Lumbar puncture analysis

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AZLexie
AZLexie Member Posts: 3

I have been in treatment --chemotherapy and radiation--for metastases to my bones of triple negative breast cancer since early 2013, 12 years after I was diagnosed with the original breast cancer. A sudden numbing of the left side of my chin triggered a trip to the emergency room (my oncologist thought I may have had a stroke) and to the neurologist. The neurologist ordered a lumbar puncture and a C-T scan of my chin. The analysis of my CSF showed an extraordinarily high level of CEA. However, I have none of the symptoms the neurologist asked me about: no difficulty with balance, no headaches, no double vision, no nausea. A very recent MRI of my brain did not show mets. Leptomeningeal metastases have been mentioned. Do you have any insights, experiences, ideas? THANK YOU! AZ Lexie

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  • kt1966
    kt1966 Member Posts: 1,326
    edited July 2016

    I have just been diagnosed with Leptomeningeal mets, but I had a headache for a month prior (thought it might be sinus pain). I asked about lumber puncture to csf for bc cells, but they said they'd be unlikely to get any.

    If I want to check my receptor status they recommend a liver biopsy (just newly diagnosed there).

    My Leptomeningeal mets showed on a CT with contrast, and MRI.

    I hope you get some answers soon

  • Bestbird
    Bestbird Member Posts: 2,818
    edited July 2016

    Leptomeningeal Metastases (LM) can be difficult to diagnose, and I hope you end up clear of it!

    Below from my MBC Guide is a brief overview. You (and others) are welcome to request a complimentary copy of the 120+ page booklet by visiting the top of this page:https://community.breastcancer.org/forum/8/topics/831507?page=2#idx_32

    Symptoms of LM may include headache, backache, loss of sensation in the face (especially the chin), loss of bladder or bowel control, constipation, dizziness, extreme fatigue, confusion, weakness or loss of sensation in the legs and inner thighs, vision problems and/or hearing difficulties.Elevated CerebroSpinal Fluid (CSF) pressure, white blood count, and protein levels, and lowered glucose levels can also be signs of LM.Some patients with LM have no symptoms at all.

    LM occurs when breast cancer spreads to the meninges, which are layers of tissue that cover the brain and the spinal cord.Metastases can spread to the meninges through the blood or they can travel from brain metastases via the cerebrospinal fluid that flows through the meninges.About 2% to 5% of patients with metastatic breast cancer experience LM.

    Although LM usually occurs at a later stage in the course of metastatic breast cancer, in very rare instances, it can occur as a first metastasis.LM is difficult to treat because many drugs are not able to penetrate from the bloodstream through the meninges into the cerebrospinal fluid. Often brain metastasis and LM occur at the same time.For that reason, women diagnosed with LM should also have an MRI of the brain.From: http://brainmetsbc.org/en/content/leptomeningeal-metastases-1

    LM can be difficult to diagnose. The most common method is by withdrawing spinal fluid with a needle and examining it for breast cancer cells.This procedure is called a spinal tap or lumbar puncture.If the first lumbar puncture comes out negative, it must be repeated two more times to assure a 90% chance of an accurate diagnosis.Doing one puncture only assures a 45% accuracy.It is important that the lumbar puncture be close to the site of the suspected area of leptomeningeal metastasis.An MRI with gadolinium (a contrast agent) of the entire brain and spine can also be used to diagnosis LM and may be better than a CT scan.An MRI with a radioactive tracer can also be used to locate obstructions in the spinal fluid or blood flow caused by LM.However, on an MRI, inflammatory disease or local infection can sometimes be mistaken for LM.From: http://brainmetsbc.org/en/content/leptomeningeal-metastases-1

    Once LM is diagnosed, it is important to check:

    • The patient's ER, PR and HER2 status, as this will help to determine potential therapies.
    • Whether the disease is bulky or diffuse:
    • Whether IntraCranial Pressure (ICP) is elevated. If intracranial pressure is elevated, radiation may be a way to relieve CerebroSpinal Fluid (CSF) obstruction if needed. Relief of CSF outflow obstruction has been shown to improve functional status and is likely to prolong survival in these cases.A VentriculoPeritoneal Shunt (VPS) placement procedure can be used, which carries a small risk of hemorrhage, infection, or shunt malfunction.However, placement of a VPS is a definitive treatment for elevated ICP, and may be combined with a reversible on/off valve to facilitate administration of IntraThecal (IT) chemotherapy.For those in whom a surgical procedure is not desired or tolerable, palliative Radiation Therapy is also effective in relieving CSF outflow obstruction, although the duration of benefit is variable.From: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3623833/


  • kt1966
    kt1966 Member Posts: 1,326
    edited July 2016

    Thanks, bestbird. That's an interesting read.

    I'm having 10 sessions of WBR at the moment. I believe my Mets are diffuse. I will see my oncologist in a month (! -too far away?!) about systemic therapy. I'd quite like a liver biopsy to check receptor status first. Thinking of seeing if I can move my appts closer....

    I really hope this buys me more time, my kids are 18 & 21 - I want to be here for them for a lot longer yet. Also DH & I haven't had our 'after the kids have left the nest' fun & adventures :(

    Let us know how you go AZlexie

  • AZLexie
    AZLexie Member Posts: 3
    edited July 2016

    Dear KT1966, thank you so much for your response. You gave me lots of information at a time that I really needed it. I hope YOU get answers soon about the next steps for you. Please let us know how you are, and I will do the same. I hope it's OK to say that I write with love, for the gift of your swift response was a huge one. AZ Lexie

  • AZLexie
    AZLexie Member Posts: 3
    edited July 2016

    What a lot of information, Bestbird. I am with you: I hope to avoid LMs. Most of all I hope I have the strength of spirit to face them if they are there. Thank you SO much for all of that information! AZ lexie

  • Bestbird
    Bestbird Member Posts: 2,818
    edited July 2016

    AZlexie, you are very welcome!

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