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| Joined: Mar 2019 Posts: 1 Member | OP Member Joined: Mar 2019 Posts: 1 | Hi All! I am new to forums, but this community looks amazing and I am already thankful for the transparency and kindness I have read.
My brother "D" has been diagnosed with tongue cancer T1 (they think) on the right side. He lives 2000 miles from me, but I am his main support person and will be going to the location he chooses for his surgery, no matter where that is.
At this moment we are in the waiting stage, PET scheduled for Thursday 3/7. CAT scan they reported "clean". We are staying hopeful and positive but are aware of the possible severity and ultimately risk to his life.
We are looking for second opinion options and surgery location recommendations. He lives in North Carolina (though that doesn't matter as we will go wherever we need to go for the best care). Please let us know your thoughts and experiences :-)
Thank you in advance! Deb
Last edited by SisterSupport143; 03-04-2019 03:06 PM. Reason: improve views/input from others
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Welcome to OCF! Your brother is very lucky to have you!!! Everyone going thru this needs someone to be there to help them thru it. Since you arent local it would be a very good idea for your brother to have someone go along with him to his appointments, just to take notes so he can go back and review exactly what the doc said about certain things. Almost everyone who is going to the doc to get test results will not hear anything after getting the initial bad news of having cancer. If he isnt comfortable sharing such personal info with someone he should ask the doc if he can tape the appointment. Most docs dont have a problem with taping but once in a while some do so make sure to tell him to ask first. Theres a million and one things to do prior to starting any treatments so Im sure your brother has his hands full right now. He may want to schedule a thorough dental exam and make dental moulds for later if he will have radiation. Its always a very good plan to try to get to our countries top cancer treatment facilities called Comprehensive Cancer Centers (CCC's) . There are 49 CCCs and 9 CC (cancer centers that arent quite as good as the CCCs) in the US. Below is the CCC list where you or your brother can search them by state if location plays a part in this. There are also organizations that can help cancer patients with getting to treatments and lodging if the CCC is more than 50 or 75 miles from their home. (sorry I cant remember all the specifics of which organization does what) The CCCs usually have a place nearby for lodging thats free or very low cost like $5 or $10 a night plus they provide transportation to the CCC. Best wishes to you both with everything! NCI CCC list, can view by map too ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | |
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