Sister Recently Diagnosed in San Francisco

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sfgene
sfgene Member Posts: 5
edited December 2014 in Just Diagnosed
Sister Recently Diagnosed in San Francisco
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  • sfgene
    sfgene Member Posts: 5
    edited December 2014

    Hello,

    My sister was diagnosed a couple of weeks ago:

    Dx 11/21/2014, IDC, 2.5cm, Stage IIA (but SLNB not done so not sure), Grade 1-2, X/X nodes, ER+/PR+, HER2- (initially borderline, then subsequent FISH test shows negative), oncotype ?, BRCA ?

    She is part of Kaiser in the Bay Area but we have also been exploring non-Kaiser options (we can switch out of Kaiser by January 1). I welcome any feedback you might have on our search/decisions. Thank you!

    At Kaiser Oakland we have seen Dr. Elizabeth Cureton and Dr. Veronica Shim. We also have visited with Dr. Nima Grissom. They all seem excellent (so how do you decide?). The advice we have received has been very consistent so far with respect to the procedure and tests (there was some difference in the case that she would have been HER2+ but that came out negative).

    - Recommended to choose between lumpectomy+radiation or mastectomy most likely without any radiation. The lumpectomy would involve taking out sentinal lymph nodes and there would be NO axillary removal even if nodes turn out positive (tested after the surgery). They state recent studies show no benefit to extra removal given that radiation plus other systemic treatments will take care of things. In contrast the mastectomy might involve axillary lymph node removal given positive sentinal nodes. The reason given for the difference is that there will likely be no radiation given here. We have been told that the outcome is the same for the lumpectomy + radiation vs. the mastectomy. My sister is leaning towards the lumpectomy + radiation.

    - Recommended to not do a BRCA test because family history makes it unlikely that this is genetic (no history of breast cancer in family). We asked if we could do one anyway and they are hesitant to order it because of ambiguous results or something like that.

    - Recommended not to do a PET scan right now. The reason given is that likelihood of distant metastases is very low.

    - Recommended not to do an MRI scan right now. One reason given is that there may be false positives that will delay the procedure and current ultrasounds don't show any other issue.

    - Doing a bone scan tomorrow because she has been suffering from lower back pain and they arranged it for her peace of mind.

    - We are trying to get in to see Dr. Esserman at UCSF but have been waiting a while to hear back from them.

    - We are looking for oncologist recommendations and are trying to understand what subsequent hormonal therapy/chemotherapy options will be worthwhile to look into.

    Any feedback on our care team options (UCSF vs. Grissom at CPMC vs. Kaiser Oakland) and the recommendations above would be awesome.

    Thanks,

    Eugene





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  • keemo26
    keemo26 Member Posts: 29
    edited December 2014

    You can e-mail me directly if you want to talk offline - kim@sunflowerwellness.org

    I like Leah Kelly at Marin Cancer. She would actually be my top choice followed by Nima and Laura Esserman. You don't have to choose a surgeon from the same place you seek treatment. Marin has such an incredibly high rate of bc that you can be pretty sure you are getting the latest in terms of treatment options. I had Leah Kelly and Bobbie Head was my onc. Check our Marin Cancer Care and Garrett Smith at Smith Integrative in SF. :)

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited December 2014

    in a bit of a rush now, but I have received excellent tx at Kaier Santa Clara. I had second opinions at Stanford. Will post more later or pm me with q's.

    Caryn

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  • WinningSoFar
    WinningSoFar Member Posts: 951
    edited December 2014

    Here's an idea--see Jon Grief a breast surgeon who used to be with Kaiser and now has his own practice with Lisa Bailey. They're in Oakland, near Kaiser and across the street from Summit. At least he can shed some light on why Kaiser is discouraging genetic testing and other tests. Plus, he's a great surgeon.

    Clip from bio: Dr. Greif joined Bay Area Breast Surgeons in 2006 after more than 20 years as attending surgeon at Kaiser Permanente Medical Center in San Diego, California, where he chaired the Cancer Committee and Breast and General Tumor Boards. He was clinical faculty in the Department of Surgery at the University of California, San Diego, where he is Associate Clinical Professor of Surgery

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited December 2014

    Quick comment, ask to have a consult with the genetic counselor.. They can assess your history and explain why genetic testing is useful or not for you.

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  • Nancy2581
    Nancy2581 Member Posts: 1,234
    edited December 2014

    I didn't have genetic testing. I am at Scripps. My mother and sister have never had breast cancer so no genetic testing. I didn't have an mri either. I did ask about that - my onc said my breasts are not that dense, but if the radiologist had recommended it she would have ordered. She also said it gives a lot of false positives ending up in unnecessary biopsies. Not sure how I feel about that. I did have a pet/ct scan and a bone scan.

    Nancy

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  • Cowgirl13
    Cowgirl13 Member Posts: 1,936
    edited December 2014

    I live in San Francisco and would be happy to talk to your sister. I can't recommend Nima Grissom enough (breast surgeon). I was absolutely terrified as my mother had died of breast cancer. I took my sister to my appointment with her and will never forget the feeling I had walking out of her office---I said to my sister 'I feel like I can do this'. It was amazing. In addition to having a wonderful personality, she is an excellent surgeon.

    All my treatment was received at CPMC--California Pacific Medical Center. Everyone was terrific.

    Liz

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