CAT scan confusion

My husband had the last of his 35 radiation treatments on 9/2. He has an appointment to have his first follow up CAT scan on 9/30. A friend who was receiving treatment at the same time as he was and has the same doctor was told to get his CAT scan 6-8 weeks after his last treatment. Do you guys know what the general rule of thumb is for follow up CAT scans/PET scans. My husband was diagnosed with stage 4 BOT. Treatment was 35 radiation treatments and three rounds of Cisplatin chemo two days a week every 3 weeks for a total of 6 chemo treatments. Just wondering if we're getting the scan too early or if it depends on your insurance as to when you can get scans done. Thanks guys!

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Comments

  • CivilMatt
    CivilMatt Member Posts: 4,721 Member
    might read hot

    NJMOM,

    12 weeks for me PET Scan.

    Matt

  • Ladylacy
    Ladylacy Member Posts: 773 Member
    CT

    My husband's first CT scan was too early after he completed radiation and chemo and they missed the fact that the tumor was still there due to all the swelling.  When we were referred to a head and neck specialist, he told us that PET/CT scan's weren't generally done until 3 months after radiation was completed due to swelling.  Maybe your husband's doctor just wants to check to see if treatment showed any signs of working.  My husband's cancer was laryngeal and he was a Stage 3 due to the size of the tumor but had no spread.  Still we were told he was clear when he wasn't and the tumor continued to grow and block his breathing and he ended up having another biopsy and a trach and then we were referred to a head and neck specialist for surgery.

    I would definitely check with your insurance to make sure they will cover one this soon after treatment.  Many won't.

    Wishing you peace and comfort -- Sharon

  • Barbaraek
    Barbaraek Member Posts: 626
    Timing of scan

    We were told nothing earlier than 12-13 weeks, due to swelling and the way tx affects the way things look for a while. We were also told not to panic if a hot spot showed up on the first scan post treatment because it takes a while to really see what is going on there after radiation. My husband finished radiation 7/17 and is schedueled for his first scan on 10/19. They will be doing a PET/CT scan. And our follow up isn't until four days later  (Surprised)

     

    Barbara

  • NJMOM
    NJMOM Member Posts: 64
    Barbaraek said:

    Timing of scan

    We were told nothing earlier than 12-13 weeks, due to swelling and the way tx affects the way things look for a while. We were also told not to panic if a hot spot showed up on the first scan post treatment because it takes a while to really see what is going on there after radiation. My husband finished radiation 7/17 and is schedueled for his first scan on 10/19. They will be doing a PET/CT scan. And our follow up isn't until four days later  (Surprised)

     

    Barbara

    Cause of my concern

    Your responses and other things I've stumbled across cause my great concern. I was hoping and praying that we'd have some sort of definitive answer when we went for the CAT scan as to whether we has achieved the success we are hoping for. I am now wondering why we would be going for it so soon after treatment ended as it appears most, if not all of you, waited at least 3 months?? 

  • hrowe
    hrowe Member Posts: 57
    My first PET was 9 or 10

    My first PET was 9 or 10 weeks out and I lit up in the lung area. My medical onc thought the rad onc did it too early and said no way SCC would spread that fast. It was probably inflamation. Had a subsequent PET many weeks later and zero uptake shown. This was back in 2012.

    MAKE SURE THE ONCOLOGIST PRECERTS the scan. If insurance precerts they could always come back and deny as not medically necessary/investigational. You would not be liable. The provider has to eat the cost.

  • MrsBD
    MrsBD Member Posts: 615 Member
    PET/CT

    Definitely ask the doctor about the purpose of the scan. Sharon may be right that they are just looking for signs of success at that point. My scan was three months after treatment ended. It is a long time to wait, but no one wants a false reading. As you've probably seen before on this site, patience is the name of the game with so many aspects of this disease. 

  • NJMOM
    NJMOM Member Posts: 64
    MrsBD said:

    PET/CT

    Definitely ask the doctor about the purpose of the scan. Sharon may be right that they are just looking for signs of success at that point. My scan was three months after treatment ended. It is a long time to wait, but no one wants a false reading. As you've probably seen before on this site, patience is the name of the game with so many aspects of this disease. 

    Patience...

    While I would love to know today that we have had success with his plan of treatment, I would much rather have concrete results instead of a false positive or to hear that we have to come back in another two months to have real answers. I foolishly thought we would know something next week when we go for the CAT scan and from all I've read that's not going to be the case...super bummed that we'll probably still be in the dark. :(

  • Barbaraek
    Barbaraek Member Posts: 626
    NJMOM said:

    Patience...

    While I would love to know today that we have had success with his plan of treatment, I would much rather have concrete results instead of a false positive or to hear that we have to come back in another two months to have real answers. I foolishly thought we would know something next week when we go for the CAT scan and from all I've read that's not going to be the case...super bummed that we'll probably still be in the dark. :(

    Scans

    will be in the future for quite a while. I guess we will just have to hang in there each time they roll around. As hard as it us for me the wife/cheerleader/supporter, it has got to be 10 times harder for my husband. I'm just trying to remember my Lamaze training from 25 years ago!

    Barbara

  • wmc
    wmc Member Posts: 1,804
    That is two different scans......

    Having a CT scan is different then having a PET/CT or PET/MRI as the PET is nuclear. Having a CT early will let the doctors know if it is doing what they want. They will wait for a PET/CT because you can often get false readings if done too early. Also the cost is more than 20 ~ 30 times greater for a PET and insurance want's to know it is needed. They billed my insurance $12,000 and they will pay the agread anount of $8,000. a CT is about $350.

  • ratface
    ratface Member Posts: 1,337 Member
    wmc said:

    That is two different scans......

    Having a CT scan is different then having a PET/CT or PET/MRI as the PET is nuclear. Having a CT early will let the doctors know if it is doing what they want. They will wait for a PET/CT because you can often get false readings if done too early. Also the cost is more than 20 ~ 30 times greater for a PET and insurance want's to know it is needed. They billed my insurance $12,000 and they will pay the agread anount of $8,000. a CT is about $350.

    The first one is just a line in the sand

    The first Ct scan is just a baseline measurement and by itself will have very little meaning. Don't read anymore into 4 weeks vs. 6 weeks vs. 3 months because it means very little until there is a second scan to compare it to.  Perhaps your doctor likes an early baseline measurement to facilitate comparison down the road.  It is unlikely an insurance company will object to a first scan. This is a chronic disease and it takes little baby steps to measure anything. You will get little bits of information at each scan. He will be put on a scan protocol after this one consistent with his symptoms, something like a scan every 4 months or every six months with each scan compared to the last one. What a scan reveals isn't as important as the degree of change between scans. This is probably why it takes almost two years for them to determine treatment response and we all respond at our own pace. Hang in there it's just a slow process. All the best!

  • NJMOM
    NJMOM Member Posts: 64
    ratface said:

    The first one is just a line in the sand

    The first Ct scan is just a baseline measurement and by itself will have very little meaning. Don't read anymore into 4 weeks vs. 6 weeks vs. 3 months because it means very little until there is a second scan to compare it to.  Perhaps your doctor likes an early baseline measurement to facilitate comparison down the road.  It is unlikely an insurance company will object to a first scan. This is a chronic disease and it takes little baby steps to measure anything. You will get little bits of information at each scan. He will be put on a scan protocol after this one consistent with his symptoms, something like a scan every 4 months or every six months with each scan compared to the last one. What a scan reveals isn't as important as the degree of change between scans. This is probably why it takes almost two years for them to determine treatment response and we all respond at our own pace. Hang in there it's just a slow process. All the best!

    Thanks Ratface

    Thanks for your input, Ratface! I think we both thought that next week's CAT scan was going to tell us whether we won the battle or not.  We are set up to meet the head and neck team in late October to have another scope done and I'm hoping that if this first CAT scan doesn't tell us anything definitive that there will something from the scope appt that will give us answers.  When you watch someone fight the battle of their life and see all the struggles you guys endure, you just want so bad to know that it's all worth it in the long run. If I'm understanding the responses from my post, I shouldn't get my hopes up that we're going to know anything of substance from this first scan. More of the waiting game.....

  • NJMOM
    NJMOM Member Posts: 64
    Barbaraek said:

    Scans

    will be in the future for quite a while. I guess we will just have to hang in there each time they roll around. As hard as it us for me the wife/cheerleader/supporter, it has got to be 10 times harder for my husband. I'm just trying to remember my Lamaze training from 25 years ago!

    Barbara

    So true

    So true, Barbara, so true!! It's so difficult to be positive and upbeat all the time when you see all the suffering they are going through.  You just want so bad to know that all of the aches, pains, treatments, etc that they have to endure have been worth it. To know today that it's all been worth what he's had to go through and continues to go through would be a priceless gift. Guess we have no choice but to just hang in there and continue to be their support team. Wishing you the best as well!

  • yensid683
    yensid683 Member Posts: 349
    mine read hot

    even though the first post-radiation PET scan was 3 months later.  I too had SCC BOT, stage IVa with left cervical lymph node involvement.  My wife, much like you, had great frustration with the doctors and the amount of time between the end of treatments and the scan, she too wanted to know NOW that it worked. 

    My scan showed a great improvement over the initial scan, and at first the approach was going to be a 'watch it' but the tumor board recommended a selective neck dissection.  Several nodes were positive, but it was explained to me that the 'positive' result was more of a full disclosure, the report showed just a few cells that were termed 'weak and inactive'. 

    I had another scan 5 months later and it showed additional hot nodes as well, it prompted a referall to a specialist in head and neck cancers and a second selective neck dissection.  Several suspicious nodes were removed, and fortunately all tested negative.

    I would definitely (DEFINITELY) ask his doctor why they want to do a CT now and what they're looking for as a result.

     

    :-)

  • NJMOM
    NJMOM Member Posts: 64
    Ladylacy said:

    CT

    My husband's first CT scan was too early after he completed radiation and chemo and they missed the fact that the tumor was still there due to all the swelling.  When we were referred to a head and neck specialist, he told us that PET/CT scan's weren't generally done until 3 months after radiation was completed due to swelling.  Maybe your husband's doctor just wants to check to see if treatment showed any signs of working.  My husband's cancer was laryngeal and he was a Stage 3 due to the size of the tumor but had no spread.  Still we were told he was clear when he wasn't and the tumor continued to grow and block his breathing and he ended up having another biopsy and a trach and then we were referred to a head and neck specialist for surgery.

    I would definitely check with your insurance to make sure they will cover one this soon after treatment.  Many won't.

    Wishing you peace and comfort -- Sharon

    Thanks Sharon!

    Wish the doctors would have told us not to put too much stock into this first scan. I think both my husband and I were thinking that we were going to get answers one way or another after this first scan to tell us whether we had any success with his treatments. It appears as though that will not be the case. I'm glad this site is here with people who have first hand experience to help get through these troubling times. Guess we just sit back and wait a little longer to get some of the answers we are looking for.

  • sammydiego
    sammydiego Member Posts: 5
    For me I was told that even

    For me I was told that even if it shows good on the scan,taking the pet one ,6-8wks out, will give a better read.Gives it time for the inflamation to go down and not show a false hot point on the pet.all the best to you,Sam

  • NJMOM
    NJMOM Member Posts: 64

    For me I was told that even

    For me I was told that even if it shows good on the scan,taking the pet one ,6-8wks out, will give a better read.Gives it time for the inflamation to go down and not show a false hot point on the pet.all the best to you,Sam

    Thanks Sam

    i guess patience is needed to get through this whole process...on both of our parts. My husband just wants life to return to normal ASAP. For him normal means, no more extra mucous, being able to taste food again, etc. My normal is wanting to stop worrying about whether the cancer is gone or not. Oh, how simple life was before we got the diagnosis! 

  • wmc
    wmc Member Posts: 1,804
    NJMOM said:

    Thanks Sam

    i guess patience is needed to get through this whole process...on both of our parts. My husband just wants life to return to normal ASAP. For him normal means, no more extra mucous, being able to taste food again, etc. My normal is wanting to stop worrying about whether the cancer is gone or not. Oh, how simple life was before we got the diagnosis! 

    I had a PET/CT before surgery

    I had a PET/CT before my surgery and never needed chemo or radition, so I have never had any CT or PET/CT after surgery. In six days it will be two years. 

    With having radition you need to just give it more time, as you're still cooking for several weeks after treatment. The first CT will be to see how it looks but mostly a baseline. In a few months after it settles down they will most likely do a PET/CT.  You will most likely hear that everything is looking good, and also get to here NED [No Evidence of Disease]

    Bill 

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    3 months for me.  i was told

    3 months for me.  i was told that any sooner could possibly show too many "false" positives.  

    God bless you,

    dj

  • LumpinmyThroat
    LumpinmyThroat Member Posts: 98
    Early

    That is quite early... your husband will still have a lot going on in his treated areas and it is unlikely that the doctors could declare treatment a success by this first scan.  However, the more data the better.  Having this scan to compare to the next one will give the docs more info about his progress.  If you're not paying out-of-pocket for it, it can't hurt. 

     

    Prepare yourself mentally for what the results will be... they are likely to see tumor still hanging out in there.  It takes awhile for it to shrink away after treatment is completed.  The PET he has in three months from now will tell whether that remaining tumor is active or not. 

    We found this multiple scan/waiting game difficult.  My husband's first scan showed smaller tumor areas, but we were distressed that there was tumor at all.  We anticipated being told they were gone.  We were unrealistic.  It takes time to get true results.  For us, the PET at six months was really telling.  Nothing lit up and nothing had grown.  Six months is a long time to wait, I know, but you can do it!  :)

  • Kenny-
    Kenny- Member Posts: 98

    Early

    That is quite early... your husband will still have a lot going on in his treated areas and it is unlikely that the doctors could declare treatment a success by this first scan.  However, the more data the better.  Having this scan to compare to the next one will give the docs more info about his progress.  If you're not paying out-of-pocket for it, it can't hurt. 

     

    Prepare yourself mentally for what the results will be... they are likely to see tumor still hanging out in there.  It takes awhile for it to shrink away after treatment is completed.  The PET he has in three months from now will tell whether that remaining tumor is active or not. 

    We found this multiple scan/waiting game difficult.  My husband's first scan showed smaller tumor areas, but we were distressed that there was tumor at all.  We anticipated being told they were gone.  We were unrealistic.  It takes time to get true results.  For us, the PET at six months was really telling.  Nothing lit up and nothing had grown.  Six months is a long time to wait, I know, but you can do it!  :)

    Is it after the adjuvent chemo, or after the radiation?

    Is your CT/PET proposed after the adjuvent chemo, or after radiation? I still have 3 rounds of adjuvent chemo to go after my radiation to treat the NPC, I was curious when the PET scan clock would start (if it's after radiation or after adjuvent chemo).

     

    For those making a decision around timeliness - personally - I would want to avoid any additional imaging that nessesary after reading the link below. I plan to request the doctors advise to delay the PET until there's confidence of GOOD and SOLID interpretation of the data without inflammatory errors. After being exposed to 3 CTs + 1 PET/CT just to get my treatment started, I think it's one too many. Here's a link around medical imaging exposure. FDA probably got involved for a good reason. 

    http://www.webmd.com/cancer/news/20100331/faq-radiation-risk-from-medical-imaging