Questions about research and first appointments

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Hybrids
Hybrids Member Posts: 42
edited April 2018 in Just Diagnosed

Hi,

I was diagnosed last Friday with IDC. Mammo & Ultrasound showed a 3.7cm mass & two thickened lymph nodes, but biopsy came back with no cancer in the node they biopsied but showed "Fragments of Benign reactive lymph node". It also said "lymph-vascular invasion not identified". Yay for that bit of good news. My Dr. sent a message today to say it was estrogen & HER-2 positive & to confirm there was no cancer found in the lymph node. She didn't mention the stage or grade but the first pathology report showed grade 3 but no stage. The report also showed I have IDC & DCIS in SITU (both grade 3). She ran through the likely options they will give me (removal of cancer, adjuvant chemo afterwards, a year of maintenance IV therapy and 5 yrs of tamoxifen. She's just been through breast cancer herself.

I have my first Surgeon appt tomorrow (Wed). The surgeon is a general surgeon that my Dr. referred me too. She was trying to refer me to her surgeon, but the clinic set up the appointment with a different surgeon because he was the first available. I self-referred to a cancer care center that is partnered with a NCI designated cancer center, so I have an appointment with an oncologist there on Thursday. That way I have two opinions to compare to give me confidence in the treatment plan and if I go with the cancer center, it gives me a Nurse Navigator, and more options (nutrition program if wanted, etc).

Assuming I like both and they both give similar treatment plans, I would most likely pick the cancer center since it likely comes with more support as opposed to a Dr who cuts and a Dr who gives meds/chemo, etc, and the possibility of getting frequent advice to call the other Dr. when I have questions or concerns (I go through that with my Endocronologist Nurse-I can't handle going through that with cancer). So, I'm not sure how to handle it since one is a Surgeon and one is an Oncologist. If the Surgeon wants to move forward by referring me to an Oncologist or ordering more tests, do I go ahead and do that, (so have two oncologists, & two surgeon's opinions-they are from different providers & are associated with different hospitals) or should I tell him I'd like to wait until after my appointment on Thursday with the cancer center to do anything and then make a decision after that appointment on which way to go? Since one is an oncologist & one is a surgeon, it's going to be hard to compare because it's not really a second opinion about the same thing. When I called the cancer center, I told them the situation & informed them I had a Surgeon appt, but they said the Nurse Navigator will be going over my records (they called and got them) to decide who I should see first and apparently it was the oncologist because that's who they scheduled me with. The Nurse Navigator is suppose to call me before the appointment, but I haven't heard yet so haven't had the chance to ask.

Also, are there any books anyone would recommend or other places or things of knowledge that would be good?

Thank you in advance for any advice and I wish everyone well with their own diagnosises.


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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited April 2018

    I’d say just see two surgeons and two medical oncologists in whatever order you can. Gather information and see if you like these doctors. You don't have to commit until you have done this, and why delay if you can get in. I think you should definitely see medical oncologists before having surgery. For one thing, they may recommend chemo first because of the Her2+ and grade 3. Maybe this is why the nurse scheduled the onc first for you. The cancer center probably has a tumor boar board, with a panel of doctors who meet to form your treatment plan: Medical oncologist , surgeon, pathologist ,radiation oncologist, maybe social worker. These people will be able to coordinate and talk with each other easily, which should be good for you. The maintenance year is likely the targeted therapy Herceptin. What kind of books are you looking for?

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  • Hybrids
    Hybrids Member Posts: 42
    edited April 2018

    thank you for the info. Ill move corward with two oncos amd two surgeons through the creation of the treatment plan.


    For books, I’m looking for something that gives advice and tips for the whole process, i.e. tips for everything from talking to family about your diagnosis to what things help with nausea to symptoms to look out for and how to help avoid or lessen some symptoms (chemo symptoms or things thst pop up after surgery, etc). Just knowledge in general. I do better and stress less if if I’m well prepared, so just something to help with that.
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  • Falconer
    Falconer Member Posts: 1,192
    edited April 2018

    Hybrids, I'm sorry you find yourself here. But honestly this site is the best for what you're looking for. I did buy one book, that I read and then donated to my library book fair. It was Susun Weed's Breast Health. She's an herbalist in my area, so I was looking for complementary practices along w adjuvant therapy.

    Shetland is right about the tumor boards. Ask about them.

    But stay w bc.org! There is so much helpful info here. Good luck to you.

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