PILC w/ residual (& different?) disease after neoadj

naps
naps Member Posts: 61
edited September 2016 in ILC (Invasive Lobular Carcinoma)

Hello,

I have never posted here before but don't know where else to turn.

I was diagnosed with PILC in March (hormone receptor--, HER2+ @ 3+) with a biopsy proven node and underwent 6 cycles of TCHP. Surgical pathology showed a "good, but incomplete" response to the neoadjuvant chemo.

Now, 3 weeks after my unilateral mastectomy and ALND, gearing up to start radiation, I find out that the repeat immunohistochemistry (and FISH) on the residual nodal disease appears to show triple negative disease left over. I am reeling. Got the call and ended up having a small meltdown in the produce section :(

My med onc is going to have my institution's pathologist take a second look once she can get the path slides (surgery was done at an outside institution) but is tentatively recommending more chemo, this time adriamycin and cytoxan-based. This would mean holding the herceptin for several months and deferring radiation. Yikes. Another med onc in the family thought maybe adjuvant capecitabine instead? She says we are "off the road" here in a territory where there is no standard of care bc not enough research has been done on such things.

I kind of dread getting sick all over again from chemo, losing my hair again (it is just growing in now,) and hammering my immune system a second time. I had neutropenic fever the first time around and got neulasta each time which barely propped my ANC up enough between infusions. I feel like all I read lately underscores the importance of a functional immune system in fighting cancer. I am of course willing to do whatever I can to improve my chances--I just turned 45 and love my life and have two kids who mean the world to me-- but I feel kind of numb and despairing at the moment. I am wondering how quickly it might be possible to get a second opinion at MD Anderson(?)

Anyone have any kind of similar experience or hopeful input or know of any experts on this situation/disease? (Not sure if I mean PILC or HER2 + or Triple Negative or what to do with residual after neoadjuvant chemo...maybe any of the above?)

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  • mairew
    mairew Member Posts: 84
    edited September 2016

    Naps

    Sorry you are dealing with more bad news. Glad you reached out. Definitely get a second opinion. In my experience getting an appt with MD Anderson was quick and relatively easy.

    Sending you hugs.

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  • Mixedfeelings
    Mixedfeelings Member Posts: 13
    edited September 2016

    so sorry you are facing more treatment. I think a second opinion at an NCI Cancer Hospital is an excellent idea when things get complicated or are unusual. Please keep us posted. Wishing you good answers to your questions and good results from any further treatment.


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  • nash
    nash Member Posts: 2,600
    edited September 2016

    naps, I'm sorry you're dealing with all this. I had a recurrence of PILC, but mine was, and stayed, ER/PR+, HER2-.

    If I were in your shoes, I would absolutely run as quickly as I could over to MD Anderson.

    Also, there is a bc surgeon named Dr. Tari King who ran a study on PILC and PLCIS a few years ago (I actually sent tissue in to her). She is one of the only drs that I know of with a clinical interest in PILC. When she did the study she was at Sloan Kettering in NY; now she is at Dana-Farber in Boston. I don't know if anyone at MSK still has clinical interest in PILC, but it would be worth a call. And I would suggest getting in touch with Dr. King.

    http://doctors.dana-farber.org/directory/profile.a...


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