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Mastectomy Sept 2011

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  • Silia
    Silia Member Posts: 265
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    Glad I've found this thread. I've just finished chemo last week and will be having sept BMx with recon (should have the date within 2 weeks). Nervous and need to begin to prep myself by reading earlier surgery threads and the "what to buy" thread... I've seen some discussion here re adjuvant chemo vs neoadjuvant. My bs was originally scheduling me for March surgery but when I met with the onc, he recommended chemo first. If I hadn't consulted with onc prior to surgery, that wouldn't have been an option. Of course we each need to make our own decisions once we've lined up docs we trust. I look forward to supporting each other through this stage in our process!

  • cinnamonsmiles
    cinnamonsmiles Member Posts: 67
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    I had a BMX with node dissection on 1/11/11. Not all mastectomies are easy. My recover is still happening. I have severe post mastectomy pain syndrome and massive scar tissue adhesions across the chest and into the armpit. Everyone reacts different to the surgery. For some its easy and a walk in the park, for others there is a lot of pain involved. I can not describe the amount of pain I was in and still am in. Just in case any of you have problems, it won't be a total shock. I was not prepared for this because I hadn't read of anyone having the problems like I do.  (Though now I have found some women with PMPS in out PMPS thread)

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,062
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    Hi all, I have a concern that seems a little different. I have not had major anxiety or periods of being sad/sleepless/upset yet. I have been very business like about my BC diagnosis and remarkably unemotional. I have had occasional "moments" when I think about the implications of all of this but I almost feel as if I am too calm and rational. I will attend a memorial service today for a woman who was a parent at my school. I was her son's teacher. She had breast cancer. My school community is very close knit and I will know almost everyone there. The community at large does not know about my situation yet (this is not the time and place to tell them) but I am afraid that this may be the circumstance that tips my emotional balance. My younger daughter will be with me for support. I hope to just focus on celebrating her life. Has anyone else not been a wreck after their diagnosis? -Caryn

  • Hi Caryn, while I wouldn't say I have ever been a wreck post-dx, I have been anxious and angry at times. For me, it's not about the DCIS dx, b/c I'm not scared of that, for me it's the fact that I have to disrupt my life, again, this time with a BMX, for cancer.

    Having lived in the shadow of cancer since '01 and having met literally hundreds of women living w/BC, I can tell you w/confidence that there is a huge range of reactions, and they're all "normal." Many women are "all about business" initially and then later it "catches up" with them and the reality of what's occurred sets in post-treatment. Some women fall apart and stay apart the entire time. Some fluxtuate. It depends on your past experiences, your diagnosis, your general disposition. For me, this second diagnosis is much less scary - one, I've been through the process before, but moreover, the cancer I have this time (crossed fingers 'til final pathology's back after BMX) is MUCH less threatening. 

    You're clearly a self-aware person, and so I would NOT worry that you're "abnormal" . . . I think it's great your daughter's going with you to the service. I would just let things come as they may, roll with it all as best you can. This might throw you for a loop, it might not. I attended the funeral of a young women I worked with while I was bald and on chemo in '02 - she had had a recurrence of her childhood cancer. So while it wasn't BC, specifically, it was a death from cancer. People were astonished I showed up, but I did as you say here, just focused on celebrating her and "forgot" about myself while I was there. And it didn't affect me in terms of my own cancer diagnosis. It was just sad. If anything, it lit my fire to do more advocacy around cancer b/c it's everywhere, and taking so many great people.

    Good luck today - I'll be thinking of you. And if you have the energy later, check in and let us know how it went.

    Sarah 

  • summergirl1
    summergirl1 Member Posts: 27
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    Hi there , just thought I would stop in and give my experience as I too was very anxious before surgery, I had a right MX and axillary clearance with immediate Reconstruction (TE) 5 weeks ago and it was not nearly as bad as I imagined, I was out and about in 5 days ,I am not going to say I had no pain but it was more discomfort from the TE, and noid removal my breast itself was actually numb, I will say do not do any housework or heavy lifting for a while it will really agrevate it so if you have someone to help let them do all that ,, this is a time to think about yourself and your healing and take it easy as much as you can, do not over do it. I do get some nerve twinges as the nerves are healing but nothing as bad as the pain I had when I had my tumor (5cm)  Good luck to you (hugs) 

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,062
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    Hi Sarah, Yes, I guess I have to acknowledge that there are many different ways to react and go with what feels best for me. The memorial service was difficult but it was such a loving tribute that I wouldn't have missed it for the world. Due to protocol and respect for my colleagues and class parents, I wasn't at liberty to say a word about my own BC. My colleagues will find out this Thursday when we come together for our first (official) day back. The parents will be told at back to school night about 10 days after that. when I felt the urge to "spill" at the memorial, I told them my good news instead namely that I am going to be a grandmother in March. -Caryn

  • Silia
    Silia Member Posts: 265
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    Mycinnamon - so sorry you've been dealing with this pain. I definitely had not heard of that before!



    Caryn - congrats in being a grandmother come spring! That exciting news will probably help you plow through this bc process...



    Summergirl - thanks so much for sharing your story. I hope that I will be equally fortunate. I'm also having nodes removed and getting TEs.

  • MargieC
    MargieC Member Posts: 302
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    Mycinnamon- thanks for sharing your story.  I also had not heard of PMPS before but will read up on it so I am prepared.

    Those who have dropped and shared your experiences I really appreciate it.  It scares part about the surgery is the unknown and your sharing helps with that.

    have a good Monday everyone.

  • summergirl1
    summergirl1 Member Posts: 27
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    MargieC you are right the unknown is the scariest part, I was a wreck before the surgery and now I look back and am so grateful its behind me and Im now moving onto the next stage (chemo) we all have strenght we dont even imagine we have, so dont let fear take over , I was told BC is like a scarey rollercoaster you hold on for dear life and before you know it its all over , we will all get through this and look back in a yr or so and it will just be a scary memory. Good Luck all 

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,062
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    c kitrell- Thank you for a comforting post. I had a pre-op visit today and this made me a bit jittery because,well, this is real! Waiting all of these weeks it has sometimes been easy to put it out of mind, but with my surgery set for 9/7, all the wheels are clearly in motion. I did find out that my surgeon wants me to have the dye for the SNB injected the afternoon before my surgery, boo! I was hoping to be a bit doped up when this happened, but I can deal with it. Kaiser also told me that they will pay for one post op camisole which I can pick up at a local shop and that thereafter they will pay for 3 bras annually, including a professional fitting. Yeah! Need to make sure my foobs look good Wink! -Caryn

  • Thanks to all the women who've checked in here w/good and bad (I'm so sorry they're bad, on top of all this - not fair!) experiences - as others have said, the "unknown" is the scariest part in all of this, and I'm starting to feel like I'm prepared for pretty much anything here . . . thanks to everyone being so open and honest.

    I just scheduled a f/u w/my PS to tell her I want saline implants and to discuss a few other issues - that'll be on the 26th so I have time to finalize my list of questions. Called the BS office to get them to send out my pre-surgical packet sooner, rather than later, so I can plan.

    Caryn - did you call Kaiser on this stuff or do you have someone there that's a contact/care coordinator who let you in on that? I have (although haven't spoken with) a nurse coordinator hired by my ins. co. who is generally a huge PIA, but now I wonder if I should check into this stuff - so even if you're getting reconstruction you get bras? For some reason I had that in my head that was for women who were using prostheses . . . .  

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,062
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    Hi Sarah, I don't know if you are familiar with Kaiser but, for the most part, all of their services, cradle to grave, are provided within their own system. This includes, hospitals, labs, all medical specialties, pharmacies, health ed libraries etc. Some of the larger campuses even have farmer's markets (but I'm pretty sure those are contracted out). So to answer your question, I had a meeting with the breast surgery coordinator and she went over all of those things with me as well as making sure I understood how things would go on the day of surgery and answering any questions I had. I had been keeping a running list of questions over the last couple of weeks so I had plenty. As to the bras,she said yes, this was available even if one had implants. I will stop by the shop this week to pick up the camisole so I will verify with the shop owner. -Caryn

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,062
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    An update to post op garments; Kaiser gave me a list of authorized shops that carry post mastectomy garments. One of them was very close to my school so I went there after doing a bit of work on my room. Wow! It was a beautiful boutique catering to women who have had breast surgery and cancer. They had everything from jewelry to swim suits, undergarments, scarves and wigs. The fitting room looked like a beautiful dressing room that you might find in an elegant home. Kaiser completely covered the cost of a post op cami (with drain holders) as well as a soft cute recovery bra (closes in front but has two buttons at the top so if it peeks out from under a shirt it just looks like a cami).Both seem comfortable enough to sleep in. I bought 2 other post op cami's on my own because it will be warm here and I will probably wear them daily around the house. One brand is Amoena and the other Softee Two. You know I'll be writing reviews after I've used them! The women who worked at this boutique were so nice and I loved that the atmosphere was not in the least "medical". I have been very fortunate on my BC journey to have dealt with professionals at Kaiser and now at this boutique who have offered me information, kindness and compassion with a good dose positive humor. Kudos to Kaiser Santa Clara and The Next Step Boutique. -Caryn

  • Great to know, Caryn - thanks for the update! I'm so glad you found lovely women to help you out - I still remember with great fondness the women who helped me select my wig the last first time around. They were just so nice (and honest about what looked good, I chose well!).

    Coincidentally, that nurse coordinator I was talking about left me a message this a.m. Weird. I called her back but didn't hear from her today. I might call the boutique in the cancer center @ MGH (my home away from home) and see if they have the Amoena & Softee camis - I keep hearing that everyone loves them. I got mine from the TLC catalog (the ACS boutique) and they're nice, but not super soft.

  • mags20487
    mags20487 Member Posts: 1,092
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    I am looking at early to mid sept for bmx... will post actuals when I get them.  This whole thing is surreal so far.  I feel like I am watching it happen to someone else.  I wish I could fast forward 6 months but gotta do this! 

    Mags

  • Dukes_Up
    Dukes_Up Member Posts: 112
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    Hi Ladies~

    I'll be having a (p?) bmx in September (date not yet determined.)   I decided to go forward with this surgery after 11 long years of high-risk/every 6 month monitoring and recently failed stereotactic biopsies + suspicious MRIs.  My extremely dense breasts have multiple clusters of calcifications, fibroadenomas, and cysts.   Given these factors in addition to my Mom's BC dx 2 years ago, I see this decision as a no-brainer for me.  

    I'm scheduled to meet with my BS on Tuesday.   If all goes smoothly, I'll be looking at an early September surgery. 

    In support,

    AJ

      

  • Silia
    Silia Member Posts: 265
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    mags -  I agree completely re: wishing we could "fast forward"!  My odyssey started in Jan but they decided on chemo first so am now ready (as ready as a person can be...) for surgery and expect it in the same timeframe as you.  We'll get through this. (love your cat photo!)

    AJ - Yikes, you've had a long road with this bc situation.  So glad that you are taking steps to put this behind you and get on with your life.

    I had my post-chemo MRI today and on Tues my bs will let me know how the masses have responded to the treatments.  Wishing everyone a great week.

  • msphil
    msphil Member Posts: 185
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    Hello ladies, let me ease your mind, take it from a long time Survivor(17 yrs), I was diagnosed in September of 1993, I had biopsy, then three months of chemo to shrink the tumor, then L mastectomy, with reconstruction(but my body rejected it and hardened) and then three months after mast, chemo resumed, all while preparing for my 2nd marriage to my wonderful hubby. I had some heart problems but nothing medication didn,t take care of, I,M STILL HERE(Praise GOD), so don,t sweat it, go one step at a time, and remember to AWAYS have HOPE.  God Bless. msphil  (idc,stage2, 0/3 nodes, L mast. chemo, rads and 5 yrs on Tamoxifen). 

  • Mags, AJ, Silia - hate that you have to be here, but good to be all in this together . . . one foot in front of the other, as msphil reminds us. Mags, I was JUST thinking that I wish I could fast-forward even 6 weeks - that'll be 2 weeks post-BMX for me. I just need this to happen, you know?

    How's everyone managing stress? I am normally an avid (7 days/week) exerciser - I've amped it all up and am sometimes doing 2 workouts/day to get in the best shape possible pre-surgery and to cope w/the worries. Also getting a ton of organizing, etc. done around the house so I'll feel like things are ship-shape when I'm laid up for a bit. Otherwise, focusing on my almost 8-year-old - she keeps me in the moment most of the time! 

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,062
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    msphil- Thanks so much for the encouragement. We need more women who have had positive outcomes to post!

    Sarah- Anything that keeps me busy keeps stress at bay. I work out several times a week (free membership at the JCC since my daughter works there :). Moving classrooms and changing grade levels has been a good way to occupy my time  as has getting everything ready for surgery/recovery. Went for a pre-op EKG and blood work today. I need to get all of the medical stuff out of the way because I really want to focus on my class for the 10 days I will have with them before surgery. I am so lucky to be a teacher! -Caryn

  • MargieC
    MargieC Member Posts: 302
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    msphil - thanks for your post.  It is always good to hear from those who have gone before us that this can be beat.

    mags - I was just saying to someone at work yesterday I wish I could fast forward 7 weeks.  That will get me through my last chemo treatment and surgery.  I have been dealing with chemo since May 13 - it hasn't been too bad, but I am just ready to get it over with and have my BMX.

    Hey Ladies --  once you know your surgery dates let me know and I will post at the top of this thread. 

    have a great Thursday everyone...

  • Margie - the last chemo is HUGE! I still have that date marked in my calendar as an anniversary every year. I was never so happy as to be done w/that. And from what I hear, surgery is so much easier to deal with in that every day, every week after surgery you feel better and better . . . whereas w/chemo, as you know, you get knocked further and further down, and no matter how much you rest, it just doesn't make you feel rested . . . you'll do it! Think of how far you've come!

  • TML
    TML Member Posts: 10
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    Hello all.  Moving from the Aug 2011 forum to the Sep 2011.  Was waiting for it to appear.   GROOVYGIRLS:  we sound about the same.  I was diagnosed beginning of Jul and it took me until now to determine which direction I wanted to go.  Original plan was just a lumpectomy on left breast (IDC), but after MRI it was decided I had to have a MX.  Because I am a DDD, I didn't think it made any sense to do just one, so I wanted to meet with PS and determine genetic testing prior to surgery.  Thank goodness I took my time.  I feel much better knowing all is moving forward smoothly.  Having immediate reconstruction and PS said it was much easier to do both rather than try and match 1 to another.   

    My surgery is scheduled for Sep 12.  The BS does not believe there are any lymph nodes affected. The geneticst is 99% sure that this is not hereditary, but glad I am doing BMX.  I never want to go through this again.  It amazes me how many times I have read on this forum that some have gone through lumpectomy only to find out that 1) the BS didn't get enough and 2) they needed to undergo MX.  NIGHTMARE!

    Meeting with PS on Aug 23 just to go over all that is to be done, ask some final questions and do pre-op.  

    Will keep in touch. 

  • MargieC
    MargieC Member Posts: 302
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    Sarah --  I have heard the same surgery s so much easier then chemo.  Let's hope that is the case for all of us.   As for your question about managing stress.  I too am working out as much as I can - nothing like a good sweat to reduce stress.

    Have a good weekend everyone....

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,062
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    Just before I told the faculty at my school about my situation, the principal pulled me aside and told me there was another teacher on our staff who had a BMX w/reconstruction this summer! When she told me who it was, I almost fell over because we went to a memorial service less than a week before for a parent at the school who had passed away after battling BC. We spent a long time chatting, unaware of our mutual situation. Anyway, we did get a chance to speak later that day and she confirmed that the surgery was not as bad as one might think and her TE's weren't awful either. She has chosen not to say anything to anyone at our school and although I respect her choice it is definitely the complete opposite of mine. -Caryn

  • TracieN
    TracieN Member Posts: 13
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    Hello All,

    I was diagnosed 7/13 and will be having a BMX 9/15.  I have DCIS in my right breast, an am BRCA2 positive.  I am 40 years old, just married the love of my life last November after being together for 18 years.  I have 2 amazing children.  I have been reading here for about three weeks, and figured it was time to face reality and add my name to the Sept list.  The information and support on this site unbelievable. 

  • mags20487
    mags20487 Member Posts: 1,092
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    so I just had to leave this group because the surgery has been bumped to Tuesday the 23rd--yipes...so much to do to get ready but willing to make any sacrifice for now to get this done asap.  So much for my Mexico holiday--will celebrate and the end of this road

    Mags 

  • Caryn, that is just too crazy. This is everywhere! On the upside, great to have someone who can commiserate nearby - even if you can't talk about it openly at school, and also great that her experience was so positive. That's always encouraging!

    Traci - sorry you're here, but welcome to the Sept. club . . . hard to believe it's only a couple of weeks away - yikes.

    Mags - sorry to see you go and that you'll have to miss your Mexico vacay, but I being done with this is a great thing, too. I hope it goes smoothly for you - will be thinking of you on Tuesday! 

  • Therese9
    Therese9 Member Posts: 58
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    Hi all. Just typed up a post and--zing!--it vanished.  I'm tenatively scheduled for a BMX with nipple sparing surgery on September 22nd. I'm freaking out,obsessively reading these boards since I joined yesterday. Finally, I feel I've found some place where I can learn what I need beforehand. Thank you all for being so frank and open! Here's to successful and (relatively) painfree surgeries for everyone.

  • KatheW
    KatheW Member Posts: 28
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    Hi  all,

    If you would be so kind as to add me, I would like to join your group. I am scheduled for umx w/ bilateral diep September 14. I already had a mx in April; this one's for the other side. I have also had a lumpectomy with axillary dissection, chemo, and rads during the past 7 months.

    I am scared about this one!! Hoping you can help me prepare mentally and physically for it.

    Kathe