what to expect??, surgery Nov. 30th, bi-lat. w/reconstruction (spacers)

fightin it
fightin it Member Posts: 11
edited March 2014 in Breast Cancer #1
I have been on this site reading for the last 2 hours. This is my first post, a little nervous.

I was diagnosed (Nov. 5th) with CDIS, early stages. I have chosen a bilateral masectomy with reconstruction (spacers). I think I'm in the "scared" stage right now. Been making decisions left and right and now I'm sit here waiting for the 30th.....

any advice??

Nancy
«1

Comments

  • Marcia527
    Marcia527 Member Posts: 2,729
    Hi Nancy
    You make the best decision for you and then try to take your mind off of it and keep busy. Because time flies when you are busy. It also flies when you're having fun so do fun things and the 30th will be here before you know it. Good luck but it's good you found the cancer in early stage.
  • fightin it
    fightin it Member Posts: 11
    Marcia527 said:

    Hi Nancy
    You make the best decision for you and then try to take your mind off of it and keep busy. Because time flies when you are busy. It also flies when you're having fun so do fun things and the 30th will be here before you know it. Good luck but it's good you found the cancer in early stage.

    hi
    thanks for writing back, I really appreciate it. Busy hu? I can do that, I'm the queen of busy...three loads of laundry done before 9am this morning.
    thanks
  • jlyzac
    jlyzac Member Posts: 2
    I'm with you....I just had a
    I'm with you....I just had a breast reduction done 3 weeks ago. Two days after, I got the news that I now have breast cancer in my right breast, and it NEEDS to be removed. I'm now trying to find out all I can about my cancer. I too am scared.
  • jlyzac
    jlyzac Member Posts: 2

    hi
    thanks for writing back, I really appreciate it. Busy hu? I can do that, I'm the queen of busy...three loads of laundry done before 9am this morning.
    thanks

    I saw your picture, and my
    I saw your picture, and my heart went out to you...You are much younger than I am,I just turned 65 on the 10th of November.We both have soooo much to live for. I will be keeping you in my prayers. I have an appointment next Friday to see if my cancer has spread to any organs. Needless to say, I am scared. It is then that I will make my decision on having only my right breast removed, or having both breasts remover...
  • e_hope
    e_hope Member Posts: 370
    Hope this helps...
    Great news they/you caught it early...

    Hope this helps...


    I had a double mastectomy with expanders...

    My experience... I was in hosp for 23 hours...
    (honestly the first 12 hours is the worst pain ever)

    I came home with 2 drains one on each side. (which I took care of myself)
    My drains were in a total of 14 days
    * I would wear sweat pants with pocket and put my drains in
    the pockets, They will tell you not to do this for fear you might
    rip the drains out... but YOU WON'T FORGET THEY ARE THERE
    **FOR ME.. the drains were the worst part it.. they are VERY unfortable
    and its was very hard to sleep with them.
    I was surgically glued back together so I didn't have incisions to care for
    The pain is going to be there but with the use of the pain med was easily managed
    (in the beginning take the meds regularly)
    You will have a lot of pressure and tightness
    esp when they start filling the expanders
    (my plastic surgeon starting filling mine 1 week after surgery)
    (and I had weekly fills till size I wanted, for 6 weeks)
    You won't be able to put your arms over your head...
    so before anyone leaves you make sure anything you need is low enough to reach.
    You can't do any lifting... I have 3 small kids...
    (so I had someone at the house at all times to help care for them)
    You will be tired, so rest when you need to
    If your getting lymph nodes out, you should get a small mastectomy pillow
    it goes btw arm and body to help with the tenderness and discomfort when you sleep
    *honestly, I cant remember who sent it to me.. I think breast services*
    where I had my mammogram at...
    (if you cant find one I can get you the measurements and you could make your own
    its just a little fabric pillow, just PM me)



    You can managed with some pre-planning...
    1 easy meals if friends ask what they can do to help have them cook meals
    2 have things you need low to reach
    3 have either water bottles, or what ever you drink accessible bc you won't be able
    to lift heavy things (ie. gallon milks)
    4. and just rest.. its what your body needs
    5. the pain meds will make you constipated so be prepared !!!!!

    Hope this helps...
    Good luck to you
  • joy2u
    joy2u Member Posts: 9
    bi-lat wi/ reconstruction
    Hi Nancy, I know exactly the anxiety you are facing. I just had my Bi-lat w/reconstruction 1 1/2 weeks ago on Nov.3rd. I was SOOO nervous the night before, and just did as much as I could all the month before not to dwell on it. Believe me, it will come up on you soon and you know what, once you wake up from surgery, all that anxiety is gone!!! In fact, my anxiety was gone the morning I got up to go to surgery. I guess I finally came to peace with the whole surgery. You look like you're in good shape and if that's so, I think recovery will be a little easier for you. If there's any great advice I could give you, start stretching right now if you don't already. I was able to stretch just 3 nights following surgery and it's helped me sleep better at night and helped with my range of motion and flexibility. I'm not even 2 weeks post surgery and I'm able to sleep on my side and do so much more than I thought I would. The first 3 days post surgery are the worst. After that you start seeing a difference every day, but it goes by so quickly because you sleep a lot and you're actually releived you don't have any thing to get done.

    Will you have someone there to help you each day? Try to arrange to have someone cook for you and get grocieries and take care of your basic needs. Best of luck to you and I think you'll be glad you made this decision. You won't have to worry about breast cancer ever again, or have all those tests, you'll be able to control your hormones as you get older. I just think it's the way to go. But that's my opinion
  • survivorbc09
    survivorbc09 Member Posts: 4,374 Member
    I had a lumpectomy, but, I
    I had a lumpectomy, but, I wanted to wish you good luck Nancy and to welcome you to this site.
  • seof
    seof Member Posts: 819 Member
    hi
    ehope gave you some great advise, I would add afew things:

    1. You can get mastectomy camisoles..very comfy, with pockets designed to hold drains. My Sister-in-law bought one at the hospital gift shop and I ordered one from TLC. You can get a free catalog on the American Cancer Society website.

    2. In the shower and elsewhere it is handy to have a strip of gauze or a ribbon, or shoelace or something to tie around your neck to pin the drains to when you do not have clothes on with pockets to put them in.

    That's all I can think of for now. Best wishes, seof
  • Dot53
    Dot53 Member Posts: 239 Member
    Hi Nancy,
    I am having a

    Hi Nancy,

    I am having a bilateral with reconstruction on Dec 5. I am also in the petrified stage.. I try not to think about it too much b/c I don't want to keep crying... I wish I had some advice for you but am not sure what to expect myself..

    I will keep you in my thoughts and prayers.. you are not alone..

    Dot
  • Dot53
    Dot53 Member Posts: 239 Member
    jlyzac said:

    I'm with you....I just had a
    I'm with you....I just had a breast reduction done 3 weeks ago. Two days after, I got the news that I now have breast cancer in my right breast, and it NEEDS to be removed. I'm now trying to find out all I can about my cancer. I too am scared.

    Hi jlyzac,
    My cancer was

    Hi jlyzac,

    My cancer was found exactly the same way yours was. I had breast reduction on Sept 25 and they told me a few days after... not the news I was expecting to hear..

    The Doctor said that I had to have a bilateral mastectomy b/c of my strong family history..
    (my mom and both sisters had breast cancer). I won't know about chemo until they check my lymph nodes during the surgery..

    As I told Nancy, I am petrified.. I just want to get it over with so I can get on with my life..

    Hopefully, we will all find some peace soon..

    Dot
  • fightin it
    fightin it Member Posts: 11
    jlyzac said:

    I'm with you....I just had a
    I'm with you....I just had a breast reduction done 3 weeks ago. Two days after, I got the news that I now have breast cancer in my right breast, and it NEEDS to be removed. I'm now trying to find out all I can about my cancer. I too am scared.

    Wanted to let you know that
    Wanted to let you know that I was thinking about you. And to thank you for your posts. This is so diffucult and it helps to know there are others out there.
    My heart is with you as you go through all of this as well.
    Nancy
  • fightin it
    fightin it Member Posts: 11
    e_hope said:

    Hope this helps...
    Great news they/you caught it early...

    Hope this helps...


    I had a double mastectomy with expanders...

    My experience... I was in hosp for 23 hours...
    (honestly the first 12 hours is the worst pain ever)

    I came home with 2 drains one on each side. (which I took care of myself)
    My drains were in a total of 14 days
    * I would wear sweat pants with pocket and put my drains in
    the pockets, They will tell you not to do this for fear you might
    rip the drains out... but YOU WON'T FORGET THEY ARE THERE
    **FOR ME.. the drains were the worst part it.. they are VERY unfortable
    and its was very hard to sleep with them.
    I was surgically glued back together so I didn't have incisions to care for
    The pain is going to be there but with the use of the pain med was easily managed
    (in the beginning take the meds regularly)
    You will have a lot of pressure and tightness
    esp when they start filling the expanders
    (my plastic surgeon starting filling mine 1 week after surgery)
    (and I had weekly fills till size I wanted, for 6 weeks)
    You won't be able to put your arms over your head...
    so before anyone leaves you make sure anything you need is low enough to reach.
    You can't do any lifting... I have 3 small kids...
    (so I had someone at the house at all times to help care for them)
    You will be tired, so rest when you need to
    If your getting lymph nodes out, you should get a small mastectomy pillow
    it goes btw arm and body to help with the tenderness and discomfort when you sleep
    *honestly, I cant remember who sent it to me.. I think breast services*
    where I had my mammogram at...
    (if you cant find one I can get you the measurements and you could make your own
    its just a little fabric pillow, just PM me)



    You can managed with some pre-planning...
    1 easy meals if friends ask what they can do to help have them cook meals
    2 have things you need low to reach
    3 have either water bottles, or what ever you drink accessible bc you won't be able
    to lift heavy things (ie. gallon milks)
    4. and just rest.. its what your body needs
    5. the pain meds will make you constipated so be prepared !!!!!

    Hope this helps...
    Good luck to you

    Thanks so much
    Your post really helps, Thank you, thank you.
    I know I'm not the first to experience this and it is REALLY helpful to hear all of your tips.
    I will look into getting the camisole with pockets,.
    I am very fortunate that I have older kids that can tend to their own needs (for the most part).
    Thanks again, I can't tell you how much I appriciate it. I hope you are doing well.
    Nancy
  • fightin it
    fightin it Member Posts: 11

    I had a lumpectomy, but, I
    I had a lumpectomy, but, I wanted to wish you good luck Nancy and to welcome you to this site.

    Thanks
    I feel very comforted when I'm on this site. You all "get it", which is nice.
  • brenda247
    brenda247 Member Posts: 124
    hey
    i just wanna say i wish you the best and hope everything goes well for you!! i had a mastectomy on april 20 2009 on my left breast.. took 6 rounds of chemo just finished oct 1 2009.. it was a hard road my counts were out of whack most of the time.. but thank god i made it just worries me sometimes though guess its when you have it you always worry.. well everyone here is wonderful and they helped me in more ways than one.

    good luck to you prayers are coming your way!!
    be strong everything will be ok!!
  • fightin it
    fightin it Member Posts: 11
    Dot53 said:

    Hi Nancy,
    I am having a

    Hi Nancy,

    I am having a bilateral with reconstruction on Dec 5. I am also in the petrified stage.. I try not to think about it too much b/c I don't want to keep crying... I wish I had some advice for you but am not sure what to expect myself..

    I will keep you in my thoughts and prayers.. you are not alone..

    Dot

    Hi Dot
    If you read ehope's entery it might help....she helped me a lot as to what to expect. Knowing that there are others in our same "spot" helps some, but I know it's still scary. I've been trying to relieve my fear by staying busy (some other advice I got from this site). It doesn't always do the trick but there are times I think...wow, I haven't thought about cancer in 15 min. !!
    If there is one thing I consistently read on this site is that it gets better with time and right now that's what I'm relying on.
    Know that you aren't alone and that there are so many people praying for you (myself included).

    Post your thoughts and questions. I have no doubt that they will be comforted and answered.

    take care of yourself and be kind to yourself....it does help.

    Nancy
  • jikaras
    jikaras Member Posts: 58
    DCIS
    I also had DCIS with immediate reconstruction and sentinel node biopsy.

    I was in the hospital for 2 nights, as I needed to adapt to the pain meds. Once they found the right meds to give me, I was fine. I really didn't experience any pain; there really isn't any feeling left.

    The suggestions to get something to put the drain plugs in is right on. I actually found some hoodies that had pockets on the outside and inside. I'd just put the plugs in there.

    Something else to consider is that you'll need to shower with someone as you won't be able to wash your hair. My husband loved it, as he's bald and he was able to finally know what it's like to wash a full head of hair!

    When the spacers are put in, its true that they are very uncomfortable. Just remember that this is only temporary, the implants feel much better.

    Good luck to you! If you have any questions and want to e-mail offline, I'm at [email protected]

    Jill
  • cvolk821
    cvolk821 Member Posts: 36
    e_hope said:

    Hope this helps...
    Great news they/you caught it early...

    Hope this helps...


    I had a double mastectomy with expanders...

    My experience... I was in hosp for 23 hours...
    (honestly the first 12 hours is the worst pain ever)

    I came home with 2 drains one on each side. (which I took care of myself)
    My drains were in a total of 14 days
    * I would wear sweat pants with pocket and put my drains in
    the pockets, They will tell you not to do this for fear you might
    rip the drains out... but YOU WON'T FORGET THEY ARE THERE
    **FOR ME.. the drains were the worst part it.. they are VERY unfortable
    and its was very hard to sleep with them.
    I was surgically glued back together so I didn't have incisions to care for
    The pain is going to be there but with the use of the pain med was easily managed
    (in the beginning take the meds regularly)
    You will have a lot of pressure and tightness
    esp when they start filling the expanders
    (my plastic surgeon starting filling mine 1 week after surgery)
    (and I had weekly fills till size I wanted, for 6 weeks)
    You won't be able to put your arms over your head...
    so before anyone leaves you make sure anything you need is low enough to reach.
    You can't do any lifting... I have 3 small kids...
    (so I had someone at the house at all times to help care for them)
    You will be tired, so rest when you need to
    If your getting lymph nodes out, you should get a small mastectomy pillow
    it goes btw arm and body to help with the tenderness and discomfort when you sleep
    *honestly, I cant remember who sent it to me.. I think breast services*
    where I had my mammogram at...
    (if you cant find one I can get you the measurements and you could make your own
    its just a little fabric pillow, just PM me)



    You can managed with some pre-planning...
    1 easy meals if friends ask what they can do to help have them cook meals
    2 have things you need low to reach
    3 have either water bottles, or what ever you drink accessible bc you won't be able
    to lift heavy things (ie. gallon milks)
    4. and just rest.. its what your body needs
    5. the pain meds will make you constipated so be prepared !!!!!

    Hope this helps...
    Good luck to you

    e_hope is the best!
    Nancy,

    I sent the exact S.O.S. message a couple of weeks ago, because my surgery was Nov 12 (bilateral with expanders) and e_hope was spot on with her descriptions and info. Everyone on this board has a wealth of information for you at a time when you probably don't know enough to know what to ask.

    Don't plan on driving until you've had your drains removed AND you are off of your pain meds. Now, while everyone wants to help, set up your rides to your post-op appts.

    Connie
  • e_hope
    e_hope Member Posts: 370
    also...
    LOL.... driving.. its a challenge..

    I did not drive for about the first 3 weeks.. Its very difficult till you get some range of motion back. esp trying to make turns and park.

    LOL.... I remember the my first time behind the wheel after my surgery... I sat in the parking lot trying to figure out how I was going to park the car into a space..

    also... BEFORE you leave the hospital... make sure they give you your mastectomy exercises (* I was not given mine till weeks after surgery) and if you want demand a session with the Physical therapist to go over your exercises.. I wish I had...

    ** I know, they are trying to make it routine that all woman are seen prior to leaving the hosp.


    GOOD LUCK TO YOU...

    hOPE THIS INFO IS HELPFUL

    please feel free to pm me if you have anyother questions
  • fightin it
    fightin it Member Posts: 11
    cvolk821 said:

    e_hope is the best!
    Nancy,

    I sent the exact S.O.S. message a couple of weeks ago, because my surgery was Nov 12 (bilateral with expanders) and e_hope was spot on with her descriptions and info. Everyone on this board has a wealth of information for you at a time when you probably don't know enough to know what to ask.

    Don't plan on driving until you've had your drains removed AND you are off of your pain meds. Now, while everyone wants to help, set up your rides to your post-op appts.

    Connie

    thanks Connie
    Connie,
    Thanks for the heads up. I have had a ton of people ask what they can do, now I have a couple of things for them. How are you doing after your surgery? Are you healing quickly?

    Nancy
  • fightin it
    fightin it Member Posts: 11
    e_hope said:

    also...
    LOL.... driving.. its a challenge..

    I did not drive for about the first 3 weeks.. Its very difficult till you get some range of motion back. esp trying to make turns and park.

    LOL.... I remember the my first time behind the wheel after my surgery... I sat in the parking lot trying to figure out how I was going to park the car into a space..

    also... BEFORE you leave the hospital... make sure they give you your mastectomy exercises (* I was not given mine till weeks after surgery) and if you want demand a session with the Physical therapist to go over your exercises.. I wish I had...

    ** I know, they are trying to make it routine that all woman are seen prior to leaving the hosp.


    GOOD LUCK TO YOU...

    hOPE THIS INFO IS HELPFUL

    please feel free to pm me if you have anyother questions

    Thanks again
    Thanks again for the good tips and advice. I keep waiting for the days to pass quickly....they really aren't.

    I did have a fantastic day with my two girls. I took them to a movie, The Blind Side, it was great.

    thanks ehope....I really appriciate your words of advice and encouragement.
    Nancy