STAGE 1 OR 2 TO STAGE IV?

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Pamela44
Pamela44 Member Posts: 143
edited June 2014 in Genetic Testing

BRCA 1 +, OVCA survivor,  and close to getting PBM but now conflicted and having doubts.  Told that under surveillance (MRI/mammo alt. every 6 mths), BC will be caught in early stage- DCIS or Stage 1 or 2 with normal lymph nodes.  Told it would be eminently treatable.  Have any of you experienced early stage with negative nodes going on to metastatic disease?  Your replies would be very helpful in assisting me in making my final decision.  Thank you.

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  • QuinnCat
    QuinnCat Member Posts: 3,456
    edited October 2012

    Hi Pam - Here is my perspective.  I was "caught" at Stage I (brca2+), but due to the aggressive nature of my tumor, I have been in treatment for a full year, including 5 months of chemo.  Depending on what stats you use, my recurrence rate is anywhere from 18% - 36% in 10 years.  Due to the chemo, I still have peripheral neuropathy in my feet and hands (3 months out of chemo and not resolving....could be permanent).  Now I am taking hormone blockers for 5 years....they make me feel like an old lady...joint pain, carpel tunnel syndrome, insomnia.  Would I have done a PBM if I knew what I knew now - YES.  Would i have done it pre cancer, if I had been able to get the test...I think so, though that is difficult to answer in the abstract.

    If you end up with a Luminal A type tumor, Stage I, maybe it would be an easier journey, but you still have to worry about recurrence.  I'm not sure about this, but I believe brca cancers tend to be of the more aggressive type - triple negative.  While mine is ER+, I had a very high oncotype score.   Everyone with BC has to worry about recurrence, in any case.

    There is nothing that would convince me to advise anyone to take the monitoring route with brca.

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  • Pamela44
    Pamela44 Member Posts: 143
    edited October 2012

    Thank you Kam170 for answering.  I also have a significant neuropathy left over from my ovca treatment with taxol and cisplatin,a double whammy.  My decision would be obvious except it is blurred by the fact that though I am doing well right now, if my ovca comes back, which it likely will I have to balance the risk of bc against living only 5-10 years more.  But, I am beginning to realize that even if I only have 5-10 years I do not want that spent under treatment for breast ca.

    Thank you so much for your preply and I hope for the best for you.

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  • QuinnCat
    QuinnCat Member Posts: 3,456
    edited October 2012

    Pam - I sent you a PM, but for anyone else in your shoes, I just wanted to say openly that the BMX or PBMX (same surgery) was not a bad surgery.  I was walking an hour a day after a couple of weeks (with drains).  For what it could save you from, being BRCA, imho, it is well worth it.  Reconstruction was easy for me...and may be for most, too.

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  • InspiredbyDolce
    InspiredbyDolce Member Posts: 1,181
    edited October 2012

    Hi Pam:

    If I was in your shoes, I would have the PBMX.  Some people's diagnosis were missed with surveillance, and even some who caught things early, still had nodal involvement.  Nobody can predict what will happen, so in absence of that, the best thing to do pro-actively is preventative treatment.  If you have an opportunity now to head it off at the path, then that is something to consider.

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