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ConnieT Offline OP
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I know he is pushing everyone to make his treatment happen faster as he has little patience and likes to run the show and I wonder if that's why insurance is not agreeing to pay for proton treatment? I learned years ago that no one runs the insurance companies, they rule the world is one of my sayings!

anyway, he has to drive 8 hours to do a covid test a week before treatment and they will not accept a test from a place an hour from us. That would be the only reason he would drive those 8 hours. Whats crazy is that he could get exposed the next day and the covid test was worthless.

just wondering if anyone has had proton treatment and was able to get insurance to cover it. He hasn't had a job for 6 months so we have no way to pay for $30,000 to $120,000 out of pocket for treatment.




Last edited by ConnieT; 06-03-2020 07:25 AM.

Spouse of 58 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
1/2020 diagnosed with cancer near TMJ
4/2020 chemo 5 days every 2 weeks
6/2020 proton therapy
9/21/2020 cancer free
Joined: Jul 2012
Posts: 3,267
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Hi ConnieT!

I’ve had proton radiation in 2014/15, along with chemo, after I had surgery and intraoperarive radiation. I believe this treatment was the reason I’ve been cancer free since. At that time, there were a few reasons to have Proton Radiation such as a head and neck cancer recurrence. Now I believe it’s open as first line treatment in head and neck cancer.

I have Medicare Original and a Supplemental Plan, so it didn’t cost me anything plus it’s like double the cost of IMRT. I heard of a few patients having insurance difficulty then, but they were pushed through to get treatment! I didn’t go to a hospital for this treatment as the nearest place for Proton Therapy was at the Proton Center in NJ. Now they have another Proton Center at the hospital/cancer center. I’m actually in nyc, but it was worth it to get a daily ride to NJ to get treatment.

The Proton Center is amazing. It has a footprint of a football field to give one patient radiation at a time! My center had 3 or 4 rooms where they set up a patient, but it could only deliver radiation one at a time. It was silent, and lasted two minutes. Although the set up time could take double that of IMRT if it’s not IMPT that doesn’t need to be set up physically for each dose.

Below is the association of Proton Centers that could give you much more information plus the location of all the Proton Centers on the U.S. I hope this helps!

https://www.proton-therapy.org/


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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ConnieT Offline OP
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thank you for the information and response Paul. BC/BS is refusing to pay for it. Is the million dollar lifetime cap still a thing in insurance? I have to wonder how close he is to that.

Since he does not have a job, this insurance is the only choice we have right now and we can have it for another year and a half. I feel our options are very limited financially and insurance wise. Maybe BC/BS will come through at their own pace but things are on hold until then. His treatment center is Mayo Clinic which is 4 hours north of us. At least they didn't send him home to die like another large hospital he was going to!

I see we have another option southwest about 3.5 hours. good to know

Last edited by ConnieT; 06-05-2020 11:48 AM.

Spouse of 58 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
1/2020 diagnosed with cancer near TMJ
4/2020 chemo 5 days every 2 weeks
6/2020 proton therapy
9/21/2020 cancer free
Joined: Jun 2007
Posts: 10,506
Likes: 2
Administrator, Director of Patient Support Services
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Hi Connie!

Maybe this will help? You may have already seen these links? They're from our main OCF site. Another option many hospitals do not openly offer to their financially needy patients, some centers will have a special fund set up. Only those who know to ask about the treatment centers financial aid are given info. I dont know why these programs arent more proactively offering help to everyone but this seems to be available at many centers. It could be due to the fluctuations of recent donations received or something to do with the level of assistance certain patients require or it simply could be the hospital worker not remembering to be proactive with it? I always say... you dont get if you dont ask. Its still worth a try, you never know your timing could be perfect. Hopefully this will be available at your husbands treatment center. AT some point in my treatments with the 4 OC diagnosis, I was hooked up with this program. Back then I had excellent insurance from my employer picking up the tab for complete insurance dental and vision too for me and both of my children but there were a few pricy co-pay balances which the hospital financial aid program paid for me. That kind of complete family insurance coverage in the US is back in the good old days of pensions and 401k's all the major employers offered.

Main OCF site, Insurance Info

Main OCF site, Financial Assistance

Best wishes with everything!!!


Christine
SCC 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 smile
Joined: Aug 2018
Posts: 335
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ConnieT Offline OP
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Joined: Aug 2018
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thank you! I had no idea one could go some of these routes.


Spouse of 58 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
1/2020 diagnosed with cancer near TMJ
4/2020 chemo 5 days every 2 weeks
6/2020 proton therapy
9/21/2020 cancer free
Joined: Jun 2007
Posts: 10,506
Likes: 2
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,506
Likes: 2
I just remembered another resource that may be helpful. The American Cancer Society (ACS) is all across the US and may provide cancer patients with their choice of a small grant. I was helped thru ACS quite a while ago (12 years ago) so this program could have changed. Theres a form to fill out and something to give to the oncologist to fill out before the one time $300 grant is given. amount of $300 grant could have changed. The options back when I was given the grant were as follows... either a wig, reimbursement for travel expenses to doctor or treatment appointments, personal prosthetic (for mastectomy patients), or a pharmacy credit to help cover prescriptions or co-pays. They're available 24/7 so its ok to call them any time of any day to make inquiries. They could have other assistance programs that Im not aware of at this time.


The ACS also has a volunteer patient transportation program where survivors drive cancer patients to their doctors or treatment appointments. I was very surprised when volunteer drivers who were cancer survivors drove me back and forth to my treatments a few times. I never expected anyone would drive the 45 minutes up to my house in the woods back down to treatment center, then take me home and drive back home themselves. Its worth a try even if it seems to be a great distance so you never know. I only did it a couple times but it was really nice to have a former cancer patient to talk to and give my 17 year old son a break from the long commute. When I got better, I was a volunteer driver for 10+ years which has always been a great experience helping people one on one.

Best wishes with everything Connie!!!


Christine
SCC 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 smile

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