• Another example of why we need to be our own #1 advocate

    Asked by GregP_WN on Thursday, December 5, 2019

    Another example of why we need to be our own #1 advocate

    My recent diagnosis may not have happened if I had not of kept being persistent about a strange issue I have had in my throat for about a year. It's a strange little thing, it started out as a feeling like something was tickling me inside my throat. I would gag, cough, sneeze and it's done. I was scoped with nothing being found. Then some pain started being associated with it, I asked for another scan, nothing found. Months later after the issue was starting to become more painful I asked for another scope. Each time nothing was found. Until my last scan where a small tiny one inch by 1/4 inch strip of what looked like mucus in my throat could be seen. This little strip turned out to be what the other issue led us to find. If I would have just let it go and not worried about it I wouldn't have found anything until maybe it was too late. At this point, it's still very early in this diagnosis and we are fortunate enough to have found it. When you know there is an issue, don't let it drop

    7 Answers from the Community

    7 answers
    • Teachertina's Avatar

      I would have died years ago had I not insisted on a ct scan that found a softball sized tumor in my left kidney! Had surgery a week later to remove the kidney with a very long and painful recovery. I tell everyone to listen to your body and your gut feeling. You may be known somehow that something just isn’t right. You heard that message from your gut, so glad you did and persisted to get it checked!!!

      4 months ago
    • meyati's Avatar

      Greg, you encourage me about this journey. I'm glad that you nipped it in the bud. I hope that you are around for a very long time.

      4 months ago
    • po18guy's Avatar

      I expected cancer, due to extensive family history and mortality. When I located a tumor behind my left ear, I just knew that it had arrived. My actual thought was, "Hmmm, so this is it." Could not convince my incompetent PCP and I ended up having to diagnose myself and ask for tests. Second blood test at my request revealed that I had mono for the second time. Doctor thought nothing while "I" knew that my immune system had failed. I was prescribed anxiety meds. Never went back.

      The independent surgeon who did my first biopsy gave me the advice that saved my life: "If you ever hear the word 'wait' from a doctor, run for your life." First oncologist, well experienced, did bone marrow biopsy. Pathology report found abnormal T and B lymphocytes, but did not conclude that it was cancer. He wanted to "wait."

      We ran for my life. Went to SCCA/Fred Hutch about 40 miles away. First consult there, even without a diagnosis, was with an incredibly sharp research hematologist. He ordered more sophisticated testing and found that I had a rare and aggressive T-Cell Lymphoma (PTCL-NOS). Too many tumors for the pathologist to count. He stopped counting at 50. The report states simply, "innumerable."

      I have also been the recipient of innumerable miracles, in that the same Fred Hutch hematologist had, just the year before, decided to research T-Cell Lymphomas. It was a perfect match. Too late to make a long story short, but a whole buncha' procedures, biopsies, PET/CT scans, 18 drugs and clinical trials, as well as a stem cell transplant later, I am still here.

      Last July, at a lymphoma seminar, doctor and I toasted 11 years together on a 1-1.5 year survival prognostic.

      I am delighted to be anywhere.

      4 months ago
    • JaneA's Avatar

      You are so right that we must advocate for ourselves. Sometimes, we just know that it's not right. My PCP told me that my rectal bleeding was "probably" hemorrhoids. I said that "probably" was not good enough and asked to be referred for a colonoscopy. My diagnosis after biopsy and staging scans - Stage IV rectal cancer.

      All of us at WhatNext are praying for you and your new diagnosis.

      4 months ago
    • Julesmom's Avatar

      My whole cancer journey started with a mammogram that they radiologist said it's "probably" nothing. Like you, my nothing turned into something.

      4 months ago
    • cllinda's Avatar

      Not only do we have to be advocates for ourselves, but also our spouses. Sometimes, they tell you something and won't tell the doctor. So it's our job to see that things are looked at when your spouse says he doesn't want to bother the doctor. He had been in a bike race and had fallen. After two days of moaning, I made him see the doctor. He had two cracked ribs. He just needed me to push him to see his doctor.

      4 months ago
    • Carool's Avatar

      Greg, I credit my alert gynecologist to my still being here after my radiologist told me the breast lump was nothing.

      I keep hoping that there’ll be way to treat you without your having a total laryngectomy.

      4 months ago

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