High Risk Surveillance in Boston - MGH or DFCI/B&W?

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barb3246
barb3246 Member Posts: 175
edited June 2014 in High Risk for Breast Cancer

I have a strong family history of BC, as well as a personal history of multiple biopsies for proliferative breast disease (fibroadenomas, papillomas, hyperplasia). I have been seen annually by a BS in a breast health center for the past 10 years or so (I am 45). In the past 2 years I have had 5 breast MRIs and 6 benign biopsies, the latest one showing mild focal ADH for which I had an excisional biopsy. I had a followup MRI 2 weeks ago which showed several bilateral foci of enhancements that they are monitoring for stability, and my BS has told me I need to get another MRI in 6 months.

I am not really happy with the breast center that I currently go to, so I am planning to switch over to a new hospital. The two that I am considering are the Avon Comprehensive Breast Evaluation Center at Mass General, or the High Risk and Prevention Clininc at Dana Farber/Brigham and Womens.

I'd love to hear from anyone who has gone to either hospital for surveillance, and recommendations for doctors there. Thanks!!

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  • barb3246
    barb3246 Member Posts: 175
    edited October 2010

    Well, I'm a bit surprised that I got no replies - I thought these hospitals would be very popular with other high risk individuals in the Boston area. Anyhoo, I went ahead and scheduled an appointment with Dr. Judy Garber at Dana Farber's Cancer Risk and Prevention Clinic.  I had to fill out lots of paperwork, and gather all my films and reports, etc, but hopefully it will be worth it to be followed by experts in a world-class institution.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2010

    Hi barb3246,

    I am new here and just noticed your post.  I actually just walked in the door from a morning at the avon breast ctr.  I am new with them, I transferred all my films, etc over there and so far I find them to be helpful, always return phonecalls promptly and the wait isn't bad either :-) I really like the surgen I have picked and no regets about the switch at all.

    If you have any questions, feel free to PM me, like I said I am new over there but if I can help, I will!

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  • suca1213
    suca1213 Member Posts: 18
    edited October 2010
    I have had some relatives refer Dana-Farber/Brigham and Women's Cancer Center as being very professional and well equipped. Check out their Boston medical center. They have experts on board who are very well conversant in using the latest and most advanced treatments for biopsy like the FNA, open biopsy, vacuum assisted biopsy, ultrasound biopsy and the like. And above all the staff is compassionate and caring and very prompt with all other formalities that may be required.
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  • septembersong
    septembersong Member Posts: 287
    edited October 2010

    I was treated at Dana Farber for stage I breast cancer, and so can't comment on the specific service you're considering. I can tell you that I've had an excellent experience there. It's an extremely well-run organization, and the staff--from doctors to parking attendants--are careful and compassionate. I've been seen in the Lance Armstrong Survivorship Clinic and the Zakim Center as well for acupuncture, and had  consistenly good experiences. I think you're making a wise choice. (I switched my care from a well-regarded local hospital that's part of the Partners network. In my experience, there's a huge difference in the care offered by breast health centers. It's worth tracking down the best you can find,)

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  • Kam28
    Kam28 Member Posts: 53
    edited October 2010

    Hi,

    i am currently deciding too what hospital to switch to. I beeing monitored at St.Elizabeths in Brighton but would like to switch to some more "well known" hospital. Even thought i like Dr. Segal(radiologist at St.elizabeths) i am not too happy with the breast care centre there.

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  • gep
    gep Member Posts: 5
    edited October 2010

    Hi,  I have recently been treated for DCIS at MGH. Required extensive surgery, still not done with tune ups of the reconstruction. It has been just about a year and I did not require radiation or chemo. When I am finally finished I am thinking of transferring ongoing follow-up to either Dana Farber or Beth Israel as I also have LCIS and will need close follow-up. I have not been very happy with the care at MGH on several levels, not the least of which was a three month wait between diagnosis and surgery as the surgical oncologist and PS had to get their schedules to work together and it took three months for this to happen. I was literally terrified for the whole three months waiting.  The care was quite impersonal and mistakes were made in my opinion due to lack of personalized attention and care. I am just one person with just my own experience but based on it I could not recommend care there. Take Care

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  • Sue-61
    Sue-61 Member Posts: 599
    edited October 2010

    Barb, I just also noticed your post. I was treated at Dana Farber, had surgery at Brigham and Women's. I had a seroma post operatively and went to the high risk breast clinic at Brigham as the nurse practitioner for my breast surgeon was not working that day. I was very impressed with the "high risk" nurses there.....Very kind and compassionate. I asked just what the heck this clinic was all about and the nurse explained that some women need very close monitoring (like you) and I think that is the place to be. Of course all of the Boston hospitals have top of the line equipment. I was initially seen near my home at Umass Med Ctr and they didn't even have digital mammography and I was astounded when I saw all the high tech stuff at the Brigham. Sue

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  • barb3246
    barb3246 Member Posts: 175
    edited October 2010

    I had my appointment at Dana Farber's Cancer Risk and Prevention Clinic on Friday. I met with a genetic counselor, as well as Dr. Judy Garber, who is an oncologist there. Everybody was very nice, and it is a very well-run operation over there. Dr. Garber seemed a bit overwhelmed by all of the MRIs and biopsies that I have had over the past 2 years, so she said she was going to have all of them re-read by the radiologists at Dana/Brigham & Women's before recommending a plan for ongoing screening.

    Prior to my appt., the pathologists at Dana Farber/B&W re-read my slides (3rd reading) from the biopsy that I had earlier this year, and the results were disturbing. The pathologists at St. Elizabeth's had said it showed ADH and a radial scar. The pathology was re-read at Tufts Medical Center, and they saw only the ADH, no radial scar. Based on this pathology, I got an excisional biopsy/lumpectomy a month later. Well, Dr. Garber gave me the latest pathology report from Dana Farber/B&W, and their pathologist said that the tissue removed should NOT be classified as AHD, but was only florid hyperplasia. BIG DIFFERENCE !! I was very upset, as I would not have needed the lumpectomy without the diagnosis of AHD, so I went thru all that stress and pain for nothing! Not to mention I now have a good size scar as well as internal scarring which makes the reading of future imaging more difficult. Dr. Garber was very comfortable accepting the 3rd reading as the definitive reading, although she did say if I wanted she would send it for a 4th reading - I declined.

    So it really does matter which Breast Center you receive your care from, and the experience of the doctors at the different breast centers. I am kicking myself for not switching over sooner - I should have listened to my gut feeling a couple of years ago when I just was not comfortable with what was going on at the other breast center.

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  • nobleanna007
    nobleanna007 Member Posts: 641
    edited October 2010

    Good for you for going to Dana Faber,

    I so wish I could go too them. I live in Maine soooooo I am not able too do sooo at this point. But they would be my first pick for sure!!!! I have switched Oncologist and am now unhappy and want too go back to my old one, the reason I switched is because of the time limit we had, 15 minutes, sorry but I need to sometimes talk more than that. My new Oncologist just left my region although I could still see her I was put off by her staff when I called about headaches that were reported for awhile and belived it may be hormone relative, Being 100% + for ER and 100% + for PR, I was a little concerned but was told by the frount desk to call my PP. Bullshit!!! I am stage 3 with headaches daily, for a long time. So now I am in the process of switching back to my original onc. even though she is really busy. I love her NP, so I will try to see her also.

    My feelings our you need to be happy and comfortable with your care and if it does not start at the frount office you can tell it is not going to be organized,

    Best of luck!

    B

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