Simple Mastectomy Wednesday

Options
Simple Mastectomy Wednesday

Comments

  • home4lreb
    home4lreb Member Posts: 11
    edited February 2015

    "Simple"... there's a word to ponder.  Simple for who???  Here I am three days before a surgery that I have fought having for 5 months.  I have fought to keep my breast for 5 months.  I have undergone chemo and two lumpectomies.  With both of the lumpectomies I was reassured that there would be clear margins.  Both times the cancer had spread beyond where the surgeon anticipated.  So I was given three choices 1) mastectomy 2) another lumpectomy 3) continue with radiation and do nothing, however this option greatly increased my chances of it coming back.  After two failed lumpectomies already a third wasn't even an option for me.  Pretending like the cancer was gone and just continuing treatment so that I could be back in this situation again in 5 years is the last thing on Earth I would like to do.  So I "decided" to have the mastectomy.  I cannot have reconstruction because the plastic surgeon will not do implants because that means two more surgeries and they would have to be changed out, which means even more surgery.  I have a rare bleeding disorder that requires me to have extensive transfusions with every surgery.  The plastic surgeon suggested the flap procedure but my hematologist said no.  So here I am trying to become even remotely ok with my "decision".  Quite frankly, I am absolutely terrified.  I don't know why I feel this way.  I say to myself daily, really it's just a boob that has decided to try to kill you.  Unfortunately that doesn't help.  I get on here and I read stories of the most brave women in the world and I think to myself you CAN do this and it will be ok.  I kept a wonderful  and positive attitude through chemo and the other two surgeries with a i'm gonna kick it's a** attitude.  I have never let my cancer slow me down or drastically change who I was 6 months ago, but this upcoming surgery has completely deflated me.  I have spent the last two weeks pretending like it isn't happening and not processing it.  I know that will only make it harder in the long run, but I just can't accept it.  I feel like I am completely alone and I have nobody.  Don't get me wrong, my family has been completely supportive through all of this, but my husband is the only one who completely supported my decisions when I had the lumpectomies.  Everyone else said to just have a mastectomy and be done with it.  Everyone else doesn't have to live with being flat on one side for the rest of their lives.  My husband says he doesn't care if I only have one as I am more than just a boob to him.  The problem is that I CARE.  Why do I feel like I am just a boob?  This whole nightmare has been awful and this just makes me feel like I have lost the war.  I read stories on here where all of you ladies just said do the mastectomy with no reconstruction and I think "I wish I could be as brave as they are".  I feel so completely lost. At this point any advice would be great as I feel like I will be the only woman on Earth with a uniboob.  I know better than that, but I just feel so alone.........   

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited February 2015

    I am very sorry for what you have gone through and are still going through. I often felt like I was alone on a raft in the middle of the deep blue sea when I was first diagnosed and it was terrifying. I have no advice. Just want to say "I hear you" and I am sending you a big cyber hug.

  • glennie19
    glennie19 Member Posts: 6,398
    edited February 2015


    I always hated that term: "simple" mastectomy too.  There is nothing simple about it.

    I'm sorry that you feel alone.  There are many of us uniboobers here and we will support you however we can. Rant, whine, cry.  We know how it is. It is not easy to accept having part of your body amputated, but like you said,, it's trying to kill you, so it needs to go.

    What can we do to help?  Our very own Ariom is our fashion goddess. She knows all about foobs and bras and camisoles for afterwards. Let us know what we can do to help.

    glennie

  • Nomatterwhat
    Nomatterwhat Member Posts: 587
    edited February 2015

    Glennie, is so right.  You will love Ariom, she is the best!!!!!  I understand you feeling completely lost, as it is a hard decision to make.  I cried for days and then decided that I would rather live with no boobs than not live at all.  My husband stood beside me every doctor's appointment, every test and held the Kleenex box for me every time I tried to talk about having a BMX. He has been my rock, my soulmate, and my partner for 32 years.  He always told me that he didn't marry me for my boobs (I was no Kate Upton anyway), and as long as I was alive to grow old with him he was happy.  I didn't think I would ever be okay with no real breasts, but I really don't miss them.  I come home after work, take my "girls" off, take my hat/wig off and get comfortable.  I have even gotten to the point where I can stay flat in front of my son and his wife and sometimes I run errands that way as well.  I am sorry you are going through such a tough time, but it really does get better.  Ariom can give you a website where she is their fashion model.  She looks great!!!! 

  • glennie19
    glennie19 Member Posts: 6,398
    edited February 2015


    I must be out of touch,, who is Kate Upton??  **embarrassed**  Maybe I should google her!

    nomatterwhat,, glad that you have such a supportive hubby!!  That is a true gem.

    I mostly wear compression these days as I have developed truncal lymphedema,,, but when I'm not wearing it,, I usually just go half flat.  So today, I'm in the back of the property doing some yard work.  I saw one of the neighbors,,, really nice guy, and I need some man muscles to help me move something. He was kindly helpful,, but I have to say,, I was not wearing my compression,, just a tee shirt,, and his eyes kept flicking to my chest and quickly back up!  He knows I had BC,, helped walked my dog when I was recovering from surg,,, and now 1.5 years later,, I just find it amusing. He is not the only one,,, women do it too,, and it's just amusing to me at this point. Yes, ,I'm lop-sided!! Get over it.

    EDIT:  I looked up Kate Upton,,, OMG!  I never ever looked like that.

  • Ariom
    Ariom Member Posts: 6,197
    edited February 2015

    Hello home4lreb! I am so terribly sorry you find yourself feeling this way. None of us actually know just how we are going to react to the tough decisions, we are forced to make. Simple Mx, indeed, a man must have named that surgical procedure!

    I have to thank Glennie and nomatterwhat for the vote of confidence in my interest in foob, boob, form and prosthesis, camis, clothes and pocketed bras. The truth is I am a shopaholic, who happens to be a Uni! LOL Ask anything, and I will try to help, if i can.

    There is also a website which as started and is maintained by one of our members, Erica. It is called breastfree.org and there are stories and photos about women who have had Umx and Bmx surgery and have opted not to have reconstruction. Take a look if you want to get more of an idea of how the end result could look.

    Once you familiarize yourself with this site. you'll probably be surprised to see, how many of us there are. There are threads dedicated to Living without reconstruction.

    You can see by the responses you have received so far, that the women here will reach out to you and offer support and advice, should you want it. We understand how you feel, it isn't easy, your world has been turned upside down. Farmerlucy puts it so well, when she says she felt like she was alone on a raft, on the deep blue sea.

    I was probably fortunate, in that my Mother was a Uni too, she had a radical Mx in '94, just 4 months after my Father passed away. I was my Mother's carer and must have processed the way she handled the whole transition by osmosis. She was a really sophisticated woman who handled it all with such grace, but she had a wicked sense of humor about it, too.

    I had to spend the evening before my Umx surgery, in a motel, because the Hospital was over an hour away from where I live and I had an early SNB. Although, this probably sounds really weird, I felt like I had to disengage from my right breast, so I actually spoke to it. I said, "You've let me down, you have to go!" That really calmed me down, not for everyone, but it worked for me.

    It's great that you have great support from family .I had the same and my husband, is a rock for me too. He hadn't the slightest negative reaction to my decision to have my breast removed and his comment, when he saw my chest the day after surgery set me on a positive course from day 1. He looked at my scar and said "That will heal really well and you don't need 2 boobs, to be gorgeous!" I can't tell you how great that was for me.

    I am 14 months out, from my surgery now and although it probably sounds strange, even flippant, of me, I really just don't think about it that much now. Like Glennie, I even go half flat occasionally and I have a "D" cup on my remaining side. nomatterwhat goes flat occasionally too, there's a whole group of women who call themselves Flat and Fabulous, there's even a FaceBook page dedicated to them.

    I know you feel like you're the only one and that you feel alone right now, but you'll never be alone here. Come here often and ask anything.

    Hugs to you!


  • home4lreb
    home4lreb Member Posts: 11
    edited February 2015

    You are all so wonderful!  You have made me laugh and cry and just being able to feel like someone understands how I feel makes it better.  Ariom - I have often thought that maybe saying goodbye to it would make me feel better but it made me feel silly so i'm glad that someone else felt that way!  I think I may try that.  I will probably have tons of questions for you ladies over the next week or so!  The thought of having the binder, the incision, the drain and the tubes for my pain management makes me extremely nervous.  This is also the first time that I have had to be away from home overnight and trying to make arrangements for my kids has added to the stress.  I know I will get through this (at least my brain does)!  I just try not to think about Thursday.  I'm hoping that I will mostly sleep while I am in the hospital.  Once again thank you all for being so supportive and understanding.  I hate that I have started to communicate with all of you because of this horrible twist in life.

  • glennie19
    glennie19 Member Posts: 6,398
    edited February 2015


    My college boyfriend named my breasts Twinkie and Pinkie (can't remember why,, we were young,, you know how it is )   So Pinkie is the one who got cancer. My close friends knew about the names and we spent the couple weeks before surgery saying good bye to Pinkie.  I went on a long planned vacation to North Dakota.  The destination may sound weird but I had been to 49 of the 50 states and it was the last one.  So there were comments like:  At least Pinkie made it to all 50 states.  Glad Pinkie made it to Custer State Park, etc etc,  I was dx on 6/27,, had surg on 8/8, so it was a few weeks of saying good-bye and taking Pinkie here and there for one last visit!   

    So it is NOT silly to say good-bye. Have your own ritual.

    We are here to help with questions!  Don't let the drains scare you. They are manageable.  I put a link below in case you want to order one of these.  I lived in it post surgery.  It is a nice soft cami with pockets inside for the drains. It opens in front with velcro,,, front opening is important cuz you wont be able to put shirts over your head for a while. So you will need some button down the front kind of shirts.   You can also secure the drains to your shirt with a big safety pin,,, attach them to a lanyard around your neck,, or go to Home Depot and get a Nail Pouch,,, it has 3 pockets, ties around your waist and costs like 2 bucks.  Can't beat it.  I got one for a male friend with BC,, he had a double and had 3 drains,, it was perfect,, pocket for each drain. And he wore a button down shirt over it, not tucked in,, and you couldn't see it.     It is not very comfortable to have them just hanging,, and the hospital may have some ideas for you too. I've seen some women on here get all kinds of things from their hospital or doctors,,, me,,, I was left to deal with it all myself.

    !http://www.tlcdirect.org/Post-Surgery-Mastectomy-Camisole-Bra-American-Cancer-Society-TLC-Direct?did=65

    M: you are longer than 14 months from surg,, you are 26 months!!  I remember your 2 year anniversary!  I am now 18 months post surg.

  • crystalphm
    crystalphm Member Posts: 1,138
    edited February 2015

    Home4, You are going through what so many of us have gone through. As I tell people who ask, I am not thrilled with being flat, vnut I also know in my heart reconstruction would not make me happy either. What we all really wish for (I think) is to have never had breast cancer.

    But we dealt the breast cancer crap, so we join together and deal with feelings right here. This really is the group that we hate to be a part of, yet come to love each other, and always and in all ways, support each other.

    Please update when you are done surgery...Denise

  • home4lreb
    home4lreb Member Posts: 11
    edited February 2015

    So I am done with surgery and I am home.  Surgery went well. The drain isn't as bad as I thought it would be.  They gave me a fanny pack to put my drain and pain buster in.  The top of where my breast used to be is what hurts the most.  The doctor said that the pain buster medicine will run out in about 5 days so I am a little worried about that.  It is REALLY flat, but it isn't as bad as I thought it would be :) I feel so blessed to have you ladies to reach out to.  I cried when I saw it and if I think about what happened I tear up, but i'm sure that too shall pass.  I just wanted to send you all an update on surgery and thank you all for being there for me.  Hugs to you all.

  • glennie19
    glennie19 Member Posts: 6,398
    edited February 2015


    ((((home))))  Glad to hear that you are home and doing OK.  Get lots of rest.  Keep us posted.

  • angelia50
    angelia50 Member Posts: 381
    edited February 2015

    a doctor friend of mine once said, the only minor surgery, or in this case, simple surgery, is the one being done on somebody else.

  • Ariom
    Ariom Member Posts: 6,197
    edited February 2015

    home4lreb, I am so glad to hear you're through the surgery and doing well.It's very normal to have the sore sternum after this surgery, it is a pretty brutal surgery that we have all been through. Take it easy and listen to your body. You'll start to feel really good and it is so easy to overdo it, I found I could just about nod off mid sentence, in the beginning! LOL Let u know how you're doing.

    Glennie, I hadn't heard about Pinkie and Twinkie, great story! You're right, I don't know where I got 14 months from, I lost a year there somewhere. LOL Doesn't time fly......

    Angelia, I'd agree with that too...nothing simple about a Mx!

  • glennie19
    glennie19 Member Posts: 6,398
    edited February 2015


    Time flies when you are having "fun"!   Did I never tell my Pinkie story before?  Well, now you've heard it!  LOL!!

  • home4lreb
    home4lreb Member Posts: 11
    edited March 2015

    Clear Margins!!!!!!  There was 12mm of DCIS still left in my breast so it wasn't for nothing!  Now on to healing and getting wonderful advice from you wonderful ladies!  Greatest day of my life!!!!!

  • CassieCat
    CassieCat Member Posts: 1,257
    edited March 2015

    Congrats on that good news!

  • home4lreb
    home4lreb Member Posts: 11
    edited March 2015

    Ariom:  This one is for you since you are the "fashion goddess"!  If anyone else knows what I am talking about or has any input please feel free as this is driving me nuts!  During one of my pre surgery internet frenzies I could have sworn that I found a "bra" that had a normal looking bra on one side and a scarf like material on the other side.  I would like to get one of these so that I don't have to wear a form but my existing "girl" will still have support.  I am not crazy about sports bras as gravity and four children have taken a toll on the poor thing.  Please let me know if you know what I am referring to and if you can point me in the right direction to find something.

  • glennie19
    glennie19 Member Posts: 6,398
    edited March 2015


    YAY for clear margins!  Congrats!

    I have never seen such a bra,, but if anyone finds it, I'd love to see a pic or a link too!

Categories