Appt with surgeon Tuesday, no info

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Jiffs
Jiffs Member Posts: 21
edited September 2018 in Just Diagnosed

I was told 2 weeks ago that my biopsy was found to be positive. And that's all they told me. I have an appointment with a general surgeon on Tuesday to talk about getting it removed and the pathology.


Everyone here seems to already know what they have and have actual breast surgeons! I feel like I'm way in the dark, and not sure I'm even going in the right direction!


All I got told was "you have cancer". I don't even know if I'm asking anything, I just don't know what to think.

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  • Moderators
    Moderators Member Posts: 25,912
    edited September 2018

    Hi Jiffs-

    We want to welcome you to BCO, although we're so sorry you find yourself here. We know how hard it can be to hear those words! You have the right to request a copy of your pathology report from your biopsy, and we'd be more than happy to help you decipher it here.

    It may be that the surgeon you meet with on Tuesday will refer you to a breast surgeon, as well. When you discuss pathology, definitely request a copy of your report, or write everything down that's discussed during your appointment. Surgical and treatment options will vary based on your specific diagnosis, so it's important to have all the info available to you!

    Let us know how it goes on Tuesday, we'll help you through this!

    The Mods

  • Dani444
    Dani444 Member Posts: 522
    edited September 2018

    Jiffs, sorry you have gotten this news. It is so overwhelming, I was recently diagnosed and it is still hard to take in. I was told by the breast center that did my biopsy that "cancer cells were present". The nurse navigator had already scheduled me with a breast surgeon oncologist, I have found the nurse navigators to be an amazing part of my care team. I was able to get my pathology report through my patient portal with my doctors office, and my breast surgeon gave me a copy at my first appointment. When you go to the general surgeon ask for a copy of the pathology report and make sure the doctor explains it to you. Could you research breast surgeons in your area and get a referral? Personally I would at least want to consult with a breast surgeon. Lots of patients get second opinions. You need to feel comfortable with the care you are given.

    Things I wanted to know from my initial visit were the details of my pathology report, such as ER and PR status and HER2 status. The size of my tumor according to the imaging, and of course what were my treatment options. I also left the visit with a list of other doctors I needed to see such as radiation oncologist, medical oncologist, plastic surgeon, and genetics counselor. I took the advice I found on this site to make a binder to keep my schedule in along with my insurance, billing, medical records, and also a mileage tracker for tax purposes. I can tell you it does get a bit better after getting more of a picture of what are are dealing with. Don't hesitate to reach out here for questions. This forum has definitely helped me keep my sanity (somewhat:)

  • Jiffs
    Jiffs Member Posts: 21
    edited September 2018

    Thank you for the replies! I just added a few more questions to my list to bring with me!


  • Luckynumber47
    Luckynumber47 Member Posts: 397
    edited September 2018

    Many of us here feel that we were able to get much better care by seeing a breast surgeon instead of a general surgeon. I know I wanted a surgeon that did nothing else but focus on breast cancer issues all day, every day and I was happy to drive 2 hours to get that level of care. My dr knew what info I needed to know before I even asked the questions. My oncologist is also a breast specialist and is very up to date with all the new studies and treatment recommendations coming out. I would worry that an "old school" dr would over prescribe chemo when the newest studies show it is not needed for many of the early stage breast cancers. Of course, all that will depend on what they already know from your pathology and what they find during surgery.

    I would highly recommend that you add a breast surgeon to your care team, even if it's only for a second opinion. And probably the most important question is about your lymph nodes. Do any of them look positive in the tests you've had. How many nodes is the dr planning on removing during surgery. Your dr should answer that they're doing a sentinel node biospy during surgery and will remove only the ones that absorb the blue dye. (Unless, of course you have positive nodes)

    Another thing I feel strongly about is a presurgery MRI. You want to be sure there is no more cancer hiding in either breast and the MRI is the best tool for that. My MRI found DCIS lurking in the other breast that had not shown up on the mammogram

    Wishing you the best of luck with your appointment. Take someone with you to write everything down. The dr is firing so much info at you it's hard to remember it all. My first appt with my breast surgeon was a 2 hour "teaching" appt. There's a lot to learn in this cancer journey and a lot of decisions to make.

    Sending hugs! Let us know what all the dr says and we can help answer any questions you might still have

    Lucky

  • Jiffs
    Jiffs Member Posts: 21
    edited September 2018

    luckynumber47, thank you! I'll definitely have to ask about the breast surgeon. I'm not sure how far away I'd have to go to find one. And the mri seems like a really good thing to add, thanks!

  • WinningSoFar
    WinningSoFar Member Posts: 951
    edited September 2018

    Dear Jiffs,

    This is the time when you have the most shock and the least information. Over time you will learn more and more about your cancer and your shock will start to go away. I agree with everyone above about your "big picture" concerns:

    Breast surgeon appointment

    Copies of all tests

    Staging breast MRI

    Oncologist appointment

    There will be other concerns, but they can wait for a while. If you have to travel for these appointments, you can insist that they are back to back on the same day or two.

    I promise you this: you will feel better someday and you will be happy again. THIS is the worst time.



  • Moderators
    Moderators Member Posts: 25,912
    edited September 2018

    Hi Jiffs,

    We're just checking in to see how your appointment went yesterday. Please come back and update us!

    --The Mods

  • Jiffs
    Jiffs Member Posts: 21
    edited September 2018

    **update**


    I had my appointment yesterday. We have scheduled the lumpectomy for September 27. He said that he's pretty impressed that I found the lump, it's pretty subtle, but 2cm. Grade 2, but no other pathology so far. He said that due to my age they will likely be recommending chemo, regardless of what the rest of the tests come back saying. Scary, but I'm ok. I talked to one of my crochet groups and a bunch of wonderful strangers are going to make me some hats!!

    Just trying to keep calm for now and not think past just getting through the surgery!

  • Luckynumber47
    Luckynumber47 Member Posts: 397
    edited September 2018

    While you may very well end up needing chemo, please, please, do not rely on a general surgeon for this advice. Run, do not walk, to a medical oncologist who specializes in breast cancer. If you are ER/PR positive insist on an Oncotype or a Mammaprint test. These tests will tell you if the benefits of chemo outweigh the risks. If you are ER/PR positive you may be surprised how effective endocrine therapy can be for preventing cancer's spread.

    If you end up being ER/PR negative and/or Her2 positive you'll want the experience of a specialist to ensure you are getting the most appropriate chemo for your particular tumor. With all the recent advances in breast cancer care you owe it to yourself to find the best dr to recommend and provide that care.

    Wishing you the best!

    Lucky

  • Britspeech
    Britspeech Member Posts: 23
    edited September 2018

    Hello. This is my first post. I’ve been lurking since my dx 8/3. I too have my surgery 9/27. During my biopsy I received a large hematoma so my surgeon wanted to give the hematoma time to subside . So far it appears to be 7 mm tumor idc/dcis stage 1a. Grade 2. No thing else appeared on MRI. No node involvement . The dark side of me worries that it’s spread since dx. Unlikely, I know. Looking forward to getting the full picture after the lumpectomy and sentinel removal.

    Thanks

    Sharon


  • edwards750
    edwards750 Member Posts: 3,761
    edited September 2018

    Sharon - that’s a normal fear. Once you are DX you really don’t know yet how aggressive it is. Your medical team has a pretty good idea but the Path report post surgery will confirm what they may already know.

    Once you have your surgery done and a treatment plan is in place the process will/should move quickly.

    Good luck!

    Diane

  • Jiffs
    Jiffs Member Posts: 21
    edited September 2018

    I will be seeing the oncologist after I get the pathology reports. Right now all I have to go off is the surgeon and my nurse practitioner, and whatever they've talked to the tumour board about.



  • sandcastle
    sandcastle Member Posts: 587
    edited September 2018

    Luckynumber…..I myself went to a Well Known Breast Surgeon for my FIRST appointment...the end of that Story was SHE messed up BIG TIME....finally moved on to a General Surgeon and in December I will be 9 Years....Liz

  • Luckynumber47
    Luckynumber47 Member Posts: 397
    edited September 2018

    Liz, I'm so sorry your dr messed up. It's a shame when we can't trust the drs we have chosen for our care. I know my plastic surgeon (recommended by my breast surgeon) did a lousy job, which I have chosen to just live with since I don't want any more surgeries. Glad you found a good dr and continue to do well.

    What concerned me about Jiffs post was that the dr seemed to be giving her "old school" advice without benefit of even basic pathology. I was worried he wasn't up on the most current studies and Jiffs doesn't yet have enough experience to know the difference. Oh, if we only had a year to study this cancer thing before we had to make any decisions. (Of course, the wait would have driven me stark raving mad)

  • Jiffs
    Jiffs Member Posts: 21
    edited September 2018

    He's a young Dr and is part of a weekly tumour board, I would think he is up to date with stuff, but I can see where you're coming from for sure. I know that I'm ready to do whatever necessary to get this done. I have paid time off at work for as long as I need it, so at least there's no stress there. And I'll find out more when I finally do get to see the oncologist. I know I'm getting mentally prepared for whatever gets thrown at me my.

  • Luckynumber47
    Luckynumber47 Member Posts: 397
    edited September 2018

    Glad to hear you've got a tumor board as part of your team.

    You sound like you've got a really good attitude and that goes a long way to getting you through this. I hope your pathology comes back with all encouraging info.

    Sending hugs, Lucky

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