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Thread: Scared

  1. #1
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    May 2019
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    Scared

    I’m facing my first lymph node biopsy in ten days and I’m getting scared. I also have night sweats off and on for two years, some mild weight loss, moderate bad fatigue and generalized itching. Also I have low platelets and red blood cell abnormalities.

    I’m embarrassed to post this here, because I don’t have a diagnosis of lymphoma, and the people here Don’t have the luxury that I have — that maybe I don’t have anything worrisome after all. But the symptoms are getting more numerous and extreme over time. For over one year, my doctor has told me she’s afraid I might have indolent lymphoma. And now I have a very large lymph node to biopsy. Like I said, I’m really scared. I only have a couple of friends I can talk to openly about my feelings, and I don’t want to overburden them, nor my spouse.

    Thank you all
    Last edited by JiminPdx; 05-24-2019 at 07:28 AM. Reason: Typos

  2. #2
    Moderator Top User
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    Hi and sorry to see you posting about your worries, as you do not have a diagnosis of lymphoma I have moved your post to the worried forum please read this sticky :
    https://www.cancerforums.net/threads...t-it-read-this!!

    Remember this is a test and they are done to rule things out as well as to try to determine what may be going on, at this stage you do just have to wait and see what comes back, your symptoms could be due to many things and if you have had some of the symptoms for 2 years then if it should turn out to be lymphoma then it will not be an aggressive type. But as we are not doctors we cannot say yes or no re whether its lymphoma.
    If it does turn out to be the case you have lymphoma, then we are here to help support you, but I hope thats not the case and you can park up your worries and get on with life.
    NHL DLBC aggressive stage 4B advanced
    diagnosed april 09
    after 8 rchop and a couple of delays, in remission
    some long term side effects to manage post treatment
    some blips and investigations on the journey but now
    22nd oct 2014 discharged no more hospital visits


    we are all on a roller coaster ride, riding blind never knowing where the highs and lows are.

  3. #3
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    Thanks John

    Thanks John and sorry for posting in the wrong place. This is a great site—I just referred my friend who is getting XRT for breast cancer and I know it will help her.

    My biopsy is in 9 days and I’ll post the results. If they are normal maybe they will help future “scaredy-cats” feel less anxious at a frightening time.

    Having the combination of large node, abnormal blood counts (low platelets and large red cells), nightsweats and bizarre itching is scary but of course it is most likely not cancer. But my friend who has indolent lymphoma—and is a medical sub-specialist—told me that I “definitely have lymphoma”. That really scared me but she is not an oncologist so I’m going to ignore her.

    My doctor has been telling me she is worried about indolent lymphoma for two years. My LDH and beta globulin we’re normal two years ago but she’s still very worried. It will be good to prove her wrong!

    Best wishes to everyone on here. You’re such a huge help.
    Last edited by JiminPdx; 05-28-2019 at 06:16 AM. Reason: Typo

  4. #4
    Moderator Top User
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    Hi no need to apologise, will watch out for your update and just to say I have talked to many people over the years where a doctor has said it was lymphoma and it turned out not to be, that's why we always say until the biopsy results are back, no one has cancer, as its the only way a diagnosis can be made.
    Stay positive and get on with life and ignore those worriers and do prove them wrong
    NHL DLBC aggressive stage 4B advanced
    diagnosed april 09
    after 8 rchop and a couple of delays, in remission
    some long term side effects to manage post treatment
    some blips and investigations on the journey but now
    22nd oct 2014 discharged no more hospital visits


    we are all on a roller coaster ride, riding blind never knowing where the highs and lows are.

  5. #5
    Regular User
    Join Date
    May 2019
    Posts
    35
    Out of curiousity—do you know what factors oncologists consider when deciding to move to chemotherapy? What constitutes “progression”? Is it the appearance of a lot of new loads? Is it a high LDH or beta globulin? (Obviously functional organ impairment from a non operable tumor mass could be a trigger ) . I know every patient is different and so is every oncologist. But I read about watchful waiting followed (sometimes) by active treatment – and I wonder if there are standards that are widely shared

    Thanks again to you and the other posters. You’re a godsend
    Last edited by JiminPdx; 05-29-2019 at 01:42 AM. Reason: Typi

  6. #6
    Quote Originally Posted by JiminPdx View Post
    Out of curiousity—do you know what factors oncologists consider when deciding to move to chemotherapy? What constitutes “progression”? Is it the appearance of a lot of new loads? Is it a high LDH or beta globulin?

    The decision on what kind of treatment to recommend really depends on the exact diagnosis, and the pathology report, as well as the staging.

    The clinical presentation, what it looks like is part of it, but also how it looks in the pathology lab, scans , etc.

    New forms of immunotherapy and other options in addition to chemotherapy are being brought online all the time.
    Nov 2013 PSA 4.2 Biopsy Jan 2014- 1 core positive, 20% Gleason 6, doctor highly reco'ed robotic RP - 2nd opinion at UPMC April 2014, put on active surveillance. 2nd biopsy Feb 2015, results negative. PSA test Feb 2016, 3.5. 3rd Biopsy Feb 2016. 3 positive cores less than 5%, Gleason 6. Octotype DX done April 2016, GPS Score of 24--rated "Low risk". PSA test 8/2016, 3.2. PSA test 1/2018 2.2 (after 7 months of proscar) PSA test 7/2018 2.3, PSA test 7/2019 2.0


    DOB 1956, in Pittsburgh, USA

  7. #7
    Moderator Top User
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    1,359
    Best not to speculate or be curious, as the are so many variables with indolent lymphoma, but as you are going to prove them wrong and you don't have a diagnosis, don't waste time pondering the what if.

    IF you should end up having lymphoma they will look at the whole picture and discuss options with you and thats the time when decisions are made, but your a long way off that at this time and hopefully it will remain so.
    NHL DLBC aggressive stage 4B advanced
    diagnosed april 09
    after 8 rchop and a couple of delays, in remission
    some long term side effects to manage post treatment
    some blips and investigations on the journey but now
    22nd oct 2014 discharged no more hospital visits


    we are all on a roller coaster ride, riding blind never knowing where the highs and lows are.

  8. #8
    Regular User
    Join Date
    May 2019
    Posts
    35

    Biopsy today

    My biopsy was today. The touch prep — where the pathologist looks at things immediately – was not so good, and they are sending samples of the lymph node to the university specialists for genetic typing, flow cytometry, and clarification about unusual features. But they do feel it looks likely to be lymphoma. I am hoping that this is just an infection, and that one of the fungal, TB or bacterial cultures will be positive. I felt so sad for my husband, who had to talk with the surgeon while I was still anesthetized, and then patiently wait for me to wake up so he could share the news. I think this is harder for him than for me.

  9. #9
    Moderator Top User
    Join Date
    Mar 2010
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    1,359
    Hi again and I say this to help rather than be dismissive, but the number of times someone has posted to say a medic has told them it looks like lymphoma is numerous and most turn out not to have, the biopsy results will tell you wether it is or not and its unprofessional for medics to indicate that it could be when they cannot say for sure.
    I do hope its not, but should it be lymphoma then it will be treatable and should respond well to treatment.

    let us know how your results go

    John
    NHL DLBC aggressive stage 4B advanced
    diagnosed april 09
    after 8 rchop and a couple of delays, in remission
    some long term side effects to manage post treatment
    some blips and investigations on the journey but now
    22nd oct 2014 discharged no more hospital visits


    we are all on a roller coaster ride, riding blind never knowing where the highs and lows are.

  10. #10
    Regular User
    Join Date
    May 2019
    Posts
    35
    My flow cytometry is done and while waiting for the final path report, I have a few thoughts. First, Gratitude, for the kindness and patience of the moderators, who are never harsh with the worried and worried well visitors. Second, a kernel of joy. Literally. I went to the library today to find a good sci-fi book. But the first book I saw on the shelf was The Book of Joy. It’s a dialogue between Archbishop Desmond Tutu and the Dalai Lama. I picked it up and opened at random. And wow—the book opened to the chapter on illness and suffering. It was like a diamond fell out of the sky. I’ve already read two chapters. It’s a wonderful book, and it made me feel very peaceful as I float in this strange interspace.

    Thanks again.

 

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