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Thread: Help me understand!

  1. #1
    Newbie New User
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    Unhappy Help me understand!

    : Hello this is my first time on anything like this so please bare with me. I was in pain just November 27th of this year. I go to the ER and preform a test CT scan . Doctor said I had acute appendicitis so they take me to surgery remove my appendix the next day. I was told while in the hospital my white blood count is low. I was released on the 2nd of December just days ago. I get a call my Doctor witch calls me yesterday to come in to have my incisions looked at. I get to the doctor they let me come with no appointment on top off that rush me right in. I was put in front of 4 people that have been there waiting! I get in back and he says everything looks like its healing fine. Now here is where I freak out! With no emotion he well I sent your appendix off to be tested and we found a small mass...... I knew then it was not good. The tumor is cancer.... It was in the wall of my appendix but I no longer have an appendix!!!! So he said he removed the cancer tumor why am I being sent to a cancer specialist???? It is all overwhelming already now I am really confused.. Can someone please help I feel totally lost!!!!!!!!!!!!
    Last edited by LostLisa; 12-07-2017 at 07:20 AM.

  2. #2
    Moderator Top User HighlanderCFH's Avatar
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    Nov 2011
    Location
    Highland, Indiana
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    Hi Lisa,

    Sorry to hear about the ordeal you have been through.

    My guess is that the natural thing to do would to still send you to a cancer specialist (oncologist) since the post-op report noted that there WAS cancer. Could be just a standard protocol being followed.

    I'm not sure if the appendix is a common area for cancer to form, so they may want to check to see if it might have originated somewhere else.
    NOTE: I just checked "Dr Google" and apparently it is rare for other cancers to metastasize to the appendix. So hopefully this was a primary cancer -- which may now be completely gone.

    One thing I would insist on is a complete copy of the post-op pathology report. If the cancer did originate in the appendix, and the surgery got it all out along with the appendix, chances are good that you were cured.

    But it's best to let a specialist determine this.

    Please let us know how things are going. You will find tons of support here.

    ANOTHER NOTE: You might want to have the pathology slides sent to another lab for a second opinion.

    Best wishes!
    Chuck
    July 2011 local PSA lab reading 6.41 (from 4.1 in 2009). Mayo Clinic PSA 9/ 2011 = 5.7.
    Local uro DRE revealed significant BPH, no lumps.
    PCa Dx Aug. 2011 age of 61.
    Biopsy DXd adenocarcinoma in 3/20 cores (one 5%, two 20%). T2C.
    Gleason 3+3=6. CT abdomen, bone scan negative.
    DaVinci prostatectomy 11/1/11 at Mayo Clinic (Rochester, MN), nerve sparing, age 62.
    Surgeon was Dr. Matthew Tollefson, who I highly recommend.
    Final pathology shows tumor confined to prostate.
    5 lymph nodes, seminal vesicules, extraprostatic soft tissue all negative.
    1.0 x 0.6 x 0.6 cm mass involving right posterior inferior, right posterior apex & left
    mid posterior prostate. Right posterior apex margin involved by tumor over 0.2 cm length,
    doctor says this is insignificant.
    Prostate 98 grams, tumor 2 grams.
    Catheter out in 7 days. No incontinence, minor dripping for a few weeks.
    Six annual post-op exams 2012 through 2017: PSA <0.1
    Semi-firm erections 5 years post-op whenever the moon turns into blue cheese.
    NOTE: ED caused by BPH, not the surgery.

  3. #3
    Super Moderator Top User po18guy's Avatar
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    Feb 2012
    Location
    Pacific NW, USA
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    8,256
    Call doctor. Ask for more explanation. If the mass was cancerous, and if it has been removed, then that is good news. The referral is good for you because your case is unique - as is each of our cases. doctor was also doing some CYA. On the small chance that the cancer might have spread, would you prefer to stop it now, or wait until it cannot be stopped?
    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 TREC (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.
    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 measureable - 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.
    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.
    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. Active surveillance is the course of choice.
    To date: 18 chemotherapeutic drugs in 9 regimens (4 of them at least twice), 5 salvage regimens, 3 clinical trials, 4 post-transplant immuno-suppressant drugs, the equivalent of 1,000 years of background radiation from scanning from 45+ CT series scans and about 24 PET scans. Two lymphoid malignancies plus a myeloid malignancy lend a certain symmetry to the journey.

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

 

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