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  • Tresjoli2
    Tresjoli2 Member Posts: 579
    edited May 2015
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    hi All! New here. Just had my lumpectomy this week. I am being treated at Beth Israel Deaconess. I live in Carlisle. Still waiting on my path report, and stumbled upon this local group, what a wonderful idea!

    I am 40. I have an 8yo and a 3yo. I went in for my baseline mammo and three weeks later...cancer. Part of me is still in shock.

  • kerryd423
    kerryd423 Member Posts: 53
    edited May 2015
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    HI Tresjoli- I am sorry to welcome you here. I am also somewhat of a newbie. I am also triple positive IDC. Diagnosed about one month before you were. I just went for my 2nd chemo treatment yesterday. (Weekly Taxol with Herceptin every 3 weeks). Depending on you final pathology and lymph node results, you may be offered a similar regimen. I am treated at MGH. From what my providers tell me, triple positive is a good place to be because there is more targeted therapy with Herceptin and Tamoxifen. If you are like me- you are going through a very difficult time right now. My anxiety was high during the waiting period. I second guessed every decision I made while waiting for my treatment to begin. I do feel much better since actually starting chemo. My side effects thus far have been mild. I developed a cold/laryngitis probably from the kick to my immune system. I also had pain from an ovarian cyst, again- Taxol playing with my perimenopausal hormones.

    It is shocking and it's a long road.There is a lot of support here. I learned so much from other women here that helped me to get my questions together from my doctors. I wish you all the best. I am sorry that you are managing this with young children at home. I am 47, with grown children. That is one of my silver linings. I do hope you have close supports. Please reach out with any questions or any additional support we can help with.

    Kerry

  • Sjacobs146
    Sjacobs146 Member Posts: 155
    edited May 2015
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    Tresjoli, welcome. I Just finished treatment in March. I am at Mt. Auburn Hospital. I'm happy to answer any questions you might have. With any luck, this will just be a small bump in the road for you, but it is scary as hell when you start going through it

  • momwriter
    momwriter Member Posts: 276
    edited May 2015
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    Hi Tresjolie,

    I'm sorry for your diagnosis. I was 47 but it was completely out of the blue- no family history- I am and was otherwise healthy as an ox- live well. My kids were 9 and 10. I am 2.5 years out. I am triple positive as well. I was treated at Beth Israel as well and have had an amazing experience there. Let me know if you need names.

  • lovlilynne
    lovlilynne Member Posts: 35
    edited May 2015
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    Hi Tresjolie, sorry to meet you here. We are neighbors of sorts - I live in Chelmsford. I just had my 3rd DD AC on Monday. 3rd treatment kicked my butt physically and emotionally. I had surgery at MGH in Boston, but having treatment at MGH at Emerson in Concord. Happy to answer any questions you may have. I thought I was diagnosed so young, but then I see you 40 yo (or younger!), and I don't feel like I'm so young anymore.

    Lynne


  • angel5806
    angel5806 Member Posts: 3
    edited June 2015
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    Hi just joined here a month ago and glad I found this thread.am from Fitchburg and already had my first treatment and got mild side effect now am on my 3rd week and hair just started to fall. Am thinking of shaving it because shower time is always a pain

  • Nancdancer
    Nancdancer Member Posts: 5
    edited June 2015
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    Hi, would anyone who is being treated at Beth Israel like to private message me. I am very frustrated with my process and waiting times in between hearing from doctors and test results and just wondering if this is the norm in the "big city

  • susan_02143
    susan_02143 Member Posts: 2,394
    edited June 2015
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    Nance, I am at the Beth Israel. Feel free to PM me if you want. *susan*

  • Nel
    Nel Member Posts: 597
    edited June 2015
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    angel5608,

    Somewhere I saw that using a lint roller helps with hair situation.  I carried one with me during that time.  Just roll it over, catches anything that is ready to fall out and helps with the itching.  Eventually I shaved my head as well, but the lint roller was great!

    Nel

  • Tresjoli2
    Tresjoli2 Member Posts: 579
    edited June 2015
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    Nance I am at Beth Israel.

    Lynne nice to meet you! I just turned 40. I went out to Vegas to celebrate, came home and had my baseline mammo and BAM! Cancer...

    Mom writer and Kerry nice to meet fellow triple positives!

    SJacobs thanks! You ladies are all so nice! Very glad to meet you!

    I'm scheduled next for my rads mapping, port placement, and first chemo next week. Stressful week coming up

  • kerryd423
    kerryd423 Member Posts: 53
    edited June 2015
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    HI Tresjoli- I've been reading your posts, and your difficult time with the decision to do Herceptin/Taxol. I went through the same thing. I was given the option of the TDM1 trail which I opted out of. I obsessed for weeks with the decision and I think that was the worst time thus far. So glad that is behind me. Do not worry at all about the port placement. It's a breeze. I was upset that I wasted any time worrying about it. I remember my collar bone being mildly sore for a few days afterwards but nothing to be concerned about.They will give you a sedative to make you "pleasantly unconcerned"- just try to relax with it and it will be over before you know it. I am so glad that I got the port and don't have to worry about my veins. I am going for treatment #5 today (Herceptin and Taxol). Happy to get one more behind me and looking forward to the halfway mark next week! Something that I found helpful is to read the posts from the women who started treatment in February/March- those who are finishing now- it's encouraging to read about those who are just a little further ahead and know that you will soon be there too! I wish you all the best with your treatments.

  • Sjacobs146
    Sjacobs146 Member Posts: 155
    edited June 2015
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    Hello Ladies! A friend of mine had a suspicious mammo and saw a surgeon at Emerson Hospital. She wasn't thrilled with the doc. Can anyone here recommend a breast surgeon at Emerson Hospital??

    Thank You!!!!

  • lovlilynne
    lovlilynne Member Posts: 35
    edited June 2015
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    My mom had her surgery by Andrea Resciniti, and she didn't love her "bedside manner". I guess she did ok with the surgery, although had to go back in for a re-excision, but that's pretty common. My friend at Emerson said that "she's not everyone's cup of tea". I don't think there is another surgeon at Emerson? Tell her to go to Boston MGH and have it done with Michelle Specht. She will not regret it.

    They treat via a team, so she'll have to go to one of the Monday team meeting - get her records over (if her mammo is at Emerson, it will be in system and easy). Have her call 617-919-7226, option 2, and talk to Gwen. She'll get her on the schedule.

    Lynne

  • Tresjoli2
    Tresjoli2 Member Posts: 579
    edited June 2015
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    I LOVED my BS at Beth Israel. Dr. Ranjna Sharma. She did amazing work.

  • Nel
    Nel Member Posts: 597
    edited June 2015
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    Mine at Faulkner was great  Farina Nahkilis

  • lifegoeson
    lifegoeson Member Posts: 57
    edited June 2015
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    Hi everyone,

    I'm so glad I found this thread. I just moved to Massachusetts from New York and I had to leave my doctors behind. I had multifocal DCIS and had bilateral mastectomy with reconstruction (LD flaps with silicone implants) in 2009 in New York. I had a follow up breast MRI last week which showed an abnormality and I have to have a biopsy. (Yes, I may be in that unfortunate group that has bilateral mastectomy for DCIS yet still has a recurrence.) I have no support system here and don't know what doctors are good. I feel so lost.

    If anyone can give me names of good breast surgeons and plastic surgeons in the Boston area, that would be great. I live in Grafton and can go to Boston easily enough. My primary care physician is at Beth Israel Deaconess so if anyone knows someone good there, I'd really appreciate the names.

    Thanks.

    Judy

  • Tresjoli2
    Tresjoli2 Member Posts: 579
    edited June 2015
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    lifegoeson my BS is Dr. Ranjna Sharma, my RO is Dr. Abram Recht, and my MO is Dr. Gerburg Wulff. My BI dream team. Sorry you are here but Welcome.

  • lifegoeson
    lifegoeson Member Posts: 57
    edited June 2015
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    Thanks so much for the recommendations, that really helped.

    And thanks for the warm welcome. As I said, I'm new the the area and pretty much lacking a support system here in Massachusetts so I'm glad to have found this thread.

    Judy

  • lovlilynne
    lovlilynne Member Posts: 35
    edited June 2015
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    Judy, I really hope that your abnormality is not cancer related, and maybe doesn't even require any treatment - one can hope. It must be very unnerving.

    As you can read above, my BS was Michelle Specht at MGH. The whole team at MGH was ah-mazing. I decided to get treatment at an MGH satellite to avoid the 1.5 hour crawl to Boston and back, but I would have continued there in a heartbeat if it were less inconvenient.

    It's probably easier to keep everything within the BI family, and BI is great too. Basically any one of the "Big 3" - MGH, BI, and B&W, are going to provide world-class care.

    My husband spent over 3 weeks in B&W last summer being treated for a tick-born illness that landed him on a vent in ICU. The care there was unbelievable - we feel we owe his life to the doctors (and mainly the nurses) at B&W.

    Lynne

  • momwriter
    momwriter Member Posts: 276
    edited June 2015
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    Tresjolie, I had the same dream team at good old BI! Samuel Lin was my plastic surgeon and he's fabulous as well.

  • muska
    muska Member Posts: 224
    edited August 2015
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    I wanted to share the sad news about Dr. Kaelin who was the founding director of Comprehensive Breast Health Center at Brigham and Women’s: Dr. Kaelin dies at 54

  • lovlilynne
    lovlilynne Member Posts: 35
    edited March 2016
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    Hi Massachusetts-area ladies, I thought I would pop on here and post a message to move our thread up to the top for a little while. You never know when someone might be looking for some information. I was so happy to have found this discussion when I was starting out last year.

    Hope you are all doing well - I would love to hear an update from you.

    I finished treatment last fall, started with the Tamoxifen in November. So far, so good. I can't complain. Chemo wrecked my feet - I have nerve damage and lots of pain in them, but I've been seeing a PT to try to help resolve it. I went back to work part time shortly after I started radiation treatments, I worked from home and took ~2 hours a day for the radiation. Then when that was over I went back to work full time. I had my first mammogram and follow up (with Dr. Specht) in February. Life is slowly getting back to normal. I just wish I could get into a regular exercise routine.

    Best to all,

    Lynne

  • boston2015
    boston2015 Member Posts: 3
    edited August 2016
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    Hi, I thought I would bump up this thread. I am finishing up rads...only 3 more left. What a year! DX in Nov. last year at 39. I would love to hear how everyone is doing past the point where I am at now. I will be starting tamoflaxin in a couple weeks

  • lovlilynne
    lovlilynne Member Posts: 35
    edited December 2016
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    Hi Boston - sorry it has taken me so long to respond. You'll be happy to know that there comes a time when regular life takes over, and you do not visit BCO often or at all. My treatment support group has moved to facebook, so we do all our catching up there.

    Anyway - to your question. I started my tamoxifen in November of 2015. Very few side effects - I had not had a period since February 2015, so I was already in chemopause. I would occasionally get a hot flash - it wasn't horrible - typically I'd have to take off a layer, and then it would pass. It's mostly how sudden and fast it comes on. Fast forward to September, and one day out of the blue I have spotting. Due to the increased risk of uterine cancer, I had an US to look at lining - yes, it was thicker than normal. Then a biopsy - which was b9, what I expected. But the dr. recommended a hysteroscopy. She took a couple of polyps and the lining. The polyps were also b9. I guess this is the downside of the tamoxifen. I should be good for another ~10 months, but the whole thing may repeat itself.

    As far as any other side effects - my major issue after all the treatment were my feet. I got a bad case of plantar fascists, and it didn't get diagnosed for over 6 months, so it got to the point where it was really debilitating. I still have pain in my feet, but I had hydrocortosone shots, and they helped a lot. What I wasn't told - no one will tell you - is that joint/tendon problems are very common after chemo. Some of the women on my support group have had carpal tunnel syndrome, which is also a reminant of chemo. Don't let anyone brush you off.

    And, please let us know how you are doing.

    Lynne

  • 39momof3
    39momof3 Member Posts: 2
    edited February 2017
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    Hello Massachusetts ladies, I was recently diagnosed with IDC and am beginning my chemotreatments on 2/24 at Dana Farber in Milford. JUst wondering if anyone else has or is being treated there?

  • Sjacobs146
    Sjacobs146 Member Posts: 155
    edited March 2017
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    39momof3, how is your treatment progressing? I was not treated in Milford, but I live nearby, in Holliston.

  • 39momof3
    39momof3 Member Posts: 2
    edited March 2017
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    Sjacobs146 - it's going ok. I've done three rounds of chemo so far and have had minimal side effects. I love the doctors and nurses at the Milford location. And it helps that it's close!I live in UXbridge.

  • Sjacobs146
    Sjacobs146 Member Posts: 155
    edited April 2017
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    39momof3, glad to hear that things are going well. Perhaps if I ever have to deal with BC again, I'll consider Milford instead of heading into Cambridge.

  • Tappermom383
    Tappermom383 Member Posts: 401
    edited April 2017
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    Hi, ladies. Saw your thread and had to pop in. I was born in Quincy and grew up in Duxbury. Haven't lived in Massachusetts for many years but I'll always be a Massachusetts girl in my heart. Had the first three of my surgical biopsies there (all four we're b9). BC finally caught up with me on the West Coast.

    Feeling a bit nostalgic tonight and want to wish all of you the very best!

    MJ


  • Sjacobs146
    Sjacobs146 Member Posts: 155
    edited April 2017
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    MJ, sorry to hear about your diagnosis, but it appears that it was caught early. Good luck to you

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