concerning my husband's prognosis. We go back there once a year now for check ups.


Julie
Wife to Kelly
SSC tonsil Stage IV
July 2000
#2718 06-10-2004 12:59 PM
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Hold your head up high Eric, It's natural to get down now and than. I was always told the numbers mean nothing to me. I will either survive or not. You have had an excellant attitude and your postings reflect your strength. Keep the faith!!!

I have heard nothing but good things about MD Anderson.

Best wishes, Dan


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
#2719 06-10-2004 01:05 PM
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Eric,

M.D. Anderson is one of the top cancer centers in the country, if not listed at the top. Memorial Sloan Kettering in New York is usually about number 2.

Don't let the "numbers" get you down. Every person is different, responds differently to treatment. Just have them follow up with rad and chemo and go from there.

Stat's teacher in high school once told us "There are lies, damn lies, and statistics" Then pointed out a study that said every time teachers got pay raises, alcohol consumption rose. Study concluded that teachers were high users of alcohol..

Turns out teachers only get raises when the economy is good, and when the economy is good the rest of the population has money to spend on booze.

Lesson is, MD Anderson, American Cancer Society, can spout statistics, but at the end of the day, individual's body, mind and spirit play a bigger part.

Hoping for the best for you.
Bob


SCC Tongue, stage IV diagnosed Sept, 2002, 1st radical neck dissection left side in Sept, followed by RAD/Chemo. Discovered spread to right side nodes March 2003, second radical neck dissection April, followed by more RAD/Chemo.
#2720 06-10-2004 01:21 PM
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I am an MDACC "Graduate" with node involvement bilaterally when diagnosed. That means a poorer prognosis as you have found out, but that was almost 6 years ago for me. It is consistently rated as the number one cancer facility in the WORLD, occasionally swapping that distinction with Memorial Sloan Kettering in NY. They see over 250,000 cancer patient visits a year, have a staff of over 40,000 people, and it covers acres of land. It is like going to NASA. When you walk down the hallways, there are people speaking every language you can image, from Farsi and Chinese, to the gamut of European languages...people arrive there each day from all over the world to be treated for good reason. They have the statistical sucess rates that merit their number one spot, they have access to the majority of clinical trial drugs that you wouldn't find at a smaller institution if thigs are not looking good, and as cancer patients always have some sort of complications in treatment, they have seen it all before..thousands of times. When something dosen't go according to plan, they have people there that have seen that complication a hundred times if not a thousand times before. This is important, as a change in plans, treatment etc. dictated by a complication is handled right then and there, not reffered out for consultation to another facility or doctor, wasting valuable time. They have the latest equipment, the finest doctors, and if you go there it will be like nothing you have ever experienced in AZ. My tumor board had over 30 doctors of different disciplines in it, all involved in my treatment plan. When my local docs said I was a late stage cancer patient with poor prognosis, I wanted to be where the best in the world were, not where it was the most geographically convenient to be. I honestly believe that if had not been treated at MDACC I would not be here today. You have one shot at things to make the best choices possible, as cancer can be very unforgiving of half measures, or incomplete treatment plans. The only choice you really get to make in it all when the dust settles on things is choosing the doctors that you believe have the right stuff to save your life. After 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.
#2721 06-10-2004 01:50 PM
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Thanks for the reponses, everyone... I only wish now I had contacted MD Anderson from the very start...

And the thanks for the "kick in the pants" on my attitude... usually I'm pretty upbeat... For some reason, that got my goat... I'm also a little sore at a friend of mine over some comments he made "about knowing too much" about what happens to cancer patients in my shoes (i.e. implying he knows the "poor" odds)... arggg... don't bring the negative attitudes around me, as I already have enough trouble overcoming my own doubts and fears... should I sick all of you on him? haha


Tongue cancer (SCC), diagnosed Oct. 2003 (T2 N0 M0). Surgery to remove tumor. IMRT Radiation 30x in Dec 2003 - Jan. 2004. Recurrence lymph node - radical neck dissection June 2004. Second round of rad/chemo treatments ended Sept. 2004.
#2722 06-10-2004 01:54 PM
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One more thing, since MD Anderson is so much like NASA, maybe I should visit NASA as well while I'm in Houston... and an Astros game!! Sorry I digress...


Tongue cancer (SCC), diagnosed Oct. 2003 (T2 N0 M0). Surgery to remove tumor. IMRT Radiation 30x in Dec 2003 - Jan. 2004. Recurrence lymph node - radical neck dissection June 2004. Second round of rad/chemo treatments ended Sept. 2004.
#2723 06-10-2004 04:36 PM
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I did go to NASA in the first couple of weeks before I really had the wind taken out of my sails by radiation treatments, it was really interesting. When the tour guide found that I was a pilot and a cancer patient in town, a person came down and met Ingrid and I and took us on a behind the scenes tour. Great people in spite of all the flack they have gotten. We sometimes forget that they put us on the moon decades ago, and have been grossly under-funded by every administration since. There was a lot more to like about Houston, but after week 2.5, I spent all my time holed up in a tiny apartment next to MDACC sleeping all day between treatments. Ingrid rented every video know to man during that period of time while she waited it all out with me. Blockbuster made a fortune off of her...she would watch about 15-20 a week, read a ton of novels, (thank you Amazon) and catered to my every whining whim.... something I will never be able to repay her for.


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.
#2724 06-10-2004 04:52 PM
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I was treated at MDACC as well. The head and neck center is very good, but understaffed. Be prepared to wait. They do a great job and treating so many patients in such a thorough manner. You'll notice the waiting rooms don't have many magazines, but racks of books. My dad pointed this out to me and said "This isn't a good sign" ha ha! I have to say that after you get into their system that they treat you very well. I have opted to stay in Dallas for any further treatment and my doctor said you can be rest assured you have received the "gold standard" as far as treatment goes. That was a comfort and eased my mind about my decision to go to MDACC. I was 10 weeks away from my little girls and that was extremely hard. My best to you. All the ENTs there are excellent, don't worry about who you get.

Let me know what you decide and how everything goes.

Lynn


Stage 3, N0, M0 oral tongue cancer survivor, 85-90% of tongue removed, neck disection, left tonsil removed, chemo/radiation treatments, surgery 11/03, raditation ended 1/04, lung mets discovered 4/04,
#2725 06-10-2004 07:46 PM
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My lifelong best friend called me one day to tell me he had cancer...in both kidneys. He was scheduled to have both removed and knowing he lived in Houston, I strongly urged him to go to MD Anderson for a second opinion. He canceled the surgery the next day and went to MDACC. They took out one and part of the other. He avoided a life of dialyis and complications. That was 3 1/2 years ago.

Eric, MDACC has another way cool policy of telephone consultation second opinions with your doctor and you can be part of the teleconference. I used them before I started treatment and explained to them I was scheduled to get a PEG, mediport and some teeth extracted in 3 days and they still worked their magic.

Ed


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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