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Calling all Massachusetts Sisters

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  • Sjacobs146
    Sjacobs146 Member Posts: 155
    edited March 2019

    welcome to the club that no one wants to be in. I had the option to go to DFCI, but I decided to stay at Mt. Auburn. They have a wonderful Breast Center, and the parking is way cheaper! Good luck with the surgery, let us know how it goes

  • alto
    alto Member Posts: 82
    edited March 2019
    I wish I’d seen this thread before, my Mass Sisters! We are lucky to have so many options for great care here.

    I went to MGH for my treatment. They got me in quickly, had lots of support services, and my surgeries and recovery went smoothly.
  • 32b
    32b Member Posts: 188
    edited April 2019

    Hi Massachusetts ladies! Wanted to let you know that I've been volunteering to help organize this year's Relay for Life in Arlington.

    Relay is a chain of events nationwide where teams walk laps around a track from 6PM to 6AM. At least one person from each team must be walking at all times, but you have a camp site to get a little shut-eye in.

    There are events and prizes during the night, as well as a victory lap to honor survivors and care givers. All proceeds go to the American Cancer Society.

    Let me know if you're interested in participating!

  • Matchlessorinda
    Matchlessorinda Member Posts: 2
    edited April 2019

    Anyone interested in a cafe/chat meet up in the Boston area, either in Downtown or North End? I was with a local group in Bath and we met once a week (when working from home on Fridays) to touch base with other people touched by cancer? Does anything like that exist here in Boston? x

  • alto
    alto Member Posts: 82
    edited April 2019
    I’ve heard there are some groups in the area, but never found my way into any of them. I’m in Cambridge most days and would be open to meeting up. With this great weather, a walking meetup could work, too.
  • toyamjj
    toyamjj Member Posts: 45
    edited June 2019

    Hi Ladies!

    Im in Marblehead, finished treatment 2 months ago and go for my first post cancer (3 month) checkup next month. Getting a little nervous and not sure what to expect? Will I have imaging done, will my estrogen levels be checked? As you see below I'm get a monthly lupron shot and am on Anastrozole so very curious if thats helping with my estrogen. I have a few side effects so far, mainly joint pain throughout my body. I hate to complain about it because its not debilitating, I'm still able to work out rigorously on a daily basis.

    Being treated at Mass General and feet great about my team of doc's. Hope everyones out enjoying this sunshine!

    Hugs

  • Sjacobs146
    Sjacobs146 Member Posts: 155
    edited June 2019

    At your first post treatment appointment they won't do much of anything at all. Possibly a breast exam, looking over the skin and incision to make sure things are healing well. I didn't have lupron, so not sure if they'll do anything to check estrogen levels

  • Bostoniangal25
    Bostoniangal25 Member Posts: 177
    edited June 2019

    hi 32B, I was volunteering last week for relay for life in Topsfield. We got 140,000$ I believe!!! My girls stayed overnite!!! They did it for 3 years now , they love it!!! After Luminaria ceremony they came to me crying..image

  • Celebris466
    Celebris466 Member Posts: 9
    edited June 2019

    how did you like your experience at BI and who did you see? Why. Did you choose BI over the others in the area. Thank you

  • Celebris466
    Celebris466 Member Posts: 9
    edited June 2019

    So happy to have found this thread. Hope conversations continue. Did you all meet up? I am at one center in Boston but feeling as if I might need a switch. Could you share where you go for treatment and why you like it? Emerson would be much closer for me but not sure who to see? Would appreciate folks experiences. Thanks. Go Boston!

  • Bostoniangal25
    Bostoniangal25 Member Posts: 177
    edited June 2019

    celebris, hi!!! I did my treatment in Danvers, at mass general Because I live on the north shore!!! BI is very good place for treatment!

    Why do you want to switch

  • 32b
    32b Member Posts: 188
    edited June 2019

    bostoniangal that's so great! Arlington made about 120k. Such a fun event too!

  • Bostoniangal25
    Bostoniangal25 Member Posts: 177
    edited June 2019

    32B last year we had more people and raised 160 k, but this year it’s something to do with seniors exams and going to colleges I don t know

  • lifegoeson
    lifegoeson Member Posts: 57
    edited November 2019

    Hi all,

    Can someone recommend a good reconstructive surgeon in MA? I'm in Shrewsbury but any of the Boston Hospitals are fine. I just had a consult with Dr. Lee and Beth Israel in Boston and I wasn't thrilled with him. I see now that his partner Dr Lin has been recommended but I think it might be awkward to go back to the same office but a different surgeon. MGH doctors are not in my health insurance plan. I have Tufts Health Direct Insurance.

    I had bilateral Mx with LD flaps and implants back in 2009, and am now thinking of having the implants out. I want a surgeon who can do the explantation and give me the best possible reconstructive result with the remaining LD flap and possibly a lift.

    Thanks in advance,

    Judy

  • 32b
    32b Member Posts: 188
    edited November 2019

    Wish I could help but I went to MGH. Can you try Brigham and Women's? They're supposed to be the best. I wouldn't recommend Mt. Auburn. I had a bad experience there before going to MGH. Nothing major, but they just aren't very organized, which is concerning with something so serious. Although it was a couple years ago so maybe things have changed.

  • lifegoeson
    lifegoeson Member Posts: 57
    edited November 2019

    Luckily, I'm in the open enrollment period of my health insurance. I am changing my plan for 2020 so that I can go to MGH or Brigham. So if anyone can share their plastic surgeons at MGH or Brigham, I'd appreciate it. Thanks!

  • annc2019
    annc2019 Member Posts: 93
    edited November 2019

    Does anyone know where to buy a breast prothesis and mastectomy bra that accepts insurance form from the doctor? Anywhere in the Boston area would be great.

  • Symphony19
    Symphony19 Member Posts: 1
    edited November 2019

    Hi Judy,

    I recommend my PS Yoon Chun. Love her. She is amazing, her PA is fantastic, and everyone in her office is great. I copied her bio below. Good luck!!

    Yoon Sun Chun, MD, Co-Investigator, Plastic Surgery, is a board-certified plastic surgeon specializing in reconstructive surgery. As the Director of Reconstructive and Aesthetic Breast Surgery at Brigham and Women's Faulkner Hospital, her specific areas of expertise include oncologic reconstruction, reconstructive and aesthetic breast surgery, and clinical outcomes research. Her practice philosophy involves highly individualized patient evaluation and surgical design, with an emphasis on clear communication of various treatment options.

  • lifegoeson
    lifegoeson Member Posts: 57
    edited November 2019

    Thank you Symphony!

  • momwriter
    momwriter Member Posts: 276
    edited December 2019

    I see Dr. Wulf at BIMDC who I recommend 100%. She's amazing. Dr. Lin was my PS- he was great. (though disappointed I simply opted for simple implant- and the radiation distorted some of his work). In a couple of years I'm thinking I may have my implant removed and a MX on the "good " side, so I don't have to worry so much and can avoid the annual screenings which are torture (callbacks every time).

  • alto
    alto Member Posts: 82
    edited December 2019

    lifegoeson, I wouldn't worry about it being awkward for Dr. Lee or Dr. Lin - to heck with that, your needs come first in this situation, and I think even the PSs get that. This is a stressful situation, and there are lots of different paths, so it's okay to pick the doctor and the path you feel most confident about.

    Ann, I got my prosthesis and first round of bras at the MGH Images Boutique.

  • Mom1515
    Mom1515 Member Posts: 3
    edited March 2020

    Hi Ladies, first time poster here. I had a double mastectomy in dec 2019 (no chemo, no radiation and low onco score, stage 1, grade 2, tamoxifen). I had my cancer surgery done with the wonderful dr. Specht and dr Liao for the plastic piece (Direct to implant above muscle). I'm forever grateful having the reconstruction option as so many before me didn't but I'm not 100% happy with the outcome. I feel too big and droopy - nipples pointing down too low. I see a lot of posts about pre-op opinions of plastic surgeons at MGH but can anyone talk to me about their results? I'm seeing Amy Colwell at MGH for the potential touch up. Anyone else gone through this? Advice? Opinions on Amy's results (not bedside manner so much). Is there someone better at MGH or elsewhere in Boston? I'm open to all options. I've kept my diagnosis very private so I don't have a lot of people to ask these questions to. I’m sort of obsessing about making the right decision so I don’t have to have any addl surgeries.

  • 32b
    32b Member Posts: 188
    edited March 2020

    Hi Mom1515 and welcome. I had my surgery with Specht and Liao too. I had UMX and lost the nipple, so not exactly in the same boat as you. Sorry I don't really have any advice, but wanted to reach out as I know it can be a little lonely. I was very private about everything as well and that makes it hard to know what's the right decision. It sounds like you're doing the right thing.

    Did you meet with a medical oncologist as well? I see Dr. Isakoff who is amazing. Dr. Specht refers to him as her work husband as they share a lot of patients.

  • B123
    B123 Member Posts: 239
    edited March 2020

    Hello MA ladies! Love to have a local thread! Happy to find it. I am about 10 years out, and am looking to “finish” my reconstruct. I had implants put in years ago, the radiation side is flatter and tighter then Left. I still have lots of thin scar tissue and never finished the nipples. My PS wants to do fat grafting, she said there is no harm. My worry is that it could cause the cells to react and grow into cx again?? Is that possible? Can any of you who have had it done tell me the process and how it took? Are you happy with the decision? Tganks so much!

  • Mom1515
    Mom1515 Member Posts: 3
    edited March 2020

    thanks 32b, I appreciate you reaching out. Are you happy with Dr. Liao post op? I am seeing dr. Juric for medical oncologist - I have only met him once and he seems very nice. My sister in law was a patient of dr isakoff and he seems wonderful. You are in good hands.

  • 32b
    32b Member Posts: 188
    edited March 2020

    Hi Mom1515,

    I'm glad your sister was happy with Dr. Isakoff. He really is great.

    I'm happy with Dr. Liao post op. He is very thorough about followup and last time I saw him he suggested another surgery to make my two sides match better (I had UMX). That being said I would have liked them to be right the first time. I'm not that excited about the idea of surgery again just for a minor cosmetic adjustment. I'm about 85% happy with the way my cosmetic results came out.

  • purple32
    purple32 Member Posts: 1,767
    edited March 2020

    Hi !

    Im from Spfld and went to MGH Boston- this is my second go round.

    Also wondering if anyone had PBI in Boston ?

    Anyone nearby?

    Laurie

  • Mom1515
    Mom1515 Member Posts: 3
    edited March 2020

    Hi, did he talk about timing of the revision? How many months out from the initial surgery is he comfortable doing the revision?

  • 32b
    32b Member Posts: 188
    edited March 2020

    I got pregnant pretty much right after my initial TE exchange surgery which about 4 months after my MX. So there was a year of pregnancy/breast feeding which also changed the size and shape of my healthy breast. I'm not sure how soon he ordinarily would have been ok with additional surgery.

  • alto
    alto Member Posts: 82
    edited March 2020

    Still planning to go to MGH for my 6-mo checkup, but it seems like so many things in town are shutting down... :S

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