Is This Normal/Standard Practice?

Locally advanced tonsil cancer (Stage 4). Multiple lymph node involvement. No surgery.   7 weeks of treatment (35 rads and 7 cisplatin).  Had one CT and then one PET scan a few months after treatment.  Seen by oncologist every 2-3 months.  Told will never receive another scan, CT or PET scan, or throat scope, unless physical exam (both hands down side of face and neck and look in mouth with light) turns up something.  Never.  HPV status of cancer unknown-never tested.  Told "treatment the same whether positive or negative so why test." 

Long history of smoking-30 plus pack years.  50-60 age group.  One parent and grandparent (the parent's parent) died of lung cancer.  Parent died of lung cancer before age of 60. 

 Normal/standard practice given the above????

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Comments

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    ron, i had stage 2 cancer of

    ron, i had stage 2 cancer of the laynx.  had 35 rad tx.  recurrence in feb, 2012.  total laryngectomy 2/28/12.  have had 2 scans since and was told no more.  many here have been told the same thing.  like you, i don't get scoped either which i don't understand.  most others here do get scoped every 3 months.  that concerns me a little but i've had 2 ent's so no need for it.  i also smoked, 2 pks p/day for 43 years.  mother died of breast cancer @ 56, brother had skin cancer several times.  anyway, no scans seem to be the normal now.  many of us aren't too pleased with that but what can we do.  we just have to pay close attention to our own bodies and stay on top of any changes.  wishing you the best.

    dj

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    1 scan

    I was given a PET at about 3 months out and that was it. I was told I wouldn;t be getting another and it would be obvious if something was up from the scope/poke and prod. So now... something is up... I'll probably be getting a scan :(

    Positive thoughts and prayers

    "T"

  • jim and i
    jim and i Member Posts: 1,788 Member
    It's the Insurance companies.

    It's the Insurance companies. They do not want to pay. The doctors hands are tied.

     

  • donfoo
    donfoo Member Posts: 1,771 Member
    jim and i said:

    It's the Insurance companies.

    It's the Insurance companies. They do not want to pay. The doctors hands are tied.

     

    maybe

    That seems to be a logical conclusion but it seems the doctors themselves are expressing the lack of need for regular post tx scans. Clearly, my current ENT does not feel the scans are necessary and like T, a good scope and poke is enough. He does this every 6 weeks. Having said that he is going to do a scan at the one year mark.

  • zaac23
    zaac23 Member Posts: 27
    too many scans

    one has to consider how many scans will cause another cancar

  • PJ47
    PJ47 Member Posts: 376
    There is no standard protocol for follow up!

    My R/O scheduled wanted me to have a PET/CT at 6 weeks. I declined. Too early.  My Vandy otolaryngologist said a PET/CT at 6 mos is what he recomends.  Got a new R/O who felt neck, examined mouth and tongue throughly and scoped it at 8 weeks and said to alternate with ENT and him monthly for same exam.   I am more comfortable with monthly follow up the first year.  He recomended PET at 3 months.  I was thinking somewhere between the 3-6 mos makes sense so I will go with 3+.

    Many Docs believe they can feel or see a recurrence but studies I have read found the PET is superior for identifying local and regional recurrence.  One said 2X as sensitive.

    I do believe the insurance companies drive the bus, but I for one will have a PET at 3+ months and then at a year unless my MDs find something during regular exams.

    My opinion is that if the MD finds out you were a smoker they may be less likely to test for HPV, but I think the test should be done anyway even if the treatment is the same.  It does let you know if your SCC is more responsive to treatment.

    Do your own self exams and push for what you feel is in your best interests.

    Hope all goes well,

    PJ

  • phrannie51
    phrannie51 Member Posts: 4,716
    The scan thing

    seems to be all over the place....ranging from none for some of us, to one every 3 or 4 months for others.  My ENT told me he can see with mirrors if the NPC is back.....and he can feel (poke) to check for nodes.  I'm still going to him every month (tho he did tell me I could start slacking off to every 2 or 3 months) if I wanted to.  Myself, I feel more comfortable seeing him every month until I hit the 2 year thing. 

    I honestly don't know what the poop is on the scans, tho.....I think I'm getting another one in May or June, and I had one in January.....so like twice a year??  OR.....I may go to the Oncologist and they decide no more scans.....I won't know till May.

    p

  • D Lewis
    D Lewis Member Posts: 1,581 Member
    Fewer scans now

    I finished treatment almost four years ago, base of tongue, stage 4.  I got a PET-CT at three months out.  Insurance initially denied my scan at one year, on the basis that I had no symptoms indicative of a recurrence.  I fought hard, and ended up ultimately getting the one year scan.  No more scans for me, either, as the doctors say they can see any recurrence without the scans, and the PET-CT itself can cause cancer.  Subsequent to my experience, I've heard from several folks that they were not offered the one year scan, owing to the potential dangers of being scanned.

    Deb

  • denistd
    denistd Member Posts: 597

    The scan thing

    seems to be all over the place....ranging from none for some of us, to one every 3 or 4 months for others.  My ENT told me he can see with mirrors if the NPC is back.....and he can feel (poke) to check for nodes.  I'm still going to him every month (tho he did tell me I could start slacking off to every 2 or 3 months) if I wanted to.  Myself, I feel more comfortable seeing him every month until I hit the 2 year thing. 

    I honestly don't know what the poop is on the scans, tho.....I think I'm getting another one in May or June, and I had one in January.....so like twice a year??  OR.....I may go to the Oncologist and they decide no more scans.....I won't know till May.

    p

    Scans

    Certain aspects of the Affordable Care Act are currently in place. In fact some hospitals and doctor groups started to get ready for this in 2012. The reimbursements for certain tests and procedures were cut dramatically, especially in Medicare, example, I had an endoscopy done in 2011 and my co-pay was $60.00. My wife hd one done last year and the co-pay was $300.00, when I enquired as to why I was told it was because of regulations. I am helping a couple of small business's with their new health care and it is going to get rough. Let's say that a major urban hospital charges $1,000 for a procedure, and a small local hospital charges $700 for the same, or similar procedure, The ACA (Obamacare) dictates that the Major Hospital will get reimbursed at the lower rate, $700. Therefore they will not perform that procedure. Same goes for scans, ACA regulations are driving this strategy, one of our own here on H&N could not go to her regular hospital anymore and now has to go to one miles away. Get used to less care 50% of it is already here. It's the ACA that's driving the insurance companies to cut back. Denis

  • denistd
    denistd Member Posts: 597
    D Lewis said:

    Fewer scans now

    I finished treatment almost four years ago, base of tongue, stage 4.  I got a PET-CT at three months out.  Insurance initially denied my scan at one year, on the basis that I had no symptoms indicative of a recurrence.  I fought hard, and ended up ultimately getting the one year scan.  No more scans for me, either, as the doctors say they can see any recurrence without the scans, and the PET-CT itself can cause cancer.  Subsequent to my experience, I've heard from several folks that they were not offered the one year scan, owing to the potential dangers of being scanned.

    Deb

    Deb

    Deb, I agree that doctors can probably find out if something is going on recurrance wise in the immediate area, but of course it will not detect any metastatic activity, although my lung cancer was not metastatic it was found in a scan very very early and required minor VATS surgery to remove it. If it were not for the scan I would be either dead or stage 4 now. I have been clear of my larynx cancer for almost 5 years and have had scans, both Pet and CT, throughout the past years. There have been people on here who have died from metastatic cancer to the lungs that were not scanned during the aftermath of treatment, so the metastatic instances were not discovered till too late. Scans save lives, and we have had massive doses of radiation from our treatment, additional scans are not going to add that much.

  • phrannie51
    phrannie51 Member Posts: 4,716
    I've been checking my EOB's

    since we got this new insurance....and all I can say is holy cow, how can the hospitals stay in business.  Like a lab was $104, and the insurance will allow $9.55....my blood test for my thyroid was $16.00....insurance allowed $3.00...gulp!  I haven't been getting billed either, but I know the equipment has to cost more than $3.00.

    p

  • denistd
    denistd Member Posts: 597

    I've been checking my EOB's

    since we got this new insurance....and all I can say is holy cow, how can the hospitals stay in business.  Like a lab was $104, and the insurance will allow $9.55....my blood test for my thyroid was $16.00....insurance allowed $3.00...gulp!  I haven't been getting billed either, but I know the equipment has to cost more than $3.00.

    p

    Ur right

    Yes it is getting silly Phrannie, I live in a medium size town in PA. There is not a single ENT practice that will take medicare patients anymore. More regulations go into effect soon, Sarah Palin was not wrong or stupid calling some decisions will be made by death panels. Look over the topics here for the past year and you will see that nobody is getting the same treatment level as I got at Penn State. I just had a scan of my neck and chest earlier this month, and I am a long way out from treatment. People are going to die because of no scans, H&N does spread, Delnative and ToBeGolden would testify to that if they were alive.

     

  • Ron Silver
    Ron Silver Member Posts: 94
    denistd said:

    Ur right

    Yes it is getting silly Phrannie, I live in a medium size town in PA. There is not a single ENT practice that will take medicare patients anymore. More regulations go into effect soon, Sarah Palin was not wrong or stupid calling some decisions will be made by death panels. Look over the topics here for the past year and you will see that nobody is getting the same treatment level as I got at Penn State. I just had a scan of my neck and chest earlier this month, and I am a long way out from treatment. People are going to die because of no scans, H&N does spread, Delnative and ToBeGolden would testify to that if they were alive.

     

    Thank all of you for your

    Thank all of you for your responses.  It seems that my situation is the norm.  

  • donfoo
    donfoo Member Posts: 1,771 Member

    I've been checking my EOB's

    since we got this new insurance....and all I can say is holy cow, how can the hospitals stay in business.  Like a lab was $104, and the insurance will allow $9.55....my blood test for my thyroid was $16.00....insurance allowed $3.00...gulp!  I haven't been getting billed either, but I know the equipment has to cost more than $3.00.

    p

    not all new ...

    When I went through all the treatments I was curious about insurance billing and reinbursements and was blown off my **** and reported my findings here long ago. When one looks at what providers bill and what is actually collected there can be a VAST difference. My experience was all pre-ACA so keep this in mind but Medicare has been cranking reinbursement rates down for a few years now and that includes oncology areas too.

    My rationale at the time was if Medicare was accepted that meant the provider was making some net revenue; otherwise, they would be out of business very soon. I then went to the CMS reinbursement book that is published each year and looked up a number of my coded billed items. There was often a 90% rate cut from what the provider billed and what was paid by Medicare. A hundred dollar charge was paid out at ten bucks.

    Of course this sounds really horrible on the surface but when you look at the ridiculous charge being billed then you understand why there can be such a dramatic reduction and what gets paid is usually fairly realistic. Look up the charges for the infusion and radiation treatments. Even with the million dollar machines and doctor and nurse salaries and such, getting 800 bucks net for a 10 minute procedure is not bad. (I forgot the actual amount for the rads). That's 3200 buck an hour and they were booked. Times two machines it is a money making operation no matter how you look at it.

    Another little know fact is the manufacturers of these expensive devices are tied into this whole process as it is the only way they can sell these machines unless there is a positive ROI to the buyer. When reinbursement rates fall, this puts pressure on pricing. The one area I did not further research is the subsidy structure between manufactures and the government to bridge the cost differentials. I am certain there are programs in place to enable the purchaser to make acquiring these devices somewhat feasible.

    There are liberal views here on the topic of public healthcare yet clearly the way ACA is going about it seems draconian but in the end how else can you bend the cost curve? Nobody ever just volunteers to take a cut anywhere. If you believe in the fundamental tenents of capitalism and its viability and applicability to the health care industry then it is a wait and see situation.

    Government is forcing the hand of the providers to reevaluate their cost structures and start dealing with making improvements and efficiencies. There is LOTS of fat and inefficiency in health care. Has anyone wondered why we are in the 21st century and now IT is just making a real dent? How ridiculous to think anything but the fact the industry was under NO pressure to pursue in earnest IT technologies to streamline and cut costs. EMR, so basic, is still not a reality. What a joke.

    Have you folks ever wondered why the corner urgent care charges 50 bucks for cleaning and bandaging a cut but the doctor's office charges 150 and the hospital ER charges 500? There are few other, if any, areas where consumers tolerate such ridiculous disparity. The hospital would change dramatically or be out of business in a blink as well as the doctor's office.

    My neighbor was the VP of Admin at a large local hospital and informed me that there are so many layers of rules and regulations it makes it impossible to operate a hospital efficiently. For example, the building code required throughout the facility is so stringent that all common sense is lost to building to a sufficiently adquate level. The door to his office had to be built to allow a gurney to pas through. Wiring and doors and all sorts of things are over speced due to inname regulations. So a lot needs to be done to unburden the providers as well to allow them to make the necessary changes and streamline their operations.

    OK, enough. You get the point. I just get REALLY fed up that all consumers cry poor me about the insanity of the healtcare industry. Yes, a huge part of the structural problem is we have NOT been consumers but finally that is changing. If you've not written your representatives, picked up the phone and called the county/state rep, gone to a town hall meeting, or done anything more than scream at the TV, then please reconsider making a difference and offering some suggestions drectly to them. They do listen

    This will get resolved; unfortunately, a lot of people are going to be hurt and inconenienced by it all. Too bad everything tends to be reactionary after the place catches on fire. Sorry for the rant but only wish well for all here! Good day.

  • denistd
    denistd Member Posts: 597
    Absolutely

    You are right on Don, the cost of healthcare has been getting out of hand over the past thirty years. Unfortunately the whole thing is going to lead to rationing. I cannot, for the life of me, understand the no scan thing after cancer, that it should be driven by cost is unacceptable, at least to me. As I said, people will die because of it. If I want to see an ENT specialist I now have to drive 50 miles to see him. Denis

  • Guzzle
    Guzzle Member Posts: 710
    denistd said:

    Absolutely

    You are right on Don, the cost of healthcare has been getting out of hand over the past thirty years. Unfortunately the whole thing is going to lead to rationing. I cannot, for the life of me, understand the no scan thing after cancer, that it should be driven by cost is unacceptable, at least to me. As I said, people will die because of it. If I want to see an ENT specialist I now have to drive 50 miles to see him. Denis

    Im from the UK. The National

    Im from the UK. The National Health Service (NHS) is a public body paid for from general taxation. When appropriate patients get scans indefinately. I don't think we pay much more tax than the USA but profit is driven out of the system. Even in an era of privatization the NHS remains public. To change this would probably bring down a government. Its not perfect but those suffering don't have to ration treatment. What happens if you have no insurance?

  • donfoo
    donfoo Member Posts: 1,771 Member
    denistd said:

    Absolutely

    You are right on Don, the cost of healthcare has been getting out of hand over the past thirty years. Unfortunately the whole thing is going to lead to rationing. I cannot, for the life of me, understand the no scan thing after cancer, that it should be driven by cost is unacceptable, at least to me. As I said, people will die because of it. If I want to see an ENT specialist I now have to drive 50 miles to see him. Denis

    rationing

    Denis,

    The constraints and lack of availability can be considered rationing I suppose. It can also be the effect of an unbalanced market: offers too low to provide service at current cost structure. Personally, I do believe the wake up is upon us and far less expensive treatments are coming, still allowing for a reasonable profit. Competition and innovation will drive costs down signficantly. Once common sense prevails getting that cut cleaned and bandaged will be availabe everywhere for very reasonable rates. I know even Walmart was planning on having a in-store walk-up clinic. Think about most CVS stores having walk-up services for many typical services provided at much higher costs.

    No doubt there will be a LOT of pain and suffering, that is to be expected. Think about each of us and if we have taken pay cuts or reduced hours and feel like crap having to cut out something of the budget. Unfortunately, cuts in health service are far more impactful; nonetheless, the same concept. It will take time but not forever for health care providers make the cost cuts to provide competitive services.  

    Lastly, I just do not read or hear the reason folks here get less scan is because the provider/doctor mentions insurance denials as the primary cause for fewer scans. I'd gladly go along with that assumption if I heard the case made more frequently.

  • donfoo
    donfoo Member Posts: 1,771 Member
    Guzzle said:

    Im from the UK. The National

    Im from the UK. The National Health Service (NHS) is a public body paid for from general taxation. When appropriate patients get scans indefinately. I don't think we pay much more tax than the USA but profit is driven out of the system. Even in an era of privatization the NHS remains public. To change this would probably bring down a government. Its not perfect but those suffering don't have to ration treatment. What happens if you have no insurance?

    ACA to the rescue

    Well, the theory is everyone in the USA should be able to obtain affordable health insurance. The general statistics is there are millions who qaulify for free (fully subsidized) health care through ACA and yet they are not signing up. Many feel ACA is just a mid-step toward full single payer system such as the NHS. As I've not experience both systems first hand, who knows how many here are now unable to affordably obtain basic and crtical healh services. ACA is just going to have to play out for awhile longer.

  • Guzzle
    Guzzle Member Posts: 710
    donfoo said:

    rationing

    Denis,

    The constraints and lack of availability can be considered rationing I suppose. It can also be the effect of an unbalanced market: offers too low to provide service at current cost structure. Personally, I do believe the wake up is upon us and far less expensive treatments are coming, still allowing for a reasonable profit. Competition and innovation will drive costs down signficantly. Once common sense prevails getting that cut cleaned and bandaged will be availabe everywhere for very reasonable rates. I know even Walmart was planning on having a in-store walk-up clinic. Think about most CVS stores having walk-up services for many typical services provided at much higher costs.

    No doubt there will be a LOT of pain and suffering, that is to be expected. Think about each of us and if we have taken pay cuts or reduced hours and feel like crap having to cut out something of the budget. Unfortunately, cuts in health service are far more impactful; nonetheless, the same concept. It will take time but not forever for health care providers make the cost cuts to provide competitive services.  

    Lastly, I just do not read or hear the reason folks here get less scan is because the provider/doctor mentions insurance denials as the primary cause for fewer scans. I'd gladly go along with that assumption if I heard the case made more frequently.

    If a health market is

    If a health market is functional it should be lean, coordinated and efficient. I am sure there is lots of waste in NHS but its there for everyone. Some Euro countries have insurance based systems which seem to work really well. Often have there is some state coordination. I hope you all get the best possible treatment.

  • Ron Silver
    Ron Silver Member Posts: 94
     
    My impression for the no

     

    My impression for the no scan "rule" is due to the insurance company.  No other reason.  I had this discussion with both the radiologist and oncologist.   The radiologist simply lied and made reference to how we "found things" prior to scans and implied that there was no benefit.  The oncologist pointed the finger at the insurance companies.  

    Doctors, radiologists, the whole lot of them are dishonest pond scum.  It is all about the dollars.  

    If you read my first post in this thread, anyone with even a smidgen worth of knowledge in this area could see how some type of scan schedule would be beneficial.  

    Well, a panel of experts agreed.  However, the insurance compainies have not.  And our "friends" in the medical profession who treat us, routinely lie to us.  Scum.

    http://www.mayoclinic.org/diseases-conditions/lung-cancer/in-depth/lung-ct-scan/art-20044852

    http://consumer.healthday.com/health-technology-information-18/cat-scan-news-88/u-s-panel-backs-routine-lung-ct-scans-for-older-heavy-smokers-683334.html

    https://www.google.com/search?q=ct+scans+for+smokers&oq=ct+scans+for+smokers&aqs=chrome..69i57.5554j0j1&sourceid=chrome&espv=210&es_sm=93&ie=UTF-8