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| | Joined: Sep 2017 Posts: 2 Member | OP  Member
Joined: Sep 2017 Posts: 2 | Good Evening, I was diagnosed with SCC in July, 2017 after an ENT did a syringe biopsy of the large mass in my neck that blew up very quickly. ENT wanted to immediately do a tonsillectomy, but I went to MD Anderson instead. Subsequent operating room biopsy confirmed BOT SCC HPV-16, and surgeon did not remove my tonsils. They are planning to start radiation treatment, but now trying to win the appeal of a denial by my insurance for their coverage of Proton Therapy. Has anyone else received Proton Therapy in order to reduce the side effects? If so, did they pay out-of-pocket or successfully get insurance to pay? Thank you for any information that you can share. | | | | | Joined: Feb 2017 Posts: 67 Likes: 1 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Feb 2017 Posts: 67 Likes: 1 | My husband has the same cancer, Stage 4. We were told that for his case IMRT would have a better chance for a cure. We had really hoped to do proton for the reasons you cited. I believe in our state insurance cannot deny proton therapy. Not positive because we did not investigate thoroughly the payment once we made the decision to go with IMRT. I will say I have had no luck budging our insurance company on things that made mo sense to me to deny. Even when we explain how it has the potential to save them money, they seem stuck on their current criteria. It is a frustrating cycle. I wish you the very best in your quest.
Wife to DP. DX SCC BOT 1/31/17
First treatment 2/27/2017 Cisplatin 3 times and IMRT
Last treatment 4/18/2017
Clear PET 7/13/2017
PEG removed 8/4/2017
| | | | | 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! Im very glad you found our site to help you get thru your treatments and recovery. We have had members do the proton therapy. With treatment costs so high, Im fairly certain most patients had it covered by their insurance. The US healthcare system sometimes requires appeals in order to get things paid for. Ive been thru it myself in another situation. Even my appeal was denied until I appealed again with a letter from 2 of my doctors. Those letters did the trick and I won the second appeal. I hope you are successful as well.
You're being treated at one of the countries top Comprehensive Cancer Center (CCC). Ive heard great things about MD Anderson and I know several patients who have been treated there. To prepare you may want to start eating all your favorite foods. Your sense of taste and ability to eat will likely temporarily change. You do not want to go into this having cravings that you may not be able to enjoy for several months. If you are on the slim side, you will want to pack on a few extra pounds too.
Stick with us and we will help you get thru everything you are facing. Best wishes with everything!
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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