Consultant on Tuesday

Ailidh
Ailidh Member Posts: 52
in Lymphoma (Hodgkin and Non-Hodgkin) #1

On Tuesday afternoon I'm seeing my haematologist. It's my 2nd 3-month review but brought forward at the request of my GP, because of an ongoing sore throat.

 

Trying not to think too deeply about it - either the lymphoma is back or it isn't - but I would appreciate prayers and thoughts from now until then, please!

Comments

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    #2
    got it !

    What was your treatment ? Might the soreness be from radiation or a chemo drug ? Some side effects do not manifest immediately; some are delayed.

  • Ailidh
    Ailidh Member Posts: 52
    #3
    Max Former Hodgkins Stage 3 said:

    got it !

    What was your treatment ? Might the soreness be from radiation or a chemo drug ? Some side effects do not manifest immediately; some are delayed.

    I've had the pain, off and

    I've had the pain, off and on, since February. When I first went to the doctor, he ignored it and gave me antibiotics, which gave me thrush. A second doctor sent me for a biopsy, and there was the lymphoma. It ached before treatment (R-CHOP and radiation) and during it and after it. The pre-treatment PET scan showed no cancer, that it all had been taken by the tiny biopsy. The radiologist and the haematologist sent me back to the GP, the GP's sent me back to the haematologist. I know it's unlikely to be the lymphoma but it's something! and, again, a GP has diagnosed thrush; but it hasn't been thrush since February, and I've never had it before this year, so I'm anxious.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    #4
    Ailidh said:

    I've had the pain, off and

    I've had the pain, off and on, since February. When I first went to the doctor, he ignored it and gave me antibiotics, which gave me thrush. A second doctor sent me for a biopsy, and there was the lymphoma. It ached before treatment (R-CHOP and radiation) and during it and after it. The pre-treatment PET scan showed no cancer, that it all had been taken by the tiny biopsy. The radiologist and the haematologist sent me back to the GP, the GP's sent me back to the haematologist. I know it's unlikely to be the lymphoma but it's something! and, again, a GP has diagnosed thrush; but it hasn't been thrush since February, and I've never had it before this year, so I'm anxious.

    Understand

    Fear and frustration are to be expected in these runarounds. 

    I experience sensations of swollenness in my neck and under both armpits frequently, although I finished treatment four years ago. The oncologist has felt these areas repeatedly, and says that there are no enlarged nodes whatsoever, so it is just an unquieting thing that I live with.  I do not let them worry me as much now, but it is impossible to totally banish.  A PET scan is pretty authoratative, so I would let that give me a bit of comfort.   My thnking of what to ask a doctor is this: If it is not cancer, what IS it ?    Punt the ball into his lap, and demand an answer.

    max

  • Ailidh
    Ailidh Member Posts: 52
    #5
    Thanks, Max, I appreciate

    Thanks, Max, I appreciate your comments; and although I'm sorry you get the scary pains too, it IS a comfort to know that other people get them , and 4 years on is a great thought!

     

    I'm not 100% sure what the haematologist will do today. Last time (October) she told me to go back to the GP, as I would need to be seen by an ENT (EarNoseThroat) consultant, and they weren't allowed to make the referral, because it would come out of their budget when it is supposed to come out of the GP budget. I saw a GP then, a new one to me, and she prescribed the Amitriptyline - although I didn't understand why because it really only helps nerve pain. Fast Forward to a couple of weeks ago, and 'my' GP has referred me back to Haematologist - who will probably try and bump it back to GP again. Starting to feel a bit like a ping pong ball. I'll press for a PET scan. Good news is that I'm getting a steroid injection in my bad shoulder tomorrow, and if it works, at least I'll be able to assume the position for a PET scan, which I currently can't!

  • Ailidh
    Ailidh Member Posts: 52
    #6
    Ailidh said:

    Thanks, Max, I appreciate

    Thanks, Max, I appreciate your comments; and although I'm sorry you get the scary pains too, it IS a comfort to know that other people get them , and 4 years on is a great thought!

     

    I'm not 100% sure what the haematologist will do today. Last time (October) she told me to go back to the GP, as I would need to be seen by an ENT (EarNoseThroat) consultant, and they weren't allowed to make the referral, because it would come out of their budget when it is supposed to come out of the GP budget. I saw a GP then, a new one to me, and she prescribed the Amitriptyline - although I didn't understand why because it really only helps nerve pain. Fast Forward to a couple of weeks ago, and 'my' GP has referred me back to Haematologist - who will probably try and bump it back to GP again. Starting to feel a bit like a ping pong ball. I'll press for a PET scan. Good news is that I'm getting a steroid injection in my bad shoulder tomorrow, and if it works, at least I'll be able to assume the position for a PET scan, which I currently can't!

    The consultant was very

    The consultant was very reassuring - although it takes a while to permeate! She explained that it was unlikely to be the lymphoma "as certain as I can be", because the pain level has been constant since February. If miniscule bits of cancer had survived the biopsy (the initial PET scan showed no cancer), they wouldn't have survived chemo and radio; and if they had, the pain would have got worse and I would have developed other symptoms.

    However, she acknowledges there is some kind of issue and has referred me a) to the ENT consultant and b) for an MRI, which she says will be better, although I don't know why.

    It took me several hours to come back down but I think I'm OK now. Phew. Thanks again, Max.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    #7
    Ailidh said:

    The consultant was very

    The consultant was very reassuring - although it takes a while to permeate! She explained that it was unlikely to be the lymphoma "as certain as I can be", because the pain level has been constant since February. If miniscule bits of cancer had survived the biopsy (the initial PET scan showed no cancer), they wouldn't have survived chemo and radio; and if they had, the pain would have got worse and I would have developed other symptoms.

    However, she acknowledges there is some kind of issue and has referred me a) to the ENT consultant and b) for an MRI, which she says will be better, although I don't know why.

    It took me several hours to come back down but I think I'm OK now. Phew. Thanks again, Max.

    Super

    Ailidh,

    Glad the doc lifted your spirits.  I would "go with" what she told you, and try to forget about cancer. Hopefully the MRI will add to your comfort.  I know getting over cancer worry is easier said and done, but from what you have written, all indications are negative.  Some folks (I have seen it here more than once) seem resolved to worry about having cancer for the rest of their lives (despite all test resultsbeing negative), verses moving on and moving forward .

    I myself have had an abdominal pain, right side, just below the rib cage for about five years now. It was looked at on varioous tests when I was getting chemo, and on an ultrasound. The only thing in the area was my gall bladder, which I had removed when my port was taken out. The pain has not changed since. I had a full colonoscopy and upper GI early this year (not due to the pain, but because of anemia), and it was perfect -- no issues.  The docs have told me "there really is no major organ or any problem where you have the issue."  I never assumed it was cancer, or anything else, for that matter, I was just making the docs aware.

    I have since forgotten about it. It worsens with exertion or yard work, but when it does, I pay it no attention.  Nothing serious, obviously, so I have had to just put it out of my mind, successfully I am thankful to say.    I have written elsewhere on the board about swollen sensations under both armpits and in my neck, but my oncologist says they are some sort neurological oddity, and to ignore it. I do ignore it, and sleepm without concern.

    Like the DUI commercials say on TV, we have to "Know when to say when."

    Wishing you decades of peace, and a blessed Christmas,

    max

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