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Do I need to find a breast surgeon?

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I've been waiting a few weeks to have a biopsy done for a .7mm spiculated mass. It is scheduled for Thurs but giiven the likelihood of a future week(s) long wait for the results, I'm wondering if I should try to get an appointment with a breast surgeon, or if I am jumping the gun. I'm concerned about the delays, especially I'm about a month and a half out from my screening mammogram. Has anyone been told they must have their results before scheduling additional consultations? Thank you.

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  • exbrnxgrl
    exbrnxgrl Member Posts: 4,861
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    tigglewinkle,

    I’m sorry you find yourself in this position. Although some aspects of the biopsy testing may take a bit longer, waiting weeks for results would be unusual. I also would not worry about the time that has elapsed, as breast cancer is not considered an emergency. Yes, of course you want to keep moving forward but even an aggressive bc is relatively slow going. As to your last question, I honestly don’t know if surgeons make appointments before you even know if you have bc.
    All of the initial waiting and assessments are a very stressful time. Please be assured that your wait times sound typical and there’s no reason for concern and, if I’m reading this correctly, you haven’t even had a confirmation of bc and perhaps you won’t!

  • maggiehopley
    maggiehopley Member Posts: 112
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    I don't think a surgeon will let you make an appointment without a diagnosis. Their schedules would fill up with patients whose biopsies ultimately came back benign. Hopefully, your hospital system (or equivalent) will have a nurse navigator for you. When my biopsies came back IDC, I got a call from a nurse navigator. She met with my husband and I the very next day, and she already had an appointment lined up with the breast surgeon (2 days later), and an appointment for an MRI. I met the surgeon and liked him, but she would have made me a different appointment if I hadn't. Two days after the surgical appointment she called to say I was Her2 positive and had already scheduled me with a medical oncologist, I think about 10 days later. After my MO appointment, I was given appointments for CT/bone scan and port placement. I could call her any time with any questions, as well.

    I didn't have to do anything but show up, which I really appreciated because my head was spinning. I know not everyone has access to a nurse navigator, but if that is offered to you, take advantage of it.

    Several weeks (or even months, sometimes) for an appointment is not uncommon and not anything to worry about. A few weeks wait is actually not a delay, even though it feels like it. Breast cancer is not a medical emergency. The waiting is hell, but you will be okay. My results and appointments were much quicker than most people here, but I think the nurse navigator system is why they are able to schedule patients so promptly.

  • tigglewinkle
    tigglewinkle Member Posts: 20
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    Thank you for your helpful responses. I’m new to the forum and not sure exactly how to reply. I guess I’m worried because I’m planning to leave the country in June and if I need surgery I will either need to reschedule or have surgery upon my return which puts it into July. I’ve read that BC can double in size every 100 days or so? I’m concerned that if I wait it may be over 1cm which would make chemotherapy more likely. I’m sure I sound neurotic, but the uncertainty is driving me mad.

  • tigglewinkle
    tigglewinkle Member Posts: 20
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    Adding that compounding my anxiety is the fact that my doctor’s office is falling apart so I need a new one but maybe they don’t matter. Not sure if the nurse navigator is Canada or in US but pretty sure I don’t have access to someone like that. Sounds very helpful.

  • needs.a.nap
    needs.a.nap Member Posts: 188
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    Hello @tigglewinkle. You don’t sound neurotic at all. It’s really hard, having a large, looming question mark in front of you. We will try answering any questions you have …

    I’m in the US and was also assigned a nurse navigator. I traveled to the university hospital that has a breast care center and they provided the nurse navigator. Hopefully you’ll never need one!

    When I had my biopsy I remember asking about scheduling the breast surgeon at that time (feeling panicky about getting an appointment within a reasonable timeframe) but I was told the doctors would need the biopsy results first to review my case and then they would schedule me. It was all so nerve-wracking, not being able to schedule it all in advance. But it all came together fairly quickly once I got the biopsy results. It really helped me reading on this forum that breast cancer wasn’t a medical emergency, as others have said. It helped quell the panic.

    I got my preliminary results (saying yes it was cancer and what type, grade and estimated size) two days after my biopsy and was scheduled to see a breast surgeon and oncologist 10 days later. But then I didn’t have surgery until about 45 days after that. From my first mammogram to surgery was 70 days and my tumor was estimated at 1.6cm initially and ended up being 1.5cm I think, or maybe 1.6cm, I don’t remember … just that it hadn’t really grown at all in that duration. The pathology from the biopsy, if it’s cancer, will tell them a lot about the aggressiveness of the tumor.

    It would be great if your biopsy is benign and none of this ever comes to pass!!!

  • tigglewinkle
    tigglewinkle Member Posts: 20
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    @needs.a.nap Thank you so much. I feel better knowing there is time if it is cancer. Trying to prepare myself based on things the radiologist said. Sounds like you’ve been through quite a lot. Thanks to you and everyone here for sharing your stories with me. It really helps ease my mind.

  • needs.a.nap
    needs.a.nap Member Posts: 188
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    Hello again @tigglewinkle. I was thinking, what could it hurt to try reaching out to a breast surgeon? Or perhaps start with researching your options for a breast surgeon? Depending on your radiology report and Bi-rads classification, they might “pencil” you in for an appointment … I don’t really know how that works. They might not but no harm done making a phone call. Your Ob/gyn or primary care doctor might even have a recommendation for a breast surgeon.

    You mentioned needing a new primary care doctor. I did too and that added to the anxiety of everything in the beginning, but it ended up being fairly simple and she didn’t end up being much a part of anything. I’m sorry. I can identify with the feeling of needing to get everything in order but not knowing how!

  • maggie15
    maggie15 Member Posts: 953
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    Hi @tigglewinkle , needs.a.nap's suggestion to research breast surgeons is a good one. These surgeons are so busy they will not even pencil you in without a diagnosis recommending surgery but looking into your options is a good idea. I knew I did not want to stay at my small rural hospital (given that they had misdiagnosed my eventually palpable tumor for two and a half years) so I checked out my options in advance and was ready to make the call when I got the diagnosis. You can consider online reviews, location, insurance restrictions and recommendations from anyone you know who has had bc surgery. Hopefully you'll have un-needed information but otherwise you can make the call right away having done your research.

  • tigglewinkle
    tigglewinkle Member Posts: 20
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    Thank you both for thinking of me! I have gathered names from friends and my ob/gyn and started to call around today. I'm in the DC metro area and I'm always shocked at the wait times around here. Some of the docs I was referred to are at Johns Hopkins but are booked through July. When I was on the phone with them, appointments were vanishing in real time. I'm sure I'll find a good surgeon if I need one, and I know I can't book until diagnosed, but it is unnerving. Maybe if the biopsy were at a hospital it might be more seamless, but it is at the radiologist's office.

  • besa
    besa Member Posts: 287
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    To expedite things - If you don't already have them, ask for copies of your reports ( the actual report that is sent to your doctors, not the sometimes watered down "patient report".) Get copies of all radiology reports, pathology reports, lab results, doctors reports etc. You are entitled to these. Keep them in a notebook with dividers. That way when you see a new doctor you can hand them copies and do not need to wait for the reports to be transferred from one facility to another.

  • tigglewinkle
    tigglewinkle Member Posts: 20
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    That is excellent advice. Thank you.

  • besa
    besa Member Posts: 287
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    Just another thought- if you do end up deciding you need to see a breast surgeon possibly consider setting up a 2nd opinion appointment with another breast surgeon at the same time. (Someone unaffiliated with the first opinion, trained at a different place, associated with a different hospital ) A 2nd opinion can offer peace of mind confirming the original path, or sometimes, it changes treatment. Just putting this option on the table.

  • tigglewinkle
    tigglewinkle Member Posts: 20
    edited May 3
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    Thank you besa. I just had my biopsy yesterday. I am a little concerned that the clip migrated from the biopsy site. They indicated where it moved to, apparently, but can it continue to move? If results are benign, I guess it won't matter. I'm assuming they stage the cancer (if it is there) when the biopsy is done? One more weekend and possibly week to wait for the results. I'm prepared but anxious.


    Thanks for your advice and support.

  • besa
    besa Member Posts: 287
    edited May 4
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    It has been quite a while since i was diagnosed and some things have changed so hopefully someone else will chime in - but my understanding is that if surgery is required the final staging is done after surgery - at that point they can determine exact size of tumor, lymph node status, have more info about pathology, etc.

    At the time of biopsy they only have an estimate of tumor size. Biopsy provides lots of info - Is this breast cancer? If yes, then what type or types? Lab tests of biopsy tissue (if cancer) can give hormone receptor status, how fast the cells are growing, etc.

    Biopsy just looks at a small sample of tissue. If they determine surgery is necessary they can examine all the tissue that is removed and lean more.

    Breastcancer.org has a section on staging. I tried to provide a link below.

    I don't have info about about clips migrating. Hopefully someone else knows more about this.

    https://www.breastcancer.org/pathology-report/breast-cancer-stages

  • tigglewinkle
    tigglewinkle Member Posts: 20
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    @besa Thank you for this. I tried to ask some questions before the biopsy about exactly what you referenced, but the doctor seemed a bit rushed and dismissive. I’m a tough old bird so it didn’t really bother me but I never got an answer! So I really appreciate your response.