When To Get The First PS/CT

Kent Cass
Kent Cass Member Posts: 1,898 Member
edited March 2014 in Head and Neck Cancer #1
As a number in our family are dealing with this issue, or have of recent, I would like to have a thread which only addresses this issue. For me, it was 2 1/2-months, and the results were "something might have shown" under my tongue. My ENT was so concerned about it that he scheduled my next PS/CT for 8-months later! Yeah, and that PS/CT came back entirely "clean." SO:

THIS BRINGS-UP THE ISSUE OF WHEN THE FIRST PS/CT SHOULD BE DONE. Hondo and I are of the opinion that 3-months is too early, and that 6-months is more appropriate. One entry stated that they were told there's was done so early- "to establish a baseline," by which following tests could be compared. Who is to say you will get your next PS/CT done at the same place? I got a choice of 4-5 places I could have my next done in the Quad Cities. Hey, Folks, we're talking about a $4,000-plus test that shoots radioactive isotopes into you, and the med community is gonna ho-hum it like it's just business-as-usual?! Were I to be able to do it all over again- I woulda refused the 2 1/2-month scenario, and told my Drs. that I'd be waiting for 6-months to pass. 3-months is just too danged early for anything that can be taken seriously to show- and all 3-months (like mine) are frought with false-positives and false alarms. My ENT said without any hesitation that he wasn't concerned with my first PS/CT results.

HAS ANYONE HAD A 3-MONTH THAT SHOWED ANYTHING THAT REALLY TURNED-OUT TO BE C? If so, please let us know.

And, as I have stated several times, if some real C showed after only 3-months, after the grueling treatment we all bear testimony to; yeah, it is my opinion that anyone with such would be justified in turning into Clint Eastwood then and there, and asking the Dr.- "How the H--- did you miss that, Doc? Uh...you better have a real good answer to that, Doc."

kcass

Comments

  • Fire34
    Fire34 Member Posts: 365
    #2
    Nothing here
    Kent
    My scans were a CT at 2 months and a PET at 3 months so far I had another CT at 5 months and all have been clear. As far as timing goes I am at the mercy of U of C as I was part of a clinical trial, so I dont know whether the trial is driving the timing or not. Sorry I couldn't help
    Dave
  • fbcuthguy
    fbcuthguy Member Posts: 15
    #3
    3 Mo CT here
    Kent-
    My docs at Vandy work on the schedule of a CT at 3 months and a PET at 6-8 months. They are definitely of the opinion that any PET done at 3 months would most likely have hot spots due to treatment and not be of any real use.
    Rob
  • stevenl
    stevenl Member Posts: 587
    #4
    fbcuthguy said:

    3 Mo CT here
    Kent-
    My docs at Vandy work on the schedule of a CT at 3 months and a PET at 6-8 months. They are definitely of the opinion that any PET done at 3 months would most likely have hot spots due to treatment and not be of any real use.
    Rob

    Hi Kent,

    I know that all docs are different and it seems that my questioning this was what probably got this thread started. I asked why my pet was so early and my ENT said he did not think it was too early. Now this is the guy that has just recently saved my life and is the highest recommended ENT in this area. So questioning him a lot was not on my agenda. What was in the plan however, was to do what he said. I did that today. While I think that it was too early I am not a physician. I went for my biopsies today and he told my wife after that nothing was there. I trust his decisions and will abide by what he tells me to do. They haven't completed the biopsies yet but it (pet) was showing a false positive.

    Oh and by the way, I did this at an out of pocket expense of 7,500.00. Thank you President Obama and BCBS of Texas. Due to the legislation, my ins. went up 42% and my employer had no choice other than to change our coverage just to keep his cost about the same.

    Best,
    Steve
  • Hondo
    Hondo Member Posts: 6,636 Member
    #5
    stevenl said:

    Hi Kent,

    I know that all docs are different and it seems that my questioning this was what probably got this thread started. I asked why my pet was so early and my ENT said he did not think it was too early. Now this is the guy that has just recently saved my life and is the highest recommended ENT in this area. So questioning him a lot was not on my agenda. What was in the plan however, was to do what he said. I did that today. While I think that it was too early I am not a physician. I went for my biopsies today and he told my wife after that nothing was there. I trust his decisions and will abide by what he tells me to do. They haven't completed the biopsies yet but it (pet) was showing a false positive.

    Oh and by the way, I did this at an out of pocket expense of 7,500.00. Thank you President Obama and BCBS of Texas. Due to the legislation, my ins. went up 42% and my employer had no choice other than to change our coverage just to keep his cost about the same.

    Best,
    Steve

    Steven

    I also have BCBS of Texas and we were just told that our cost will be going up by 25% this year. The problem is I can’t afford it and I can’t afford to be with out it, the only good thing I can say about this is I did not vote for Obama.
  • stevenl
    stevenl Member Posts: 587
    #6
    Hondo said:

    Steven

    I also have BCBS of Texas and we were just told that our cost will be going up by 25% this year. The problem is I can’t afford it and I can’t afford to be with out it, the only good thing I can say about this is I did not vote for Obama.

    Political
    Hi Hondo,

    I must say that you are ever faithful on this site and the help you give people is immeasurable. I think God is well pleased with you.

    I don't want this to turn into a political statement thread. It's just that my ins. was 2000.00 ded. and everything else was paid 100%, except of course for drugs and co-pays.
    I am like you Hondo, I can't be without it. I am looking at going on my wife's she also has bcbs and they will not have any pre existing condition.

    Kent, I apologize for the political comment. Won't happen again.

    Best,
    Steve
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #7
    stevenl said:

    Political
    Hi Hondo,

    I must say that you are ever faithful on this site and the help you give people is immeasurable. I think God is well pleased with you.

    I don't want this to turn into a political statement thread. It's just that my ins. was 2000.00 ded. and everything else was paid 100%, except of course for drugs and co-pays.
    I am like you Hondo, I can't be without it. I am looking at going on my wife's she also has bcbs and they will not have any pre existing condition.

    Kent, I apologize for the political comment. Won't happen again.

    Best,
    Steve

    No problem
    Money, for me was not an issue- also have BCBS, and the plan where once the deductible is met- everything is 100% paid/free, and I've been there awhile.

    The issue/question, though, remains: why have a PS/CT only 3-months post-treatment if all it is gonna do is show false-positives, and where the ENT, in my case, doesn't even take the results seriously?

    Perhaps the reason is in case the C went stage-4 to another area of the body, which was not radiated, is my only thought. And, yes, that would make sense. I don't know. Maybe my NPC, which showed with two neck tumors, was present enough in the lymph system that it spread to my spleen, or heart, etc., before the C&R were done, and such could be detected in a 3-month, post-treatment. That is the only sense I can make of it.

    By the way- on one of our local tv stations, today, there was a story about "new concern over the amount of radiation" one gets in tests over the course of their life, and how there is a proposal to set-up a monitoring system for each person's life-total of exposure to test rads. ARE YOU KIDDING ME!!! How much radiation have we gotten? Off the charts, I reckon. FYI.

    kcass
  • Hondo
    Hondo Member Posts: 6,636 Member
    #8
    stevenl said:

    Political
    Hi Hondo,

    I must say that you are ever faithful on this site and the help you give people is immeasurable. I think God is well pleased with you.

    I don't want this to turn into a political statement thread. It's just that my ins. was 2000.00 ded. and everything else was paid 100%, except of course for drugs and co-pays.
    I am like you Hondo, I can't be without it. I am looking at going on my wife's she also has bcbs and they will not have any pre existing condition.

    Kent, I apologize for the political comment. Won't happen again.

    Best,
    Steve

    Hi Steven

    You are right about not making this a political thread, I am sorry too Kent, I just get so fed up sometimes just trying to survive and then get hit with more problems like ins going up. I guess I should use more thought in what I say as it is not my intent to offend anyone.
  • Scambuster
    Scambuster Member Posts: 973
    #9
    Kent Cass said:

    No problem
    Money, for me was not an issue- also have BCBS, and the plan where once the deductible is met- everything is 100% paid/free, and I've been there awhile.

    The issue/question, though, remains: why have a PS/CT only 3-months post-treatment if all it is gonna do is show false-positives, and where the ENT, in my case, doesn't even take the results seriously?

    Perhaps the reason is in case the C went stage-4 to another area of the body, which was not radiated, is my only thought. And, yes, that would make sense. I don't know. Maybe my NPC, which showed with two neck tumors, was present enough in the lymph system that it spread to my spleen, or heart, etc., before the C&R were done, and such could be detected in a 3-month, post-treatment. That is the only sense I can make of it.

    By the way- on one of our local tv stations, today, there was a story about "new concern over the amount of radiation" one gets in tests over the course of their life, and how there is a proposal to set-up a monitoring system for each person's life-total of exposure to test rads. ARE YOU KIDDING ME!!! How much radiation have we gotten? Off the charts, I reckon. FYI.

    kcass

    Covering one's butt..
    Guys, I reckon the early scan is also a way our Doctors cover their butts. if they missed something during surgery or previous scopes/scans, they would 'maybe' pick it up. That way if you did find a recurrence later, they are covered as in 'they did everything possible. Does that justify the early scan ?? If something did exist, the 3 month Scan would be more likely to pick it up anyway, and then the question is how much would such a recurrence progress in the that time. I understand some recurrences can be highly aggressive as they were perhaps immune to the Chemo and hence thrive undeterred by the treatments.

    In general, Doctors tend to test the crap of people these days with every sort of diagnostic apparatus - I mean all conditions, not just Cancer. Frankly - in many cases, I don't believe this is good doctoring, but a delegation of care. This 'outsourcing' comes at our body and wallets expense. The reason used 'to establish a baseline' is again, for their benefit, not ours. I think the accuracy of early scans is very poor and the benefit does not justify the increased risk we suffer from the 'fallout' from PET/CT procedures.

    Steve i understand your trust in your excellent physician, but I would still ask the questions or ask for an explanation and express any concerns no matter how minor.

    Scam
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #10
    Hondo said:

    Hi Steven

    You are right about not making this a political thread, I am sorry too Kent, I just get so fed up sometimes just trying to survive and then get hit with more problems like ins going up. I guess I should use more thought in what I say as it is not my intent to offend anyone.

    No problem
    No need for anybody to apologize- the politicians have made medical care a major issue. The problem is, bottom-line, that healthcare costs have skyrocketed with new technology and capabilities, and salaries. Neither political party has been able to solve this problem, as costs have been a yearly increase since way back when. Funny thing is- people are healthier, now, than in the distant past: fewer people smoke, and we're more into caring what we eat, etc. Course, there's more people, now. Just compare what is done now, and what woulda been done 30-40 years ago for the same problem, and the costs of each= the real problem gets revealed. And the $4000 Pet Scans- didn't exist 30 years ago, etc., etc.

    Overnight stay in the Freeport, Il., hospital in late-68 was $45. My Dad was outraged when I got transferred to Chicago, where the overnight was $60! What is it now- $800? Or $1000? Same bed, in the same hospital, you know. Peoria in 1985, I was shocked to see an overnight bed was at $535.

    The medical field is major big business, and they don't want government to control the costs- the costs being the core problem. No major solution will happen until the cost issue is fixed, and there's one heckuva lotta power keeping that from happening. Figure they will eventually find a way to reduce costs by diverting the still-rising costs to you and I- the taxpayers, and that will be a no-fix solution. Sad, and it is wrong, but that's just the way it seems, to me.

    Again, no offense taken for any political references.

    kcass
  • Carolinagal
    Carolinagal Member Posts: 91
    #11
    My dad had a CT scan on May
    My dad had a CT scan on May 3rd -5 months after surgery. It showed a "grape sized mass". May 19th he had a PET scan - two tumors larger than what was removed in Dec. showed up. He is going through chemo now to help with the discomfort. That seems crazy but the Dr. said the side effects of chemo are better than the side effects of the tumors which are now in his brain. Because of the size and location surgery is not an option. My dad is suffering in a bad way while we hope and pray for a miracle. He had issues with infection since he started radiation. We were told last week that that could have been the cancer even then. If a 3 month scan could have caught it sooner so that it could have been removed you bet we'd have wanted that.
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #12
    Carolinagal said:

    My dad had a CT scan on May
    My dad had a CT scan on May 3rd -5 months after surgery. It showed a "grape sized mass". May 19th he had a PET scan - two tumors larger than what was removed in Dec. showed up. He is going through chemo now to help with the discomfort. That seems crazy but the Dr. said the side effects of chemo are better than the side effects of the tumors which are now in his brain. Because of the size and location surgery is not an option. My dad is suffering in a bad way while we hope and pray for a miracle. He had issues with infection since he started radiation. We were told last week that that could have been the cancer even then. If a 3 month scan could have caught it sooner so that it could have been removed you bet we'd have wanted that.

    Yes
    I appreciate that, Carolinagal, but that isn't exactly what's on the table: my question about the first PS/CT is in regards to post-C&R- treatment. You say your Dad had the scans 5-months after surgery. If he had the scans 5-months after a surgical dissection, then C&R treatment, and the C showed-up then- that would be what I'm asking about.

    Hopes and Prayers are with your Dad, gal. No doubt about that. You say he had surgery, then mentioned radiation. Did he have dissection surgery to remove tumors, and where were the tumors? Was that followed by radiation, but not chemo? Or, did he just have the dissection? If he had surgery to remove tumors in, for instance, the neck, and then radiation- it would seem your Drs. were in error as to the state/stage of your Dad's C, and that it should've been dealt with more aggressively. I do know that after a certain age, though, chemo brings-about risks that younger people are not as subject to, and sometimes chemo is not considered an option. Again, your Dad is in my Prayers.

    Believe

    kcass
  • Scambuster
    Scambuster Member Posts: 973
    #13
    Kent Cass said:

    Yes
    I appreciate that, Carolinagal, but that isn't exactly what's on the table: my question about the first PS/CT is in regards to post-C&R- treatment. You say your Dad had the scans 5-months after surgery. If he had the scans 5-months after a surgical dissection, then C&R treatment, and the C showed-up then- that would be what I'm asking about.

    Hopes and Prayers are with your Dad, gal. No doubt about that. You say he had surgery, then mentioned radiation. Did he have dissection surgery to remove tumors, and where were the tumors? Was that followed by radiation, but not chemo? Or, did he just have the dissection? If he had surgery to remove tumors in, for instance, the neck, and then radiation- it would seem your Drs. were in error as to the state/stage of your Dad's C, and that it should've been dealt with more aggressively. I do know that after a certain age, though, chemo brings-about risks that younger people are not as subject to, and sometimes chemo is not considered an option. Again, your Dad is in my Prayers.

    Believe

    kcass

    PET/CT ENT's View
    Hi Guys,

    I saw my friendly ENT guy today for a 3 mthly checkup. All good. I asked him about the frequency of the PET/CT and the inherent dangers etc. He said the 1st one at about 6 mths and then the next one - 1 year later. He said after 2 years, it the last was all clear, no need to do another.

    The guy who actually does my PET/CT (Chemo Ali) would scan me every 3 months if I agreed. They cost about $4-5,000 + his consult and then analysis each time. Makes you wonder.

    It's a tough question to balance early detection over the risk of the Scan causing damage or cancer. No easy answer. i suppose it really depends how confident you feel to make them far apart. My first post Tx was December and i think I will wait till next December for my next one.

    REgds
    Scam
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #14
    Scambuster said:

    PET/CT ENT's View
    Hi Guys,

    I saw my friendly ENT guy today for a 3 mthly checkup. All good. I asked him about the frequency of the PET/CT and the inherent dangers etc. He said the 1st one at about 6 mths and then the next one - 1 year later. He said after 2 years, it the last was all clear, no need to do another.

    The guy who actually does my PET/CT (Chemo Ali) would scan me every 3 months if I agreed. They cost about $4-5,000 + his consult and then analysis each time. Makes you wonder.

    It's a tough question to balance early detection over the risk of the Scan causing damage or cancer. No easy answer. i suppose it really depends how confident you feel to make them far apart. My first post Tx was December and i think I will wait till next December for my next one.

    REgds
    Scam

    Interesting
    My one-year was in early April, Scam, but they're talking about me staying on the 6-month schedule. My 2-year will be next April, and that would be cool to be my last. Your ENT's opinion on the 1st PS/CT is very interesting, as that's what I think our experience is telling us might be the way it should be with the majority of us. Only sense I can make of a 3-month is to check-out areas not treated by the rads.

    Hey- glad to hear your 3-month ENT went great. Bet ya felt pretty good leaving the ENT office. Excellent.

    kcass
  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #15
    Carolinagal said:

    My dad had a CT scan on May
    My dad had a CT scan on May 3rd -5 months after surgery. It showed a "grape sized mass". May 19th he had a PET scan - two tumors larger than what was removed in Dec. showed up. He is going through chemo now to help with the discomfort. That seems crazy but the Dr. said the side effects of chemo are better than the side effects of the tumors which are now in his brain. Because of the size and location surgery is not an option. My dad is suffering in a bad way while we hope and pray for a miracle. He had issues with infection since he started radiation. We were told last week that that could have been the cancer even then. If a 3 month scan could have caught it sooner so that it could have been removed you bet we'd have wanted that.

    Carolinagal, I am so
    Carolinagal, I am so saddened by your news. I will put your dad in my prayers. It is so hard to hear that kind of news and I'm sorry that you and your family will have to fight the battlle again. Please try to stay positive and stay strong as your dad will really need you. Take cane and know that we will all be pulling for your dad.
    God bless you friend,
    debbie

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