oncology - a whole new world

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PatsyKB
PatsyKB Member Posts: 272
edited April 2018 in Just Diagnosed

Just diagnosed on Tuesday (4/10) with IDC, HR+ 99%, PR 0%. Awaiting results re: HER2 from FISH. I've posted on a couple of other forums (IDC for instance) but I've got a newbie question that's more generalized. Actually I'm not sure WHAT my question is. I'm meeting with a breast surgeon at a breast cancer center in a week and a half I have a patient navigator at the breast screening center where I had my biopsy an MRI done. I don't have an oncologist referral at this point and I'm not sure at what point that happens or where I should be getting that referral (or those referrals). I live 2 hours from Phoenix and will likely continue to seek treatment for this cancer down there as the care is better and there's a wide variety of doctors to select from. That makes it overwhelming, too, since I know doodly-squat about this stuff.

Do I want a medical oncologist? Or a BREAST medical oncologist?

A radiation oncologist? Or a BREAST radiation oncologist?

A surgical oncologist? Or a BREAST surgical oncologist?

Each facility has its thing, so it looks like I'll have another center or hospital where I'll have an oncologist, right? I do know that once my doctor(s) have determined treatment, some can be administered up in my small town here in N. Arizona. But I want my center of care to be where there is the most quality and expertise and that's in Phoenix.

Yikes!

I don't want to throw caution to the winds and just blindly trust the first doc I see - my surgeon in a week and a half. Then again, I am not qualified to micromanage, nor do I want to.

Any guidance? Wisdom?

Trying not to overthink.

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  • Ingerp
    Ingerp Member Posts: 2,624
    edited April 2018

    Typically your breast surgeon is the starting point. He/she can refer you to a medical oncologist and radiation oncologist. I’m getting all treatment through the same hospital. There are no ROs here who only do breasts, but that and prostrate are the bulk of their patients. My MO does a lot of BC but not only BC. If you trust your BS, I’d solicit his/her opinion on the rest of your medical team.

    And this might just be me, but I’m quite certain my treatment/outcome will be the same regardless of who my MDs are, so I go with people I think I’ll get along with personally.

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  • PatsyKB
    PatsyKB Member Posts: 272
    edited April 2018

    Thank you, Ingerp. Right now I think we'll wait to meet the BS and see what she says and where we go from there. After all, I know nothing and that will change when we sit down together. I am most reassured by the messages I've received here and elsewhere that assure me that it becomes easier, all things considered, once we have a treatment plan. Clinging to that.

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  • Egads007
    Egads007 Member Posts: 1,603
    edited April 2018

    My experience was the same as Ingerp. First the surgeon (onc breast surgeon) MO and onc Rad. Yes, your surgeon is the starting point. I didn’t see the other two until all tests and staging was complete. Yes, you will feel SO much better once a plan is in place, it’ll give you a renewed sense of control that the waiting and diagnosis ripped away. One step at a time and deep breaths! Keep us posted, we’re here for you!

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  • Meow13
    Meow13 Member Posts: 4,859
    edited April 2018

    Me too. The breast surgeon, after my mastectomy I met with my specialized oncologist. I had the full pathology but not the oncodx before I met my onco doctor. After we received the oncodx test results he discussed treatment. I did not require any radiation.

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  • Meow13
    Meow13 Member Posts: 4,859
    edited April 2018

    Me too. The breast surgeon, after my mastectomy I met with my specialized oncologist. I had the full pathology but not the oncodx before I met my onco doctor. After we received the oncodx test results he discussed treatment. I did not require any radiation.

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  • PatsyKB
    PatsyKB Member Posts: 272
    edited April 2018

    Thanks for the reassurance, Egads007 and Meow13. It's reassuring to know that things are going normally in terms of who to meet with and when. We've been in limbo since the diagnosis on April 10, as we meet the surgeon on the 24th. The week in between was our escape to Grand Staircase-Escalante Natl Monument and I am so grateful that we went. Some amazing high moments emotionally, with a few lows; mostly mind-expanding and body-challenging (in the best way) and beautiful and all in the company of a group of wonderful like-minded fellow travelers and guides.

    While we were away, I got one more bit of pathology news: my cancer is HER2-. So I have 3 pieces of the puzzle: ER+, PR-, HER2-. Onward.

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  • DebAL
    DebAL Member Posts: 877
    edited April 2018

    Hi Patsy, our situation is similar. Do you know your stage? Ask your surgeon to explain the PR negativity. I had several questions about that after I left the office of course. You will feel better having a plan in place and understanding your options. It is very overwhelming at first with a lot of info thrown at you. It does get better so please try to remember that. Sounds like a wonderful trip, good for you. Take care and hugs to you. You will find a great support system here!

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  • PatsyKB
    PatsyKB Member Posts: 272
    edited April 2018

    DebAL - Thanks for the reassurance and the questions. Mine is Grade-1 and my patient navigator said that it is "slow growing." I am learning bit by bit - but don't know much beyond the ER/PR/HER2 status and grade. It was small but I am unclear on exactly what the size is - I believe about 6mm. I will add the question about PR negativity to my growing list of questions. I'm hoping that my husband starts to pick up on the information and vocabulary as we go along...so far, I'm the researcher and he's the support, but pretty soon he'll need to know more so that he can ask questions.

    I'll report back Tuesday night or Wednesday morning.

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  • DebAL
    DebAL Member Posts: 877
    edited April 2018

    Patsy, it sure sounds like leaning toward stage 1. My husband will continue to be the support. I couldn't ask for better. I'm a nurse so he doesn't even try lol. I've learned a lot since January that's for sure. Everyone's cancer is unique and most seemed to be all positive or all negative. I just didn't come across as many women with a negative PR however I don't believe it affected treatment options. Again, it will get less overwhelming with time and you are not alone. Its a lot to take in. I'm heading in for chemo #2 tomorrow. Keep me posted and take care. Love the unicorn quote, no kidding!🦄

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2018

    Hi there, my MO was Deb Lindquist, Arizona Oncology, Sedona. I traveled to Sedona for treatment because I disliked the treatment center and the docs here in Flagstaff (previous history with both when my late husband was treated there).

    Feel free to PM me if you want to talk about my Sedona experience. I did explore getting treatment at MD Anderson in Gilbert, but after the second opinion visit there, found that their treatment plan was identical to Dr. Lindquist's. Sedona was of course closer for me, as you know. I really liked Lindquist and the Sedona center.

    Claire in AZ

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  • PatsyKB
    PatsyKB Member Posts: 272
    edited April 2018

    Ok...we have a plan, or a beginning anyway. Met with my surgeon and liked her and her approach very much. I'm scheduled for lumpectomy on May 7 (and sentinel node biopsy of course). Treatment to be determined after surgery but most likely radiation (either in Phoenix or here in Sedona) and hormone based treatment. But we'll see. I am feeling very positive about things thus far. Onward.

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  • DebAL
    DebAL Member Posts: 877
    edited April 2018

    pasty, glad you have a plan that you are comfortable with. Decisions decisions! One day at a time. Waiting is the hardest part. Have a good day!

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  • FaithsMama
    FaithsMama Member Posts: 126
    edited April 2018

    That’s super! Onward! Best of luck with your surgery.

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