Scan Type and Frequency

buzz99

I know this subject has been brought up before but I couldn't find the answer in previous posts. I would like to know what frequency scans are done post-treatment. Buzz has had scans every three months. Out of 5 scans, 3 have been PET scans which have shown increased activity in several areas. September's scan showed a necrotic lymph node with lots of areas of increased activity indicating the cancer was back. He was scheduled for a biopsy. Instead of cancer, he had an abscess in his neck which resulted from an infected blood clot in the jugular vein. The biopsy was negative. Post infection CT scans show improvement and no evidence of cancer. Now the oncologist wants another scan in February (a 3 month interval). I am questioning the need for continued scans every three months and would like to wait 3 additional months. BTW, Buzz is doing great. Wondering what everyone else has experienced.

Hondo

PET / CT

For me my PET scans were every 6 months for the last 6 years. The last time something showed up new in the Lungs so the doctor wanted a PET at 3 months. As normal for me nothing ever chances so now I go by how I feel and I feel like a Rock.

God bless you both
Hondo

sweetblood22

I've not had any scans since
I've not had any scans since radiation. Dr feels in my case, that he does not want me to have any more radiation like in PET Scans. I am also allergic to diagnostic dye, for CT Scans. In my case, he feels the risk, out weighs any benefits. So, for now, only exams, and chest x-rays.

robinleigh

Scans
Sounds like you are weighing the risk of radiation from ct scans... I still want them for Andy because we need to know if his cancer is responding to treatment. Guess it really depends on your individual situation.

longtermsurvivor

I suspect there is no industry standard
My ENT oncologist alternates CT with PET, q 3 months during the first year. I've become a little superstitious myself, as none of my malignancies have ever shown up on CT. They all have been found on PET. Pretty expensive, yes. Don't know what the rest of you are paying, but PET costs me about $5500 per shot.....

Skiffin16

Similar to LTS Starting Out
Mine were similar to Pat starting out....

I had a CT every three months for the first year, two of those (six months apart were PET scans). Also, my PET scans are billed at something close to $8000 before the agreed contract price of my provider, CT around $2000 before.

My first year, I had scans about every three months, year two every four months, now every six months, a CT one, a PET the next.

Personally, I don't second guess my MD's, if they feel it's warranted, I get it done. I've never had reason to feel they are gouging me or taking advantage of the system.

I believe they have my best health interest in mind.

Best,
John

jtl

longtermsurvivor said:

I suspect there is no industry standard
My ENT oncologist alternates CT with PET, q 3 months during the first year. I've become a little superstitious myself, as none of my malignancies have ever shown up on CT. They all have been found on PET. Pretty expensive, yes. Don't know what the rest of you are paying, but PET costs me about $5500 per shot.....

Scans
I just got back from my ENT. I have my first PET scheduled for Feb 1 per the rad enc. The ENT thinks I could wait a year after that one based on my prognosis and the fact that he can visually see the radiated area with just an exam mirror. I will wait and see what the rad enc says after my Feb appointment. Wow, Pat. That is a bunch of money, I am thankful that I have insurance and have yet to see a bill for anything.

longtermsurvivor

jtl said:

Scans
I just got back from my ENT. I have my first PET scheduled for Feb 1 per the rad enc. The ENT thinks I could wait a year after that one based on my prognosis and the fact that he can visually see the radiated area with just an exam mirror. I will wait and see what the rad enc says after my Feb appointment. Wow, Pat. That is a bunch of money, I am thankful that I have insurance and have yet to see a bill for anything.

We don't talk about insurance much
on the board. I had good third party insurance with my first malignancy in 1998. Then the company went bankrupt. No one has ever agreed to underwrite me since then, as "preexisting disease" is a slam dunk for those of us who have had cancer. Have you ever looked at the individual costs of what we get into? Last year, the surgeon's fee alone for my radical surgery was over $25,000. That was just the surgeon's fee, not the hospital bill.

The medical oncologist charged $3400 for his original office visit back in October. My first session of chemo, which included Carboplatin, Taxotere, and Erbitux was over $18000.

Thankfully, I did eventually qualify for Social Security Disability, and am now on Medicare. Even this is a problem, as I can't buy supplemental insurance. It isn't available if you are on disability. So I get about 20% of the charges passed on to me.

I shudder when I see people getting MRI's and PET's simultaneously. The MRI's are over 5k, so if you get these and PET scans every quarter, the annual cost is oabout $50000.

Wow.

D Lewis

Everyone's schedule is unique.
Wow, I'm amazed at the variation here. I had base-of-tongue SCC with lymph node mets, HPV+, and I guess it's easy to see my cancer site with a scope. The docs also shove their fingers down my throat and palpate every six weeks.

I am now roughly 21 months out from end of treatment. I had an MRI at 2 months, a PET-CT at 3 months, and a follow up PET-CT at 18 months. I still see my doctors every six weeks, though. I've been told that if nothing appears abnormal with the scope and palpation, I won't need another PET-CT for another 18 months.

Deb

Skiffin16

D Lewis said:

Everyone's schedule is unique.
Wow, I'm amazed at the variation here. I had base-of-tongue SCC with lymph node mets, HPV+, and I guess it's easy to see my cancer site with a scope. The docs also shove their fingers down my throat and palpate every six weeks.

I am now roughly 21 months out from end of treatment. I had an MRI at 2 months, a PET-CT at 3 months, and a follow up PET-CT at 18 months. I still see my doctors every six weeks, though. I've been told that if nothing appears abnormal with the scope and palpation, I won't need another PET-CT for another 18 months.

Deb

Scopes
Are a different story for me...

I have had scopes pretty much evey 6 - 8 weeks the first year. Every 3 - 4 months the second and starting this year every 6 months.

JG

ratface

longtermsurvivor said:

I suspect there is no industry standard
My ENT oncologist alternates CT with PET, q 3 months during the first year. I've become a little superstitious myself, as none of my malignancies have ever shown up on CT. They all have been found on PET. Pretty expensive, yes. Don't know what the rest of you are paying, but PET costs me about $5500 per shot.....

Standards are somewhat skewed
toward the insurance companies. (personal experience only) You can find them at "The National Comprehensive Cancer Network" Scan schedules are listed by type of cancer. It gets very dependent on many variables. Head and Neck cancers that have shown no signs of progression, they use the word "atypical" , are only recommended for a chest x-ray. It's an interesting read on a snowy day.

Cancer patients are eligible for "pre-existing condition coverage" under the new health guidelines but you have to apply and get denied to qualify. Some information in the "Super thread" about insurance.

Skiffin16

longtermsurvivor said:

We don't talk about insurance much
on the board. I had good third party insurance with my first malignancy in 1998. Then the company went bankrupt. No one has ever agreed to underwrite me since then, as "preexisting disease" is a slam dunk for those of us who have had cancer. Have you ever looked at the individual costs of what we get into? Last year, the surgeon's fee alone for my radical surgery was over $25,000. That was just the surgeon's fee, not the hospital bill.

The medical oncologist charged $3400 for his original office visit back in October. My first session of chemo, which included Carboplatin, Taxotere, and Erbitux was over $18000.

Thankfully, I did eventually qualify for Social Security Disability, and am now on Medicare. Even this is a problem, as I can't buy supplemental insurance. It isn't available if you are on disability. So I get about 20% of the charges passed on to me.

I shudder when I see people getting MRI's and PET's simultaneously. The MRI's are over 5k, so if you get these and PET scans every quarter, the annual cost is oabout $50000.

Wow.

2009 Insurance Billed Amount
For 2009, my total billed amount was over $275,000...contracted amount allowable was over $90,000. Thankfully my total out of pocket was $3,750 which included my deductible of $750.

I haven't looked at the numbers for 2010 and 2011, but I do know that I reached my max out of pocket this year. But I also had a few other things going on...arthoscopy to one knee for one.

Since I already met my max out of pocket, I decided to take my ENT's suggestion and get the Septoplasty.

I've had a deviated septum for close to forty years. If I had to survive from nose breathing I'd be a goner... I broke my nose a few times back in high school...between football, and apparently not being able to block a punch, LOL...

Anyways my ENT has urged me several times (he's also my main scope man and cancer MD)....my nose structure was like an S. Always the luck of the draw which nostril was more open for a scope. Depending on weather, sinuses, or other swelling going on.

I'll make sure to tease him that the restructuring was more for him than me...to get it fixed.

Anyways, I'm healing up from that..., not too bad and even swollen and sore, I can already notice a difference.

Best,
John

jtl

longtermsurvivor said:

We don't talk about insurance much
on the board. I had good third party insurance with my first malignancy in 1998. Then the company went bankrupt. No one has ever agreed to underwrite me since then, as "preexisting disease" is a slam dunk for those of us who have had cancer. Have you ever looked at the individual costs of what we get into? Last year, the surgeon's fee alone for my radical surgery was over $25,000. That was just the surgeon's fee, not the hospital bill.

The medical oncologist charged $3400 for his original office visit back in October. My first session of chemo, which included Carboplatin, Taxotere, and Erbitux was over $18000.

Thankfully, I did eventually qualify for Social Security Disability, and am now on Medicare. Even this is a problem, as I can't buy supplemental insurance. It isn't available if you are on disability. So I get about 20% of the charges passed on to me.

I shudder when I see people getting MRI's and PET's simultaneously. The MRI's are over 5k, so if you get these and PET scans every quarter, the annual cost is oabout $50000.

Wow.

Insurance
I know more about insurance costs than most. Until I recently went on Medicare I was paying $1500 per month and had no choice since I previously had prostate cancer. The policy was an extension of a group policy from 10 years ago. Given all of the years that I paid the big premiums Aetna was way ahead of me verus paid claims. One year they paid out $11K for my prostate surgery and related tests. The rest of the 10 years it was only an annual physical and couple of stress tests.

jtl

ratface said:

Standards are somewhat skewed
toward the insurance companies. (personal experience only) You can find them at "The National Comprehensive Cancer Network" Scan schedules are listed by type of cancer. It gets very dependent on many variables. Head and Neck cancers that have shown no signs of progression, they use the word "atypical" , are only recommended for a chest x-ray. It's an interesting read on a snowy day.

Cancer patients are eligible for "pre-existing condition coverage" under the new health guidelines but you have to apply and get denied to qualify. Some information in the "Super thread" about insurance.

I believe you need to be
I believe you need to be without insurance for 6 months but I haven't had the need to check it out lately. In 2014 the whole pre-existing issue goes away.

longtermsurvivor

jtl said:

Insurance
I know more about insurance costs than most. Until I recently went on Medicare I was paying $1500 per month and had no choice since I previously had prostate cancer. The policy was an extension of a group policy from 10 years ago. Given all of the years that I paid the big premiums Aetna was way ahead of me verus paid claims. One year they paid out $11K for my prostate surgery and related tests. The rest of the 10 years it was only an annual physical and couple of stress tests.

Gap insurance
Have you had any luck finding Medigap insurance? This is an issue that completely defeated me. And I've spent a lot of time trying to solve it, with no luck whatsoever.

longtermsurvivor

Skiffin16 said:

2009 Insurance Billed Amount
For 2009, my total billed amount was over $275,000...contracted amount allowable was over $90,000. Thankfully my total out of pocket was $3,750 which included my deductible of $750.

I haven't looked at the numbers for 2010 and 2011, but I do know that I reached my max out of pocket this year. But I also had a few other things going on...arthoscopy to one knee for one.

Since I already met my max out of pocket, I decided to take my ENT's suggestion and get the Septoplasty.

I've had a deviated septum for close to forty years. If I had to survive from nose breathing I'd be a goner... I broke my nose a few times back in high school...between football, and apparently not being able to block a punch, LOL...

Anyways my ENT has urged me several times (he's also my main scope man and cancer MD)....my nose structure was like an S. Always the luck of the draw which nostril was more open for a scope. Depending on weather, sinuses, or other swelling going on.

I'll make sure to tease him that the restructuring was more for him than me...to get it fixed.

Anyways, I'm healing up from that..., not too bad and even swollen and sore, I can already notice a difference.

Best,
John

Ouch
Here's a little known fact. Your bill, and mine, are paid at a reduced rate to the provider. They are subject to a contractural write-off which is agreed upon between provider and insurer when the contract is signed at the start of each year. So if you are billed, say, $100,000.00, the "usual and customary" contractural write-off may be 30%, or much more of this amount. The insurance company therefore pays maybe $70,000, and that's all. In the case of Medicare, the amount may be $10,000.00, and no more. The healthcare provider cannot legally bill you for the difference.

If you don't have insurance, that same bill of $100,000.00 is the bill you get. It is illegal for the healthcare provider to write any of it off. So you get a much higher bill than any one with insurance gets.

It's just a little grace-note to the crisis of health-care costs.

My out of pocket for chemo this go-around is about $15,000.00. The scans and the hospital stuff have been covered pretty well. It will be interesting to see what I get socked for from the IMRT.

jtl

longtermsurvivor said:

Gap insurance
Have you had any luck finding Medigap insurance? This is an issue that completely defeated me. And I've spent a lot of time trying to solve it, with no luck whatsoever.

Pat
Yes, I have an AARP (United Healthcare)supplemental policy that covers all the ded and co-pays. It is about $170 per month on top of my $115 Medicare part B. I like it because I do not need any referrals, just make my own choices.

longtermsurvivor

jtl said:

Pat
Yes, I have an AARP (United Healthcare)supplemental policy that covers all the ded and co-pays. It is about $170 per month on top of my $115 Medicare part B. I like it because I do not need any referrals, just make my own choices.

Jealous, I am
You must be on regular Medicare. Unfortunately, I qualified due to disability, and have not yet made the age requirement for regular Medicare. I just can't buy it. Dang.

jtl

longtermsurvivor said:

Jealous, I am
You must be on regular Medicare. Unfortunately, I qualified due to disability, and have not yet made the age requirement for regular Medicare. I just can't buy it. Dang.

Don't be jealous
This is one, if not the only benefit to getting old.

Skiffin16

longtermsurvivor said:

Ouch
Here's a little known fact. Your bill, and mine, are paid at a reduced rate to the provider. They are subject to a contractural write-off which is agreed upon between provider and insurer when the contract is signed at the start of each year. So if you are billed, say, $100,000.00, the "usual and customary" contractural write-off may be 30%, or much more of this amount. The insurance company therefore pays maybe $70,000, and that's all. In the case of Medicare, the amount may be $10,000.00, and no more. The healthcare provider cannot legally bill you for the difference.

If you don't have insurance, that same bill of $100,000.00 is the bill you get. It is illegal for the healthcare provider to write any of it off. So you get a much higher bill than any one with insurance gets.

It's just a little grace-note to the crisis of health-care costs.

My out of pocket for chemo this go-around is about $15,000.00. The scans and the hospital stuff have been covered pretty well. It will be interesting to see what I get socked for from the IMRT.

Contracted Price...
Yes, that's what I was referring between the $275K, versus $90K....

As for my 35 IMRT, and associated radiology treatment, if I remember correctly the contracted price (out of that $90K above, was around $35K).

JG