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Thread: 34 y/o, just diagnosed with pancan stage 4.

  1. #1
    Newbie New User
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    34 y/o, just diagnosed with pancan stage 4.

    so I've been experiencing lack of appetite and abdominal pain for the past few weeks. I get an ultrasound and a ct scan, and the doctor says I have stage 4 pancreatic cancer which has spread to my liver. Where do I go from here? I'm not even sure if I should share this with my parents until I get a biopsy. How easy is it to misdiagnose something like this?

  2. #2
    Senior User
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    I am sorry to hear this---34yo is certainly young for a pc diagnosis. Im not sure about the stats on misdiagnosis but you definitely want to get that biopsy before you can make any decisions moving forward. It takes time time to digest all of it. I did tell my mom and dad from the start..but you should do whatever you are comfortable with. You came to a great place for support. Try not to let your mind take you down the darker roads. Warm wishes and thoughts!
    Last edited by susanmac; 10-19-2018 at 11:55 PM.
    +++++++++++++++++++++++++++++
    53 yrs old
    3/8/18 went to ER w/what i thought to be gall bladder issues...CT and MRI found 1.5 cm spot on body/neck of pancreas
    Followed up with EUS No mets/contained
    3/18 started 4 cycles of Gem/Abrax
    5/18 CT scan showed tumor shrinkage .97cm
    7/18 Pre surgery CT scan shows slight tumor growth (1.2cm) could be necrosis.
    8/3/18 distal pancreatomy/splenectomy-open procedure. No mets, 1 lymph node involvement.(distant) Staged 2B
    9/18 CA19 33 NORMAL
    10/10/18 Starting 3 mos Folfirinox adjuvant therapy.
    5/19 CT scan shows enlarged lymph node at surgical site. EUS biopsy determines cancer. Local and contained.
    6/19 Begin radiation. View Ray MRI 5 day regimen.
    8/19 CA19-9 down! no signs of lymph node!!!
    10/2 3 weeks of abdominal/right side pain. CT scan shows small (1mm) soft tissue nodule suspect for Peritoneal Mestastasis. CA 19- way up (1010)

  3. #3
    I'm sorry you have received that news. That was my diagnosis two and a half years ago. Another indicator was my CA 19-9 reading. Did you get this blood test?
    I don' know your situation, but I lean toward telling your parents. It might make you feel a bit lighter, with their support, and you need all the energy and strength you can maintain right now.
    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
    July 2018 Back on Gemzar/Abraxane due to rising CA 19-9. Scans were clear.
    January 2019 Tried FOLFIRINOX after G/A became ineffective. FFX doesn't work. CA 19-9 rising
    February 2019 two small tumors appear on liver
    May 2019 - CA 19-9 skyrocketing. Started IMRT radiation treatment.
    August 2019 MRI done. No Evidence of Disease (NED). CA 19-9 dropped significantly. Still not normal range.

  4. #4
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    Hello,
    It is upsetting and unexpected as well to receive such news, I can feel you. Sorry that you need to be here. However, it is a good place to share details if you feel like to. There is a lot of experienced people here. As far as your diagnosis goes I suggest without wasting time take it one step at the time. I suppose the docs will have your type of pc confirmed with a biopsy as the type of therapy will depend on it. You are very young and you can fight back whatever your diagnosis. Please do not be deterred by other people’s experiences with chemo and other treatments as each one is different. Focus on nutrition since it is important to stay robust to be ahead of cancer. You can do it. I think the worst day is when one hears the diagnosis. As soon as all gets into a perspective it is less stressful. Make sure there is always support for you even if it means that people you love find it hard to cope at first.
    Stay strong

  5. #5
    Regular User
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    Jul 2018
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    When we first heard my husband had Stage IV after the CT without the biopsy, we were in a daze, but did tell some close friends and family. It took a week or so to get the biopsy, and in that time denial began to creep in and I felt certain we had embarrassed ourselves “overreacting”, that it was all a huge mistake. I think in hindsight I might have still gathered the support around us, but let them know that final diagnosis will come with a biopsy.
    Adoring wife and caregiver of Fred (67)
    May-Mid June 2018 - Fred has persistent mild symptoms - abdominal and back discomfort, a little weight loss (3lb), gassy belly.
    June 18th - CT scan - 2.5 cm tumor in head of pancreas, 4 small lesions in liver (largest 1cm), 4 enlarged abdominal lymph nodes (2-3cm)
    June 25th - CT guided biopsy confirms poorly differentiated adenocarcinona of pancreas and CA19-9 of 1583 on July 5
    July 12th - Abraxane/Gemzar - constipation, fever, chills and tired/weak feeling are main complaints.
    Sept 18th - Restaging CT - Marked tumor progression
    Sept 25th - 2nd line chemo begins- FOLFIRI
    Nov 18 CT shows further progression
    Dec 3-17 After 3 small strokes, clinical trials are ruled out and Onc advises no more can be done.
    Dec 18 Fred began hospice 6 months after diagnosis
    Jan 21, 2019 Farewell for now my sweet love.

  6. #6
    Moderator Senior User BrigitteM's Avatar
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    Sep 2016
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    Hi,
    As some here have said, your doctors need to do the biopsy to confirm this is cancer. You don't mention where you have done the CT scans, but I would recommend that you go to high-volume hospital with a multidisplinary team with expertise in pancreatic cancer.

    You can call the helpline of www.pancan.org (877) 573-9971 They are open until 5:00pm pacific time. And here is their page for "newly diagnosed"

    This is an excellent organization and they will help you to find the right hospital near you.

    And we'll do our best here to help you through this. Keep us posted. My warmest thoughts. Brigitte
    __________________________________________________ ___________________
    1/12/2016 No symptoms except ongoing fatigue; blood test revealed elevated liver enzymes
    1/18/2016 Liver ultrasound, then MRI confirmed enlarged bile duct
    1/21/2016 ERCP and placement of a temporary stent
    1/28/2016 CT-Scan showed a lesion on the head of pancreas
    2/09/2016 2nd ERCP + EUS + FNA
    2/12/2016 DX Borderline resectable pancreas ductal adenocarcinoma - Stage 3 @ 61
    2/24/2016 FOLFIRINOX 3 cycles (6 infusions)
    5/12/2016 CYBER-KNIFE Stereotactic Radiation 3 sessions
    6/16/2016 WHIPPLE + portal vein and right hepatic artery reconstructions - 0/19 nodes pos - no mets. Restaged to 1A
    8/31/2016 FOLFOX for 3 cycles (6 infusions)
    Sept 2016 Know Your Tumor - PANCAN.org
    11/4/2016 CT Scan clear - NED
    May 2017 Liver lesion - DX mild fatty liver disease - NED
    Aug 2017 Several small lung nodules - slow growth - NED until August 2018
    Aug 2018 Pancreatic metastasis confirmed by biopsy.
    Sept 2018 Starting clinical trial with RX-3117 and Abraxane (NCT03189914)
    March 2019 Lung nodules are stable

  7. #7
    Super Moderator Top User po18guy's Avatar
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    Feb 2012
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    10,403
    Our motto is: "You do not have cancer until a pathology report says you have cancer." No one outside of a pathologist can say whether it is a malignancy or not. So, try to reserve judgment until then, as difficult as that can be.
    05/08-07/08 Tumor appears behind left ear. Followed by serial medical incompetence on the parts of PCP, veteran oncologist and pathologist (misdiagnosis via non-diagnosis). Providential guidance to proper care at an NCI designated comprehensive cancer center.
    07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. Stage IV-B, >50 ("innumerable") tumors, bone marrow involvement.
    08/08-12/08 Four cycles CHOEP14 + four cycles GND (Cyclofosfamide, Doxorubicin, Vincristine, Etoposide, Prednisone & Gemcitabine, Navelbine, Doxil)
    02/09 2) Relapse.
    03/09-06/13 Clinical trial of Romidepsin > long-term study. NED for 64 twenty-eight day cycles, dose tapered.
    07/13 3) Relapse, 4) Suspected Mutation.
    08/13-02/14 Romidepsin increased, stopped for lack of response. Watch & Wait.
    09/14 Relapse/Progression. Visible cervical nodes appear within 4 days of being checked clear.
    10/06/14 One cycle Belinostat. Discontinued to enter second clinical trial.
    10/25/14 Clinical trial of Alisertib/Failed - Progression.
    01/12/15 Belinostat resumed/Failed - Progression. 02/23/15
    02/24/15 Pralatrexate/Failed - Progression. 04/17/15
    04/15 Genomic profiling reveals mutation into PTCL-NOS + AngioImmunoblastic T-Cell Lymphoma. Stage IV-B a second time. Two dozen tumors + small intestine (Ileum) involvement.
    04/22/15 TEC (Bendamustine, Etoposide, Carboplatin). Full response in two cycles. PET/CT both clear. Third cycle followed.
    06/15-07/15 Transplant preparation (X-rays, spinal taps, BMB, blood test, MUGA scan, lung function, CMV screening, C-Diff testing etc. etc. etc.) Intrathecal Methotrexate during spinal tap.
    BMB reveals 5) 26% blast cells of 20q Deletion Myelodysplastic Syndrome MDS), a bone marrow cancer and precursor to Acute Myeloid Leukemia.
    07/11-12/15 Cyclofosfamide + Fludarabine conditioning regimen.
    07/16/15 Total Body Irradiation.
    07/17/15 Moderate intensity Haploidentical Allogeneic Stem Cell Transplant receiving my son's peripheral blood stem cells.
    07/21-22/15 Triple dose Cyclofosfamide + Mesna, followed by immunosuppressants Tacrolimus and Mycophenolate Mofetil.
    07/23-08/03/15 Marrow producing zero blood cells. Fever. Hospitalized two weeks.
    08/04/15 Engraftment occurs, and blood cells are measurable - released from hospital.
    08/13/15 Day 26 - Marrow is 100% donor cells. Platelets climbing steadily, red cells follow.
    09/21/15 Acute skin Graft versus Host Disease arrives.
    DEXA scan reveals Osteoporosis.
    09/26/-11/03/15 Prednisone to control skin GvHD.
    11/2015 Acute GvHD re-classified to Chronic Graft versus Host Disease.
    05/2016 Tacrolimus stopped. Prednisone from 30-90mg daily tried. Sirolimus begun. Narrow-band UV-B therapy started, but discontinued for lack of response. One treatment of P-UVAreceived, but halted due to medication reaction.
    09/16/16 Three skin punch biopsies.
    11/04/16 GvHD clinical trial of Ofatumumab (Arzerra) + Prednisone + Methylprednisolone begun.
    12/16 Type II Diabetes, Hypertension - both treatment-related.
    05/17 Extracorporeal Photopheresis (ECP) begun in attempt to control chronic Graft-versus-Host-Disease (cGvHD. 8 year old Power Port removed and replaced with Vortex (Smart) Port for ECP.
    05/2017 Chronic anemia (low hematocrit). Chronic kidney disease. Cataracts from radiation and steroids.
    06/17 Trying various antibiotics in a search for tolerable prophylaxis.
    08/17 Bone marrow biopsy reveals the presence of 2% cells with 20q Deletion Myelodysplastic Syndrome, considered to be Minimum Residual Disease.
    12/17 Bone marrow biopsy reveals no abnormalities in the marrow - MDS eradicated. The steroid taper continues.
    01/18 Consented for Kadmon clinical trial.
    03/18 Began 400mg daily of KD025, a rho-Associated Coiled-coil Kinase 2 Inhibitor (ROCK2).
    09/18 Due to refractory GvHD, Extracorporeal Photopheresis halted after 15 months ue to lack of additional benefit.
    10/18 I was withdrawn from the Kadmon KD025 clinical trial due to increasing fatigue/lack of benefit.
    11/18 Began therapy with Ruxolitinib (Jakafi), a JAK 1&2 inhibitor class drug. Started at half-dose due to concerns with drug interactions.

    To date: 1 cancer, relapse, second relapse/mutation into 2 cancers, then 3 cancers simultaneously, 20 chemotherapy/GVHD drugs in 11 regimens (4 of them at least twice), 5 salvage regimens, 4 clinical trials, 5 post-transplant immuno-suppressant/modulatory drugs, the equivalent of 1,000 years of background radiation from 40+ CT series scans and about 24 PET scans.
    Both lymphoid and myeloid malignancies lend a certain symmetry to the hematological journey.

    Believing in the redemptive value of suffering makes all the difference.

  8. #8
    Senior User
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    Mar 2018
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    138
    When the biopsy is being done, be sure to have steps taken to provide tumor tissue for molecular analysis.
    Mar. '18 - Diagnosed Stage IV with liver mets CA-19 124,000
    Apr. '18 - Started chemo - Gem, Abrx, Cis
    July and Sept '18 - Ct scan - all tumors shrinking
    Oct. '18 - CA-19 - 1,495
    Oct. '18 - Started Gem, Abrx 1/2 dose
    - Ca-19 up to over 6,000
    April '19 - Started 5-fu, Abraxane, Oxaliplatin
    Ca-19 down to 600, missing many doses due to
    low platelets
    Aug '19 - Started Irrinotecan, abraxane, cysplatin
    missing doses, low platelets
    Sept '19 - Ca-19 holding steady, ct scan shows 2 small
    lung nodules - 3mm, 5mm, blood clot in pulmonary
    vein, primary and liver mets stable

  9. #9
    Experienced User
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    Dec 2017
    Posts
    88
    I agree. PC at early age is unfortunate, but it also indicates higher likelihood of germline mutation. So hopefully some targeted therapy can respond better.
    Oct 2017 - Mom's annual checkup found elevated CA19-9 (280 kU/L)
    Nov 2017 - Diagnosed. Pancreatic Adenocarcinoma on body/tail of pancreas, ~3cm mass
    Dec 2017 - Distal pancreatectomy, 3.5*3*2 mass removed, 2/17 lymph nodes.
    Jan 2018 - CA19-9 dropped to 30 kU/L 4 weeks after surgery.
    Feb 2018 - 3 rounds of S1
    June 2018 - CA 19-9 from 50 to 170 KU/L. CT + PET confirmed recurrence at remainder of pancreas + peritoneal mets.
    July 2018 - Started Gem/Abraxane
    Sep 2018 - Peritoneal mets disappeared on CT. CA 19-9 dropped to 35.
    Nov 2018 - Finished 4th round of Gem/Abraxane. Clear CT. CA19-9 dropped to 22.

 

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