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Topic: Beyond frustrated with surgeon & overall experience - Need Recs!

Forum: High Risk for Breast Cancer — Due to family history, genetics, or other factors.

Posted on: Jan 28, 2020 12:11PM - edited Jan 28, 2020 12:53PM by SarBar22

SarBar22 wrote:

Happy Tuesday everyone! To make a looong story short, I've been dealing with a couple different benign but high-risk things that popped up in my left breast over the last 18 months (papillomas, ADH, radial scar). Had a lumpectomy last February and now am facing possibly another one after a biopsy 2 weeks ago, but I'm contemplating seeking a second opinion at another hospital because I have been intensely frustrated with the way I've been treated by the surgeon and system. Here are just a few of the things that have happened that make me question staying with them:

2019

  • I was never called with the results of my first biopsy last year, I had to call and ask for them after they'd actually arrived 2 days before
  • When I went in for my original post-op appt with the surgeon, I told her I had been having neck pain near my collarbone for a couple months and asked if this was normal. She touched my neck for about 3 seconds and only said "I think you just need a massage." This pain has been worsening for the last year and shooting down across my chest to my left breast and underarm, so I wish she would've taken me more seriously at the time since clearly it's not normal
  • There was no follow-up re: a long-term plan for the ADH or the fact that I'm 31 with a huge family history and a lot of stuff going on in my breast. Just said "we'll see you in 6 months!". I've read that a lot of women are offered a more intensive follow-up or at least a conversation about potential options. At my follow-up I only had the ultrasound, never met with her or talked directly to her

2020

  • For this last biopsy I was rescheduled TWICE, making the wait almost 3 weeks from the original imaging appt
  • In the original report, it said the mass had vascularity, but doing the biopsy, the doctor asked out loud if it had vascularity and the nurse said no....so I'm slightly worried they biopsied the wrong spot, is this possible?
  • I was never called with the results again, and after a week I called to get them. The nurse said, "Oh, your surgical results are the same as your biopsy." And I told her I'd never gotten a call about the biopsy and I was confused. She said, "Yeah, the biopsy you had on 1/11." I told her politely my biopsy had been on the 17th, and she said, "Oh....right. These are from last year. Well the results from this year were the same, and you can ask more questions to the surgeon when you see her."
  • I just received a call that my appointment with the surgeon for tomorrow was just rescheduled when I've already moved meetings around and taken off a half day from work.

    Anyway, I'm sort of at my wits end and feel like I'm not being actually cared for or taken seriously. I understand (and am grateful for) that I do not have cancer, but being treated like I don't matter or am not as important is not okay, especially when this is still unnerving for me and I want to feel like I'm getting taken care of. Has anyone had experiences like this - like is this just normal healthcare and I need to suck it up and get used to it or should I say something to the patient experience department??

    I'm in New York City and am definitely going to be looking for another doctor if not a completely different hospital (I currently have most of my doctors at NYU Langone). If you're from the area, please let me know if you have any recommendations, I would really appreciate it!!

    ADH 2/2019 Surgery 2/7/2019 Lumpectomy: Left
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    Jan 28, 2020 12:33PM - edited Jan 31, 2020 10:00AM by WC3

    Oh yes I would change doctors! I understand that sometimes patients and imaging have to be rescheduled to fit in those in more dire situations but it sounds like that office does not have their stuff together! I would get copies of all of the reports and haul them off to another high risk clinic and discuss all concerns with them.

    Dx 2018, IDC, Left, 3cm, Grade 3, ER+/PR+, HER2+ (FISH) Chemotherapy 5/31/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 11/14/2018 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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    Jan 28, 2020 01:52PM - edited Jan 28, 2020 01:54PM by LiveLoveLaugh2020

    That's frustrating. Sadly that's how health care is these days in most places. If you're in NY, look up MSK.

    DCIS Dx @ 34 - Bil NSM 09/2019 - Bil implant exchange with fat grafting 01/2020
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    Jan 28, 2020 02:26PM momoschki wrote:

    Hello from a fellow Brooklynite. I’ve been followed at NYU for 9 years now and have generally had a good experience, so I’m actually surprised that your experience has been so negative.

    I don’t know who your breast surgeon is, but you may want to investigate Freya Schnabel. She has always been very responsive. I also have an ADH dx and see her every six months, along with alternating mammograms and US. With a dx of atypia, it’s standard to be followed more closely. I also take Evista.

    Feel free to PM me if you’ve got questions

    ADH dx 3/11 Surgery 3/10/2011 Lumpectomy: Left
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    Jan 28, 2020 05:32PM Betrayal wrote:

    I would run as fast as I could from this uncaring situation. If you have concerns about this now, just think how they will multiply in the future. Your health care is paramount and you need to find an office that gives a damn, a physician who also gives a damn and office staff who can read!

    I was so overwhelmed at the beginning of my journey that I overlooked key elements in the care I was receiving (read shoiuld have received and didn't) and have lived to regret it. So don't "settle". Get your records and find someone who gives a damn. They are out there and you deserve better.

    Dx 1/7/2016, DCIS/ILC/IDC, Left, 1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 1/31/2016 Lumpectomy: Left Surgery 1/31/2016 Lymph node removal: Sentinel Surgery 3/3/2016 Lumpectomy: Left Radiation Therapy 3/30/2016 Whole-breast: Breast Hormonal Therapy 6/24/2016 Arimidex (anastrozole) Hormonal Therapy 5/18/2017 Femara (letrozole)
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    Jan 28, 2020 06:06PM Bhmomma wrote:

    MSK has a high risk clinic, which with your history of ADH you may qualify for. I have ALH and significant family history. I’m followed twice yearly with alternating MRI and mammogram every 6 months. I also see the MD at Sloan twice a year and decided to take preventive Tamoxifen as well.I am called promptly with reports and they are also available on the portal.

    ALH, radial scar Hormonal Therapy 11/19/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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    Feb 1, 2020 12:11PM SarBar22 wrote:

    Thank you ladies for all of your responses :)

    I took your advice and requested all of my records from NYU Langone and have made an appointment at Mount Sinai’s high-risk clinic, so hopefully I’ll be able to get an MRI and have conversations about an actual plan for the next few years. Crossing my fingers they have a better patient-focused environment and I find a doctor who actually listens to me!

    ADH 2/2019 Surgery 2/7/2019 Lumpectomy: Left

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