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Thread: Do I have Pancreatic cancer? Blood work, ultrasound, MRI are normal

  1. #1
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    Do I have Pancreatic cancer? Blood work, ultrasound, MRI are normal

    I am 45 male, non smoker, non drinker. I started having upper abdominal pain (mild, not burning, not sharp) for 5 weeks now, since early Dec 2017. My PCP ordered blood work which included CA19-9 and everything came back normal. Ultrasound also came back normal. He finally agreed to order an MRI without contrast (which disappointed me because I wanted MRI with contrast so things can be seen better). MRI did not show any thing abnormal.

    He put me on Pepcid because he thought I had acid reflux but that did not help. I know I am not having acid reflux or GERD because my pain is dull. The pain I have is more like pressure, not cramping or burning.

    I decided to see a GI doctor 2 days ago. I asked him for an Endoscopic Ultrasound (EUS) but he said no. He told me I don't have pancreatic cancer. He scheduled me for an normal endoscopy instead where he will look for ulcer, inflamation in my stomach instead. He said insurance won't pay for EUS because I don't have any indication of having pancreatic cancer. I told him that I would pay for the EUS myself. He was surprised to hear that i am willing to pay for the EUS. After a second of pause, he said let's have the normal endoscopy first and then he would do the EUS for me down the line if needed.

    So, the normal endoscopy will be done next Wed. In the mean time, he gave me Protonix. I know I don't have ulcer, acid reflux and more importanly, the Pepcid my PCP prescribed did not work. I am so frustrated that the doctors just would not listen to me. I just don't want to wait until I turn yellow or have other symptoms before they do EUS for me. Why can't they do EUS for me?

    Right now, I have abdominal pain and severe chills. These 2 worried me the most. I also lost 3-4 lbs and don't want to eat (I try to think this is because of the anxiety I have, but they could be also symptoms of the cancer).

    When my anxiety is shooting up, I try to calm myself down thinking that the full body CT scan I had 7 years ago, the blood work I had 3 weeks ago (with normal CA19-9 along with other normal ranges), the ultrasound and the MRI without contrast were all normal. However, like many patients wrote, there scans and tests were normal too but later diagnosed with the cancer.

    I understand none of us in this forum can say for sure if someone has cancer unless a biopsy is done, but I just needed to vent here while nervously wait for the test next Wed.

  2. #2
    I wonder why you are even thinking about pancreatic cancer at all when there is no indication you might have it?
    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.

  3. #3
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    jackieb501,
    thanks for your reply. I am scared of pancreatic cancer because my friend who died of this cancer told me that he had abdominal pain at first. He thought because he was a little overweight and his pants might be too tight. So, he had to unbutton his pants while working. When the pain would not go away, he turned yellow and was diagnosed with cancer.

    I also read that 70% of pancreatic cancer patients all had upper abdominal pain as their first symptoms.

    The thing that scares me is that the pain I am having is not the pain I had when I have stomach flu. Also, my pain is dull and I don't feel it's from my stomach. The location of the pain is where the pancreas is. The Pepcid and the Protonix did not help, so it's not acid reflux. This is why I am scared.

  4. #4
    Do you have any back pain, behind where the pancreas is? That's where my pain was for most of the time, which is why I let it go so long. I assumed it was a knot in the muscle, or pinched nerve (well, it was the latter. I just didn't realise the nerve was being pinched by a tumour). After months of back pain, the pain was in the front as well, beneath my ribs. My sense is that you don't have it. All your various tests are clear.
    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.

  5. #5
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    No, I don't have back pain. I have abdominal pain which feels like my tummy wants to explode (not burning or cramping ). My other symptom is I have severe chill even when I have 4-5 shirts on.

    I try to stay positive because the tests so far are normal, but I read in this forum and on the internet, many patients had their tests normal early on, but later diagnosed with stage 4.

  6. #6
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    Quote Originally Posted by jackieb501 View Post
    After months of back pain, the pain was in the front as well, beneath my ribs. My sense is that you don't have it. All your various tests are clear.
    How did your pain in the front feel like? Was it like cramping, burning, a pulled muscle, pressure?

  7. #7
    Super Moderator Top User po18guy's Avatar
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    Before things get out of hand, our bodies can produce about 150 different symptoms. Those symptoms have to cover over 68,000 different diseases and conditions. By simple math, that is 450+ potential diseases per symptom. Two symptoms? Double that and so on. Do not go by symptoms, as doctor uses reported symptoms only to look for signs - physical evidence - of the disease. According to your diagnostics, no such thing has been found. Most cases are diagnosed at age 65 or later.

    You mention anxiety. The point of all this is to find relief, correct? Since no physical cause has been found, we must consider that power that the mind has over the body. Psychosomatic illnesses are real. Something to consider.
    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
    Super Moderator Top User ddessert's Avatar
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    2,440
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    I think that each person’s pain presents a little differently. However, if the pain is brought on by pressing on the nerves, it probably increases in intensity slowly, but consistently.

    Note that your pain could be brought on by anything activating the nerve receptors, not just a tumor. In fact, it’s almost always not a tumor.
    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

  9. #9
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Posts
    10,175
    Quote Originally Posted by ddessert View Post
    I think that each person’s pain presents a little differently. However, if the pain is brought on by pressing on the nerves, it probably increases in intensity slowly, but consistently.

    Note that your pain could be brought on by anything activating the nerve receptors, not just a tumor. In fact, it’s almost always not a tumor.
    OP, listen to this man! He knows what the heck he is talking about. If anyone should be worried about pancan, it should be me. 65 and type II diabetes. Lots of radiation. Square in the crosshairs.
    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.

  10. #10

 

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