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Thread: Need Info: Poorly Differentiated Adenocarcinoma of paraaortic lymph unknown primary

  1. #1

    Need Info: Poorly Differentiated Adenocarcinoma of paraaortic lymph unknown primary

    I didn't know where to post this, so I'm hoping people can steer me in the right direction.

    • Mother has Hepatitis C and was going to begin treatment in November
    • CT scan of liver on 10/10 found the paraaortic lymph node enlarged (7mm)
    • Pancreas seemed clear on CT scan
    • Biopsy on 10/15
    • Poorly Differentiated adenocarcinoma metastisized to the one lymph
    • Thoracic CT clear, EGDclear, Pelvic CT clear
    • One small polyp in rectum on colonoscopy (biopsy 1 week time)
    • PET scan today, Mammogram results on Tuesday
    • Meeting with Oncologist on Tuesday
    • Initial lymph node biopsy stains should be completed by Tuesday


    We're running out of glands to check, if everything comes back clear and it's just the one lymph node...What do we do? I moved my mother down to me in Austin Texas expecting her to go to MD Anderson once we found the primary and have been forwarding records to them. We have a primary oncologist in Austin

    Are there any questions I should raise to the oncologist (Austin) on Tuesday? Is there any information I should know before going to the oncologist?

    Not knowing the primary is very difficult.
    1 Family member is in remission, another is beginning a new sad venture.

  2. #2
    Moderator Top User esk2poo's Avatar
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    Metroins,
    I deleted your other thread in the worried forum as you already have been told it is Cancer. Sorry to hear of your moms condition. I hope they can get to the bottom of it and find out where it originated from as there are different chemo's for different cancers. No sense giving her one that will not kill the Cancer and only make her sick. You want that targeted therapy. I have no input or advice other than I would drop everything and get into MD Anderson right away to let them take over the case. Its between them and Sloan but they are the best Cancer centers in the world. There should be more along shortly with other words but I really do hope you can get this straightened out.
    Good luck,
    Allen
    Stage 3B Colon cancer 8/23/2011
    Resection 9/15/11
    Folfox starts 10/31/11
    Dehydration,blood clots, numerous hospitalization due to complications
    Gall bladder/ hernia repair, 4/2013
    Melanoma sole of right foot 2010
    Clean scans so far.
    12/14/14 that little puppy in my avatar went to heaven

  3. #3
    Thanks for deleting it, I couldn't figure out how.

    Yea, it's nice that I work in Houston every week/other week, so she has a place to stay. Hopefully somebody else can chime in with some input or experiences. It really sucks not knowing where the primary is.

    Good job on your cancer.
    1 Family member is in remission, another is beginning a new sad venture.

  4. #4
    Newbie Top User BobInBonita's Avatar
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    Sorry you're here. Hoping that the biopsy specimen that your expecting results on Tuesday give you more information.

    I agree with Allen that MD Anderson would be a great place for treatment or second opinion. Get on the books as soon as you can - sometimes new patient referrals are the hardest to get. Once you're in its smoother. I'm not sure about Anderson, but at Moffitt they had a GI tumor clinic that saw all things GI. Since you don't know the primary that might be the "most likely" place to start.

    The biggest questions I'd have for the local onc would be:
    -- were the scans done as "thin slices"? My initial scans were standard CT's that didn't show the tumor well, but when thinner slices were taken it gave better resolution.
    -- There is a "pancreas protocol" CT where, in addition to thin slices, the dye is injected a little differently. Again, it can give a little better view of deep tissues.
    -- was the PET a combination PET/CT? The PET has less resolution than a CT. With the combination PET/CT they can use the CT image to get a better view of any barely glowing areas.
    -- what cell type do they see on the slides? As I understand it, there are mucinous tumor types that don't really form larger tumors easily visible on scans, but visually look like grains of sand in the peritoneum. It might take a laparoscopic exam to find these. You could ask about that.

    Wish I had more ideas for you, but...

    Best of luck. Please let us know what happens.
    7/12 DX stage 3 pan can (adenocarcinoma) @ 65 - borderline resectable
    8/12 - 10/12 Chemo (GTX) & Stereotactic Radiation
    12/12 Whipple - R0 margins, 2/29 nodes pos.
    1/13 - 5/16 Vaccine clinical trial - randomized to control group - vaccine showed no benefit
    2/13 - 8/13 Gemzar for 6 months
    Quarterly scans - no evidence of disease to 10/14 - spot on lung being watched - possible infection 2 months on antibiotics
    3/15 - spot larger - probable met - surgery planned
    4/15 - PET prior to surg - recurrence & lung mets - Surgery cancelled - EUS w/ FNA showed adenocarcinoma - Stage 4
    5/15 - 9/15 Folfirinox @ reduced dosage - Stopped treatment after 11 infusions due to neuropathy
    10/15 - 8/16 maintenance 5-fu every other week
    8/16 - stable disease on both CT and PET/CT - chemo holiday while other treatments explored
    9/16 - lung biopsy confirms pan can met,
    10/16 -NanoKnife to pancreatic bed -PET after Nano showed new met in hilar lymph nodes - SBRT to both lung & lymph
    4/17 - PET/CT showed significant disease progression, multiple lung mets, pancreatic bed tumor has grown
    5/17 - Started hospice care - striving for acceptance

    Stay busy and live life to the best of your ability.

  5. #5
    Quote Originally Posted by BobInBonita View Post
    Sorry you're here. Hoping that the biopsy specimen that your expecting results on Tuesday give you more information.

    I agree with Allen that MD Anderson would be a great place for treatment or second opinion. Get on the books as soon as you can - sometimes new patient referrals are the hardest to get. Once you're in its smoother. I'm not sure about Anderson, but at Moffitt they had a GI tumor clinic that saw all things GI. Since you don't know the primary that might be the "most likely" place to start.

    The biggest questions I'd have for the local onc would be:
    -- were the scans done as "thin slices"? My initial scans were standard CT's that didn't show the tumor well, but when thinner slices were taken it gave better resolution.
    -- There is a "pancreas protocol" CT where, in addition to thin slices, the dye is injected a little differently. Again, it can give a little better view of deep tissues.
    -- was the PET a combination PET/CT? The PET has less resolution than a CT. With the combination PET/CT they can use the CT image to get a better view of any barely glowing areas.
    -- what cell type do they see on the slides? As I understand it, there are mucinous tumor types that don't really form larger tumors easily visible on scans, but visually look like grains of sand in the peritoneum. It might take a laparoscopic exam to find these. You could ask about that.

    Wish I had more ideas for you, but...

    Best of luck. Please let us know what happens.
    Thank you so much, now I have some information I can google and bring up with the onc on Tuesday; I think I've exhausted and read all of the google searches for adenocarcinoma lol.

    Anderson wanted the tests done before they admit her, right after Tuesday I'm going to call them up and give them the information to schedule the appointment. Our Austin onc is onboard and said he can even set up the appointments with them.

    Good job on your cancer, I am sorry you're here as well.
    1 Family member is in remission, another is beginning a new sad venture.

  6. #6
    I'm starting to read her biopsy results.

    CKAE1/AE3, CK7, WT-1 positive

    CK20 CK5/6 GATA-3 CA19-9 TTF-1 negative

    Does anybody know much about how to read these? Apparently WT-1 usually means ovarian cancer, but her pelvic CT scan showed nothing and WT-1 is usually a bad sign because it means serious carcinoma. CK 7/WT-1 could also be Renal, but the CT scan says the kidneys are unremarkable. The PET scan results and meeting with oncologist comes tomorrow, as well as the advanced stains of the biopsy.

    Do these indicators give me any more information to talk to the doctor about?
    1 Family member is in remission, another is beginning a new sad venture.

  7. #7
    Super Moderator Top User ddessert's Avatar
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    I believe that they look at the ctyokeratins (CK5, CK6, CK7, CK20) under the microscope in an attempt to identify the organ of the primary cancer.
    The CA19-9 is a blood marker test for pancreatic cancer (not extremely reliable, but used as an indicator).
    Not sure about the others. But I suspect they're all related to finding the organ of the primary cancer.
    Certainly something to ask about, if you're curious. Like, "do these results rule out some organs as the primary site?"

    David
    BRCA2 3398del5
    Dec 2010 - back/abd pain
    May 2011 - Unresectable stage III, 2.5cm tumor
    Jun-Aug 2011 - Gem/Cis, 9 rounds
    Oct-Nov 2011 - Radiation+Xeloda, 25 days in 5 weeks
    Oct 2011-Sep 2012 - shrinking tumor
    Feb 2012 - National Familial Pancreatic Study
    Aug 2012 - Downgraded to stage IIA, PGP
    Sep 2012 - Whipple, T3N0M0, 0.5cm tumor, 0/16 lymph nodes
    Dec 2012 - Quebec PanCan Study
    Sep 2012-May 2018 - NED
    Mar 2013-present - NCT01088789
    @pancanology

  8. #8
    Quote Originally Posted by ddessert View Post
    I believe that they look at the ctyokeratins (CK5, CK6, CK7, CK20) under the microscope in an attempt to identify the organ of the primary cancer.
    The CA19-9 is a blood marker test for pancreatic cancer (not extremely reliable, but used as an indicator).
    Not sure about the others. But I suspect they're all related to finding the organ of the primary cancer.
    Certainly something to ask about, if you're curious. Like, "do these results rule out some organs as the primary site?"

    David
    Thanks for your reply.

    We find out the results of the PET scan and Mammogram in 3 hours. I'm afraid.
    1 Family member is in remission, another is beginning a new sad venture.

 

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