MSK's Special Surveillance Breast Program?

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Jellybean646
Jellybean646 Member Posts: 12
edited June 2014 in High Risk for Breast Cancer

I'm at extremely high risk for breast cancer and was diagnosed with fibroadenoma last month (3 palatable lumps in my right breast).  My PCP suggested I see a breast surgeon given my history.  I wanted to see Dr. Van Zee but she only sees patients diagnosed with BC.  I was referred to the Surveillance Progam.

Does anyone have any experience with it?  I don't know what to expect.  I'm interested in long term monitoring but I'm most concerned that my current diagnosis is correct so I'm trying to decide if I should go to the program or find another breast surgeon.

Thanks for your help!

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  • ballet12
    ballet12 Member Posts: 981
    edited January 2013

    Dr. Van Zee is my surgeon, although I have been recently treated for DCIS.  I did refer someone from these boards to her who was diagnosed with Atypical Lobular Hyperplasia (ALH).  Dr. Van Zee did agree to treat that person, and ALH is pre-cancer, and not cancer.  The Special Surveillance Program does sound good to me.  I read the brochure while in the waiting room.  I never did anything like that, even though I was diagnosed 17 years ago with ADH.  I had three excisional biopsies prior to the most recent three lumpectomies, and I never got really good surveillance during all those years.  It can't hurt for you to make an appointment and see how you feel about the program.  Did you actually send your paperwork to Dr. Van Zee's office for review or did you just call them? 

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  • Jellybean646
    Jellybean646 Member Posts: 12
    edited January 2013

    I only spoke to the appointment booker-- I couldn't get past her.  I never thought about sending paperwork.  Good idea.  I'm going to try that.  I'm also going to make an appt with the group to check it out.  I still want to see a surgeon and I always get worried my insurance is going to deny coverage for seeing multiple doctors, hence my question, but it's my health.

    I have an appt with Dr. Freya Schnabel at NYU. Do you know her?  My PCP is part of NYU and recommended her. She's rated highly but I haven't been happy with NYU thus far.  The equipment looks state of the art but neither my PCP nor the two radiologists provided much direction about follow up treatment.  I was only suggested I see a breast surgeon a month after the biopsies because I asked my PCP another question in passing.  And even then she was lackadaisical about it. 

    Do you have the name of someone in Dr. Van Zee's office I can ask for?  It might make it easier for me to get through.  Also, I'm assuming you like Dr. Van Zee if you recommended her to a friend.  What else can you tell me about her?

    THANKS!!!

    L

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  • ballet12
    ballet12 Member Posts: 981
    edited January 2013

    You can ask for Natalie or Leeza.  Look up Dr. Van Zee's direct number on the website.  Truthfully, I had to get in through the appointment bookers as well.  The person asked me to send in all of my records for Dr. Van Zee's office to review them.  I had, by then, accumulated a lot of records, which were submitted.  The booker got back to me that I can schedule an appointment with Dr. Van Zee.  You will need to emphasize to whomever you talk with, exactly what your risk factors are, that make you high risk.  That might help.  I can see; however, why Dr. Van Zee doesn't take patients who don't have a diagnosis, only because she has a large caseload as it is.

    About Dr. Van Zee, she specializes in DCIS, although she actually ran that high-risk clinic a few years back.  She is very thorough in reviewing records.  She explains everything to you in detail and helps you decide treatment options.  She is also very kind.  I sent some snacks to her office as a holiday gift and I just got a personal note back from Dr. Van Zee, herself, thanking me for the snacks.

    Find out how one accesses the surgeons through the Special Surveillance program.  Maybe that is a way for you to see her or one of the other surgeons.  My cousin saw Tari King, and a lot of people like Alexandra Heerdt.  Obviously, I am very happy with Dr. Van Zee.

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  • ballet12
    ballet12 Member Posts: 981
    edited January 2013

    I have heard of Dr. Schnabel, but don't know anything about her.  Good luck.  Let me know how you fare.

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  • Timbuktu
    Timbuktu Member Posts: 1,906
    edited January 2013

    Freya Shnabel is the surgeon who operated on Hoda Kotb.  Hoda looks like she's doing darn good!

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  • momoschki
    momoschki Member Posts: 682
    edited January 2013

    Just want to put in a good word for Dr Schnabel, who is my BS and has been following me for 2 years, since my dx of ADH. I see her on a 6 month rotation: mammo, US, then mammo again and then MRI. I think she is extremely knowledgeable and originally, when I was misdiagnosed as having DCIS (biopsy done at Mt Sinai) she spent over an hour with my husband and me, explaining everything and outlining options. She even arranged a consult with a top notch PS on the same day! Don't know anything about MSK's pgm, but I truly trust Dr Schnabel, who really knows her stuff. Additionally, the nurse she works with, Deirdre, is always available by email when questions pop up and is very responsive. Only downside with NYU, I think, is that it feels somewhat like a factory, but maybe that is inevitable in any large medical facility?

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  • Jellybean646
    Jellybean646 Member Posts: 12
    edited January 2013

    Thanks, Ladies!  I feel better about Dr. Schnabel.  I didn't know that about Hoda.  I didn't even know she was sick.  I guess at Schnabel's and Van Zee's level I should be in excellent care regardless of who I go to.  

    My appt with Schnabel is on the 23rd.  I'll let you know how it goes.  I plan to follow up with Van Zee or the program after that.  I'm having knee surgery this coming Friday (and shoulder surgery in February) for an injury so I don't think I'll be able to get in anywhere before then.  Now I just have to wait and try not to obsessively think about it.

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  • jessica749
    jessica749 Member Posts: 429
    edited January 2013

    A freind of mine saw Dr Schnabel years ago, when she was with Columbia Presbyterian, for a benign condition. As you know, Dr Schnabel is top ranked.  If you have an appt with her, great.  She has years of experience, a reputation which proceeds her, and I should think that she would advise you well.  

    Personally, I am partial to MSKCC and cannot recommend Dr. Van Zee enough. But if you need bc to get in, so be it.  

    Also, I was in the MSKCC surveillance program. Dr. Debra Mangino runs it. She, along with Dr VZ, saved my life.  If you can get in it, and I'm not quite sure how it works from the outside, by all means do go.  I think you have to be a high risk for bc though. For example, you need a condition such as BRCA, or ADH, or something. Read about it, they list the conditions pretty clearly. I'm not sure that having a fibroadenoma gets you in or qualifies you as a high risk person.  You do not say (unless I missed it) why you are at 'extremely high' risk.  

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  • Jellybean646
    Jellybean646 Member Posts: 12
    edited January 2013

    Thanks, Jessica749.  Your insight is helpful.  I'm so happy they were able to help you.  Hopefully you're in good health now.

    I couldn't find the requirements for getting into the program, but I think I'm high risk b/c mom had breast cancer at 50, I'm 38 with no kids, Jewish background and have a history of breast diseases... multiple fibroadenomas (which I've read multiples increases risk) and phyllodes tumors. Not sure I qualify based on these criteria (and in a way, I hope I don't.  I'd feel better knowing I'm at a lower risk).

    Were you always treated by Dr. Mangino?  What does the program entail?  The website is limited to a single brief page.

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  • jessica749
    jessica749 Member Posts: 429
    edited January 2013

    Yes, it's short/the website.  I don't know if you can get in with those things that you list above, but it does say (the website) something about first degree relative.   With regard to what it entails, I think  that Dr Mangino is patient specific in her recommendations. If you are interested to learn more about it in terms of whether your situation merits it,  why not just call her office and ask! And remember, if for whatever reason they say the program is not for you, you should follow your instinct and do the kind of monitoring / surveillance that you feel is merited.  Good luck.

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  • Jellybean646
    Jellybean646 Member Posts: 12
    edited January 2013

    Thanks!

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