Just diagnosed - any advice?

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Kitchenwitch
Kitchenwitch Member Posts: 374
edited June 2014 in DCIS (Ductal Carcinoma In Situ)

The radiologist who has done my last 6 years of mammograms (well, the same hospital, don't know if it's the same dr. who read them all) called me a week ago and told me that my stereotactic biopsy was a stage 0 precancer. He said I'd likely have a lumpectomy and radiation. That was it. My own doctor told me today it is DCIS (I assumed that from the radiologist's prediction of treatment) but it was very hard to get any other staging info out of him. He told me it seemed like medium to aggressive type.

I have appointments this coming Wednesday and Thursday with two breast surgeons in New York city, where I live. I am very alarmed, to say the least. I know the outlook is very good -- at least that's what all the doctors say -- but still I'm obviously in for a couple of procedures and treatments.

I will probalby set up a few more appointments. I want to find a practice I feel really, really comfortable with. I will not delay treatment more than a few weeks (maybe in the new year, latest) but it means a lot to mean to have doctors I am really confident in. 

 If anyone can recommend doctors, surgeons, oncologists, hospitals in New York I would be so grateful. I just went through a cancer scare with my colon (it's been a very fun year) and I had wonderful treatment at Weill-Cornell so one of my appointments is there. But I am definitely hoping for some opinions from patients in the area. This seems like a wonderful forum with caring and very informed women!

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  • sweatyspice
    sweatyspice Member Posts: 922
    edited December 2009

    I'm sure you'll stop by Sloan, there are pros and cons to Sloan.  One of them is this:  once you see a Dr in one of their departments, it's VERY hard to switch to another one.  They claim to have a "team approach" and don't like Dr shopping within the practice, though it can be done if there's a big enough reason and you jump through all the hurdles.  That said, let us know who you're thinking of going with before you finalize your app't.  I've seen two of their surgeons, absolutely hated one and liked the other a lot.  Dr. Van Zee seems to be the queen of DCIS there, but I was never able to see her.  The one I saw and liked was Sacchini, but I've heard good things about several of the others.  The one I hated is leaving the dep't (or so I'm told) so you probably won't get an app't with her anyway.

    Sloan is a bit of a factory, it works extremely smoothly, which is good for taking a lot of the stress out of the situation, but you've got to surrender to the Sloan Way, which I found difficult.  Others are fine with it.  But then, my disease is a bit atypical. 

    The new building/offices is absolutely lovely and calming, and there's no arguing about the exam robe you get there. 

    I'm a big fan of Dr. Feldman at Columbia, though Columbia can be a pain to get to depending on where you live.

    I hear good things about Swistel at Weill, but haven't seen him (not yet, anyway!).

    I'm seeing Guth at NYU on Weds am, have heard good things but haven't met her myself yet.

    Some people love Boolbol at Beth Israel, some people hate Beth Israel.  I hate Beth Israel, but that's just me.

    Some people love Estabrook and/or Tartter at St Luke's, some people think Estabrook isn't warm and fuzzy enough (I was fine with her personality) and have never met Tartter.

    I was given a recommendation for one of the surgeons at St. Vincent's by one of my other (totally unrelated) Dr's,  I'll get the name shortly and edit the post, but I don't think I'm going to make the call, I don't think St. Vincents has the kind of reconstruction I'll probably want.  That said, they might be fine for you.

    Where else....hmmm......

    Haven't been to Mt. Sinai or the suburbs, and I probably won't.

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  • CrunchyPoodleMama
    CrunchyPoodleMama Member Posts: 1,220
    edited December 2009

    Hi... so sorry to have to welcome you to a club no one wants to be in, but after the intial shock wears off, you'll probably find it isn't so bad (at least that's been my experience so far)!

    Did you get a copy of your pathology report? If not, ask for it. Good habit to get into with every test, procedure, etc... always ask for a copy. 

    Good for you for shopping doctors to find one you're comfortable with. I met with three doctors myself... all very well respected and very experienced. However, one did not answer my questions (just skirted around them and gave non-answers); the other told me (before I even had a biopsy) things she was wildly assuming about my cancer (which turned out not to be true at all).

    The third doctor I met with answered my questions directly and thoroughly (plus he didn't slam me for wanting to take an alternative/complementary approach in addition to surgery). I felt so much better and less panicked once I found the doctor who was the right fit... you'll feel so much better too, once you find yours.

    I don't have any NYC-specific suggestions, but wow, sweatyspice has that covered! 

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  • Kitchenwitch
    Kitchenwitch Member Posts: 374
    edited December 2009

    Thanks, Sweaty! This is great. I think I'll give Sloan a miss for now - based on what someone else wrote I don't know if DCIS w/o chemo is cancer-y enough for them. (I called them when I had my colon excitement, and they asked if I'd had a CAT scan and an MRI. WHen I said no, they said get those and then call us. I figured the colonoscopy and the path. report was enough to get started.)

    Dr. Swistel was recommended but he doesn't take my insurance. But Eleni Tousimis in the same practice does, so I'm seeing her tomorrow. Thursday I'm seeing Rachel Wellner (better than ill-ner, right?) who I think is at Mt. Sinai.

    I will definitely be seeing a couple of others. I have no feelings either way about Beth Israel. Columbia... eh, I have very mixed feelings about Columbia. My doc is there, and it's a great place to have a baby, but I had a horrible experience w/ a colorectcal surgeon and her wretched support staff.

     Someone else at NYU was recommended to me: Deborah Axelrod. Might check her out.  

    So far (and feel free to correct me if I'm wrong) it seems like everyone I've talked to (wellner; tousimis) -- at least their staff -- is unbelievably nice and kind and sympathetic. Almost as if they've been counseled to be that way because of the nature of the condition. Kind of like a really well-trained sales staff. We'll see how the docs are. 

     Thank you again for all your recommendations! 

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  • Kitchenwitch
    Kitchenwitch Member Posts: 374
    edited December 2009

    Crunchypoodlemama (what a fabulous name!) - thanks for writing back. I'll get the path report tomorrow (1st doc has it). I think you are right: once you have the right doctor it all feels a bit better. When I was going through the colon stuff, I felt much more relieved when I found a surgeon who promised he wouldn't do lots of cutting unless he absolutely had to (he wound up doing NOTHING). Whereas others (including the GI who first raised the alarm) were completely ready to chop out a third of it. My surgeon was also unbelievably kind and sensitive, and the hospital was also great. Part of me really hopes I can find a breast surgeon etc. who practices at the same place. The recovery room called me several times after my so-called procedure to see if I was ok and if I needed anything they could help with.

    In NYC people can be so hard-edged and actually nasty -- it's shocking when you're sick and need help that people would treat you this way but they do. There's that whole "We're saving LIVES" attitude and "We're the DOCTORS" position. Some docs just don't want to work WITH you.

    Can you tell me more about the complementary/alternative approaches you did?

    Thanks!

    Jill

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  • Jelson
    Jelson Member Posts: 1,535
    edited December 2009

    Although in the end I did not follow through in getting samples sent to him for a second opinion, Dr. Ira Bleiweiss, Director of the Division of Breast Pathology within the Pathology Dept at the Mt. Sinai was highly recommended to me. I even spoke with him on the phone and he was incredibly nice.

    Julie E

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  • Kitchenwitch
    Kitchenwitch Member Posts: 374
    edited December 2009

    Thanks, Jelson. I may look into that if it seems like a good idea. Right now, I'm not sure what DOES  seem like a good idea. WIll likely know more tomorrow after first appt. with a surgeon.

     J 

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  • sweatyspice
    sweatyspice Member Posts: 922
    edited December 2009

    I don't think Axelrod takes my insurance. 

    As a general matter, support staff attitude and competence varies wildly.  That's the main reason I can't do cancer at Beth Israel.  In my case, the supporting cast dropped the ball big time and there's no making up for it.

    It's possible that you read an early post of mine about Sloan, when I had my consult w/ the dismissive bitch queen.  I think the problem was her, not Sloan.  That said, Sloan does seem to have an institutional bias against presurgical MRIs, which would have left me sitting on a recurrence waiting to happen.  But my case is on the short end of the statistics.

    Where IS your colorectal surgeon, Cornell?  

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  • CAROLMARIE427
    CAROLMARIE427 Member Posts: 206
    edited December 2009

    Hi.  I know how overwhelming it can be when you are first diagnosed and "searching for a doctor."  I live in New York and went through searching for many surgeons.  I also was recommended Swistel, but didn't take my insurance either. I wound up using Dr. Patrick Borgen.  He was chief of breast surgery dept at Sloan for many years.  He moved himself and some of his staff over and started Maimonides Women's Breast Care Center in Brooklyn.  He is extremely compassionate  and is tops in research and surgery in the breast cancer  field.  If you google him, you can see all the articles and research he has done.  I liked that I basically had a NYC top quality surgeon, but in a nonintimidating surrounding.  If you want more info, please private message me.  Hugs.  

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  • sweatyspice
    sweatyspice Member Posts: 922
    edited December 2009

    St. Vincent's breast surgeons my colorectal surgeon recommended:  Stephanie Bernik or Christopher Mills 

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  • AnnNYC
    AnnNYC Member Posts: 4,484
    edited December 2009

    Dr. Guth at NYU is my BS -- I love her, and think she's great in every way.  Dr. Axelrod and Dr. Guth cover for each other's vacations, etc. -- I saw Dr. Axelrod once for an emergency appointment (anxiety-provoking symptom on my part that turned out fine) when Dr. Guth was away -- liked her very much, too.

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  • Kitchenwitch
    Kitchenwitch Member Posts: 374
    edited December 2009

    Sweatyspice: Was your dismissive bitch dr. at Sloan the one who was wildly late, rushed in all excited about some treatment you can't have? That was infuriating to read (and, I'm sure, to go through). When you say Sloan has a bias against presurgical MRIs, you mean...you have to have one? Or you can't have one? Or...? Sorry to be so dimwitted. A lot on my mind right now.

     Weirdly, a neighbor of mine had DCIS a couple of years ago. Was treated at Sloan, loved it, had a mast. on one side and (in her words) the most exquisite reconstruction. She is very picky, visually, so I have to believe her when she says the work was great.

    Yes, my CR surgeon is at Cornell. If you need his name, just ask! (Hope you don't need him, tho.) He was wonderful and so was all the support staff. I"ve had extensive experience at Mt. Sinai and Columbia Presbyterian (first son was born premature; in the hospital for a year) so I'm sadly versed in hospital and dr. stuff. Never had anything to do with Beth Israel. Figure I'm keeping the other places pretty busy (or they're keeping me pretty busy).

    Hospitals can vary, tho, from dept. to dept. We hated Mt. Sinai for years based on their neonatal ICU but their ped. ER is great. I hear their breast surg.people are good too. So I may stop there.

    Thanks for the St. Vincent's names. 

     Carolmarie, thank you, thank you! Brooklyn's a bit of a hike for me. I'm glad you had a good experience. I may try Sloan if I can get an appt!

    AnnNYC: I have some other name at NYU to try but I'm hearing Dr. Guth's name come up a lot, so maybe i'll try her. Thanks!  

    Anybody I should AVOID?? :)

    Here I go... off to Dr. Wellner (I think she's with Mt. Sinai). I'll report back. Just as soon as the valium wears off. 

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  • sweatyspice
    sweatyspice Member Posts: 922
    edited December 2009

    If I go mast, I want a DIEP recon - and I don't feel comfortable with Sloan for DIEP.  Long story, that can wait for later.

    Yes, the dismissive bitch was late among many, many other things. 

    It seemed to me that Sloan does not recommend presurgical MRIs as a general rule (meaning you DO NOT have one) - at least not for DCIS. Monica Morrow, the chairman of the BS dep't, has said that she doesn't believe in them, she thinks they're overtreatment.  The dismissive bitch also gave that treatment advice/opinion, but with D.B. (dismissive bitch) attitude.

    I ended up having an MRI at Columbia, which revealed a second area of DCIS.  So far, I've never asked a radiation oncologist if rads would have killed it had it never been found on MRI.   But I may get to ask that question soon.

    I saw Guth today.  Loved her, liked NYU as well. 

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