Can't breathe, just cry

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SuzJ
SuzJ Member Posts: 427 Member

VCU Massey has a patient portal, where appts, and results are posted.

I had a CT scan last friday, and I was waiting for the results to post.

It says that - FINDINGS: The left tongue base enhancing mass has decreased in size and now measures about 8 x 13 mm. Enlarged metastatic nodes in levels 2 and 3 on the left have also decreased in size.

 

So it's not gone, I have no idea what this means? chemo/rad again? Surgery? They SAID it was GONE! Dammit!

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  • Engelsa
    Engelsa Member Posts: 50
    edited July 2017 #2
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    Let's wait to see what the doctor has to say about all of this

    SuzJ

    I am so sorry this test has caused you worry.

    I am by no means a doctor but I would like to share some info we received at the beginning of my husbands treatment.

    We were told that the tumor doesn't always disappear. Sometimes there are residual portions that remain after treatment. They explained it as scar tissue and stated that it can continue to change over time.

    I do not think the tumor presence is proof of treatment success or failure. I believe other tests must be combined to make final determination.

    When will you see your oncologist again for a follow-up appointment? I think you need to speak with them sooner rather than later.

    You have been through so much with this treatment already. I hate to see you worry before we know what the doctors think about these findings.

    I send you a big hug, Suz.

    Sara

  • soonermom
    soonermom Member Posts: 155
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    Don't Panic

    Like Engelsa I have no idea what those results mean, I can only tell you that on my husbands 12 week PET both the primary tumor and his node both could still be measured.  They had decreased in size.  It was the findings about the characteristics of what they could see that led the radiologists to tell us that he has no active cancer at this time.  I know you are beyond stressed about this but I hope you can wait to see what the treatment team has to say.  This is why physicians have mixed feelings about the patient portals.  If the results come to us with no explanation, it sometimes creates unnecessary anxiety and questioning for patients.  I am sorry that you can't get an explanation today. 

  • phrannie51
    phrannie51 Member Posts: 4,716
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    Absolutely don't panic....

    Everything is shrinking...they will monitor you to ensure everything keeps on shrinking....and most likely it will.  We always say that waiting for things to happen is the hardest part of this, and emotionally it truly is.  When you see the Dr. I have a feeling he's going to plug some relief into your racing mind....

    p

  • MMDowns
    MMDowns Member Posts: 318
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    Breathe.  You finished right

    Breathe.  You finished right after my husband so it's still early.  It's never really "gone" and it sounds like the tumors have shrunk and are hopefully still shrinking.  I freaked out too when my husband has his first CT and they told us that the results could be inconclusive or there could be shadows of scar tissue, etc... I'm sending hugs and positive good juju and prayers.  Let us know for sure!

  • armana
    armana Member Posts: 97 Member
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    You should relax

    My 1st Pet Scan post radiation showed the same result and recommended a follow up scan in 3 to 6 months. The following Pet showed all clear.

    Radiaition is a gift that keeps on giving for several months after completion.

    You will be in my prayers

  • SuzJ
    SuzJ Member Posts: 427 Member
    edited July 2017 #7
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    Dr called

    This morning - I am now cheduled for a PET scan in 2 weeks on the 1st, and if it shows active cancer, it will be cut out. If its inactive, it'll be a "wait and see" approach

  • MMDowns
    MMDowns Member Posts: 318
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    SuzJ said:

    Dr called

    This morning - I am now cheduled for a PET scan in 2 weeks on the 1st, and if it shows active cancer, it will be cut out. If its inactive, it'll be a "wait and see" approach

    To me that sounds pretty

    To me that sounds pretty typical.  They told my husband the same thing.  If there's more they will cut it out.  If not, it's another 3 months and another PET scan.  Good vibes being sent your way.  Hugs!!

  • phrannie51
    phrannie51 Member Posts: 4,716
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    SuzJ said:

    Dr called

    This morning - I am now cheduled for a PET scan in 2 weeks on the 1st, and if it shows active cancer, it will be cut out. If its inactive, it'll be a "wait and see" approach

    Ok....When I did the chemo/rads....

    my ENT told me that I might have a neck dissection after treatment depending on how my lymph nodes were doing.  When I finished, the nodes seemed to have become scar tissue, and they didn't do a neck dissection.  3 years down the road a scan showed an enlarged node, and a needle biopsy said cancer....AGAIN!  I had a neck dissection that time, and 25 more rad treatments.  What I have to say about the second round of treatments is this.....it was a snap!  The dissection was an easy recovery...really easy!  It looked SO impressive, too....but Ibrophen worked for any discomfort.  All I'm saying is this....if they get those nodes out now, GOOD!!  You'll miss out on any surprises down the road....I wish I'd had a dissection after treatment and missed out on my surprise.

    p

  • SuzJ
    SuzJ Member Posts: 427 Member
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    Can you give me an idea of

    Can you give me an idea of what to expect?