It's official....I'm scared.

Kristen81
Kristen81 Member Posts: 7
edited June 2014 in Just Diagnosed

I found out on the 18th that I have IDC. Today I found out that there are more cancer cells in my already infected breast. My breast surgeon said a lumpectomy is not likely, so I opted for a bilateral mastectomy. The surgery date has not been set yet. 

At the time of the decision I felt great, but the longer it has to sink in the more scared and uncomfortable I feel. At 32 years old I'm having a hard time facing the fact that I'm getting rid of part of me. 

Comments

  • Nettie1964
    Nettie1964 Member Posts: 759
    edited June 2014

    I'm sorry you are having to deal with this at such a young age. I do not have experience with the MX, but someone will surely be along to give you some support.

    You are in my thoughts.

  • edwards750
    edwards750 Member Posts: 3,761
    edited June 2014

    Kristen - so sorry. Getting the news is something all of us can relate to. I went through a fog when I was DX until my lumpectomy and RADS were completed then the reality set in. I had to keep my game face on for my husband and youngest son and in fact still do and I am 3 1/2 years out. It's a DX none of us wanted of course or in some cases even expected but we weren't given a choice. 1 out of 8 women will get BC. You are so young to be dealing with this. It is frightening the number of young women like yourself afflicted with a condition usually reserved for older women like me. My sister and I both have it as did our mother. The good thing is we all caught it early. Sounds like you did too. 

    It's a bummer no doubt but it's also not the death sentence it used to be. 

    When the initial shock wears off you will find the courage and strength to get through this. We all did and you will too. Keep us posted and keep the faith. 

    Diane 

  • Mommyathome
    Mommyathome Member Posts: 1,111
    edited June 2014

    Kristen,

    Hi. Sorry to hear about your diagnosis. I had a bilateral mastectomy in January 2014. I too, had/have a difficult time emotionally about "losing" part of myself to the cancer. I still have moments where I can't believe this has happened to me! But I also have moments where I say, I won, not the flipping cancer!!!! I have been seeing a social worker at a local cancer center. The first time we met, well I cried the whole hour! I couldn't talk about having cancer, shoot I was dizzy walking into the building and kept saying to myself omg I have cancer!! Walking in there made it real. That first meeting was tough, but boy was it needed!!! This may be something you'd be interested in looking into. 

    How was your diagnosis determined? I had calcification on my mammogram. We went immediately (like the next day) to do a stereotactic biopsy. Through the biopsy she found ADH- this is pre cancer cells. She said she needed to do a lumpectomy so we scheduled that and it's then that the DCIS, LCIS and more ADH was found. I always said that I'd have a mastectomy if there was any cancer or possibility of cancer. My mom had breast cancer as well as my aunt. The doctor told me I has two options- another lumpectomy (because my margins weren't clean), plus radiation and tamoxifen for 5 years or BMx. This for me was a no brainer. I immediately called her and said I wanted to schedule the BMx. Yes the decision was easy, then it sinks in and you realize what that means. And it sucks!!! But that was a time that I felt I could control something... No I couldn't control the fact that I had cancer but I could control how I was going to "deal" with. I had my exchange on June 2 and still sometimes am like damn! I had cancer!!! It's something that's always on my mind but with time and the support from friends, family, women on this forum and the cancer social worker I feel stronger each day! I hope the same for you!! 

  • vbishop
    vbishop Member Posts: 616
    edited June 2014


    Kristen -

    I had BMX last October followed immediately by reconstruction.  I am not going to lie to you, this surgery is a shock to your system.  It threw my thyroid hormones all out of whack.  I was back at work after two weeks, but I worked 1/2 days the first week back in the office.  I tired easily, so be sure and get as much rest as possible. 

    Be sure to have help at home. Opening the fridge, freezer, or even a door was a challenge for the first couple of weeks.  DO NOT OVER DO IT!!  I popped a stitch mopping - my doc was not happy with me, cuz I waited until hubby and daughter were out of the house.  I am not known for allowing others to help me, so my doctor made me sign a document swearing that I would allow my family to help.  He wasn't going to release me from the hospital without it cuz he knows I am stubborn when it comes to my independence.  I am glad I listened to him.  I rather enjoyed being waited on for a bit.  It did get old after the first week though.

    You can also look on the bright side. 

        You have the opportunity to go bigger if you so desire.

        Any boob work in the future is covered under insurance because of the cancer.

        You will never have to wear a bra again if you don't want to

        While your friends age and start to sag, you will remain perky!

    See?  There is an upside!  And, depending on your reconstruction selected, if you select one at all, you could possibly get a tummy tuck or, in my case, liposuction, all covered by insurance (my lypo is for fat grafting after my new girls settle - I see my PS next week to discuss).

    Sorry you are having to deal with this, at any age!  Best of luck.  Don't hesitate to PM me if you have questions.

  • Kristen81
    Kristen81 Member Posts: 7
    edited June 2014

    Thank you ladies so much for being so kind and informative. 

    How long does it take to get used to having had a bilateral mastectomy? I'm so scared of looking in the mirror and crying . I know that this is better than the alternative, but so hard for me to accept. 

    Mommyathome, about 7 weeks ago I noticed my nipple had suddenly become retracted and a week later I felt a lump. After a mammogram and ultrasound I had a biopsy...the next day I was diagnosed. The cancer itself wasn't a complete blindside, it's the bilateral mastectomy that's getting to me, which is so silly and trivial!  I mean, they're just boobs!

  • Kristen81
    Kristen81 Member Posts: 7
    edited June 2014

    Vbishop, thank you for the list of positives! It made me laugh and put a smile on my face, which hasn't been easy to do today!   

  • SouthernBling
    SouthernBling Member Posts: 63
    edited June 2014

    Kristen:

    I'm dropping in from the December 2013 Chemotherapy and March 2104 Surgery forums. I had a BMX on March 31st. I am also "young" for this according to my breast surgeon and plastic surgeon, and at 45 I'll take that! 

    The BMX was a little tough, but you will get through it. I only took 3 weeks off of work, and I walked almost everyday during recovery. I would recommend that you do that if possible. I was fortunate to have nipple sparing surgery, and maybe you will be also. If you have TEs like a lot of us do, hopefully you will come out of surgery with at least a "mound." My incision was an upside down "T", and at almost 3 months out my scars are not bad at all. They are a pale pink and white. I have 2 - 3 "fills" to go, and then will get my exchange date. I am finding the TEs a little "weird" but certainly tolerable. I'm not much of a "boob girl", but I think my new girls look pretty good considering the alternative! In fact, I'm taking the "new girls" to the beach next week! They will not get as much sun as they normally would, but they will be there anyway!

    There are lots of sisters on this site who have gone through this or are going through it now. Like I said, I'm a member of the March 2014 Surgery Sistas, but I am finding the June 2014 Surgery Sistas very informative and a really FUN group. If you haven't seen the Young with Breast Cancer forum, you might want to go there too. I don't follow it as much since I'm probably not THAT young, but I am sure they are equally as fabulous and informative as the other ladies on this site!

    I will keep you in my prayers!!!

  • vbishop
    vbishop Member Posts: 616
    edited June 2014


    Kristen -

    I came out of surgery the same size I went in.  Before you get excited, my normal size was barely a B and the doctor was able to start off with 300, the original weight of my non-cancerous breast.  Since I have a small frame, it only took two fills to get me to my final 435, which for me is a D.  To put this in perspective, I have a friend who is very tall and currently a D.  She will have a BMX and reconstruction the end of July.  The doctor will start her off at about 350, but will go to approximately 500 or 550 to get her to a D.  See the difference?  500 or better would make me look like a freak. 

    It took about three months before the new girls quit being "visitors" and felt like a part of me.  Although I don't have to wear them, I have become obsessed with cute bras from Victoria's Secret.  I now have 12 bras.  I have never had more that 3 at a time in my life.  Never!  See what going from a B to a D does to a girl!  Go big or go home - that's my motto!!

    Hope this helps!  Good luck!

    Oh...and nipple sparing was not an option for me.  My scar is right across the center of each breast, but fading fast.  I chose not to have fake nipples and a tattooed areola because I didn't want to look cold all the time!

    You can check out the earlier posts of my blog where I talk about the surgery and reconstruction:  www.vjbishop.tumblr.com

     

  • AZ85048
    AZ85048 Member Posts: 2,613
    edited June 2014

    Kristen81 - Hi, and welcome to the 'club no one ever wanted to join'.  I'm so sorry you have to go through this at such a young age, but you can do this! Unfortunately
    there are thousands of us that have gone before you, as you can see by this
    forum. I was diagnosed in early July 2013 with DCIS and then when they
    went in to do a left breast excision three weeks later, they found I had LCIS and ALH as well. As I am a DES daughter and have suffered with a severe case
    fibrocystic breast disease for over twenty years, the choice to have a BMX
    was a no-brainer - but then again it was MY choice. No one forced me
    or hurried me. But once I made up my mind, I wanted it done and done
    as soon as possible. From the tone of your post, I'm afraid you're not
    that comfortable with what's about to happen.

    I'm not going to lie to you; the BMX is tough - both physically and emotionally - but you can get through it.
    Give yourself a chance to get used to the idea and try to find some peace in
    the fact that this will essentially eliminate the enemy. 

    Give yourself plenty of time
    to heal and don't push yourself as so many of us are prone to do. That will pay off in the long run. This is no time to be a hero.  Accept the help that friends and family will offer - they will all want to do something, but they just don't know what you need.  

    If you start reading the
    forum, there are lists of what to take to the hospital, how to get your house
    ready, etc., etc. Just remember If you need help, advice, or just a laugh
    and a stupid game to take your mind off everything, come here. There is
    always someone here, so never be afraid to reach out. No one knows how
    this works better than the women who have already gone through it.

    I wish you nothing but the best and trust me, once you have a surgery date and a treatment plan in place, things will get easier... One step at a time, one foot in front of the other.  Please let us know how you're doing...

    image

  • brandyrose
    brandyrose Member Posts: 29
    edited June 2014

    Hi Kristen, 

    I'm sorry this happened to you. And to everyone. It's a terrible club to have to join, but I've been so grateful for the women around me who have listened or given advice. 

    I was diagnosed 6 days ago with breast cancer. No history in the family, and just in one breast, so I chose to have a mastectomy which is scheduled in a week. Everything feels so fast, and I am constantly second guessing myself. Should I get a lumpectomy instead? Should I get the double mastectomy? How do I pay for my time away from work. I'm Canadian, so luckily all the medical is paid for, but it's still a chunk of time off of work I wasn't expecting. Not to mention I just got back from a 5 week vacation in New Zealand I am still paying for. 

    I am 30 years old, and it came as a complete shock to me. I have faced everything with a positive attitude and a smile, but the fact remains I am losing a breast and probably my hair. IT is scary. But I just keep taking one step forward, and another and another. That's all we can do. 

    I wish you the best, I wish us all the best. 

    Brandy

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