Having bi-lateral mastectomy July 14, 2011

Options
gail64ga
gail64ga Member Posts: 1
I was diagnosed with Infiltrating Lobular Carcinoma in right breast on June 11th. I have decided to have bi-lateral with expander for reconstruction surgery. I am having my good days and bad days. Is this normal? I know this is the best option for me, but I am still very scared. I am 64 and had breast reduction done in the late 1970s. I lost 50 lbs which resulted in half of my right breast decreasing in size. This is how they found the cancer. My breast had a lot of scarring and are very dense.

The surgeon is going to save the outer skin, but not the nipples.

I have questions about recovering time, what types of bras to take to the hospital, type of clothing to wear after, supplies needed at home (dressing for surgery site) during recovery, how much pain, how to manage the drainage tubes, length of time for expanders to achieve desired breast size.

I am planning to sleep in a recliner for a couple of weeks of surgery. Is this a good idea.

I am sure I will get a answers to these question on my pre-op July 7th. I am constantly planning everything in my head as well as visualizing the surgery.

I am welcome to any suggestions.


Thanks,

Gail
«1

Comments

  • poplolly
    poplolly Member Posts: 346
    Options
    Gail,
    The first thing to

    Gail,

    The first thing to do is get a notebook and write down all your questions about the surgery, etc. I always planned ahead and this served two purposes: it eased my mind to get everything on paper, and it was a useful tool when talking to the doctor. This is the right place to be because there is always someone here who can answer your questions. I had the bi-lateral mastectomy with no reconstruction. I'm not sure about what happens with that. But I didn't need any bras at the hospital. They sent me home in some kind of cotton thing. The nurses gave me instructions on taking care of the drains and changing bandages. I wore pj's that were loose at the top and that buttoned up for about a week. If you're comfortable in the recliner, then that's the place to sleep. I did fine in the bed but I just couldn't sleep on my surgery side at first. I started arm exercises almost immediately so my arm wouldn't tighten up and the doctor's have those exercises in a pamplet. My pain was minimual, I thought, considering the surgery. I don't know in terms of reconstruction.

    Ask any questions on this site, and someone has experienced it. Welcome!

    Judy
  • pratt
    pratt Member Posts: 16
    Options
    Gail, just slow down, and take a deep breath. To stop the noise in my head I repeat to my self. "Be Still and Know That I Am God". We are not incontrol of this, but God is. Hugs to you
  • grams2jc
    grams2jc Member Posts: 756
    Options
    Good days and Bad are normal
    Sounds to me like you are getting everything lined out and ready to go so that your experience is easier, I think that's great. I was diagnosed last November on a Monday and had left mast. on Friday...not much prep time there and because surgery was on Friday I don't think I got all of the info I might have before I went home on Sunday. I am sure that you will get most of your answers from your pink sisters here but don't forget that you can "google" almost anything.

    I had no bra issues, only had 1 breast left and the bandage on the other side evened things out a little, plus it was November so I could wear a zip up hoodie, nice and baggy, with a cami with large arm holes underneath. Clothes that zip or button down the front make a huge difference. Don't be intimidated by the drains. Yea they look gross but they are supposed to. I had to set an alarm to remember to dump them at the same times each day so I could accurately let my surgeon now what the output was. This helped me get them out quicker, and they will tell you what colors of drainage to watch for, etc. etc.

    With having only 1 breast removed I used the pain meds offered at the hospital but did not take anything stronger than Advil or Tylenol when I got home, didn't even fill the pain meds script. That being said, I was able to sleep in my own bed on my right side which made me more comfy than having to sleep in a recliner and I believe being able to rest well aids healing.

    I was off work 2 weeks with the surgery, don't know if your bilateral and expanders may make that longer, one of the ladies with bi-lateral surgery can let you know more about that. Of course the surgeon did not want me to drive as long as I had the drains, and if I were taking pain meds which I wasn't.

    I must say that for me cancer has been so much harder mentally than physically. I still have good days and bad, holidays are hard as I try to imagine what it would be like without me there, it sneaks up on me sometimes. I think that is to be expected. I have learned not to be a hero, I take my anti-anxiety meds when it starts getting to me and do my best to focus on the positive. You can always bring your concerns here, somebody will know exactly how you are feeling.

    Wishing you an easy and speedy surgery and recovery,

    Jennifer
  • DebbyM
    DebbyM Member Posts: 3,289 Member
    Options
    poplolly said:

    Gail,
    The first thing to

    Gail,

    The first thing to do is get a notebook and write down all your questions about the surgery, etc. I always planned ahead and this served two purposes: it eased my mind to get everything on paper, and it was a useful tool when talking to the doctor. This is the right place to be because there is always someone here who can answer your questions. I had the bi-lateral mastectomy with no reconstruction. I'm not sure about what happens with that. But I didn't need any bras at the hospital. They sent me home in some kind of cotton thing. The nurses gave me instructions on taking care of the drains and changing bandages. I wore pj's that were loose at the top and that buttoned up for about a week. If you're comfortable in the recliner, then that's the place to sleep. I did fine in the bed but I just couldn't sleep on my surgery side at first. I started arm exercises almost immediately so my arm wouldn't tighten up and the doctor's have those exercises in a pamplet. My pain was minimual, I thought, considering the surgery. I don't know in terms of reconstruction.

    Ask any questions on this site, and someone has experienced it. Welcome!

    Judy

    Wishing you good luck Gail
    Wishing you good luck Gail with your surgery!


    Hugs, Debby
  • survivorbc09
    survivorbc09 Member Posts: 4,374 Member
    Options
    pratt said:

    Gail, just slow down, and take a deep breath. To stop the noise in my head I repeat to my self. "Be Still and Know That I Am God". We are not incontrol of this, but God is. Hugs to you

    I had a lumpectomy with rads
    I had a lumpectomy with rads Gail, so, I am not much help with your questions. But, I want to wish you good luck.


    Prayers and hugs,


    Jan
  • jo jo
    jo jo Member Posts: 1,175
    Options
    Welcome Gail
    Good days and bad days...we all totally understand that. I had a bilateral with expanders then later got the implants. The mastectomy was a little rough in my experience. Recovery time was alot longer with the expanders but to me it was worth it in the long run. I had to sleep in a reclined position for awhile cuz i couldnt sleep any other way and your diffenantly going to need someone to help you for a little while. I also had dense breast and yep they take the nipples too. While your in the hospital most of them give you what you need to wear. I had to wear a binder vest for about 2-3 months. I also was given a camosole with added boob pads (you could remove the pads if you wanted) the camasole also had a pouch to hold your drain tubes which was really nice. I didnt need any extra dressing for home cuz during this time your seeing your doc on a regular basis and unsually they do all that for you. Also I really didnt have alot of bandges anyway.
    Once you heal and the incisions are looking good they can start the fill of the expanders. Everyone is different in their choice of scheduling. I got a fill once a week and only did 25 cc's each fill, some did 100cc's a week, some did 50cc's every 2 weeks...so it depends on you and your skin and how much you can handle. I didnt have alot of skin to work with thats why i only did 25cc's a week. Be careful cuz if you have thin skin like me i had to watch it constantly cuz i kept getting infections from the stitches and the incision kept tryin to open on me. Not saying that is going to happen to you but some advice is to take the fills slow...dont be in such a hurry to get them all filled up. The faster you do it the more likely youll have more problems like stretch marks and causing more pain. I had my fills all the way thru chemo. The fills itself didnt hurt me but afterwards with it stretching the skin and muscles sometimes it got sore and sometimes it didnt. Keep in mind the expanders are going to be hard...most everyone refers them to rocks in your chest but they are doable.
    Hopefully i answered some concerns and best wishes on your surgery!
  • Megan M
    Megan M Member Posts: 3,000
    Options
    jo jo said:

    Welcome Gail
    Good days and bad days...we all totally understand that. I had a bilateral with expanders then later got the implants. The mastectomy was a little rough in my experience. Recovery time was alot longer with the expanders but to me it was worth it in the long run. I had to sleep in a reclined position for awhile cuz i couldnt sleep any other way and your diffenantly going to need someone to help you for a little while. I also had dense breast and yep they take the nipples too. While your in the hospital most of them give you what you need to wear. I had to wear a binder vest for about 2-3 months. I also was given a camosole with added boob pads (you could remove the pads if you wanted) the camasole also had a pouch to hold your drain tubes which was really nice. I didnt need any extra dressing for home cuz during this time your seeing your doc on a regular basis and unsually they do all that for you. Also I really didnt have alot of bandges anyway.
    Once you heal and the incisions are looking good they can start the fill of the expanders. Everyone is different in their choice of scheduling. I got a fill once a week and only did 25 cc's each fill, some did 100cc's a week, some did 50cc's every 2 weeks...so it depends on you and your skin and how much you can handle. I didnt have alot of skin to work with thats why i only did 25cc's a week. Be careful cuz if you have thin skin like me i had to watch it constantly cuz i kept getting infections from the stitches and the incision kept tryin to open on me. Not saying that is going to happen to you but some advice is to take the fills slow...dont be in such a hurry to get them all filled up. The faster you do it the more likely youll have more problems like stretch marks and causing more pain. I had my fills all the way thru chemo. The fills itself didnt hurt me but afterwards with it stretching the skin and muscles sometimes it got sore and sometimes it didnt. Keep in mind the expanders are going to be hard...most everyone refers them to rocks in your chest but they are doable.
    Hopefully i answered some concerns and best wishes on your surgery!

    I want to wish you good luck
    I want to wish you good luck and I will be praying for a smooth recovery for you too.


    Hugs, Megan
  • Ritzy
    Ritzy Member Posts: 4,381 Member
    Options
    grams2jc said:

    Good days and Bad are normal
    Sounds to me like you are getting everything lined out and ready to go so that your experience is easier, I think that's great. I was diagnosed last November on a Monday and had left mast. on Friday...not much prep time there and because surgery was on Friday I don't think I got all of the info I might have before I went home on Sunday. I am sure that you will get most of your answers from your pink sisters here but don't forget that you can "google" almost anything.

    I had no bra issues, only had 1 breast left and the bandage on the other side evened things out a little, plus it was November so I could wear a zip up hoodie, nice and baggy, with a cami with large arm holes underneath. Clothes that zip or button down the front make a huge difference. Don't be intimidated by the drains. Yea they look gross but they are supposed to. I had to set an alarm to remember to dump them at the same times each day so I could accurately let my surgeon now what the output was. This helped me get them out quicker, and they will tell you what colors of drainage to watch for, etc. etc.

    With having only 1 breast removed I used the pain meds offered at the hospital but did not take anything stronger than Advil or Tylenol when I got home, didn't even fill the pain meds script. That being said, I was able to sleep in my own bed on my right side which made me more comfy than having to sleep in a recliner and I believe being able to rest well aids healing.

    I was off work 2 weeks with the surgery, don't know if your bilateral and expanders may make that longer, one of the ladies with bi-lateral surgery can let you know more about that. Of course the surgeon did not want me to drive as long as I had the drains, and if I were taking pain meds which I wasn't.

    I must say that for me cancer has been so much harder mentally than physically. I still have good days and bad, holidays are hard as I try to imagine what it would be like without me there, it sneaks up on me sometimes. I think that is to be expected. I have learned not to be a hero, I take my anti-anxiety meds when it starts getting to me and do my best to focus on the positive. You can always bring your concerns here, somebody will know exactly how you are feeling.

    Wishing you an easy and speedy surgery and recovery,

    Jennifer

    Good luck Gail!
    Sue :)

    Good luck Gail!


    Sue :)
  • LoveBabyJesus
    LoveBabyJesus Member Posts: 1,679 Member
    Options
    Hi Gail -- I just want to
    Hi Gail -- I just want to wish you Good Luck on your surgery. All will go well.

    Just remember to let others help you. Don't stress, and rest as much as possible.

    Please keep us posted.
  • mamolady
    mamolady Member Posts: 796 Member
    Options
    Gail,
    I just wanted to wish

    Gail,
    I just wanted to wish you all the best this week. The mastectomy isn't that bad. I had bilateral in march. Be sure to not move your arms till the tubes come out. I didn't follow that very well and my last tube took over 4 weeks. Let some one else fix you dinner, do the dishes, play with the dog. What ever may temp you to move around too much.
    Other than that, the pain isn't bad. The feeling in my chest is just now coming back due to all the nerves they had to cut through. Button up shirts, nothing that has to go over your head.
    The recliner is perfect, I wish we had one. I opted for wing back chairs with foot stools when we bought our house 13 years ago. This last few months is the first time I wish we had gotten a recliner!

    Cindy
  • Chickadee1955
    Chickadee1955 Member Posts: 356 Member
    Options

    Hi Gail -- I just want to
    Hi Gail -- I just want to wish you Good Luck on your surgery. All will go well.

    Just remember to let others help you. Don't stress, and rest as much as possible.

    Please keep us posted.

    Gail,
    Best of luck and BE

    Gail,

    Best of luck and BE KIND TO YOURSELF through all this. It is a very scary thing to face, but you'll do just fine and you'll be surprised how quickly you recover.

    Cyber hugs and best wishes.

    Chickadee
  • VickiSam
    VickiSam Member Posts: 9,079 Member
    Options
    mamolady said:

    Gail,
    I just wanted to wish

    Gail,
    I just wanted to wish you all the best this week. The mastectomy isn't that bad. I had bilateral in march. Be sure to not move your arms till the tubes come out. I didn't follow that very well and my last tube took over 4 weeks. Let some one else fix you dinner, do the dishes, play with the dog. What ever may temp you to move around too much.
    Other than that, the pain isn't bad. The feeling in my chest is just now coming back due to all the nerves they had to cut through. Button up shirts, nothing that has to go over your head.
    The recliner is perfect, I wish we had one. I opted for wing back chairs with foot stools when we bought our house 13 years ago. This last few months is the first time I wish we had gotten a recliner!

    Cindy

    Gail .. Good luck, rest when possible and
    take pain medication when necessary. Multiple pillows in various, sizes help with sleeping on your back.

    Please have cups, saucers, plates at arm level - as well as re-arranging your fridge for more commonly used items at arm levels. Tide/Downy small container sizes - also at arm level. Reaching up and grabbing heavy items -- will tear your stitches, as well as hurt your arms. Muscles and tissue in breast, as well as arm areas will be cut,moved and sewn back together.

    I tried to take a bath ..but hence could not pull myself out of the our spa tub, no muscles or strength in my arms after bilateral mastectomy.. It took my husband, and daughter some time to pull me out of the tub == without hurting me. Not a pretty time, or sight to say the least. So I opted to shower ...My husband removed our shower head, and replaced it with a flex hose type so I could shower maneuvering the flex hose from waist down, as well as place shower water under my arms.

    Lastly, please make sure you do your exercises as prescribed by Plastic Surgeon, and Physical Therapist.

    Strength, Courage, Hope and Speedy recovery.

    Vicki Sam
  • cahjah75
    cahjah75 Member Posts: 2,631
    Options
    Hi Gail
    I had a bilateral mastectomy with no reconstruction June 2010. I had Invasive Lobular Carcinoma 6.1 cm in right breast and LCIS in left. I met with plastic surgeon to go over my options but my surgeon didn't recommend reconstruction until after any treatment. BTW, I'm 62. I ended up having 6 rounds of Taxotere/Cytoxan and 28 rad treatments. I'm having scar revision surgery in August to remove the excess skin on the sides of my body. I healed well after surgery. Spent 2 days in hospital and wore camisole w/velcroed holders for the drains. The drains were removed 10 days later. I did physical therapy on my own to keep my shoulders and arms moving. No residual problems. I didn't have hardly any pain that required more than Tylenol. My husband moved whatever dishes I might need for the day to the counter. I rested when I wanted and generally took it easy. Wishing you a successful surgery.
    {{hugs}} Char
  • dbhadra
    dbhadra Member Posts: 344 Member
    Options
    cahjah75 said:

    Hi Gail
    I had a bilateral mastectomy with no reconstruction June 2010. I had Invasive Lobular Carcinoma 6.1 cm in right breast and LCIS in left. I met with plastic surgeon to go over my options but my surgeon didn't recommend reconstruction until after any treatment. BTW, I'm 62. I ended up having 6 rounds of Taxotere/Cytoxan and 28 rad treatments. I'm having scar revision surgery in August to remove the excess skin on the sides of my body. I healed well after surgery. Spent 2 days in hospital and wore camisole w/velcroed holders for the drains. The drains were removed 10 days later. I did physical therapy on my own to keep my shoulders and arms moving. No residual problems. I didn't have hardly any pain that required more than Tylenol. My husband moved whatever dishes I might need for the day to the counter. I rested when I wanted and generally took it easy. Wishing you a successful surgery.
    {{hugs}} Char

    just finished unilateral surgery last Thursday
    and have to say that for me, the pain was really minimal. I had Percaset (spelling?!) in the hospital and for a few days afterwards but now am down to extra strength Tylenol. Have been doing the arm exercises prescribed by the physical therapist at the hospital and range of motion seems pretty good.

    They gave me two camisoles to bring/wear home to pin the drains too. I also bought a belt from TLC catalog that has little bags for the drains which is very comfortable.

    For me, the emotional impact caught up with me about three days after surgery, lots of tears and anxiety waiting for the pathology report. It caught me by surprise as I thought after the surgery I'd feel a lot of relief. But my feelings were not as I expected and that threw me for a loop. I would have to say the emotional part was much harder than the physical part. Everyone keeps commenting on how well I am doing physically but inside there's a lot of pain. Give yourself time to heal and even if you feel great, be gentle with yourself and take it easy.

    Wishing you all the best,

    Laura
  • Ritzy
    Ritzy Member Posts: 4,381 Member
    Options
    dbhadra said:

    just finished unilateral surgery last Thursday
    and have to say that for me, the pain was really minimal. I had Percaset (spelling?!) in the hospital and for a few days afterwards but now am down to extra strength Tylenol. Have been doing the arm exercises prescribed by the physical therapist at the hospital and range of motion seems pretty good.

    They gave me two camisoles to bring/wear home to pin the drains too. I also bought a belt from TLC catalog that has little bags for the drains which is very comfortable.

    For me, the emotional impact caught up with me about three days after surgery, lots of tears and anxiety waiting for the pathology report. It caught me by surprise as I thought after the surgery I'd feel a lot of relief. But my feelings were not as I expected and that threw me for a loop. I would have to say the emotional part was much harder than the physical part. Everyone keeps commenting on how well I am doing physically but inside there's a lot of pain. Give yourself time to heal and even if you feel great, be gentle with yourself and take it easy.

    Wishing you all the best,

    Laura

    Praying your surgery will go
    Praying your surgery will go well for you tomorrow and that you will have a full and fast recovery Gail.

    I will be praying for you!


    Sue :)
  • RooDee
    RooDee Member Posts: 21
    Options
    wishing you good luck
    I had bi-lateral mastectomy with immediate recon ( latissimus dorsi flap) Oct. 2010, was in the recovery room for 4 hrs. ( lost a lot of blood, my surgeon thought that I might need a blood transfusion) stayed in the hospital for 2 nts, my surgeon provided the bra for me after the surgery and I just had my robe on and pajama pants to go home with, I had 4 drains so none of my shirts or dresses would fit. You will need someone to stay with you for at least the first week. My husband was the one who emptied the drains and logged the numbers. I slept on the recliner for about a month and a half. My husband did all the cooking and the cleaning....I took it easy but started exercising and also it's important to go outside in the sun for maybe 15-20 minutes as it would help boost your immune system, and believe me when I say you will need a bottle of stool softener. I went back to work after 2 months...I still feel soreness and numbness in some areas. I didn't do chemo but on Tamoxifen for 5 yrs. I will pray for you...**HUGS**
  • missrenee
    missrenee Member Posts: 2,136 Member
    Options
    RooDee said:

    wishing you good luck
    I had bi-lateral mastectomy with immediate recon ( latissimus dorsi flap) Oct. 2010, was in the recovery room for 4 hrs. ( lost a lot of blood, my surgeon thought that I might need a blood transfusion) stayed in the hospital for 2 nts, my surgeon provided the bra for me after the surgery and I just had my robe on and pajama pants to go home with, I had 4 drains so none of my shirts or dresses would fit. You will need someone to stay with you for at least the first week. My husband was the one who emptied the drains and logged the numbers. I slept on the recliner for about a month and a half. My husband did all the cooking and the cleaning....I took it easy but started exercising and also it's important to go outside in the sun for maybe 15-20 minutes as it would help boost your immune system, and believe me when I say you will need a bottle of stool softener. I went back to work after 2 months...I still feel soreness and numbness in some areas. I didn't do chemo but on Tamoxifen for 5 yrs. I will pray for you...**HUGS**

    Wishing you the best of luck with your surgery tomorrow,
    Gail. I will keep you in my prayers and I'm sending loads of positive energy your way. Soon this phase will be over and you can begin healing.

    Hugs, Renee
  • Marsha Mulvey
    Marsha Mulvey Member Posts: 597 Member
    Options
    missrenee said:

    Wishing you the best of luck with your surgery tomorrow,
    Gail. I will keep you in my prayers and I'm sending loads of positive energy your way. Soon this phase will be over and you can begin healing.

    Hugs, Renee

    thinking
    Thinking of you tomorrow and sending best wishes.
    Marsha
  • DianeBC
    DianeBC Member Posts: 3,881 Member
    Options

    thinking
    Thinking of you tomorrow and sending best wishes.
    Marsha

    Keeping you in my prayers
    Keeping you in my prayers today Gail!


    Hugs, Diane
  • Chickadee1955
    Chickadee1955 Member Posts: 356 Member
    Options
    DianeBC said:

    Keeping you in my prayers
    Keeping you in my prayers today Gail!


    Hugs, Diane

    Hope all went well Gail.
    Hope all went well Gail. Just thinking of you today.

    Chickadee