ok all you smarty pants!

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ahollie
ahollie Member Posts: 84
in Head and Neck Cancer #1

ok we got results from the scan...here they are

 

There is a mild Asymmetric uptake and tissue thickening in the left hypopharynx extending into the left tonsillar bed. Uptake values of up to 5.3 are seen in this area (previous 11.6) the uptake is not focal and is likely related to prior surgery and radiation. No new focal areas of abnormailty are identified. Lymph nodes in the left neck have inproved in appearance. A single 1.2 cm left jugulodigastric lymph node remains present with an uptake of 2.3 ( previously 2.5 with an uptake of 17) no new adenopathy is seen!

 

is this good? they want him to have more chemo....we are going to see ent tomorrow for a possible biopsy?

Comments

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #2
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    what do they want to biopsy?

    These are all very low SUV's.   This militates for reactive change, or inflammation rather than cancer.  what do they think would be accomplished with more chemo?  Inquiring minds want to know.

     

     

     

    Pat

  • ahollie
    ahollie Member Posts: 84
    #3
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    longtermsurvivor said:

    what do they want to biopsy?

    These are all very low SUV's.   This militates for reactive change, or inflammation rather than cancer.  what do they think would be accomplished with more chemo?  Inquiring minds want to know.

     

     

     

    Pat

    thats what i want to know..lol

    thats why i  am asking all you smart knowledgebable people....my husband doens't want anymore treatments!

  • ahollie
    ahollie Member Posts: 84
    #4
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    ahollie said:

    thats what i want to know..lol

    thats why i  am asking all you smart knowledgebable people....my husband doens't want anymore treatments!

    6 week scan too

    oh and did i mention..its only a 6 week scan!

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

    6 week scan too

    oh and did i mention..its only a 6 week scan!

    Neck Disection?

    I know he dosen't want anymore treatment but perhaps  a neck disection is in his future.  The single lymph node over a centimeter seems kind of large. Is that where the more chemo is targeted?

  • PJ47
    PJ47 Member Posts: 376
    #6
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    I had a nebulous kind of report like this

    Which was worrisome so I sent the written report and disk to my surgeon and the tumor board and to another R/O and the consensus was it was inflamation due to the surgery and radiation.  Long term survivor reassured me also.  When in doubt, have more eyes review the scans and then if they believe a biposy is necessary it would be prudent at that point.  When you say uptake are you referring to the SVU?  It does sound low to me too but I am not a Doc. Best of luck to you both,

    PJ

  • PJ47
    PJ47 Member Posts: 376
    #7
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    ahollie said:

    6 week scan too

    oh and did i mention..its only a 6 week scan!

    OMG 6 weeks!

    My scan was at 4 1/2 months and the surgeon wanted it done even later at 6 mos.  His nurse told me it sometimes takes a year for the inflamation to subside.

    PJ

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #8
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    ahollie said:

    thats what i want to know..lol

    thats why i  am asking all you smart knowledgebable people....my husband doens't want anymore treatments!

    I may have been too indirect in my answer

    I intended to convey the message that these questions have to be directly put to the people who are proposing the treatment, and answered to your absolute satisfaction.  I would personally not be happy with the proposal as it now stands.  As is said below, if answers are not perrfectly explanatory, this is one of those things I wouldn't just say "OK' to and let them start taking out structures or even biopsying structures that aren't perfectly warranted.  A second opinion, in your husband's case, is looking like a pretty valid thing to do.

     

    Pat

  • ahollie
    ahollie Member Posts: 84
    #9
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    longtermsurvivor said:

    I may have been too indirect in my answer

    I intended to convey the message that these questions have to be directly put to the people who are proposing the treatment, and answered to your absolute satisfaction.  I would personally not be happy with the proposal as it now stands.  As is said below, if answers are not perrfectly explanatory, this is one of those things I wouldn't just say "OK' to and let them start taking out structures or even biopsying structures that aren't perfectly warranted.  A second opinion, in your husband's case, is looking like a pretty valid thing to do.

     

    Pat

    thanks!

    we are going to see the ent today and then set up to get a second opinion on monday with another oncologist....the radiaologist told us yesterday she felt like it was good report also...but she would also recommend more chemo..just hard unless something for sure is lighting up and it doesnt seem so..they assure us the node is dead tissue and have saud that since he was receiving rads...so not sure whats going on...and i am not knowledgeable with all of this...dont want him to recieve more chemo if he doesnt really need itas he has had so much already!

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #10
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    i get more striaght/clear

    i get more striaght/clear answers before doing anything.  good luck.

    dj

  • ErthWlkr
    ErthWlkr Member Posts: 60
    #11
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    Early scans

    6-1/2 weeks out is early based upon my own scans and others I have read about. I didn't have my first scan until 3 months - and it also lit up but consensus of opinion was that it was due to treatment.

    Not knowing the case history, we can't really make a call. But as I've heard, it's not cancer until they say it's cancer. A scan can be misleading. At the very least, if it was me, I'd request a biopsy before additional chemo. Those second and third opinions you're getting should also be weighed.

    Noted also is that the uptake is receding...

    - jeff

  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    #12
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    not one

    i am not a smarty pants

    my thoughts go like this.... most people get 35-38 radiation treatments along with chemo every week.

    if i read it correctly he has had 30 radiation treatments. 

    those radiation treatments continue to be active somewhere between 6-9 weeks after last treatment. 

    so a thought as simple as it is to me why not do some more chemo while the radiation continues to be active.

    just a thought. as that is less radiation that if more is given really hit harder than hard at 30-35. 

    radiation causes in my mind far more long term side effects than chemo. chemo is not fun and slow to recover from, but also works and kills the ugly ness of cancer. 

    sure hope they can give you more clearer thoughts and reasons. 

    john 

  • ahollie
    ahollie Member Posts: 84
    #13
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    fisrpotpe said:

    not one

    i am not a smarty pants

    my thoughts go like this.... most people get 35-38 radiation treatments along with chemo every week.

    if i read it correctly he has had 30 radiation treatments. 

    those radiation treatments continue to be active somewhere between 6-9 weeks after last treatment. 

    so a thought as simple as it is to me why not do some more chemo while the radiation continues to be active.

    just a thought. as that is less radiation that if more is given really hit harder than hard at 30-35. 

    radiation causes in my mind far more long term side effects than chemo. chemo is not fun and slow to recover from, but also works and kills the ugly ness of cancer. 

    sure hope they can give you more clearer thoughts and reasons. 

    john 

    John

    Hi John...thanks for responding..he actually had 2 full weeks of chemo...5 days 24 hours a day of the 5fu cisplastin and taxol...then he had 35 rounds of rads and once a week chemo durning that also...just at a loss as what to do...all three drs have different opinions as where to go from here...some say do nothing and wait for next scan and oncologist says erbutix and chemo until next scan...and ent says get a second opinion...so...we are unsure...

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #14
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    ahollie said:

    John

    Hi John...thanks for responding..he actually had 2 full weeks of chemo...5 days 24 hours a day of the 5fu cisplastin and taxol...then he had 35 rounds of rads and once a week chemo durning that also...just at a loss as what to do...all three drs have different opinions as where to go from here...some say do nothing and wait for next scan and oncologist says erbutix and chemo until next scan...and ent says get a second opinion...so...we are unsure...

    My Thoughts...

    Get a second opinion....

    John

  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    #15
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    ahollie said:

    John

    Hi John...thanks for responding..he actually had 2 full weeks of chemo...5 days 24 hours a day of the 5fu cisplastin and taxol...then he had 35 rounds of rads and once a week chemo durning that also...just at a loss as what to do...all three drs have different opinions as where to go from here...some say do nothing and wait for next scan and oncologist says erbutix and chemo until next scan...and ent says get a second opinion...so...we are unsure...

    I am with

    I am with John

    get a second opinion

    did not know they still did the chemo he had. I had 5 days 24 hours per day of 5 fu and cisplatin only every third week while have 38 rad treatments. i have not heard of someone doing the same in my last 18 plus years since treatment. 

    also i also liked to go with the doc that i felt most comfortable along with confidence from him. 

    prayers for the two of you

    john 

     

     

  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #16
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    fisrpotpe said:

    I am with

    I am with John

    get a second opinion

    did not know they still did the chemo he had. I had 5 days 24 hours per day of 5 fu and cisplatin only every third week while have 38 rad treatments. i have not heard of someone doing the same in my last 18 plus years since treatment. 

    also i also liked to go with the doc that i felt most comfortable along with confidence from him. 

    prayers for the two of you

    john 

     

     

    hypopharyngeal cancer

    My husband is a four year survivor of hypopharyngeal cancer and while all cancers are tough, this type is considered particularly aggressive and lethal and I suspect the doctors are trying to get out in front of anything.

    However, 6 weeks out seems very early.  

    Ask the doctors what they want to biopsy: if the thickening is the issue you might consider it but ask them why.  Make them explain what they hope to accomplish with the new biopsy.

    Let us hear from you.

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