Dr support of second opinions?

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edwsmom
edwsmom Member Posts: 346
edited September 2015 in Managing Side Effects of Breast Cancer and Its Treatment

Hi all,

The BC that I have is unusual - occult, meaning they can't find a primary tumor, and I'm triple positive. As a result, I wanted to get a second opinion to ensure that the treatment I'm about to start is the right one.

I asked my oncologist about getting a second opinion. She was very encouraging and positive, she even told me she would refer me to someone at a hospital I mentioned for the second opinion. I waited a few days and didn't hear back. I asked the nurse and she checked with the doctor who had no recollection of the conversation or saying she would refer me (I tape my dr. appointment meetings so I have it on tape). I pushed and later that day the nurse emailed me the name of a doctor and contact information.

I called that doctor's office and spoke with someone there who emailed me forms I needed to fill out. The instructions said I should send them to my current oncologist (the forms request my files). I filled them out and emailed them to the nurse. She told me to send them to the Dr's assistant who handles things like that. I called the assistant who was very short with me. She said she had never heard of such a thing (my doctor needing to do anything to facilitate a second opinion) and she was very kurt. She told me to fax them to her. I asked if I could email them since I have a scanner but not a fax (I have to get one apparently). She made a huge fuss about not giving her email address out to patients. Eventually she relented when I told her I would lose her address after I send the forms.

Anyway - that was 2 days ago and I've heard nothing back since. Since I have zero confidence that I'm going to get any support in this from my current hospital, I took all my own files (I previously got all my films and reports from the hospital film library) and packaged them up with the forms and couriered them to the second doctor's office. The second doctor's assistant said she would confirm that they received them and let me know next steps for an appointment.

I guess I'm very frustrated and disappointed with the runaround I got with my current oncologist's office. I've never done this before and I'm just stabbing around in the dark trying to figure out how to get everything taken care of before I start chemo in 2 weeks.

Is this typical or unusual? Anyone else get a second opinion on their situation before starting treatment?

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  • dlb823
    dlb823 Member Posts: 9,430
    edited September 2015

    Not typical to have your current onc involved. Normally, a second opinion onc will need all of your test results, but if you've kept copies of those, you can provide copies and there's no need to involve your current onc's office. If you haven't already asked for copies of your biopsy, etc., then it's probably time to round those up for your own files and future needs, such as this one.

    That said, it sounds like the assistant you talked to has a real attitude problem.

    You are absolutely doing the right thing in getting a second opinion, especially with an occult tumor. That's what I was told I had after my initial lumpectomy, and when I went for a second opinion, they found several lesions my first surgeon had totally missed (detailed on my bio page). Not saying that's your situation, but absolutely get a second opinion, preferably at an NCI-designated cancer center listed here. http://www.cancer.gov/research/nci-role/cancer-cen... If you're not close enough to one of these to make the drive, then call the nearest one and see if they can recommend someone locally. Often they will know a doc who trained and/or practiced with them (so has their high level of smarts & thoroughness), but has since moved on.

    Good luck, and please keep us posted! (((Hugs))) Deanna


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  • edwsmom
    edwsmom Member Posts: 346
    edited September 2015

    thanks very much. I'm glad that I just did it myself.

    I was told that if my current doctor is involved the second opinion doc will send their recommendations to the initial doctor.

    I'm fortunate to live in a city that has more than one NCi cancer center. Both the place I started and the place I'm seeking an opinion from are NCI centers.

    Now I guess I just wait to hear back from the second opinion doctor.....

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  • vlnrph
    vlnrph Member Posts: 1,632
    edited September 2015

    We do need to be our own advocates in situations like this. Good for you in collecting your records and forwarding them on. I fired my community hospital when two different radiologists each gave me misleading information. Some clinics provide a nurse navigator to help people figure out how to jump through all these hoops...

    It is curious that a primary tumor cannot be identified. Did you have an MRI or ultrasound that showed multiple lesions? I don't understand how you could be staged or biopsied without something to measure/sample. Looks like they've got a plan for you to receive neoadjuvant chemotherapy starting soon so it's probably good to obtain an accurate "baseline" for comparison later in order to determine treatment efficacy.

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  • edwsmom
    edwsmom Member Posts: 346
    edited September 2015

    Cancer was found in a single lymph node on the left side (identified in a mammogram then biopsied). Since then, I've had 2 MRI's and a PET/CT. All saw nothing else.

    Apparently my situation is rare, but well documented.

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  • vlnrph
    vlnrph Member Posts: 1,632
    edited September 2015

    That lymph node was doing a good job by catching those nasty cells! Lobular cancers are difficult to detect given their growth pattern, as you probably know, but most of us usually get some kind of confirmation via MRI especially with dense tissue. I have also read that ILC is often ER/PR + but HER2 negative. Did you also send your slides for a second look by a different pathologist?

    I am hoping that the other clinic reviews things promptly enough to call this afternoon or tomorrow morning so you don't have to wait through a long holiday weekend...

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