How quickly does your oncologist see you?

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Truffles1968
Truffles1968 Member Posts: 33
edited January 2016 in Diagnosed and Waiting for Test Results

I had my BMX 12/4 with my first oncology appointment 12/23. During that time pathology came back and Her2 was positive unlike biopsy. At first appointment oncologist said he didn't trust the pathology as it was inconsistent with ki67 and ILC so sent it to Mayo. Mayo results came back Her2- haven't seen him to discuss the conflicting pathology reports.

Oncotype results due back 1/21. He can't see me until 2/3. I have been in limbo for more than a month and don't want to delay treatment. He is at Johns Hopkins. is this normal? I have never had a regular appointment, haven't had any scans, never was told what to eat or not eat.

I live 5 hours from Hopkins and went there because I thought I would be getting better treatment. It doesn't seem like it.

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  • etnasgrl
    etnasgrl Member Posts: 650
    edited January 2016

    Yea, that does seem like a long time.

    I was diagnosed on 11/05/15, which was a Thursday. My primary care doctor referred me to MD Anderson that same day. Friday, MD Anderson called me and had an appointment scheduled for Monday, 11/09/15, with a breast surgical oncologist.
    I met with her that Monday and she went over everything with me. The pathology report, a full exam, blood work for genetic testing and put me on the schedule for a lumpectomy and SNB. Oh and she also scheduled an MRI prior to the lumpectomy. The rest of November was spent doing tests....MRI, blood work, meeting with the plastic surgeon, and getting test results back. As soon as results were in, she called me to let me know what they were.
    Lumpectomy and SNB was done on 12/10/15. Five days later was post-op check up where she determined that I was healing well and sent me off to the medical oncologist. First appointment with him was 12/21/15. He did a full exam and sent off for Oncotesting. During that appointment he also went over all my options....chemo, rads, (which was a must since I had the lumpectomy), and Tamoxifen. When the oncotype results came in about 2 weeks later, I went back to see him, to discuss the results. Keep in mind that during the wait, I also met with my radiation oncologist.
    When it was decided that I would not do chemo, he sent me off to the radiation oncologist and scheduled an appointment with me to meet back with him once rads were complete, to get on Tamoxifen.
    I met with my radiation oncologist the same day I met with my medical oncologist about the oncotype results and she scheduled my simulation for three days later.
    My simulation was two days ago, along with a CT. Everything is now done and I start rads on Tuesday.

    From diagnosis to now, things have moved quickly and I've NEVER had to wait very long in between appointments and/or tests.

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  • Oliger45
    Oliger45 Member Posts: 6
    edited January 2016

    I live in a small town, 1 to 2 hours away from treatment. My onc divides her time between two offices, and I had to wait 3 weeks before our initial visit (after my lumpectomy), and 5 weeks, 3 days for my second appointment. In the meantime, the oncotype test was done, and when the two weeks passed, and I heard nothing, I called my onc's office and asked for (and got) the results (I think one could also call Genotech directly). So, that's been my experience. Sometime I didn't mind the wait, and other times, as when I waited for test results, it was difficult (I had to wait 10 days to get my biopsy results, because the surgeon wanted to take a vacation).

    While I was a little in awe of doctors before this BC business, I know see them as human beings--flawed, distracted by personal concerns, thinking about that cold beer waiting for them in the fridge at home--and now I am quicker to make demands, ask for a time frame whenever anything is promised me: referrals; test results; appointments, and ask for copies of all pertinent test reports.

    While my self-advocacy doesn't always get the results I want, I think it helps that I'm known as an active (and not passive) patient, and it makes me feel I'm doing everything I can.

    I hope this is in some way helpful? I wish you well on your journey!

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