Anyone else going through something like this?

MCR1967
MCR1967 Member Posts: 6
in Lymphoma (Hodgkin and Non-Hodgkin) #1
Found a lump on my upper arm near my armpit, but more on my bicep. Biopsy results came back suspicious for lymphoma and were sent on to Pittsburgh for consult. Those results came back as chronic lymphocytic lymphoma which translates to SLL/CLL. Had Bmbx, a full CT series and blood work in October 2011. My CT scan showed no enlarged nodes, blood work was normal, and I have a 5% marrow involvement. I felt like I was dropped into the middle of the ocean with no idea which direction I should swim. I am a 44 year old wife and mother of 2. When I met doctor after my testing he said I may never need treatment. I follow up with him on Jan 23, 2012 and that I need another CT series at 6 months, which will be March 2012. At my first visit with doc in October 2011, the scope of what it could have been was so large that I couldn't even go in there with good solid questions. Since then, I have been working at getting a list of questions together for my Jan 23 appointment. I have been able to answer some questions on my own as I poke around and do some research. Sometimes I can look at research and say wow...24 year median survival seems long but when I add 24 to my age, 44...it doesn't seem so great.

I did like doc but I'm even confused on staging...He said it was one lymph node so it would be stage I but it was in my bone marrow so that means stage IV and said I would quite possibly never need to be treated. So I have no idea what my stage is. He also seemed to indicate that 5% marrow involvement was nothing at all to be concerned with.

Help if you can...thanks!

Comments

  • po18guy
    po18guy Member Posts: 1,508 Member
    #2
    Lymphoma is different
    Blood cancers (leukemia/lymphoma) are staged differently from other cancers. Yes, a single area of involvement is stage I, and involvement in another organ raises it to stage IV, but it appears that SLL/CLL can either originate in the marrow and then spread to other organs, or the reverse may be true. So, marrow involvement may not be the serious sign that it is with some other cancers. It is an indolent, or slow growing, cancer, and you may have lived with it now for years. Treatment may or may not be needed for some time. However, I would strongly recommend that you obtain a second opinion from a doctor at a large, regional cancer center - one with extensive experience. A second opinion can back up both diagnosis and treatment, or can possibly correct something that might have been missed by the first doctor or pathologist. BTW, there are a lot of us that began at stage IV and are doing just fine.
  • MCR1967
    MCR1967 Member Posts: 6
    #3
    po18guy said:

    Lymphoma is different
    Blood cancers (leukemia/lymphoma) are staged differently from other cancers. Yes, a single area of involvement is stage I, and involvement in another organ raises it to stage IV, but it appears that SLL/CLL can either originate in the marrow and then spread to other organs, or the reverse may be true. So, marrow involvement may not be the serious sign that it is with some other cancers. It is an indolent, or slow growing, cancer, and you may have lived with it now for years. Treatment may or may not be needed for some time. However, I would strongly recommend that you obtain a second opinion from a doctor at a large, regional cancer center - one with extensive experience. A second opinion can back up both diagnosis and treatment, or can possibly correct something that might have been missed by the first doctor or pathologist. BTW, there are a lot of us that began at stage IV and are doing just fine.

    Thank you so much for your
    Thank you so much for your response. The doctor I am seeing is at a large cancer center in Pittsburgh (Hillman Cancer Center). Best of luck to you.
  • po18guy
    po18guy Member Posts: 1,508 Member
    #4
    MCR1967 said:

    Thank you so much for your
    Thank you so much for your response. The doctor I am seeing is at a large cancer center in Pittsburgh (Hillman Cancer Center). Best of luck to you.

    The web has much info
    Thank you! The web will have an almost undigestible amount of information. However, one can glean sufficient information from available sources to be reasonably well informed on options. It is good that you are at a large center. Yet, CLL/SLL is rare enough that I would not rule out consulting with a second oncologist. Just something to ponder.

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