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Joined: Mar 2018
Posts: 34
Contributing Member (25+ posts)
OP Offline
Contributing Member (25+ posts)

Joined: Mar 2018
Posts: 34
Hi All,

My insurance has denied my MD Anderson doctors request for Proton Therapy and we are now in the process of appeals.
I am just over 6 weeks past my partial glossectomy and floor of mouth rebuild. We were supposed to start chemo and rads next week but Tricare is throwing a wrench in the works. Has anyone gone extra weeks after surgery for their rads and chemo.

This is causing me unnneeded extra stress!!

Linda


Stage 3 SCC of tongue/floor of mouth. Originally Stage T1N0M0 but one pesky lymph node discovered in neck after resection.
Now T1N1M0
Surgery 2/16/18 at UAB.
30 Proton Therapy Treatments
Cisplatin Chemotherapy
Joined: Jul 2012
Posts: 3,267
Likes: 1
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,267
Likes: 1
Linda,

I didn’t have a problem with re-irridation with Proton Therapy under Medicare back in 2013, but I know other patients that did, not related to head and neck cancer. Back then, it was basically for re-irridation of the head and neck or otherwise a clinical trial at MD Anderson, which I’m not sure is still open. ASTRO, American Society of Radiation Oncology, was going to make a written policy to include Proton Radiation for initial head and neck cancer, not just re-irridation or clinical trial.

I hope MD Anderson is helping you with the appeal process? My center at ProCure let some patients start radiation while in the appeal process. I know they had patient assistance programs to cover radiation, transportation, housing or similar. I know relatives of some patients that when the billing or whatever came in the mail they threw it in the trash lol. Those were some of the early days as I was patient #245 at that new radiation center, not affiliated with a hospital.

I hope you get approved soon or they let you start radiation. Pretty much they like to start between 4-6 weeks post surgery.

Good luck!


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Joined: Mar 2018
Posts: 34
Contributing Member (25+ posts)
OP Offline
Contributing Member (25+ posts)

Joined: Mar 2018
Posts: 34
Hi Paul,

Yes we plan to go ahead and start and continue the insurance fight. Tricare pays around 18 grand for imrt and around 35 grand for proton. I’ve read where the Mayo Clinic has started charging the same for both imrt and proton so that the decision is not based on cost. If your RO and team says thst proton is what they recommend, who is the insurance to disagree with the top cancer doctors in the country??
It’s super frustrating for my husband as he risked his life for 23 plus years flying jets for the military. One sortie spent more in gas than all of my medical treatments could add up to.


Stage 3 SCC of tongue/floor of mouth. Originally Stage T1N0M0 but one pesky lymph node discovered in neck after resection.
Now T1N1M0
Surgery 2/16/18 at UAB.
30 Proton Therapy Treatments
Cisplatin Chemotherapy
Joined: Jul 2012
Posts: 3,267
Likes: 1
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,267
Likes: 1
Linda,

I’m sorry for your troubles, and totally agree with you! Hang in there, and keep fighting! Maybe that’s what they expect, the majority to opt for IMRT, and only pay for protons for a smaller group? When I was going through protons it was around $3,500 a day, at least that’s what the proton center charged, double the amount than IMRT, but that’s what finally cured me too!

I hope this helps!


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs







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