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Amy M. Offline OP
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Thanks! Now, I know a little more what to expect. I don't think they'll probably show me around the facility - b/c it is 2 hours from my home and they mentioned on the phone that if I decided to have the radiation that I could do it locally. The hospital where the glossectomy and neck dissection were done is the best hospital in Cincinnati and they have IMRT - so I'd probably go there for treatments as it is only 25 minutes away.

One other question: When those of you went for a second opinion at a large CCC, but then had treatment at another location, who is your R.O? Is it the one from the large CCC or is it the one from the local treating hospital? Or, do they work together on the treatment? I was a little confused to this - but wasn't going to think about it until I have decided to have the radiation or not.


SCC Right Lateral Tongue T2N0M0 Dx 01/12/06, Surgery 01/25/06. Partial Glossectomy, Bilateral Neck Dissection - 22 lymph nodes - all clear. No radiation.
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The RO is the one at the treating hospital. And you will have (and will want!) to meet with that RO too if you end up deciding to have radiation. They will be the ones doing the mapping and fitting your mask, etc. They may talk directly with the RO from the CCC beforehand, but they'll be doing the nitty-gritty details of teh treatment.

Since that is the case, ***ask the local RO how many oral cancer patients s/he treats every year*** because the RO's expertise in programming the IMRT radaition makes a big difference.

Nelie


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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Who is going to do the radiation planning? The CCC or the local radiologist? Since who does this is probably as important as what is done, you do need to find this out. I recall at ASCO couple of years ago they gave a "test case" to a large number of radiologists and they came up with widely varying plans (for the same patient). You will want someone with expertise in treating oral cancer so you have a plan that will maximize radiation to the cancer -- and thus treatment effectiveness -- while minimizing, as much as possible, non-target tissues. This will have a great impact on side-effects and future quality of life.

Gail


CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!
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Amy M. Offline OP
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Can an RO from another city "plan" the treatment so that I can have it in the city I am in? Or can he only plan it if I have it at his facility? For instance, can the RO at Ohio State in Columbus, OH plan the treatments but an RO in Cincinnati, OH administer the treatments at a hospital in Cincinnati?

I just found out this morning that even though the CCC is in the Humana network, they aren't in "My network". So, now have to try to rush and get a pre-authorization to go tommorrow - otherwise, I might be stuck with the bill and I really don't have the extra cash laying around for that right now. I have no idea how much an RO would charge for a consult.

I don't know for sure that I even have to have radiation yet - but I am sure they will probably suggest it.


SCC Right Lateral Tongue T2N0M0 Dx 01/12/06, Surgery 01/25/06. Partial Glossectomy, Bilateral Neck Dissection - 22 lymph nodes - all clear. No radiation.
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Amy M. Offline OP
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Never mind this post. I'm not going so it really isn't an issue now.


SCC Right Lateral Tongue T2N0M0 Dx 01/12/06, Surgery 01/25/06. Partial Glossectomy, Bilateral Neck Dissection - 22 lymph nodes - all clear. No radiation.
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For future readers, it is usually not general practice for a treating facility to implement a treatment plan devised by another facility. There are liability issues that prevent this as a rule. When things don


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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They won't authorize it Amy? That really sucks. I couldn't agree more with Brian about this. Anyone with cancer should be entitled to insurance coverage of a second opinion from a CCC. Especially when the cancer is one of the rarer ones, as in the case of oral cancer.


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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Brian,

I couldn't agree with you more. A family I know has a son battling cancer. He is the same age as my son (16). He has been denied access to some health care due to lack of insurance coverage. It's a terrible situation because he has had a recurrence and one of his doctors told the parents that if his insurance plan had allowed for a PET scan that the course of treatment may have been different. Now his parents are left to wonder what may have been. It apparently came down to a financial decision on the insurance company's part.

John


SCC base of tongue. Diagnosed as stage IV, Sept. '04. Partial glossectomy, Radical neck dissection left side, 37 Radiation sessions, Chemo x 7 weeks. Finished treatments January '05. Cancer surivor!
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Amy M. Offline OP
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It's not that they won't necessarily pay for it. But - they won't if I don't get it pre-authorized and to do that requires a letter from a physician stating why I need to go to this particular facility in favor of a local one. The RO at the CCC doesn't feel comfortable writing it - since he hasn't yet seen me (although he does already have my entire cancer history through all the medical forms, evaluations etc that were faxed to him), and I haven't asked my ENT to write one since he said I didn't need the radiation anyway.

I rescheduled the appt at OSU for next week when we thought that I could get the letter - then they called and said the RO wouldn't write one. I haven't cancelled that appt yet - and I can still go - but risk having to pay for it. The initial appointment is going to be around $500, and though I could pay for that, and file an after the fact claim- there is a good chance they'd stil deny it and thus deny any treatments there as well. I don't know if the RO would write a letter after the appointment to get the pre-authorization at that point.

I understand why HMO's suck. My physician filed a surgical bill that was close to $9000 for the surgery which took 4 hours and two ENTs working togther from the same practice. I had triple endoscopy, resection and bilateral neck dissection. They have denied his claims for payment for everything other than $414!!! Yes - $414 for 4 hours of surgery for 2 surgeons! He has refiled and they have denied him a second time. At one point a few years ago (when I was seeing one of these physicians for only my allergy / asthma), they actually dropped my insurance from what they would accept. They did pick it back up before my next appointment - so I didn't end up having to switch, but now I know why.

If anyone has the name of a good RO in Cinci that may have treated several of these cancers - please pm me with the information. I might be limited to staying local. There is a medical school at the University of Cincinnati that is very good and there is a cancer center called the Barrett Cancer Center also one at the hospital where I had the surgery - both equipped with IMRT I believe. They are just not CCC's. I just really don't want to be a guinea pig for some doc who has only treated a handful of these cases and will "fry the hell" out of my entire mouth and neck- "just to be safe". So, please let me know if you have the name of someone who might be worth calling.


SCC Right Lateral Tongue T2N0M0 Dx 01/12/06, Surgery 01/25/06. Partial Glossectomy, Bilateral Neck Dissection - 22 lymph nodes - all clear. No radiation.
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AmyM. Does Ohio have a State Insurance Comission? I had to file a grievance with our State Commission to get John Alden to cover some of John's tx. After I did that, they agreed to pay. I know you don't have alot of time to make phone calls, but I would be inclined to go as high up the ladder as I could with the Ins co and the Commision. Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

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