Second Opinions

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Rocquie
Rocquie Member Posts: 869 Member
in Lymphoma (Hodgkin and Non-Hodgkin) #1

Getting a second opinion seems to be a popular subject around here and I wanted to share my recent experience. I never asked my doctor for a second opinion, but he himself referred me for one to Duke University. (His word was "consultation", not second opinion if that helps anyone ask for one). 

The Duke doctor sent my biopsy reports to their own pathology department to be read and that is where things got interesting. After 5 rounds of chemo, my diagnosis changed! I was originally diagnosed with Transformed Marginal Zone NH Lymphoma, Stage 3B. According to Duke University, I had Follicular NH Lymphoma, Stage 3A.  Upon learning this, my local doctor turned to the local pathologist and asked the slides be read a 3rd time.  The local pathologist then concurred with Duke. 

My doctor assured me that treatment would have been the same either way.  But I remain sketchy in my mind about what this means.  I have an appointment with my local doctor Friday and I will be asking for further clarification.

So, I offer the concept of asking for a second opinion on pathology.

Rocquie

 

Comments

  • Rocquie
    Rocquie Member Posts: 869 Member
    #2
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    Oops!

     

    You sure can tell I'm a rookie around here. Not sure why this posted 3 times. I must have been shaking when I clicked the submit button.

  • illead
    illead Member Posts: 884 Member
    #3
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    Rocquie said:

    Oops!

     

    You sure can tell I'm a rookie around here. Not sure why this posted 3 times. I must have been shaking when I clicked the submit button.

    Not to worry

    It has happened to a lot of us.  I once flagged someone thinking it meant I was saving it on "My page"  Instead it reported her post.  I still feel horrible about it.  Becky

  • po18guy
    po18guy Member Posts: 1,465 Member
    #4
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    Second "consultations" save lives

    In another forum, a member was diagnosed and treated for a B-Cell Lymphoma, which did not respond all that well. After much angst and consternation, another biopsy was done. Oops! It was actually an aggressive T-Cell Lymphoma - which rarely respond to B-Cell therapies. By now, her condition had rapidly deteriorated and infection set in, stopping tretment. Time ran out for her very quickly. The second opinion came too late.

    In my case, my new-to-me PCP gave me antibiotics and anti-anxiety meds even though I had gone from a single node to many of them. Going elsewhere, I had both excisional node and bone marrow aspiration biopsies. The pathologist saw no cancer. The oncologist wanted to wait. My condition had deteriorated quickly, with cervical nodes visible from 50 feet away. DW made an appointment at Fred Hutchinson, where the biopsy samples were re-examined and more sophisticated testing was done. Oops! It was not anxiety, or any form of infection. What it was, was a rare, unclassifiable form of T-Cell Lymphoma that resembled AngioImmunoblastic T-Cell Lymphoma, but wasn't. A PET was done. I had widespread disease with "innumerable" tumors and bone marrow involvement, and about 12 weeks left to live if it did not respond to treatment. The only problem is that there is no standard treatment for it. Doctor had to guess, consulting with his peers and poring over world-wide research. 

    Suffice it to say that more miracles were needed, but they arrived and so I am here today. 

    I am a huge supporter of second opinions.

  • cathyp
    cathyp Member Posts: 376 Member
    #5
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    po18guy said:

    Second "consultations" save lives

    In another forum, a member was diagnosed and treated for a B-Cell Lymphoma, which did not respond all that well. After much angst and consternation, another biopsy was done. Oops! It was actually an aggressive T-Cell Lymphoma - which rarely respond to B-Cell therapies. By now, her condition had rapidly deteriorated and infection set in, stopping tretment. Time ran out for her very quickly. The second opinion came too late.

    In my case, my new-to-me PCP gave me antibiotics and anti-anxiety meds even though I had gone from a single node to many of them. Going elsewhere, I had both excisional node and bone marrow aspiration biopsies. The pathologist saw no cancer. The oncologist wanted to wait. My condition had deteriorated quickly, with cervical nodes visible from 50 feet away. DW made an appointment at Fred Hutchinson, where the biopsy samples were re-examined and more sophisticated testing was done. Oops! It was not anxiety, or any form of infection. What it was, was a rare, unclassifiable form of T-Cell Lymphoma that resembled AngioImmunoblastic T-Cell Lymphoma, but wasn't. A PET was done. I had widespread disease with "innumerable" tumors and bone marrow involvement, and about 12 weeks left to live if it did not respond to treatment. The only problem is that there is no standard treatment for it. Doctor had to guess, consulting with his peers and poring over world-wide research. 

    Suffice it to say that more miracles were needed, but they arrived and so I am here today. 

    I am a huge supporter of second opinions.

    Back in 1989 my frozen biopsy

    Back in 1989 my frozen biopsy (done while I was on the operating table) came back malignant Thymoma so every bit of cancer was removed causing paralysis of my diaphragm and vocal cord.  Standard procedure in my hospital in 1989 was to send out pathology to 3 major hospital labs.  They dx'd Hodgkins Lymphoma.  So what I'm trying to say is I'm astonished that there isn't a checks and balance system for all biopsy's like this.  For my breast cancer in 2007, the hospital lab did the pathology.  I had it sent to 3 other labs for confirmation.  It's sad that we have to be fighting an illness and be the manager for our healthcare at the same time.

    Sorry that this happened to you,

    Cathy

     

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