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Thread: Large mediastinal mass

  1. #1
    Experienced User
    Join Date
    Feb 2007
    Location
    Texas
    Posts
    91

    Large mediastinal mass

    Just wanted to share on how we found out my daughter had hodgkins lymphoma. She was not really sick just a cough. We went to our GP for a month and a half with him thinking she had allergies then bronchitis. Gave her antibiotics, changed her decongestants. Then finally he did a chest x-ray and it showed a large mediastinal mass (above the heart). Just in Oct we went for a cardiac work up due to my son having some problems and his cardiologist suggested we do a work up so we did. On the echo it showed some shadowing and they (the doctors) just blew it off and said she is fine. When my GP found the mass he was going to refer her to a pulmonary specialist but she told me that weekend she was having trouble breathing when she laid on her stomach. She complained some of her left side under her rib cage hurting, but I thought it was because she was sore from all the coughing. Well I took her to the ER and they looked at the x-ray and ran blood work and all the blood work showed was a little anemia. They then did a CT of her chest. They then sent an Oncologist down to talk to us and admitted her. She went through one week of testing, biopsy, CT scan, PET scan, bone scan, Gallium scan, and even bone marrow aspiration. They then diagnosed her with hodgkins. We then spent another week in the hospital putting in her port o cath, and having just base line testing done. The chemo can damage lungs and heart. She just finished her 4 rounds of chemo. She has stage 4a hodgkins. Now we are repeating all those tests except for the bone marrow aspiration. Then we start 14 weeks of radiation. Then again all test have to be re done and this time even the bone marrow aspiration.

    My advice to anyone who suspects hodgkins to research on the internet and take it to your GP and have him do some simple tests, blood work, x-rays, etc.

    I wish all of you the best of luck and if I can help in any way please post and let me know or e-mail me at Boldelly@aol.com. I am no doctor, but just my own experience and it has been a roller coaster ride of nerves, emotions, physically exhausting not just for me but especially my daughter. Stay strong and be persistent.

  2. #2
    Experienced User
    Join Date
    Jan 2007
    Location
    Indiana
    Posts
    69

    symptoms

    Hi, Boldelly:

    I agree with you completely about the merry-go-round of guess work and misses on the part of doctors. I was sick for about 10 months before a doctor finally did one simple chest film or took a drop of blood.

    Misdiagnoses seem more frequent in younger patients. I was 25 when I started feeling tired (slept a lot), lost my appetite, started coughing from a "tickle" in my throat. That was June 1996. In October, I went to a GP (who was fresh from school) and she concluded my cough was lingering bronchial trouble (since my fever was so low). She then prescribed a topical lotion for a blistering rash on the back of my left hand, claiming she thought it was from the surgical gloves I wore daily at my job. Christmas came and went while I slept and continued to cough and lose weight; the rash never got better.

    I was planning to move to a new city the following spring, got a job and an apartment; two weeks before the move I was waking in sweat soaked sheets, coughing pretty much non-stop. In late April, I returned to the same doctor after I nearly passed out during a shopping trip. I was so winded I could not catch my breath.

    Again, the doctor took a cursory glance at my chart. She concluded this time that it sounded like I had asthma. She told me she would schedule tests with the hospital's respiratory therapist (who turned out to be a very cold woman who even said at one point in the test that I "wasn't trying hard enough"). As the doctor headed toward the exam room door to leave, she paused and said with her back to me; "I'll order a chest x-ray just to be sure." I had the tests done the next day since I was scheduled to be off so I could do the necessary bank transfers for my impending move.

    A front desk person told me the day after my tests that my doctor had called and left two messages with the answering service that morning. I could not get a break to call her back until an hour later. "Are you sitting down?" she asked. I knew I was in trouble. She told me the x-ray showed a "mass" in my chest and she had scheduled a battary of tests for the following day, gave me the hospital locations and times, then asked if I had any questions. That was Wednesday.

    Thursday I had the first of many CT scans and Friday I was back in the doctor's office to get the test results and her 'diagnosis". I didn't hear anything after she said the word "cancer".

    I had good health insurance, and inexperience is the only thing I can conceive as the reason why this doctor ignored "textbook" Hodgkin's symptoms and had not ordered more informative tests when I first saw her in October. I have always been a very healthy person; I never got sick, I exercise regularly and eat well. That, perhaps, worked against me in some ways, just like my age.

    I was the youngest person at the oncology clinic where I received 12 doses of chemo, one every other week for six months. I worked full-time, gave myself both procrit and neupogen shots.

    I am here still even tho' I trusted that doctor with an unseen mass in my chest that peaked at 13 1/2 cm and another one of 7 cm in my spleen. Staging tests showed my entire lymphatic system was involved from head to toe; the cancer was everywhere except my bones, spine, and brain. I had nodular sclerosing Hodgkin's; my lymphnodes are permanently scarred, enlarged and I have yet to miss a cold and flu season without illness.

    Flu and cold medicines all say on the label to see a doctor if the cough lasts more that a few days and is accompanied by a fever. I was mislead into thinking that my low-grade fever, rash and cough were due to the cold and flu season.

 
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