Grand Rapids, MI area

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Sciteachmama
Sciteachmama Member Posts: 12
edited January 2018 in Triple-Negative Breast Cancer

Hi everyone,

I'm currently taking xeloda because I had a few mm of residual triple negative cancer left and 7 out of 20 nodes had micromets. I will be finished in late May. I was diagnosed March 2017. My husband and I are thinking of moving to the Grand Rapids, Mi area in the next few years. My main concern is the kind of care I will get. I currently live in Chicago and I feel I am taken care of my a very good team. i will see either my oncologist or breast surgeon every three months for 5 years. Does anyone know what kind of cancer care there is in Grand Rapids? Should I not move? Has anyone moved and changed care teams? Thank you for any advice.

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  • Sam0623
    Sam0623 Member Posts: 110
    edited January 2018

    Sciteachmama,

    I live in the Grand Rapids area (Hudsonville actually) and have received most of my care here. I have traveled to several other centers to get opinions (M.D. Anderson, MSK, University of Michigan and Karmanos) and in the beginning most agreed with the same treatment, so I did chemo and surgery here. The main takeaway moving from a large city like Chicago to a smaller city is going to be access to clinical trials. My doctor here has been very open to taking suggestions from the other places I've gone, but there is only 1 clinical trial available. I plan on traveling to do a clinical trial somewhere else- hopefully MSK. Once you finish Xeloda and don't have regular visits you could always have an oncologist here for emergencies, but still go back to Chicago every 3-6 months for your follow up.

    I don't think the doctors here are incapable or anything, they just don't have access to things the larger facilities have and don't have the research focus other centers have. The only NCI facilities in Michigan are in Detroit/Ann Arbor.

    If you have any questions please let me know. I really like my local oncologist, but I did radiation at M.D. Anderson and I like that I will have follow up with them every 6 months as well. With Chicago being so close, I think you could make it work without a lot of interruption.

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  • Sciteachmama
    Sciteachmama Member Posts: 12
    edited January 2018

    Someone sent me a private message with this info for anyone who might be searching for the same answers:

    I live in West Michigan (not GR) and used Mercy Health Lacks Cancer Center in Grand Rapids for my breast cancer diagnosis and treatment. I was impressed with the care and followup. I was assigned a nurse navigator, surgeon (Dr. Keto) (lumpectomy), and now see my surgeon for followup every two years and the nurse practitioner in the same practice on alternate years. I did not need chemo and am not on meds so I do not see an MO. The other big option in GR is Spectrum Health. I don't know much about them directly for breast care, but most of my other doctors are in the Spectrum system.

    Here are links to two major options in Grand Rapids Michigan:

    Mercy Health in Grand Rapids. https://www.mercyhealth.com/medical-services/cancer-care/lacks-cancer-center/programs-and-clinics/breast-care/They have offices all around West Michigan.

    Spectrum Health in Grand Rapids. https://www.spectrumhealth.org/patient-care/cancer/screening-and-prevention/betty-ford-breast-care-servicesAgain, offices all around West Michigan.

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  • Sciteachmama
    Sciteachmama Member Posts: 12
    edited January 2018

    Hi,

    Thanks for responding. We have a very similar cancer story--I read your info in your signature. I was diagnosed in the right breast in March 2017 with TNBC--2.4 cm and 7/20 nodes positive (after chemo). I did the AC-T treatment. I asked about carboplatin but was told only if I was BRCA positive which I wasn't (although my sister tested and she is and so is my dad). I'm curious as to what clinical trial you're thinking about because I'm looking into them as well although my doctor doesn't seem interested. I will be travelling as well if I do qualify. This is the one I'm looking into: https://clinicaltrials.gov/ct2/show/NCT03012100?te...

    Thanks again for answering my questions. It was very helpful.

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  • Sam0623
    Sam0623 Member Posts: 110
    edited January 2018

    Hey,

    I had my tumor tested for androgen receptor and it tested highly positive, so I planned to participate in this one https://clinicaltrials.gov/ct2/show/NCT02750358?term=Androgen&recrs=a&cond=Breast+Cancer&rank=16. Unfortunately when MSK tested my tumor it was only slightly positive, so they are currently in the process of retesting. If that doesn't work out I would be interested in the vaccine trial you found, or the MO I saw at MSK mentioned there may be a copper depletion study opening up that I may consider. I like you have some time to decide before I'm finished with Xeloda, so I keep checking to see what's out there. I feel good with what I've done so far, but definitely want to do everything I can.

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