There has been a lot of posts and information about HPV here and I personally have wanted to believe very much the reports that survival rates and treatment outcomes for HPV are better than smoking or alcohol related BOT. (my insurance does not want to pay for HPV testing of the biopsy from last year saying it's "moot") Like David, I wondered whether I really needed such an agressive treatment (although absent definitive clinical studies, I would opt for it all over again). Here is a link to a study I've seen mentioned before but suddenly it has moved up in my Google news retrieval as it gets cited more and more.
Presence of Human Papillomavirus Infection Has No Prognostic Value in Tongue Cancer Patients

This article describes the conclusions of one researcher that studied the charts of 87 patients and tries to dispute the study published in the Journal of Clinical Oncology, Feb1, 2008 which studied over 45,000 SCC patients. I think proper weight should be given when weighing the 2 conclusions.

Certainly a lot more information is missing about HPV and perhaps early conclusions reached may change over time. In November the NCI's Head and Neck Steering Committee will convene a "state of the science meeting to help identify and prioritize research needs and to lay a platform plan for the development of future clinical studies to advance the field". My RO, Dr Andy Trotti (Moffitt)will share a panel with Dr Maura Gillison (Johns Hopkins) and HPV will be a hot topic.

Likewise my Insurance does not pay for HPV testing of the tumor and my Doctors tell me currently HPV (or EBV) does not change anything. Never-the-less it would be nice to know the cost for this test.

Last week, my ENT basically said that at this time the review ("study"?) of 45K old cases (1972-2004) is an interesting statistical exercise but has troublesome limitations.

He noted that the conclusions must be collaborated by significant studies from known HPV linked cancer case.

The small study (cited) by Roswell Park Cancer Institute, Buffalo, New York was unable to collaborate those conclusions and I was told U of T - MD Anderson is also now trying but to date is also coming up well short. Hopefully they will publish something soon.

As someone who lectures to doctors about this subject a numerous professional society meetings, and at university cancer programs I can tell you that the lack of CURRENT understanding and knowledge of the HPV issue in the treatment oriented (not research) sectors of the medical and dental communities is mind-boggling. Whomever is questioning the impact, and the long term issues related to HPV16 is behind the curve knowledge wise. I have recently been to two HPV conferences at which everyone acknowledged the severity of the issue, and the CDC is in the process of assembling a white paper on what we know today. While this is in pre publication stages, I have seen the H&N parts of this and the conclusions are not in question. If anyone doubts the impact of oncogenic HPV, they are oblivious to the the concern that it is reaching outside the realm of oral and cervical.

The article that was linked to in this thread was already in the OCF news section. It takes about 1 minute to sign up for the OCF RSS news feed and you would get all this stuff in a timely manner if you are interested.

It is true that what we know is far out paced by what we do not know. And insurance companies are not going to pay for a test that does not change treatments, it's an academic point at this stage of things. We are years away from clinical trials that can elucidate if different treatment modalities for HPV+ lesions at specific stage could be altered with success. When that question is answered they will likely then do them.

Brian

Thanks. I just signed up. Much better than using the Google news feature topic selection although that does alert me to when articles are getting more play in MSM. More reading to do.
Tom

Brian,
Related to the case review in question:

Incidence Trends for Human Papillomavirus�Related
and �Unrelated Oral Squamous Cell Carcinomas in the
United States

Are you aware of a study in progress that will collaborate the assumption the HPV link SCC has a significantly higher prognosis?

Two years ago my insurance company paid for my HPV test which ran about $600 if I remember correctly. I have United Health Care.

Brian,

On a side note and you can PM if you would rather...Do you have a current list of all the certified testing sites for HPV in the U.S.?

My Ins for the HPV test, LOL But sure did ignore a lot of Hospital Charges. I owe Ohio State alone over $17000 and that doesn't count the others. I think Ohio State should have ate that bill for making me worse instead of better. Loss of teeth and tongue rad implants for saying I didn't need rads or chemo. But I have to live with it.

I know I typed paid in that statement . LOL Maybe my puter keyboard is messed up. Maybe too much coffee for it. got the caffiene blues now.

Brian and Dave

THANKS for the reassurances that this particular study is an anomaly. Having had time to wade through the OCF RSS reports, I feel much better about my prospects.

EZJim

THANKS for putting the HPV reimbursement issue into perspective. While my insurance won't pay for that, it did cover over $250,000 in bills from the Lombardi CCC with just $4,000 out of pocket for me. (not even three root canals which are not covered)

So far my insurance has been billed over $2,000,000 for my treatments at Moffitt alone. I'm sure that's not why they have agreed to pay but the amount is staggering. Each radiation Tx was $43,000 and I had 35. I want one of those machines!!

Don - Prognosis of what? Are there improved survivals under 10 years, yes, if that is what you are referring to.

David are you sure you have that number right? If that is correct you are the most expensive treatment case on record.

Wow - that is a phenomenally high figure - and your signature line indicates that you didn't have surgery!

I have just recently tabulated my bills for my treatment that included 35 radiation treatments, 2 doses of Cisplatin, a hemiglossectomy with neck dissection, months of home health nursing care for IV fluids and IV anti-emetics, a surgery to place the PEG tube, OT, ST, and PT - and the grand total was under $100,000. I'm a patient of MD Anderson in Orlando - I can't imagine that they are that much less expensive than Moffit!

My total IMRT bill (only) was around 45-50K.

Dealing with different health care providers. It is interesting that a part glossectomy is cheaper!! than getting a port. To me this seems just wrong.
Of course there is always the discrepancy what you are charged and what is actually paid.

M

This info comes from my wife and I NEVER DOUBT WHAT SHE TELLS ME. She kept (keeps) all the the bills re my cancer out of my sight since she is convinced it would upset me and lead to more cancer. I did see one bill for a Cat scan and it was billed out as $4600 which I thought was very high but in line with what my wife was telling me about the radiation Txs. Maybe I got the premium grade radiation stuff. LOL

Wow is right! I just got the bill for my first day of treatment at Dana-Farber and the IMRT was $1693.00.

Something is wrong in your billing situation, and it's worthy of exploration. A PET scan in LA, which is not a cheap market is about $1400.00 and that is much more expensive than a conventional CT. H&N MRI's are about 1200. What the others have posted related to radiation costs seems normal for the country at large.

OK somethings not right. My IMRT couldn't be $43,000 each and everyone else's much much much less. Guess I'm going to have to ask her to see my bills. I remember about 20 years ago she volunteered to take over paying the household bills and a couple of months went by and I opened a Macy's bill and I see we have a credit balance of like $1600. Asking my wife I was told that when she gets a bill she writes out a check, so if she gets another statement that didn't reflect the previous payment she still writes out another a check. I took back the job of paying the bills.

Does your wife by any chance have a new car (or two?)

just kidding (spanish inquisition?)

M

She tells me she's creative, not a numbers person.

My entire series of XRT (37 treatments) was less than $43K -- It appears to me that she has gotten creative with the book keeping -- Have her spending habits gotten expensive recently, shopping trips to NYC and Miami, more cruise vacations than usual? -- What does she drive and how many times a year does she buy a new one? -- Does she have a copy of "Creative Accounting" in her bookshelves?

Worse, what if she has actually paid out that amount?!?

As you well know in your profession, it's hard for a client to see what's happening right under their nose -- Maybe it's time for an outside audit, perhaps even a forensic audit <g>. You may be an unwitting accomplice to MediCare fraud!

Yeah, my total for neck dissection, 39 IMRT, 8 chemo and about 40 or so other visits totals about $275,000, of which I paid about $2,500 out of pocket.

I think your wife has the right number, just the wrong decimal point! ;-)

Brian,

Can we create a list with approximate costs for different treatments?

IMRT
PET/CT
PORT
PEG
etc

The idea is not necessarily to go shopping but to be informed. It is unlikely that if you need a port that you would say .... you want how much for this?? No thank you!
I was totally floored how much Tenet attempted to charge for the port. Note, the surgeon only gets a fraction of this, he was also rather intrigued by this. I was also surprised how much extra charges were accrued by the HBO treatment which was supposed to be covered by my insurance. Interestingly, they (same company) attempt to charge $345 for the 5 min the physician spent to check my ears. This turned out to be not required in the end. Even more interesting there were different physicians involved who were a) a lot cheaper and b) whose staff were apparently able to properly fill out an insurance claim. There were also rather significant differences in the PET/CT. Trailer, old equipment, Tech who get the date wrong and no head rest (for a head PET/CT) vs newer equipment, competent staff, nice facility at half the price..... nevertheless you have to convince the insurance company that the latter makes more sense. Before I come across at too negative I have to give credit to my insurance company which was accommodating... once you take action.


M

Great idea Markus.

I havent gotten too many bills. Im very fortunate that I have good medical insurance. I remember two bills I received for hospital stays. One was for 7 days and was about $27,000. My latest 10 day stay was $37,000. Out of those I was very lucky and only paid a very minimal co-pay of about $100 each. I never did get a bill for radiation or chemo. I have only paid the doctors their $10 co-pay for office visits.

So far I have yet to receive a bill for the HBO. Ive done 33 dives and have another 17 more to go. That has also been approved by my insurance. My HBO doc told me its very expensive, that it costs thousands to go thru HBO treatments.

I'm currently undergoing HBO treatments. I had 13 dives at one hospital and so far the charges from that facility have total over $15,000 (average of $1,200 per dive). Switched hospitals and have completed 27 dives there, with 5 more to go. I haven't received any statements from that facility yet.

In 2006 I had 33 radiation therapy sessions. Total cost was $55,630.

My oral cancer saga began in June 2005 with surgery, and so far my medical bills have totaled over $130,000 for medications, tests (CT, PET, MRI, etc), doctor visits, treatment.

Fortunately I have good health insurance and my out of pocket expenses have been minimal.

I'm going to hire a Forensic CPA to investigate....Wait I'm a CPA...Ah, but she's my wife...but I can't afford not to have her spending habits investigated...but if she's been "creative" then I can't afford to hire anyone...I'm too busy to track how much she really spends, even if I could...She has been talking about retiring to the south of France when I do leave this earth...See this is the STRESS she said that I shouldn't live under...Who started this thread anyway!!

David

That would be me. I also did wonder how you could be a two million dollar man. Just to keep this thread meandering from it's original focus on an outdated study (thanks again Brian for the RSS nudge as well as the heads up on cancer answers $ focus), I will try and shift it from your wife's decimal dyslexia accounting back to HPV.
I have gotten some PMs asking if I was every tested for HPV. As I replied: "Nope Wanted biopsy tested but since insurance won't cover it, can't waste 6 or 7 hundred that is better for the dental bills. Tobacco and Alcohol highly unlikely since I didn't smoke and very casual drinker (happy hour at conferences or one drink at home)so it's HPV or maybe just bad luck."

You still don't have ANY taste? What about the dry mouth?

yeah frustrating not being able to taste and one of the reasons I am still just 135 pounds at 5' 11". Still have not lost hope though. At least nothing tastes bad or metallic just blah & bland. Can't even taste the mint in the flouride gel although the label says it is there. I am getting good at distinguishing textures.
The Dry mouth though is a lot better. I can even go an hour without sipping water.

David,

Just to let you know...Your wife's creative bookkeeping has been a real treat...I almost forgot where I was...I haven't laughed like this in weeks...Thank you...thank you...thank you!

Raymond

Here is an old post that is pretty funny:

http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=53890&page=1

Well lets hope the dry mouth will continue to improve and with it your taste. I always saw improving taste and improving dry mouth going hand in hand together. Wow 135 at 5'11" and I thought I was skinny at 5'7" with the same weight. When I was still trying to gain weight the VHC was always there. It was a quick way to pour down 560 cals when my taste and appetite sucked. Good luck and remember I didn't start to really see a big improvement until I was 16 months post so you have a ways to go.

Brian,
CT scans for $1200? I just checked my 2008 bills from HUP. MRI $8481 +$1938 for radiologist. CT brain $8481 +$1938 for radiologist and CT scan abdomin $5296 +$1938 for radiologist. Is the east coast really that much more expensive than California?

Take care,
Eileen

Hah, maybe my wife is correct?

I just checked the Blue Cross site, and the average cost of an MRI in the U.S. is roughly $2000. Brian could be right.

http://www.bcbs.com/coverage/basics/cost/

I have to pay for my stuff out of pocket. I know what I am paying. There is little doubt that the medical system in the US inflates prices knowing that they will have to negotiate down to the insurance companies.

Exactly, I was just going to post that there is a big delta between the billed amount and what the insurance pays as a contracted amount.

I always thought it was odd that our co-pay was the same for an x-ray ($35) as it was for an MRI, CT, or PET. Aetna wised up this year on our policy, so now it is $200 for any of those.

Deb

No way was David billed TWO MILLION dollars especially without any surgery. As Brian noted, the 250 THOUSAND dollar price I was "charged" was much more than Blue Cross/Blue Shield payed, yet I kept all my bills and added them up myself. The CCC was a preferred provider so it agreed to accept BC/BS lower payments. It was astonishing how many separate bills I got for each procedure: up to 5 for each chemo, and at least three for each MRI.
Other readers of this forum may get scared of getting the treatment they need if their insurance is not so great and they don't get David's wicked sense of humor. I repeat: just radiation, chemo, PETSCANS and MRI's do NOT cost two million dollars for the type of treatment David and I had.

Also keep in mind that these artifically high "retail" prices set the stage for some pretty hefty tax breaks, depending upon how they structure things.

David,
It sounds like your wife has one to many zeros on that number and since you did NOT have a neck dissection, it still sounds way too high. Time to check the bills because if your insurance has a life time max, you don't need to get billed for things that didn't happen.

Take care,
Eileen

I can't tell you what my insurance is paying for the scans that were run this year as they persist on sending them to Medicare first instead of my primary insurer. I think they generally pay about $6500 of the $8500 bill.

I did however look up a CT done last Novemeber both with and without contrast. This was billed at $5086 +$938 for radiologist. Insurance allowed coverage was $3305.90 + $94.12 for radiologist. So these 'ourageous sums' are mostly being covered by insurance. And it not only HUP, I get charged similar or higher rates at the local hospitals. Is it the NY, NJ, PA metropolitan area is that much higher? That means the 10 or 20% the insurance doesn't cover is much higher. And what rate does the poor guy with no insurance pay?

Take care,
Eileen

Charm perhaps in 017,

Are you saying that I'm not worth a 2 mil repair job? That you can't believe anyone would waste 2 mil on the likes of me? That there are over 2 million better ways to spend 2 mil than fixing a broken David? Just curious.

Curious David

Far from it: I'm sure a video of your life would have the tag line: Curing David of Cancer: PRICELESS

That's the ticket!!

I must have gotten a bargain for my INS. and for me. I know it was around $100,000 and I still owe Ohio State a little over $17,000. That isn't counting West Virgine University Hospital or Wheeling Hospital. Plus all of the scans and implants plus a few biopsies. I don't know why they won't write it off so I can have spending money. I'll be dead before I get it paid. LOL But I hate to get even that way.