Where do the docs get their treatment plan?

sueinfl
sueinfl Member Posts: 258
edited June 2014 in ILC (Invasive Lobular Carcinoma)

I have recurred with PILC and am back hitting the internet looking for info on what my treatment will be. My question is where do the onc docs get their protocols from? I have combed pubmed, etc. and can't find the studies. My fear is that they are just guessing when it comes to lobular...

Sorry for being cynical. Just so tired this time around.

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  • Momine
    Momine Member Posts: 7,859
    edited April 2013

    Crap! I am so sorry you have to deal with this all over again. I would feel tired too. Where/what is the recurrence?

    As for your question, I am really not sure.

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  • Golden01
    Golden01 Member Posts: 916
    edited April 2013

    One of the best places to look is the National Comprehensive Cancer Network at www.NCCN.com. They give guidelines for patients but I'd encourage you to register (it's free) and look at the guidelines for professionals. My sense is that often in research based centers, your care will include what is in the guidelines and may sometimes be a bit ahead of them as well. 

    The National Cancer Institute also offers good summaries about treatment for both patients and professionals: http://www.cancer.gov/cancertopics/types/breast

    Good luck to you in finding information to help you on this journey. 

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  • sueinfl
    sueinfl Member Posts: 258
    edited April 2013

    Thanks, Momine. It has shown up as new "lumps" that my onc brushed off as insignificantly reactive lymph nodes that were in fact PILC and have infiltrated skeletal muscle. I have a PET and MRI scheduled tomorrow to try and see if there are mets elsewhere. Darn lobular is so hard to see.

    Golden, that's great! I will check it out now!

    Sue

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  • Momine
    Momine Member Posts: 7,859
    edited April 2013

    Sue, grrrr, wouldn't it be nice it docs listened a little better? I hope your scans are spectacularly boring ;)

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  • toomuch
    toomuch Member Posts: 901
    edited April 2013

    Sueinfl - I agree with Golden that you shoudl definitely check out the NCCN website. It has lots of information regarding approved protocols but unfortunatley, there aren't any studies that I know of that address appropriate chemo for those of us with PILC. I was very frustrated by this when I was diagnosed and wished that I had known about Rational Therapeutics before my tumor was embedded in parafin. With fresh tumor, they can perform chemosensitivity testing. Ofcourse, the results of this are controversial but there is at least 1 member on this board with PILC who used it and found out that her tumor would not respond to Taxol and her MO changed her treatment plan. It may be something that you'd like to learn about.

    I'm sorry that you're dealing with this again. Sending positive vibes for negative imaging results.

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  • Golden01
    Golden01 Member Posts: 916
    edited April 2013

    Another idea is to ask your doctor to present your case to the Tumor Board at the hospital. Mine did that and it changed the options he offered to me. I also went for a second opinion at the NCI designated research center in my state. Went with their recommendations which were different from what my MO originally recommended. 

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  • sueinfl
    sueinfl Member Posts: 258
    edited April 2013

    Thanks, everyone. I called Moffit Cancer center for an additional consultation. I hope to get in before my appt at MDA Orlando on Friday. It might be a better fit. They are NCI designated, closer and I am more comfortable with the doctor's credentials. I will ask about the Tumor Board review. 

    I have been spending a lot of time in despair, almost afraid to be hopeful because the news has been so bad so far. Luckily, a morbid sense of humor can help... especially when finding magazine renewals a leap of faith.  Tongue Out

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  • Momine
    Momine Member Posts: 7,859
    edited April 2013

    Yep, a morbid sense of humor is a must for cancer patients. I wish you a great team of docs, because it really makes all the difference when you feel comfortable with the white-coat contingent.

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  • sueinfl
    sueinfl Member Posts: 258
    edited April 2013

    PET and MRI scans done today. MRI results were immediate and NED. PET results become available tomorrow. I couldn't get in to see my current onc until Monday, so will stop by the imaging center and pick the results up myself tomorrow after work. It won't be the first time I preempted the doc.

    These are the times I wish I had what is called an Endless Pool and could swim laps until I fell into an exhausted sleep. Thank goodness for alprazolam. And support like all of yours...

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