OK, new complicaton for me

stell27
stell27 Member Posts: 15
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
I just got a call from the Dr. telling me she is confused, great, the dr. is confused.I am the one who is 58 and just diagnosed with follicular low grade stage one with b symptoms.And my bone marrow and Pet scan were normal, good news right? So she calls to tell me that the blood work she just did on me does not coinside with the results of the bone marrow. She said she took it to have a baseline and expected to be neg. because that is the ususal course for this test. So now I am freeking that the bone marrow is wrong, a false negative.Because if they are seeing somethig in the blood, I would think that seeing something is more accurate than not seeing something.Forgive me if i dont make sence, this is so new and now this. I asked if she can send my bone marrow out for another reading and she is looking into it to see if they can use the same one. She suggested that I may need another one. NO WAY can I do that againg so soon. Maybe with sedation, I am just feeling good from the last one a week and a half ago. The memory is too strong right now of the pain. Has anyone had a second bone marrow vey close together??? I am really scared, I thougt I had a good chance at not getting more than radiation at this time. She wants the second opinion Dr. to run another blood test. She said it may change my grade and stage. OH WELL sorry for venting out of control.

Comments

  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #2
    Is your dr. a onc. dr? I do
    Is your dr. a onc. dr? I do not understand the mix up they are having at all. This disease can't afford any mistakes. If it is in the bone it will staged as a 4. The outlook for 4 is also good. The staging for nhl is not like other primary cancers such as lung,liver,pancreatic,etc. No matter where it goes it is still follicular lymphoma. It is treatable with chemo. From what I have read they have come a long way in the past 20 years. I have nhl follicular stage 4 and start chemo in 1 week. I am not looking forward to it, but I have no choice if I want help. Have you tried a 2nd opinion? That may be a good choice. Get back to me and we can talk about it more. My e-mail is jskeeter1241@hotmail.com. i need someone to talk to also.
  • yesyes2
    yesyes2 Member Posts: 591
    #3
    New Complication
    Oh Stell27 I'm so sorry your doctor's call was so upsetting. And don't ever feel you need to appologize for venting. That's what this board is for. I'm sure the last thing you wanted to hear is that your onc is confused. I find that my Onc's favorite saying when I ask questions is "I don't know". I've also gotten that from the specialists that I have seen in 2 major medical centers. NHL both in staging and diagnosing is very confusing, even for the docs. If it were me I would ask my doctor to explain what she is specifically seeing in the blood work that makes her thing there is bone marrow involvement. My bone marrow has always been clean, however I have had elevated LDH levels in my blood which is a prognostic indication of lymphoma. I have been dealing with lymphoma for 2 1/2 yrs and just recently completed 6 cycles of RCHOP and am in CR for the second time. I have a very rare aggressive form of NHL B and T cell, not follicular. And was a stage 3 the first time, and a stage 1 which grew in bulk to a stage 2 by the time I received treatment the second time. My type of lymphoma is not graded and is called LPD.

    There is no reason why you can't be sedated for the BMB in my opinion. They are way too painful and I think they should be able to sedate you. I know each medical center and hospital has their own procedures so if you don't like the one your offered go find a new one. When do you go for your second opinion? Where are you located and is your second opinion with a major medical center? Please let us know what you find out. And remember to breath.
  • dixiegirl
    dixiegirl Member Posts: 1,043 Member
    #4
    yesyes2 said:

    New Complication
    Oh Stell27 I'm so sorry your doctor's call was so upsetting. And don't ever feel you need to appologize for venting. That's what this board is for. I'm sure the last thing you wanted to hear is that your onc is confused. I find that my Onc's favorite saying when I ask questions is "I don't know". I've also gotten that from the specialists that I have seen in 2 major medical centers. NHL both in staging and diagnosing is very confusing, even for the docs. If it were me I would ask my doctor to explain what she is specifically seeing in the blood work that makes her thing there is bone marrow involvement. My bone marrow has always been clean, however I have had elevated LDH levels in my blood which is a prognostic indication of lymphoma. I have been dealing with lymphoma for 2 1/2 yrs and just recently completed 6 cycles of RCHOP and am in CR for the second time. I have a very rare aggressive form of NHL B and T cell, not follicular. And was a stage 3 the first time, and a stage 1 which grew in bulk to a stage 2 by the time I received treatment the second time. My type of lymphoma is not graded and is called LPD.

    There is no reason why you can't be sedated for the BMB in my opinion. They are way too painful and I think they should be able to sedate you. I know each medical center and hospital has their own procedures so if you don't like the one your offered go find a new one. When do you go for your second opinion? Where are you located and is your second opinion with a major medical center? Please let us know what you find out. And remember to breath.

    2nd Opinion
    Go for the second opinion. At least they want to know what's going on. My original biopsy was sent to Mayo for confirmation.......it took 2 weeks to get the diagnosis but my lymphoma was rare and odd. I feel better for the 2nd opinion.

    It'll work out. Take it easy. It's ok to be concerned and worried. It's a hard road, but we are all warriors.

    Good luck to you!

    Beth
  • winthefight
    winthefight Member Posts: 162
    #5
    2nd opinion
    I agree with Dixigirl, go for a second opinion. Having certainties will calm your mind. The sooner you get definite answers, the sooner the competent Oncologist can begin a treatment plan.

    Lots of luck, please let us know what's going on.

    Take care,
    Win.

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