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Thread: need help, mom pancreatic cancer diagoses

  1. #1

    need help, mom pancreatic cancer diagoses

    Dear Friends,

    My mother has been diagnosed with PC (adenocarcinoma) on 7th July 2017 through EUS biopsy, they did it on site (called ROSE). the wired thing is all other organ like liver, kidneys, lungs, spleen,bile duct, gallbladder etc are absolute fine. The cancer from head of pancreas has spread to the lymph nodes only, it has effected alot of lymph nodes in abdomen and one in neck . Doctors have not done any biopsy for lymph nodes though. her oncologist calls it stage 4 and inoperable to due neck lymph node involvement and has given her only 6 months to live. my mum is healthy otherwise but she cant digest anything now and getting weaker day by day. I am very much worried as i think her diagnoses may be wrong. anyone else experienced the same? now we are seeking second opnion

  2. #2
    Moderator Top User ddessert's Avatar
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    I'm sorry to hear of her diagnosis. It's a good thing that all the other organs are clear and that it's only in the lymph nodes.

    From your description, if the neck lymph node (or any outside the abdomen area) are not cancerous, she might be classified as stage IIb instead of IV. Stage IV is when the cancer has spread to any distant sites (does not include lymph nodes near the pancreas).

    https://www.cancer.org/cancer/pancre...g/staging.html

    Without a biopsy of the neck lymph node, they would be assuming that the cancer has spread to the neck. They could be right, but those lymph nodes can be enlarged for a great many reasons, such as a virus. That's one reason doctors feel those lymph nodes during every office visit. They're not feeling them to see if you have cancer.

    I think it's very important to know whether she is stage IIb or IV and not get lazy and just assume that it's stage IV. The prognosis and treatment are quite different between the two stages.

    Having said that, her doctors have much more information about your mother than I do and there may be other things going on.

    I'd at least ask why they think she's stage 4 (did they assume the neck lymph node is cancerous or was it something else)? If they've assumed it's cancerous without checking, why?

    If you don't get a satisfactory answer, you should get a 2nd opinion. If this is not a major cancer center, you should still get a 2nd opinion. Treating pancreatic cancer really requires some expertise and many smaller places have doctors that just assume that everyone who gets it is going to die, which does not have to be the case.

    One of the most hopeful active treatment paths would to be to try chemo and try to eliminate it from as many lymph nodes as possible and shrink the tumor to allow surgery. Not everyone opts for treatment, though.
    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-Nov 2017 - NED
    Mar 2013-present - NCT01088789
    @pancanology

  3. #3
    thank you for replying ddessert, i agree with you. Yes they assumed without biopsy that neck lymph node( only visible in scan) is cancerous, she got diagosed in the Maimonides medical center brooklyn, now i am taking her to Dr. Chabot in the pancreas center Columbia, i hope its early for her, i dont know what they will do next but Dr Chabot asked for lymph nodes biopsy when i was booking appt

  4. #4
    Moderator Top User BobInBonita's Avatar
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    madhamshah,

    Welcome to the forum.

    Dave is spot on in his recommendation, and I'm so glad you were already moving down that path with Dr Chabot.

    You mention her scan but don't say what kind of scan. Was it a CT, MRI, or PET/CT? None of them can tell for sure if the cancer has spread to the node, but the PET gives some indication of the metabolic activity in the node. Usually the abdominal nodes are removed and biopsied during surgery.

    I was having digestive troubles when I was diagnosed (I was also given 5-7 months to live - 5 years ago). I started using Creon to supplement my pancreatic enzymes right away. Being able to digest foods helped give me the strength to tolerate chemo and then surgery. If her pancreatic duct shows signs of blockage, they may be able to place a stent in the duct to keep it open and functioning.

    Please update us on her progress as information comes in. Our group here has quite a bit of experience, both as patients and as caregivers. Feel free to ask questions and we'll answer to the best of our ability (we aren't Drs.).

    Best wishes to you both,

    Bob
    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
    thanks Bob, you are inspiration. it was CT scan they did for my mom. So far my mums bile duct is fine as per the reports, they didnt take any biopsy from lymph nodes. I will post updates after todays meeting with Dr Chabot, keeping finger crossed.

  6. #6
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    Hi,

    I hope that you didnt do the mistake like I was, When the surgery doctor ordered us to do the PET/CT, And the result was not good, its has 2 lession detected which is lung and pancreas, the doctor said, its stage 4, and its probably 3months to 6 months to live without treatment, or more if with the treatment, I was like stunned, I couldnt do anything, my father treatment has been delayed for 2 month since the diagnosis.

    Then I go for 2nd opinion, I met a wonderful doctor, she asked me if my father smoking? Because its look like the lung one is a different cancer, we need to do biopsy, and I agree with her, and yes, it was the difference cancer, I direct contact surgeon and ask him to review back if my father is a whipple candidate, he saw the small lession in the liver, but he said he still want to try it, the worst part is he will do triple bypass if the small lesions is cancerous, you know delaying 2 month was very big mistake, I wondering if my father had his treatment straight away after the diagnosis, he might be a whipple candidate, so now he officially stage 4, and I blame myself for this.

    But here, in this forum, I learned alot, Thanks to David and Bob.

  7. #7
    thanks czwing for reply, in todays meeting with Dr Kluger( from dr Chabots team), he was totally surprised on diagoses. He told us that pancratic mass is ususally not big than 6cm and my mums is quite big, then he said images, blood test and diagonses are not making sense, he immidiatly took neck lymph node biospy and order slides from primary hospital and my mums case will now be discussed in board meeting

  8. #8
    Moderator Top User ddessert's Avatar
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    You may take some comfort that the largest tumors found during diagnosis can be the least aggressive and predict longer survival times (in general). I've seen papers that indicate that 4cm at diagnosis is the worst size at prognosis. Their speculation was that larger tumors that went undetected for so long must be less aggressive.

    My point is to not get too upset about a larger tumor being found. Sometimes what looks like bad news can be better.

    My previous comment about not all patients going for treatment was a subtle way of saying that caregivers should not assume that the patients all want to fight to the end, no matter what. I think Bob and I are getting even more adamant that the patient's wishes for treatment, or no treatment, should not be assumed and should be respected.

    This is not to say that you have done so, but I was wondering if your mother and oncologist had already decided on no treatment and the oncologists reasons were just to put the rest of the family off. The background of whether you're at the appointment or hearing about it later, or other things going on sometimes gives me pause on giving some advice.

    Bottom line is that we're pretty strongly on the side of asking and listening to the patient's wishes on how/if they want to treat their own body. Again, not saying you haven't done this, but her wishes have never been brought up in this thread yet either.
    Last edited by ddessert; 07-18-2017 at 06:47 AM.
    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-Nov 2017 - NED
    Mar 2013-present - NCT01088789
    @pancanology

  9. #9
    thanks again Dave, my mum is a fighter, all she knows is that she has a cancer and she wants to win this battle, she is willing for all treatment options avaiable. the primary oncologist suggested to start chemo from this week. But the surgeon now has asked not to proceed with chemo untill they have further tests results with them.my mum is in high spirits and i wish she stays like this. do you have some idea about pancratic lymphoma or collision tumors? i am thinking about everything now , thanks for your support guys

  10. #10
    Sorry, David, I didn't quite follow the meaning of this sentence. Four cm is the worst case, or under 4 cm id not ad favourable as 4cm plus?

    I've seen papers that indicate that 4cm at diagnosis is the worst size at prognosis.
    February 2016- diagnosed with PC
    March 2016- inoperable due to arteries, also liver mets suspected
    March 2016-January 2017 -Gemzar/Abraxane
    February 2017 surgery-PC tumour and liver mets removed at same time

 

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