Doctors seem unconcerned about every lymphoma "red flag"

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Hello! I have been struggling very hard to find answers after having to stop a biological medication last year that lists "lymphoma" as a possibility. First, I was just feeling terribly unwell and went through round after round of antibiotics and steroids for recurrent cough and chest pain, then at the end of November I noticed a few lymph nodes on the left side of my neck and began to get more weak followed by soaking night sweats that I now have to change my clothes and bedding up to three times a night. In December I noticed a lymph nodes above my collarbone on the left side. Since, I have had a couple ultrasounds that showed several lymph nodes that are over 1 cm and a 1.5 cm tissue, or mass via CT scan in my anterior mediastinum. I think that "mass" is what is causing the chest pain. I finally got a referral to hematology and after two months, after billing refused to schedule the PET SCAN my doctor ordered without thousands up front, she dismissed me, telling me : " We don't DIAGNOSE cancer here, we only treat it". Several months of trying to find a doctor that would listen, she ordered a biopsy on the supraclavaclicular lymph node, but at the last moment before surgery, the surgeon (after not seeing a single scan) removed a completely normal node from the side of my neck. No surprise that the results were nothing, but reactive. I waited six more weeks to see my doctor to hopefully schedule the testing of the correct node, but her attitude had completely changed and she told me she was dismissing me from her office, telling me that I am a hypochondriac! I am floored and think my only option left is to go to a mayo clinic and hope they don't just write me off. I personally don't care what this is and know what suffering is as I am a veteran with advancing ankylosing spondylitis and do not care for drama, but I fear that I cannot get much more ill, as now I'm sleeping up to 21 hours a day and can barely get across the room without profuse sweating and breathlessness. I also have petechea from my shoulders to my knees and itching like mad with no rash or reason to be found. Possibly I am crazy, but I really don't think it could cause all of these issues. I've now seen 3 general physicians, my rheumatologist, the surgeon that took out the wrong node and deemed me healthy, and the hematologist/ oncologist that dumped me after I couldn't pay upfront for the scan with Medicare.

They all refuse that a supraclavaclicular lymph node or the small mass in my chest are anything to worry about. My ob ruled out perimenopause (I'm 38) and my psychiatrist agreed that this is not in my head.

I am about to give in, as I am out of options in my city and so SO weak. I was put on high doses of steroids at the ER last week and they are not helping anymore. I cannot bear my family to see me get any worse. I have been getting steadily worse now for 8 months.

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  • Posted

    I am unsure how to edit yet, but that meant to say 1.5 cm supraclavaclicular lymph node and small anterior mediastinal mass that "may or may not be thymic tissue", but it causes pain with every heart beat.

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