#21176 09-21-2006 02:05 PM | Joined: Mar 2002 Posts: 4,916 Likes: 63 OCF Founder Patient Advocate (old timer, 2000 posts) |  OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,916 Likes: 63 | I wish to thank JoAnne for stating something that I should have said in my "passionate" early posts, and that is the part about no two of us being exactly alike and no particular treatment plan being universal. Having stated that myself in so many posts, I know this to be obvious to most of us here, but not necessarily to a newcomer. While she did this diplomatically, I should have worded my original comments to reflect this, and probably came on too strong. Indeed there are posters here that have had treatments in a variety of orders, and have survived it all, most with good quality of life afterwards, though certainly different than their lives before treatment. I must be careful not to let my personal prejudices get in the way of the real message - Get in the hands of a team. I hear too many horror stories from patients who have seen only one doctor, had minimal work ups, and are in the middle of a single individuals opinion of what treatment should be done to them, (usually a very myopic plan) and ending up with something far short of the optimum outcome.
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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#21177 09-22-2006 08:14 AM | Joined: Sep 2006 Posts: 5 Member | OP  Member
Joined: Sep 2006 Posts: 5 | Thanks to all of you for your insight. You've been so helpful. After our visit in Indy on the 26th, I will let you know where we stand. I think it's really great what you all are doing here - it has made a big difference for us - we don't feel quite so lost now. You all are a real inspiration to us and we now know we will get through this. And when it get's tough, we know where you are! Thanks again!
Susie | | |
#21178 09-23-2006 08:38 AM | Joined: Jul 2004 Posts: 188 Likes: 1 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jul 2004 Posts: 188 Likes: 1 | Susie,
While I have no personal experience with IU Cancer Center, I googled them and found that they are an NCI Cancer Center and they have a Head and Neck Program with a team approach. Also, many of the staff members have pretty impressive credentials from places like MDACC, MSK and Hopkins.
As others have said, the team approach is so important to having a treatment plan, and recovery plan tailored to your specific case.
You are doing the right thing in seeking a second opinion at a CCC. I think you'll find it worth the trip.
I traveled 62 miles each way to the University of Chicago for treatment, and I'm glad every day that I made all those trips.
Good luck in Indy. Keep us posted.
Chuck
SCC Stage IV right tonsil T3N3M0. Dx 08/03. Clinical Trial:8 weeks Taxol, Carboplatin then Hydrea, 5FU, IMRT x's 48, SND, Iressa x 2yrs. Now 20 years out and thriving. Dealing with a Prostate cancer diagnosis now. Add a Bladder cancer diagnosis to all the fun.
It's always something
"Adversity doesn't build character, it reveals it."
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#21179 09-23-2006 09:09 AM | Joined: Sep 2006 Posts: 5 Member | | OP Member
Joined: Sep 2006 Posts: 5 | Hi Chuck,
Thanks for your post. We'll feeling better and better about this all the time. All of you have been a great help! It's nice to know you all are here.
Susie | | |
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