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Calling all Massachusetts Sisters

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ganzgirl2010
ganzgirl2010 Member Posts: 56

I thought it might be nice to start a thread for those of us in Massachusetts. Sometimes having someone close to home to chat with would be nice and maybe eventually we could meet for coffee or do something fun to take our minds off of our hardships.

A bit about me. I am 41 years old, my stats are below. I am almost 8 weeks p/o from my bmx with te's. I just started my fills last week and it was a breeze for me, which I didn't expect because I was in a lot of pain from surgery until I finally turned the corner just last week ! But I am on my way with reconstruction and I cant wait for exchange ! Fortunately I didn't need chemo or rads but I am supposed to start Tamoxifen in a few weeks. I really don't want to take it because of all the side effects..some say I should try it to see how I react but I think Im all set. My mo thinks its a good idea to do oophorectomy so I have a consult on October 14th with a gyn onc surgeon. I would much rather have ooph since Ive already had my babies and Ive already had a hysterectomy 11 years ago because of polyps and fibroids.

I really hope this thread takes off ......look forward to chatting with y'all

Ganzgirl

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Comments

  • muska
    muska Member Posts: 224
    edited October 2014
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    Hi ganzigirl2010, I live in Massachusetts too. My stats are below. I had my BMX in June 2013 and the exchange surgery - in February 2014. Best of luck with your fillings and exchange!

  • ganzgirl2010
    ganzgirl2010 Member Posts: 56
    edited October 2014
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    Hello muska ! How did do you during your treatment and surgeries ?

  • muska
    muska Member Posts: 224
    edited November 2014
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    Hi ganzigirl2010, I did fine. No complications from either surgery, usual problems during chemo but nothing serious enough to mention here.

  • ganzgirl2010
    ganzgirl2010 Member Posts: 56
    edited December 2014
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    I wish this thread took off :(

  • Lulu22
    Lulu22 Member Posts: 61
    edited January 2015
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    Hi Ganzgirl and Muska-

    I'll add my name to this thread. Perhaps we can pull some more MA folks in. I'm on my second go around, my first being in 2011-12. I'm a couple weeks out from a BMX w/immediate reconstruction done at MGH. Not sure yet whether I'll be doing chemo.

  • muska
    muska Member Posts: 224
    edited January 2015
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    Hi Lulu, I am at MGH too. Still go there regularly for port flushes and more.

  • Lulu22
    Lulu22 Member Posts: 61
    edited January 2015
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    Who were your docs? I had Specht (BS), Colwell (PS) and Isakoff (MO).

  • SandyLovesLucy
    SandyLovesLucy Member Posts: 154
    edited January 2015
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    Hi ladies,

    Another MA girl here. I am being treated at the Mass General Cancer Center at Emerson Hospital in Concord, MA. Lumpectomy and chemo are done, I just finished radiation and am continuing with Herceptin until July. Will probably start an AI some time in February.

    Lulu, wishing you a smooth recovery.

    I hope you are all doing well and that more will join in here!

    Sandy

  • daisylover
    daisylover Member Posts: 173
    edited January 2015
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    Hi all, I am treated at Dana Farber.

    Sandy, I saw MO Dr. Sajer and RO Dr. McGrath at Emerson twice - my second opinion - I really liked them both. I should be switching from Tamox to an AI in February as well. Planning an Oopherectomy in March.

    Does anyone know a good place around Boston to find a wig? I purchased one at Hairmates in Woburn, but do not love it.

    Happy Friday. Enjoy the snow and football this weekend Loopy

  • Lulu22
    Lulu22 Member Posts: 61
    edited January 2015
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    Sajer did my initial diagnosis. I did radiation with Schoenthaller at Emerson. We local sisters should get together! Just got the good news over the phone that I won't have to do chemo again. Smile

  • muska
    muska Member Posts: 224
    edited January 2015
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    Lulu, Dr. Gadd did my mastectomy, Dr. Colwell was my PS, Dr. MacDonald was my RO, and Dr. Irene Kuter is my MO. All excellent.

    Daisylover, I strongly recommend this place on Newbury street for wigs. Great selection, personalized service, and they will do anything you want - color, cut, anything. I picked one in advance to match my natural color and haircut. Nobody noticed the transition. Also, MA mandates that health insurers cover up to $350 a year for chemo induced alopecia.

    Salon at 10 Newbury in Boston

  • Lulu22
    Lulu22 Member Posts: 61
    edited January 2015
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    Muska, You had the other Michelle, whom I heard was an excellent surgeon. I was very happy with my Michelle (Specht).

    Daisylover, I used Salon 10 as well. They were very experienced and empathetic.

  • daisylover
    daisylover Member Posts: 173
    edited January 2015
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    Sandy, would love to get together. So happy for your good news!! Thanks also for the wig referral. Love your pics on the "bad girl" thread.

    Muska, thanks for the link. I may have difficulty getting insurance to pay - I had Alopecia Areata before cancer treatment (always minor and not visible). The trial drug Palbociclib took out major hair. (no chemo) I would pay for a comfortable wig. Thanks again!


  • Nel
    Nel Member Posts: 597
    edited January 2015
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    Just saw this thread    Also from Massachusetts, So Eastern Mass near the RI border.  Threated at Dana Farber.  Stage 4, but currently NED.  Doing well and feeling well.

    Hated the whole wig thing, went bald or just wore a baseball cap most of the time

    Be well

    Nel

  • daisylover
    daisylover Member Posts: 173
    edited January 2015
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    Hi Nel, I mostly wear a baseball cap too - just want a wig for dressing up. NED is awesome. Maybe we will cross paths at DF. Stay well.

  • SandyLovesLucy
    SandyLovesLucy Member Posts: 154
    edited January 2015
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    Daisylover, Dr. Sajer and Dr. McGrath are my docs and they have both been great to work with.  I've met several women who got their wigs at the Salon on Newbury and they look beautiful.  I got mine at The Women's Image Center in Leominster, MA (there is a second location in Worcester) and am extremely happy with it. The owner is related to the owner of the Boston shop and she is very tuned in to the needs of breast cancer patients.  She also led the Look Good, Feel Better class I attended at Emerson Hospital and made it so much fun. I wear the wig for work but usually whip it right off when I get home!

    Hi Nel, I grew up in So Eastern MA and live just outside of Worcester now. Great to hear NED for you.  I see we are both Her2 positive.

    Lulu, No chemo - that IS good news. :)

  • balance
    balance Member Posts: 17
    edited January 2015
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    I've been living in northern RI for the past 3 years, but lived in MA for the previous 28 years and still work in MA...so I hope it's OK if I join in. This is only my second posting, but I've been hanging out here quite a bit of late. I would love to get together some time.

  • Nel
    Nel Member Posts: 597
    edited January 2015
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    RI welcome.   Would love a meet up as well

     

  • daisylover
    daisylover Member Posts: 173
    edited January 2015
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    Sandy, my son goes to school in Worcester - I always like an excuse to take him out to lunch or dinner! Thanks for the tip. They also stock mastectomy bras and breast prosthesis!

    Any ideas on where to meet?


  • Sjacobs146
    Sjacobs146 Member Posts: 155
    edited January 2015
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    I live in MA as well, being treated at Mount Auburn Hospital. I also highly recommend The Salon at 10 Newbury, they helped me with my wig there. I only wear the wig at work, and occasionally at a party or something where there will be people I don't know. I'd be interested in meeting other women from the area who are also going through this mess

  • daisylover
    daisylover Member Posts: 173
    edited January 2015
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    If we planned to get together would anyone interested need to travel by public transportation? Are there any other concerns? Are weekends the best/worst time due to work schedules and other routines? I am pretty flexible due to not working right now... Would it be better to meet for coffee, a meal, or an activity? I am fine to travel anywhere in MA (or RI :) but would guess that others might be limited. Since many of us are treated in Boston, would it be best to meet in town? So many things to consider! Not a big football fan here, but I do think that "deflategate" is ridiculous. So, GO PATS!

  • lovlilynne
    lovlilynne Member Posts: 35
    edited March 2015
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    Hi - I see that there hasn't been a post in a while. I was looking for info from other posters who had treatment at MGH. I haven't gotten my treatment plan yet (go back on 4/6), so I'm full of questions and curiosity.

    Specht did my surgeries, she was awesome! I am healing well - still getting pangs of pain, and have a lump, but incision looks good.

    Robin Schoenthaller is a friend of mine and had referred my to Specht. I'm hoping to do my treatment at Emerson with Commander - although I'm seeing Isakoff and Taghian.

    I am leaning towards not getting a wig, but glad for the recommendation.

    My son also attends college in Worcester!

    So, lots more to talk about besides cancer. I look forward to sharing with you all.

    Lynne

  • readytorock
    readytorock Member Posts: 51
    edited March 2015
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    Hi, Ladies -

    I'm here in MA also! I am nearing the end of treatment - eight radiation sessions to go!

  • lovlilynne
    lovlilynne Member Posts: 35
    edited March 2015
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    Hi - question for the MGH chemo experience - do they give you a port? Is it a choice? Did the surgeon do it?

    -Lynne

  • daisylover
    daisylover Member Posts: 173
    edited March 2015
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    Hi Lynne,

    I had a friend recommend those 2 MGH doctors to me as well! I already had completed 2 surgeries and had 2 treatment options and chose to go with doctors at Dana Farber, though. I have a friend who was treated at MGH, and she had a very positive experience. They seem to run much closer to schedule (I was in their waiting room today) than Dana Farber.

    I did not have chemo; so, I can not definitively answer your port question. I would guess that getting one depends on how much chemo is recommended. I am fairly certain that it requires a surgeon.

    My son is a junior at WPI. Where is your son a student?



  • daisylover
    daisylover Member Posts: 173
    edited March 2015
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    readytorock, I did not do radiation, but am fairly certain that it's a big relief to be so close to your final session. Congratulations!

  • lovlilynne
    lovlilynne Member Posts: 35
    edited March 2015
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    Russell is a Freshman at Becker College - he is in the game design program.

    More later. . . got to get to work.

  • lovlilynne
    lovlilynne Member Posts: 35
    edited March 2015
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    So, Daisylover, did you have a choice about chemo? Or did they not recommend it at all. My surgeon said that I probably will need it (be recommended, whatever) due to my positive lymph node.

    Readytorock (love that name, btw) - where are you having treatment?

    Sjacobs, you must be done by now - I have heard 4 or 6 weeks of rads, so that must feel great.

    Newbie question - what is NED?

    -Lynne


  • readytorock
    readytorock Member Posts: 51
    edited March 2015
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    daisylover - Thanks!! 

    Lovlilynne - I am at Winchester.  Had a second opinion at DF, but they had same treatment plan and I liked Winchester better and it was closer to home.

    And - NED is NO EVIDENCE of DISEASE. 

     

  • daisylover
    daisylover Member Posts: 173
    edited March 2015
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    Lynne, I had a low OncotypeDX (9) and received 2 treatment opinions:

    (1) DF docs wanted Tamox, Lupron, Zometa, and Palbociclib (trial - completed 6 months). Now after Oophorectomy, switching to Aromasin from Tamox.

    (2) Docs in MGH system wanted Chemo, radiation, Lupron, Tamoxifen.

    I went with DF plan. Non-aggressive (grade 1) 2 oncologists told me that Lobular does not respond well to chemo. I made the best decision for me...

    Are you finished with surgery? Getting started on a treatment plan helped to calm my nerves.

    Game design is a great field -- lots happening. Nick is a Robotics/ EE major computer science minor. Basically, a robotics geek :) Worcester is a surprisingly fun location. Nick goes hiking, skiing, and skating nearby... Becker is not far from WPI! Bean Counter Bakery on Highland offers delicious baked items! Love Worcester -- Nick has really enjoyed his time there.

    readytorock -- Winchester is such a positive place. I think that a quality community hospital is the best. You were lucky to get the same treatment plan! Hope you are planning a celebration.