Please help me figure this out...

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MyJourneys
MyJourneys Member Posts: 143
edited September 2016 in Surgery - Before, During, and After

I was recently diagnosed with ILC and I'm trying to figure out where to go for treatment. Can you share your opinions about pros/cons of staying local (no NCI centers) versus traveling to a NCI cancer center?

I don't know enough to make a decision for post surgery care, radiation treatments, etc. Will I feel like traveling (by car or plane) after I'm released from surgery? How about if there are problems and I'm not close to my doctors?

I now have the results of my final two biopsies (also ILC, four spots total with one LCIS), so the next step is to decide on treatment and where. I need help focusing, and advice from those of you who've already been there.

Thank you!

Journey

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  • Denise-G
    Denise-G Member Posts: 1,777
    edited September 2016

    I'm very sorry you have to deal with all of this. It is absolutely overwhelming.

    I am a HUGE advocate for NCI designated cancer centers - at the very least for a second opinion. Myself, my mom, and my sister were all diagnosed within 3 years with BC. Two of us were Stage 3, my mom was Stage 1. We all went to the University of Michigan, an NCI designated cancer center that is 120 miles round trip from our homes. It was more than worth every mile driven. We all had conflicting treatment options given to us locally. But when we got to the NCI designated center, it all became very clear.

    1) The Tumor Board - having a group of breast cancer experts meet to discuss your unique case is a HUGE benefit to NCI Centers. When 30 experts told me I needed a mastectomy, I believed them. When 30 experts told my mom she did not need chemo nor radiation because of her being age 80, we believed them. When my sister was told lumpectomy okay unless she had a genetic mutation, we believed them.

    NCI designated hospitals know the latest and greatest treatments. You have access to other doctors which is so helpful. For example, when they found a growth on my sister's kidney, she was in to an expert within 3 days. It is a one-stop shop. And everyone communicates with each other.

    If you have to drive hundreds of miles, I still believe it is worth it to get a second opinion. You may be able to have treatment locally and work with them from a distance. I had radiation locally as I didn't want to drive that every day. My sister chose to have rads at the NCI center and drove it.

    This is one of my passions, so I get a little preachy! Sorry!

    Wishing you all the best to make the right choices for you!!



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  • dlb823
    dlb823 Member Posts: 9,430
    edited September 2016

    Journey, I'm really sorry about your recent dx, but glad you've found BCO. I totally agree with Denise about at least getting an opinion at an NCI-designated cancer center. My personal experience -- detailed on my bio page -- is a perfect example of what can go wrong that never should have. Find a medical center and team that specializes in breast cancer with docs who are passionate about studying and treating it... a team that sees hundreds of bc patients a year vs. dozens, so will have not only volume experience, but also subset (such as your multicentric ILC) experience to draw on... where they will be ahead of the treatment curve... and where small but possibly critical details won't be overlooked. Also, keep in mind that you can often put together a combination of docs, both NCI and local. That's what I did because UCLA is a good 3 hour drive from where I live. I had my second surgery and recon there, but chemo and rads (with UCLA's input) locally. Now, dealing with a recurrence that I might never have had if I'd gone to UCLA from the get-go, I still go to UCLA for treatment guidance, scans, etc., but see a local oncologist for monthly follow up.

    Good luck! Let us know what you decide! (((Hugs))) Deanna

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