Need advise on scan

Moki
Moki Member Posts: 53
in Head and Neck Cancer #1

Hello

today I went to see my ENT for my first check up and he was very pleased with my progress Smile. He said my nerve regeneration is fantastic and normally he is not a guy that gives compliment so I was very happy.

When I asked about what to expect as follow ups he told me he will be seeing me every 3 months. He did not mention any scan so I asked; his response is that CT and MRI are very difficult to read so he does not think it will be beneficial. He said that in situation like mine (MEC, low grade, biopsy at removal have shown negative margin) a clinical evaluation is sufficient: basically  checking for lumps or regression in my face recovery. Than he said that if I want to do a scan, to do a PET scan in 3 months as a baseline that "we will leave in our pocket in case we will need it in the future".

So, here is my question: is it necessary? Originally he did not mention it and said a clinical evaluation is sufficient so I am not sure if it makes sense to do it. Does anybody had a low grade MEC which was totally removed? If so, did you do a baseline PET scan or just a clinical evaluation every 3 months?

Thank you

Comments

  • thennies61
    thennies61 Member Posts: 285
    #2
    I have to see my radidation

    I have to see my radidation and drug doctors ever 3 months also for check ups.The next time in Feb they will be checking my tyoid glad and they check my throat.My surgen I see every two months and he checks just about everything and lets me know how things are healing.

  • Moki
    Moki Member Posts: 53
    #3
    thennies61 said:

    I have to see my radidation

    I have to see my radidation and drug doctors ever 3 months also for check ups.The next time in Feb they will be checking my tyoid glad and they check my throat.My surgen I see every two months and he checks just about everything and lets me know how things are healing.

    Thank you thennies61

    Any PET scan in the horizon?

  • wmc
    wmc Member Posts: 1,804
    #4
    No PET for me.

    I only had surgery and when they took my larynx that got all of the tumor. I did have a PET/CT scan before surgery [Very expensive they billed my insurance $12,922, but they only got around $5,090 for it] Because they got it all and I never had radiation I do not require a PET scan unless they were to feel something on my check ups. Every two months the first year then every six months for the next four, then I'm free.........

    Bill

  • ratface
    ratface Member Posts: 1,337 Member
    #5
    wmc said:

    No PET for me.

    I only had surgery and when they took my larynx that got all of the tumor. I did have a PET/CT scan before surgery [Very expensive they billed my insurance $12,922, but they only got around $5,090 for it] Because they got it all and I never had radiation I do not require a PET scan unless they were to feel something on my check ups. Every two months the first year then every six months for the next four, then I'm free.........

    Bill

    Get the baseline

    The reason for a baseline is to have something to compare results in the future. One test standing alone dosen't give much information. Compare it to another test and now you can measure something in either direction. So establishing a baseline is a great idea. He is right, get the test and file it away.

     

    The second reason to get the test is that insurance companies get progressively more difficult in approving testing as time goes on without any symptoms. Now is the time to strike at them while they have less of an argument to deny the test.

     

    All the best!!

  • jtl
    jtl Member Posts: 456
    #6
    ratface said:

    Get the baseline

    The reason for a baseline is to have something to compare results in the future. One test standing alone dosen't give much information. Compare it to another test and now you can measure something in either direction. So establishing a baseline is a great idea. He is right, get the test and file it away.

     

    The second reason to get the test is that insurance companies get progressively more difficult in approving testing as time goes on without any symptoms. Now is the time to strike at them while they have less of an argument to deny the test.

     

    All the best!!

    CT/PET

    I am 3.5 years post rx and have had 3 CT/PET scans.  Unfortunately Medicare is not likely to approve any more scans.  My ENT suggests that I get at least one more to get me close to the 5 year mark.  He feels confident that he can spot any recurrence at or near the primary site but wants to make sure there is no metastasis to other areas.  Something he has seen before and with early detection the outcomes were generally very good.  My RO and my MO think more scans are unnecessary, except perhaps for an annual chest X-ray.  I will probably just pay for one more at a cost of $1965 ($1555 if I can get them to give the the Medicare reimbursement rate) for peace of mind if nothing else. 

    As far as issues due to RT, I have not had any.  Everything like taste and saliva has returned to normal.  According to my ENT the area of the primary that was radiated the most looks like it was never touched.  I feel very fortunate after seeing what 3 of my friends went through.

  • phrannie51
    phrannie51 Member Posts: 4,716
    #7
    My thoughts are to get the scan....

    having a baseline is a good thing.  I only had one PET after treatment (at 3 months out)....but have had a CT every 6 months....It's funny how things have changed in just the short time I've been here.  3 years ago, everybody was getting PET scans every 6 months....I thought maybe my Dr. wasn't up on the aftercare.  Now we're hearing about more people with just the one PET 3 months after treatment, with no more scans at all on the near horizon.

    Anyway....I'd get it, if it were me....

    p 

  • thennies61
    thennies61 Member Posts: 285
    #8
    Moki said:

    Thank you thennies61

    Any PET scan in the horizon?

    yes had one in Nov and think

    yes had one in Nov and think another in April or May blood will drawn on Feb 5th just to check things out.Something I think we all will have to get use to..

  • donfoo
    donfoo Member Posts: 1,773 Member
    #9
    fewer than before

    As P says, the trend is to go less PET/CT post tx after the first year. My guess is the standard is to have a scan once a year and then scopes every 3-6 months. For monitoring of the local oral and neck regions, I do think a good HNC specialist can do a very effective job with a scope and physical check.

    My internal unresolved debate is detection of distant mets. A PET/CT can detect them while a scope and physical exam will miss them. The debate is what one does with recurrence in a distant mets situation. The bottom line one has to decide themselves is what are my chances of long term survival when the cancer has gone distant and what quality of life am I trading off by treating the recurrence.

    One one hand everyone wants to fight with the belief of beating the recurrence. The fact is recurrence presents a very difficult fork in the path of life, a lot more complex than the first fork we all took with our first diagnosis. Sadly, battling recurrence with distant mets is very hard, no way around it.

    My rationale goes like this - if I have a regular CT/PET that shows recurrence with distant mets then at least I have more time and options to treat the mets. If I don't have CT/PET then I will likely present symtoms later and the distant mets are probably more advanced than if found by scan meaning less options. In the end if I end up at the same place then it just becomes one of QOL vs time. So, that is where I stand on the issue, unable to advance my thinking any further. There is no simple answer.

     

    I will probably just pay for one more at a cost of $1965 ($1555 if I can get them to give the the Medicare reimbursement rate)

    Absolutely, when seeking treatment as a genuine consumer you have to shop around for the best price for the same product/service. We'd assume that the procedure is standard so you are buying the same service, so you want to shop on price. I have always held you can at least get the CMS (Medicare) rate from a facility but I have not personally had to sit and bargain with them like buying a car; pretty rediculous scenario but that's another debate. Good luck.

  • sonyk728
    sonyk728 Member Posts: 124
    #10
    donfoo said:

    fewer than before

    As P says, the trend is to go less PET/CT post tx after the first year. My guess is the standard is to have a scan once a year and then scopes every 3-6 months. For monitoring of the local oral and neck regions, I do think a good HNC specialist can do a very effective job with a scope and physical check.

    My internal unresolved debate is detection of distant mets. A PET/CT can detect them while a scope and physical exam will miss them. The debate is what one does with recurrence in a distant mets situation. The bottom line one has to decide themselves is what are my chances of long term survival when the cancer has gone distant and what quality of life am I trading off by treating the recurrence.

    One one hand everyone wants to fight with the belief of beating the recurrence. The fact is recurrence presents a very difficult fork in the path of life, a lot more complex than the first fork we all took with our first diagnosis. Sadly, battling recurrence with distant mets is very hard, no way around it.

    My rationale goes like this - if I have a regular CT/PET that shows recurrence with distant mets then at least I have more time and options to treat the mets. If I don't have CT/PET then I will likely present symtoms later and the distant mets are probably more advanced than if found by scan meaning less options. In the end if I end up at the same place then it just becomes one of QOL vs time. So, that is where I stand on the issue, unable to advance my thinking any further. There is no simple answer.

     

    I will probably just pay for one more at a cost of $1965 ($1555 if I can get them to give the the Medicare reimbursement rate)

    Absolutely, when seeking treatment as a genuine consumer you have to shop around for the best price for the same product/service. We'd assume that the procedure is standard so you are buying the same service, so you want to shop on price. I have always held you can at least get the CMS (Medicare) rate from a facility but I have not personally had to sit and bargain with them like buying a car; pretty rediculous scenario but that's another debate. Good luck.

    agree with you Don

    My doc told me if the cancer comes back it's going to be in my lungs so we are just doing CATs because that would pick it up - no need for the PET. Recenlty graduated from a 3 month to a 6 month follow up and it came back clean. Next scan in July Cool

  • MGC
    MGC Member Posts: 72 Member
    #11
    sonyk728 said:

    agree with you Don

    My doc told me if the cancer comes back it's going to be in my lungs so we are just doing CATs because that would pick it up - no need for the PET. Recenlty graduated from a 3 month to a 6 month follow up and it came back clean. Next scan in July Cool

    Scans

    I am no doctor but I believe what my treatment team has told me about scans. Basically they will do no follow up scans unless you present symptoms that would suggest them. Initially a scan a few months after tretment i think is pretty normal. After that, no scans as they are very invasive unless of course needed. However, the first 3 years after treatment i was scoped every 2 months to keep a close eye on things. Just about 5 years out now and have had a few MRI`s over the years because I presented causative indicators but NED ;-) (All side eefects) So yes, scans are good and bad. Be wise with their use.

  • Bunnymom
    Bunnymom Member Posts: 212 Member
    #12
    you can shop for the best

    you can shop for the best price on scans in your area at NewChoiceHealth dot com. I found this very helpful. 

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #13
    i had 2 pet's after tx but

    i had 2 pet's after tx but haven't had any in the last 4 yrs.  i have had a ct though and get one every 6 months because i have 3 nodules on my lungs we are watching for growth.  maybe you should just as for a chest xray and ct scan if anything shows up.

    God bless you,

    dj

  • eulerphi
    eulerphi Member Posts: 17
    #14
    Baseline scan

    Hi - I agree with getting a baseline scan as well. While distant mets for low grade MEC is very rare, it is not 0%.

    It is not clear if the patients discussed had clear margins though. 

    http://onlinelibrary.wiley.com/doi/10.1002/(SICI)1097-0142(19970901)80:5<844::AID-CNCR3>3.0.CO;2-L/full

    http://jjco.oxfordjournals.org/content/38/6/414.full

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