Any suggestions on how I can prepare for a double mastectomy?
I am a 41 y/o female. On 5/10/12, I am scheduled to have a bilateral double mastectomy with no reconstruction. I am starting to get a little nervous about this surgery. If anyone out there has had a double mastectomy and is willing to share their experience with me, I would greatly appreciate it. Do you have any suggestions on how I can prepare my body physically and/or mentally for this surgery? What will minimize scar tissue from adhering to chest wall? What will ease nerve pain? What scar prevention cream is best on sensitive skin? How soon can I exercise after surgery? Are there any exercises that I can do to prepare my body before the surgery? Are there natural remedies to calm anxiety? I have 40 days to prepare…tick tock. =| Thanks, Joanna
Comments
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Joanna, my bilateral (also
Joanna, my bilateral (also no reconstruction) was Jan 2011. Here's my advice...
Move anything that is on a high shelf that you will need to reach (clothes, dishes) down to shoulder height. Be sure you have some shirts/blouses that button/zip up the front...you will have some difficulty with range of motion for a little while. And your doc will very likely put a lifting restriction of 5-10 lbs on for a while too.
As for post surgery exercise, check with your doc. I would hate to suggest something that worked for me, but might not be appropriate in your case. Be sure to do the exercises though, some women have trouble with frozen shoulder after mastectomies. The post surgery exercises will help you avoid that.
See if your insurance will cover post-surgery mastectomy camisoles. If not, just google them, lots of options will come up.l Mine came will 'fluffs'...very light 'pillow boobs'. They also have velcro pockets to hold up to 4 drains. When showering I used a fat shoelace tied around my neck and pinned the drains to that. Your doc will let you know when it's ok to shower versus a 'bird bath'.
I found it most comfortable to sleep with a wedge pillow under my back along with some other regular pillows. I also had a few smaller irregular pillows to position my arms comfortably and to keep me from rolling over. My husband helped me up and out of bed by pushing up on my back. Others here have found a recliner a good place to sleep at first.
When I was in the hospital, the first trip to the bathroom after surgery...the nurse was walking with me to make sure I was ok. My legs were a little wobbly so I grabbed the rail on the wall and held on as I sat down. DON'T DO THAT!!! Apparently it was too soon after surgery to move my arm that way...it caused horrible pain. I was in the hospital an extra day to get the pain in my arm under control.
That's all I can think of now. I'm sure others will chime in too. I hope the surgery goes as expected with no surprises. Best wishes.
Hugs,
Linda0 -
I had bil.mastectomy in July
I had bil.mastectomy in July 2010 no reconstruction and have not regretted it.Make sure you have some one at home to help you as your drains will have to be emptied.Don't worry about house work it will be there when you feel up to it.What i did was clean my hole house before surgery then i didn't have to worry about it.Don't reach for any thing,make sure you do your exercise they will tell you what ones to do.I had some nerve damage but not much,i also had 2 lymph nodes removed from each side have some swelling in arm pit area on right side.I don't know if there's is anything you can do before to prepare your self,my kids helped a lot to keep me grounded and my son took me to all my Dr. app.after,i didn't use any creams after for scares with time they have faded.Your Dr. can give you some thing for anxiety.What kind of cancer do you have as that will depend on what regiment to do after,i am on Tamoxifen for 5 years as mine was ER + PR positive and no cancer in lymph nodes.
Keep us posted.Hugs Frankie0 -
Joanna, there is little you
Joanna, there is little you can do mentally to prepare yourself for the surgery. I had a bilateral last march with no recon. I rarely wear the fake boobs either.
1. move anything you may need on a daily basis, to below shoulder height.
2. follow the doctors orders! till the drains come out, they may not want you to move your arms much.
3. after the drains came out they gave me a type of massage to keep the skin loose. I still do this as I had radiation too and the skin is still tightening up from that.
4. get a couple of super soft button up shirts.
The anesthetic made my skin crawl for a few days so I only used super soft sheets too. I also put a baby changing pad under where my top have was on the bed. I needed extra pillows to be able to sleep on my back.
I think that is it.
I really don't have a problem with not having boobs. I have found tops that make it less noticeable. Scarves help, sweaters and those trendy short sleeve and sleeveless sweaters help alot. Only one person has made me think twice about recon but not seriously enough to go through with it. My husband is great, he really doesn't care about the boobs. I am loosing weight because I figure it is ok to be flat chested as long as I am skinny!
all the best,
If you have any other questions just private message me, I am not on this board very often any more. Life is crazy now that I have it back!
Cindy0 -
Thank you pink sisters.mamolady said:Joanna, there is little you
Joanna, there is little you can do mentally to prepare yourself for the surgery. I had a bilateral last march with no recon. I rarely wear the fake boobs either.
1. move anything you may need on a daily basis, to below shoulder height.
2. follow the doctors orders! till the drains come out, they may not want you to move your arms much.
3. after the drains came out they gave me a type of massage to keep the skin loose. I still do this as I had radiation too and the skin is still tightening up from that.
4. get a couple of super soft button up shirts.
The anesthetic made my skin crawl for a few days so I only used super soft sheets too. I also put a baby changing pad under where my top have was on the bed. I needed extra pillows to be able to sleep on my back.
I think that is it.
I really don't have a problem with not having boobs. I have found tops that make it less noticeable. Scarves help, sweaters and those trendy short sleeve and sleeveless sweaters help alot. Only one person has made me think twice about recon but not seriously enough to go through with it. My husband is great, he really doesn't care about the boobs. I am loosing weight because I figure it is ok to be flat chested as long as I am skinny!
all the best,
If you have any other questions just private message me, I am not on this board very often any more. Life is crazy now that I have it back!
Cindy
Dear Diane, Linda, Frankie, and Cindy: Thank you all for taking the time to guide me. I appreciate all of your wonderful suggestions and for sharing some of your personal experiences with me. I also read older posts as Diane suggested which was also helpful. Thank you sisters. I wish you all peace. Hugs, Joanna0 -
Good luck Joanna!joanna said:Thank you pink sisters.
Dear Diane, Linda, Frankie, and Cindy: Thank you all for taking the time to guide me. I appreciate all of your wonderful suggestions and for sharing some of your personal experiences with me. I also read older posts as Diane suggested which was also helpful. Thank you sisters. I wish you all peace. Hugs, Joanna
Hugs,
Good luck Joanna!
Hugs, Jan0 -
Joanna ...survivorbc09 said:Good luck Joanna!
Hugs,
Good luck Joanna!
Hugs, Jan
cook, clean, and prepare as much as possible before bilateral mastectomy. Purchase Birthday, anniversary gifts etc.
The first 10 days after bilateral -- you really don't feel like yourself, so cooking or
doing laundry may get push aside for a few days. If possible prepare or buy frozen
dinners, veggies --. I also made several types of soups -- froze them for hearty
lunches when I didn't want to eat something heavy.
!
This is a good time to catch up on books, or hobby projects.
Best of luck to you!
Strength, Courage and HOPE for a Cure.
Vicki Sam0 -
Joanna
First i want you to know that you will be in my prayers as you try to prepare yourself for your double mastectomy. I too had a double mastectomy. Everyone has different experiences with surgeries. Mine i will just be honest was very painful. But, i also had my tissue expanders placed in at the same time as my mastectomy. I had alot of nerve pain and they gave me gabapentine for my nerve pain. Follow the advice of all the other sisters on here. Also, listen to your Dr about exercise and when it is ok for you to do it and what to do.
Take care
Laura0 -
You guys are awesom!lolad said:Joanna
First i want you to know that you will be in my prayers as you try to prepare yourself for your double mastectomy. I too had a double mastectomy. Everyone has different experiences with surgeries. Mine i will just be honest was very painful. But, i also had my tissue expanders placed in at the same time as my mastectomy. I had alot of nerve pain and they gave me gabapentine for my nerve pain. Follow the advice of all the other sisters on here. Also, listen to your Dr about exercise and when it is ok for you to do it and what to do.
Take care
Laura
You guys are awesome. I rarely post on discussion boards, but I felt I needed to post before my upcoming mastectomy, and the responses that I received have deeply touched me. I actually feel a bit wiser simply reading suggestions and knowing what others have gone through...my courage is starting to grow. Much appreciated, Joanna0 -
Welcome
Nobody wants to come here but we are glad you found us.
Milk is better on lower shelves of the fridge or even buy 1/2 galons for a while. Laundry soap down low too. Maybe buy this in smaller jugs too. You have some time to arrange for some temporary help. Maybe you can have a relative come in for a couple of hours a week to get a few things done that just wipe you out.
You will probably discover in this journey who your true friends are.0 -
Bilaterallaughs_a_lot said:Welcome
Nobody wants to come here but we are glad you found us.
Milk is better on lower shelves of the fridge or even buy 1/2 galons for a while. Laundry soap down low too. Maybe buy this in smaller jugs too. You have some time to arrange for some temporary help. Maybe you can have a relative come in for a couple of hours a week to get a few things done that just wipe you out.
You will probably discover in this journey who your true friends are.
You've already received some excellent pointers but I would also like to add something a little personal. Please be sure to take a stool softener daily. After my bilateral last April I couldn't eat and became very constipated. Long story short I became very sick. Please talk to your dr about preventative measures. You can buy Colace over the counter and it's good stuff.
I'm so sorry that you have to go through this. I will pray for a successful surgery with a speedy recovery for you.
Hugs and God bless,
Dawne0 -
joanna
I will be right there with you. I have a surgery date for a double mastectomy with no reconstruction, too. I have mine April 25th. I logged in today to get an idea on what to expect.
Thank you everyone for the input. I am scared and ready to be over with it at the same time. I am sure while I am stuck at home, I will be logging in often.
0 -
I am glad you posted Joannajoanna said:You guys are awesom!
You guys are awesome. I rarely post on discussion boards, but I felt I needed to post before my upcoming mastectomy, and the responses that I received have deeply touched me. I actually feel a bit wiser simply reading suggestions and knowing what others have gone through...my courage is starting to grow. Much appreciated, Joanna
I am glad you posted Joanna and it looks like you got some great info from the pink sisters.
Also happy that you said it made you feel better.
Good luck Joanna,
Leeza0 -
DebbyB...DebbyB said:joanna
I will be right there with you. I have a surgery date for a double mastectomy with no reconstruction, too. I have mine April 25th. I logged in today to get an idea on what to expect.
Thank you everyone for the input. I am scared and ready to be over with it at the same time. I am sure while I am stuck at home, I will be logging in often.
Yes, we are in the same boat. Please let us know how your surgery goes and I too will write a post after my double mastectomy. I will be thinking about you and praying that your surgery goes well. I did a lot of research on this site and other sites and the pink sisters have been very informative. I wrote down what I have learned. Here is my list that I put together after my research on how to prepare before and/or after a double mastectomy: Get a lot of rest – sitting up may be best during first two weeks; put items down low [ex, milk, detergent – buy small vs large]; follow doctors orders regarding when to exercise and do the exercises, but don’t over do it; when needed, take a stool softener; don’t worry about housework – it will wait for you; arrange help if needed; prepare meals ahead and freeze it or buy frozen food or drink liquids – juice/protein shakes; have snacks near your bed such as almonds and dried fruit and a lot of water; have cleaning wipes near bed; buy button down shirts; buy front closure sports bra; buy camisoles; buy ace bandages to wrap a few times around stomach so the tubes can easily be tucked into it, if you don’t like it dangling; take care of your scar as directed by doctor; possibly homeopathic remedies may help [arnica montana & bromelain]; do relaxation techniques and if spiritual, pray. I ran across this inspirational picture – it is of a woman sitting on a beach who had a double mastectomy with no reconstruction – she seems so happy: http://www.flickr.com/photos/sentenced2live/389701158/
Take it easy, Joanna Siefert0 -
Well Joanna it's sounds likejoanna said:DebbyB...
Yes, we are in the same boat. Please let us know how your surgery goes and I too will write a post after my double mastectomy. I will be thinking about you and praying that your surgery goes well. I did a lot of research on this site and other sites and the pink sisters have been very informative. I wrote down what I have learned. Here is my list that I put together after my research on how to prepare before and/or after a double mastectomy: Get a lot of rest – sitting up may be best during first two weeks; put items down low [ex, milk, detergent – buy small vs large]; follow doctors orders regarding when to exercise and do the exercises, but don’t over do it; when needed, take a stool softener; don’t worry about housework – it will wait for you; arrange help if needed; prepare meals ahead and freeze it or buy frozen food or drink liquids – juice/protein shakes; have snacks near your bed such as almonds and dried fruit and a lot of water; have cleaning wipes near bed; buy button down shirts; buy front closure sports bra; buy camisoles; buy ace bandages to wrap a few times around stomach so the tubes can easily be tucked into it, if you don’t like it dangling; take care of your scar as directed by doctor; possibly homeopathic remedies may help [arnica montana & bromelain]; do relaxation techniques and if spiritual, pray. I ran across this inspirational picture – it is of a woman sitting on a beach who had a double mastectomy with no reconstruction – she seems so happy: http://www.flickr.com/photos/sentenced2live/389701158/
Take it easy, Joanna Siefert
Well Joanna it's sounds like you are ready to go ,if we ever are the best to you on your journey and keep us posted.
Hugs Frankie0 -
The best to you also on yourDebbyB said:joanna
I will be right there with you. I have a surgery date for a double mastectomy with no reconstruction, too. I have mine April 25th. I logged in today to get an idea on what to expect.
Thank you everyone for the input. I am scared and ready to be over with it at the same time. I am sure while I am stuck at home, I will be logging in often.
DebbyB the best to you also on your journey.Keep us posted.
Hugs Frankie0 -
button down shirtsjoanna said:DebbyB...
Yes, we are in the same boat. Please let us know how your surgery goes and I too will write a post after my double mastectomy. I will be thinking about you and praying that your surgery goes well. I did a lot of research on this site and other sites and the pink sisters have been very informative. I wrote down what I have learned. Here is my list that I put together after my research on how to prepare before and/or after a double mastectomy: Get a lot of rest – sitting up may be best during first two weeks; put items down low [ex, milk, detergent – buy small vs large]; follow doctors orders regarding when to exercise and do the exercises, but don’t over do it; when needed, take a stool softener; don’t worry about housework – it will wait for you; arrange help if needed; prepare meals ahead and freeze it or buy frozen food or drink liquids – juice/protein shakes; have snacks near your bed such as almonds and dried fruit and a lot of water; have cleaning wipes near bed; buy button down shirts; buy front closure sports bra; buy camisoles; buy ace bandages to wrap a few times around stomach so the tubes can easily be tucked into it, if you don’t like it dangling; take care of your scar as directed by doctor; possibly homeopathic remedies may help [arnica montana & bromelain]; do relaxation techniques and if spiritual, pray. I ran across this inspirational picture – it is of a woman sitting on a beach who had a double mastectomy with no reconstruction – she seems so happy: http://www.flickr.com/photos/sentenced2live/389701158/
Take it easy, Joanna Siefert
My wardrobe is mostly t-shirts. I didn't even think of button down shirts. I am having a bra burning party the Saturday before surgery. Seemed fitting.0 -
Joanna,
I had bilateral
Joanna,
I had bilateral mastectomies in June 2008 w/ reconstruction. My advice in preparation would be to build up your immune system & get as healthy & strong as possible. I juiced (carrots, kale, spinach, apples...) & took liquid vitamins. My fear was getting an infection & having problems w/ my expander implants. I did great (no infection), but was in a lot of pain from the reconstruction. From what I have been told the mastectomies themselves aren't so painful, because they are basically removing tissue, but lifting the muscles in the chest wall for the expanders is very painful. I don't regret my choice though. I will tell you to keep those arms moving because I developed bilateral frozen shoulders, & that was incredibly painful. I couldn't move my arms for months & had to leave my job as a hairdresser for almost 2 years. I was never warned & when I called the Drs looking for answers, they all said they didn't know what was wrong w/ me. I found the problem myself while reading Dr. Susan Love's breast cancer book (very informative). Also found Crazy, Sexy Cancer tips to be very informative (great eating, exercise & mental advice). Hang tough & we're all here for you! I could go on & on w/ helpful advice, so feel free to contact me if you want.0 -
Hi Colzee, I just found out that my local library has both of those books, so I plan on checking it out. My genetics counselor also recommended Dr. Susan Love's breast cancer book. I am looking forward to reading it. I bought a juicer a month ago, so juicing is fairly new to me. I discovered a wonderful mix - watermelon, lime, cucumbers & strawberries - yum! I will try hard to build my immune system. Sorry to hear your doctors were not very supportive when you were in such pain, but very glad you were able to figure it out on your own with the help of a book. Thanks for your wise advice. I appreciate you and all of the pink sisters. Everyone seems open and caring, it's so refreshing.colzee said:Joanna,
I had bilateral
Joanna,
I had bilateral mastectomies in June 2008 w/ reconstruction. My advice in preparation would be to build up your immune system & get as healthy & strong as possible. I juiced (carrots, kale, spinach, apples...) & took liquid vitamins. My fear was getting an infection & having problems w/ my expander implants. I did great (no infection), but was in a lot of pain from the reconstruction. From what I have been told the mastectomies themselves aren't so painful, because they are basically removing tissue, but lifting the muscles in the chest wall for the expanders is very painful. I don't regret my choice though. I will tell you to keep those arms moving because I developed bilateral frozen shoulders, & that was incredibly painful. I couldn't move my arms for months & had to leave my job as a hairdresser for almost 2 years. I was never warned & when I called the Drs looking for answers, they all said they didn't know what was wrong w/ me. I found the problem myself while reading Dr. Susan Love's breast cancer book (very informative). Also found Crazy, Sexy Cancer tips to be very informative (great eating, exercise & mental advice). Hang tough & we're all here for you! I could go on & on w/ helpful advice, so feel free to contact me if you want.0 -
Shhhh..don't let anyone elsejoanna said:Hi Colzee, I just found out that my local library has both of those books, so I plan on checking it out. My genetics counselor also recommended Dr. Susan Love's breast cancer book. I am looking forward to reading it. I bought a juicer a month ago, so juicing is fairly new to me. I discovered a wonderful mix - watermelon, lime, cucumbers & strawberries - yum! I will try hard to build my immune system. Sorry to hear your doctors were not very supportive when you were in such pain, but very glad you were able to figure it out on your own with the help of a book. Thanks for your wise advice. I appreciate you and all of the pink sisters. Everyone seems open and caring, it's so refreshing.
Shhhh..don't let anyone else know that the pink sisters are open and caring. LOL We've all been there and done it or are doing it.
Dr Susan Love's book is excellent and I think you will love it.
Best of luck to you!
Hugs, Megan0
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