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Long awaited news

Indysilver
Indysilver CSN Member Posts: 8 Member
in Lymphoma (Hodgkin and Non-Hodgkin) #1

My journey started this time last year. A nuisance cough I couldn't get rid of. X-rays, CT's, PET scans with contrast, 2 surgeries, over 30 biopsies and they couldn't figure it out. The cancer surgeon gave me some pills for histoplasmosis and told me to contact the CDC if I didn't feel better. Fast forward to this point. I went to the ER last month over back issues, and they said I have lung cancer, and sent me out of state for another surgery for more biopsies. I woke up from surgery and the surgeon said I had granulomas histoplasmosis but no cancer. I go home and get a call 2 days ago that she had a curve ball for me. They sent the samples off and apparently I have B Cell non hodkins lymphoma on top of the other, which I think made it more difficult for them to figure out. Tomorrow the surgeon is getting a plan together with the radiation encologist and giving me a call. I have NO idea what's in store. Nervous.

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Comments

  • po18guy
    po18guy CSN Member Posts: 1,572 Member
    #2

    Sorry to hear this. sometimes I wish that hospitals should just shut up as, aside from fractured bones, they cannot diagnose anything based solely on imaging. And then they give a "differential diagnosis" which is a collection of several guesses - pure stress for the patient!

    As odd as this may sound, all of this "might" have been the B-Cell Lymphoma all along. Lymphoma can be diabolically hard to correctly diagnose and mistakes are not that rare. I know of a couple of folks who were diagnosed with PTGC (Progressive Transformation of Germinal Centers) which is not a malignancy. However, as time and biopsies went on, it was found that both had Nodular Lymphocyte Predominant B-cell Lymphoma.

    In my case, a veteran hematologist and pathologist completely missed the stage IV T-Cell Lymphoma I had. Later on, after 2-3 relapses, it took a university pathology lab 2-3 weeks to diagnose my relapse - when they knew what they were looking for. And when the report came, it was called a relapse of a sub-type of lymphoma I had never been diagnosed with. Ugh.

    In your case, the sub-type will determine treatment options. There are now over 80 types of lymphoma, and many require a specific course of therapy. As you may note, many of us here have been diagnosed with both indolent and aggressive cancers - some several times. Treatment is doable and survival rates are constantly going up.

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  • mossback99
    mossback99 CSN Member Posts: 67 Member
    #3

    Hello. Hang in there. The period you're in now, in my opinion, is one of the most difficult times in the journey. The uncertainty and the unknowns are very stressful. Try to take care of yourself as best you can and know that once you have more answers and a plan for your treatment you'll be in a better place. For now, just take care of yourself. Best wishes to you and good luck with your treatments.

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  • Indysilver
    Indysilver CSN Member Posts: 8 Member
    #4
    https://csn.cancer.org/discussion/comment/1726708#Comment_1726708

    Wow, and I thought mine was a headache! I'm so sorry.

    While I 100% agree that hospitals should just shutup sometimes, if they hadn't incorrectly told me that, I would probably still be undiagnosed, so there's a silver lining I suppose.

    Thank you so much for that information, I had no idea there were so many subsets of this! It's sent me down a rabbit hole trying to see the differences. I appreciate the kind words, and wish you all the best of luck!

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  • Indysilver
    Indysilver CSN Member Posts: 8 Member
    #5

    Thanks for the kind words. That gives me a glimmer of hope anyhow. It has been a roller coaster ride the past year, and here we are yet again. I'm ready for the next step.

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  • po18guy
    po18guy CSN Member Posts: 1,572 Member
    #6
    https://csn.cancer.org/discussion/comment/1726710#Comment_1726710

    You are very welcome. There is much more to it than that, but suffice it to say that if I complain, it is only about being alive. In 2014-2015, I actually had three simultaneous cancers: two T-Cell Lymphomas and a marrow cancer known as Myelodysplastic Syndrome. Since, I have developed a skin cancer, but that is a mosquito bite by comparison.

    If you possibly can, consider treatment or consultation at an NCIC designated. comprehensive cancer center. They employ the best and brightest, possess cutting edge technology and conduct research via clinical trials (I have been in 4). Find the nearest such center here: https://www.cancer.gov/research/infrastructure/cancer-centers/find

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  • Indysilver
    Indysilver CSN Member Posts: 8 Member
    #7
    https://csn.cancer.org/discussion/comment/1726724#Comment_1726724

    Omg, I'm so sorry! I feel bad for even complaining now, somebody else always has it worse! I hope you're doing "ok", both physically and mentally.

    I actually had an NCIC close by in Indianapolis. That was the first one I went to, Simon Cancer Center. I'm sure most of the people there are excellent, however that's where they missed my cancer twice & misdiagnosed me. I felt like my doctor didn't care from the start. Again, I'm sure that's a one off. There are a mix of "bad" doctors everywhere. Feel free to inbox me if you want to chat or need somebody to talk to. I can't relate to your experience specifically, but i'm good at listening.

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  • po18guy
    po18guy CSN Member Posts: 1,572 Member
    #8

    You are very kind. All of this began in 2008, so I am pretty well settled into this journey! I was a moderator on a cancer forum that was shut down in 2020. This forum is also shutting down, but there is another long-standing forum that is still active:

    https://forums.lymphoma.com/

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