• How do I prepare for a bilateral mastectomy?

    Asked by HearMeRoar on Saturday, February 2, 2013

    How do I prepare for a bilateral mastectomy?

    1- I haven't told my sons (8 and 10) yet that I there is "C" inside of me... gonna tell them I'm having surgery to get the "C" out -- can't tell them my boobs are being amputated basically... what do I say?

    2- How long did you stay in the hospital?

    3- What are the best tools to make myself comfy at the hospital and at home? Robe, extra pillows? Your tips are very much appreciated!

    I get all this started 2 weeks from today. My mom is going to come and stay w/ me for 3 weeks. My kids only get to see her once every year or two for a few days. I'm hoping that mom having cancer is soon forgotten about and "Grammy" coming for 3 weeks takes over!

    *note... I don't "have" cancer.... it's hanging out in my body and it's not welcome and will be leaving soon!! Back when it seemed like a lumpectomy and maybe radiation I wasn't even planning to tell my kids. At this point I don't want to be identified with the "C" word!! Thanks!

    15 Answers from the Community

    15 answers
    • nancyjac's Avatar
      nancyjac

      1. tell them openly and honestly. I'm sure they already know something is going on and the longer you keep from them the worse they think it is and the less they trust that you are telling them the truth.

      2. 2 nights.

      3. A robe is not very feasible or comfortable due to IVs and the nurse's incessant desire to take your vitals, including blood pressure. Take a button up rather than pullover shirt to wear home. The tube they put down your throat to keep your airways open while under anesthesia can cause your throat to feel scratchy for a few days so you might want to take some lozenges.

      over 4 years ago
    • JennyMiller's Avatar
      JennyMiller

      You prepare for your bilateral mastectomy, first of all, by looking at it as the beginning of your battle against this evil and elusive enemy. Being aggressive in having the bilateral mastectomy will empower you to be strong and positive -- and as you complete each hurdle in your treatment, you will be filled with faith and hope as you see the light at the end of the tunnel. The power of prayer was evident in my ability to complete my journey. I would tell your sons in a light hearted way that your boobs got sick and needed to go -- kind of like tonsils or appendix. After surgery, when you get your "battle armor" on, they will detect your positive attitude and it will put them at ease.
      I stayed in the hospital only one night as I wanted to get home but I really should have stayed 2 nights.
      As for the hospital, leave it up to the staff to make you comfortable. Once you are home, you will most likely find comfort in curling up on the couch with a warm blanket and soft pillows.
      If you have chemo, you will find so many helpful hints on this site - such as putting a basket together of all the items that could help -- Biotene for dry mouth, Ora Jel Rinse for mouth or throat sores, simply saline for nose, Tylenol, etc. The best hint that I got from this site was to take Claritin (not Claritin D) with the Neulesta shot to prevent bone pain. I posted the details of my journey (and I mean details) on my wall -- if you get a chance to read them, it may give you an idea of what to expect. I wish you the best!!!

      over 4 years ago
    • Msreje's Avatar
      Msreje (Best Answer!)

      Dear HearMeRoar, the hardest thing I ever did in my life was tell my 14 year old that I have breast cancer. I promised myself to be strong and not cry and I told my husband that I wanted to tell him. My husband was with me in the room and I started by telling him that he must have realized that I was going for a lot of tests lately and that the doctors found something that was not good. Of course I cried. I reassured him that I had the BEST doctors and that I needed surgery to be better. I only used the word cancer once. Our children are still young and we do not want to worry them more then needed. I chose the word surgery and did not go into detail. I did not tell him mastectomy, breast removal, etc. I just said surgery. I think that the most important thing during this time is to reassure them constantly that mom is ok, that things might be a little different but will soon be back to normal. I do not believe in giving them too much information at once. They need to absorb a little at a time. Your children are young and they might ask you a lot of questions. Answer truthfully. My son said nothing, asked nothing. Just two single tears rolled down his face. This broke my heart but I was determined to show him that I was well and going to be even better.
      My stay at the hospital was for five days. I did not let my son come to the hospital, it is not a happy place, with machines, noises, smells, other patients, doctors and nurses running. I called him every day and again reassured him that I was fine. You do not need anything at the hospital as they will give you everything you need. As to preparing at home you will have your mom. You will go home with pain killers. I could not sleep in bed as it was too flat. I had to sleep on my recliner for a while. I had no help other than my husband's. I will tell you that was a challenge but I made it. As to clothing, at the beginning I could only wear button down shirts, nothing over the head, and very loose yoga pants. I came home with drains after the surgery and these were tough.
      I wish you all the BEST, times will get a bit harder for you but they will pass. We are strong and we cannot let anything bring us down.

      over 4 years ago
    • CountryGirl's Avatar
      CountryGirl

      Hi. Telling kids is hard. I waited too long. They knew I was upset. I found them doing something they enjoyed and asked them how they wanted to celebrate my recovery from all the treatment. Evan chose to ride horses through the Rocky Mountains; Lane wanted to zip line (a much more economical, but frightning choice). These promises gave them goals.

      In regards to your second question. I spent five days in the hospital. Almost all muscle was also removed on my left side. I had three drains. To help me be more normal while lugging three drains, I bought two mastectomy camisoles.

      over 4 years ago
    • sewfun928's Avatar
      sewfun928

      Having to tell my boys was the hardest thing I ever had to do, they were 20, 22 and 24 and still so hard. Two are in the medical field so they have a good knowledge of cancer. I always remained as upbeat as possible, I only had 2 or 3 pity parties for myself and they were never around.
      I had a Bilateral with reconstructive and was in the hospital overnight. I came home with a pain pump. I never had to take any pain meds. I did have drainage pumps but they came out in a week. I also slept in the recliner for a few months.
      Good luck, stay strong.

      over 4 years ago
    • DianaL's Avatar
      DianaL

      Hi Hearmeroar,
      I have five granddaughters that range from 16 to 4 months at the time of my diagnosis. The 5 & 6 year old I told right after I was diagnosed. Kids are very adaptable when you let them know what is going on. Both my girls main comment was "you are going to be bald". Put everything into perspective. I even told them everything every step of the way. Their main upset was that I would not be able to pick up the baby and the 5 year old likes to give closed mouth kisses which I told her had to stop until all treatment. The 16 and 12 year old do not live in our city but when they came to visit they were told the truth. I am a glad I did. They were not afraid I was going to die! The three youngest are at our house a lot. They got to see when I had to get my hair buzzed after first chemo and every time I took off a wig or cap they could see how bald I was getting! Now that I have completed all treatments and about three months out, my 6 yo thinks my hair looks "freaky."

      As far as the bilateral all the advice from everyone here is right on. The only difference for me was I was most comfy in a recliner. Bless you and I am so sorry you have become a part of this club! This was not what I had envisioned as my 65th birthday present! This website has been my best friend, plus God has put so many people in my path during this journey! Wonderful people! Good luck with your decision about your sons! As the saying goes Fight Like a Girl!

      over 4 years ago
    • JudyW's Avatar
      JudyW

      I'm a single mom and my son was 10 when I was diagnosed. He was with me at the ultrasound where the radiologist told me. I was so stunned, we walked out of the office into the courtyard, sat down, and I told him. He had questions which I answered to the best of my ability, and he was with me every step of the journey. I couldn't have done it without him. The surgeon and the oncologist were both very good with him and kept him in the loop of discussions and answered any questions he had openly and honestly.

      I stayed in the hospital one night. There is little way to get a good rest in the hospital, so, unless you have any problems, go home as soon as possible. I was alone at home, except for my son, and he goes to his dad's every other weekend. I went home and things were fine until my drains backed up on a Sunday morning. Luckily, I had neighbors who had told me to call if I needed anything, so one of them took me to the emergency room to have the problem fixed.

      You'll need zip-up or button up tops, preferably with pockets that you can put the drains in to walk around. I used zip-up hoodie sweatshirts. They were perfect with the kangaroo-type pouch in the front for the drains. You'll need to build yourself a fortress with pillows in bed so you don't roll over. I had pillows to prop me up a bit (maybe 45 degree angle) and pillows for under my knees (to keep me from rolling over), and pillows along either side of me so I had support for my arms and didn't roll.

      You'll be fine. Wonderful your mom is coming to stay with you. I had my son, who, of course, was gone each weekday to school. There were folks who stopped by around noontime each day the first week, just to check to make sure everything was okay. Lotsahelpinghands.com was a Godsend.

      Good luck!

      over 4 years ago
    • chutzpah's Avatar
      chutzpah

      Can't give advice on how to tell young children about your situation, my kids are grown. but can give some about the masectomy. Both my breast surgeon and plastic surgeon worked on the masectomy. The plastic surgeon put in the tissue expanders for the reconstruction. I was in the hospital from Friday to Monday. The first night I had to get a nurse to help reposition me I kept on creeping towards the bottom of the bed. You should be given a button for the drug drip USE IT or they take it away too quickly. If there any things that you use regularly that you keep in a place where you have to reach up for it move it to a lower spot. You might want to start cooking and freezing food for when you get home.You do need lots of pillows or better yet a recliner to sleep in. For the ride home take a pillow to place between you and the seat belt. For the first week or so put yourself first!! You need to rest and heal, it is a major surgery. If they are removing nodes you will feel uncomfortable under that arm. Don't plan on doing any cartwheels for a very long time
      Good Luck

      over 4 years ago
    • hikerchick's Avatar
      hikerchick

      Just want to say that your presentation of the facts could be as important as the facts. If you seem very scared and freaked out, the kids will likely follow. So timing and choice of words is what can make or break it. My kids never feared it, because I told them I was lucky, it was all in my breasts which could be removed. I LOVE your approach about it hanging out and not welcome and leaving soon!!!! Way to go. :-) Keep up the good work. You are going to be amazed at what strength you have.

      over 4 years ago
    • MarnieC's Avatar
      MarnieC

      Dear Hear Me Roar (great name by the way!) - you have a great attitude and the question you've asked is a very good one. Looks like everyone here has answered 1 & 2 quite well. For #3, I have been compiling a list for some months now and posted it on my website (hope it helps you!): http://marnieclark.com/tips-for-surgery-useful-items-to-take-with-you/ Wishing you all the very best and I know with the great attitude you have you are going to come through this beautifully. xox

      over 4 years ago
    • Julie99's Avatar
      Julie99

      I had my surgery just over 3 weeks ago. I don't have kids, I did expanders and spent 2 nights in the hospital. A water bottle with a handle and straw were great for my dry throat. A shirt with pockets inside was a must for the drains. Sleeping on the recliner with a table close by plus pillows to elevate my arms was huge. Flushable wipes, food and dishes in easy access without reaching, and everything in easy open and smaller, lighter containers. The biggest thing that surprised me was how absolutely EXHAUSTED I was for days. Even 4 days after surgery I was not awake more than 2 hours at a time. Other than this, I'm healthy and was working out daily with running, kickboxing, yoga, weight lifting and teaching fitness classes. I was just wiped out!
      I lived in stretchy yoga pants & button down tops with the pockets inside that I made myself (cheap walmart men's flannels, fabric & the iron on hem thing, heat & seal maybe- 4 shirts under $50). Here's the link for what my breast care center gave me. I made the other 4 because I washed the only one I had every other day! http://www.alittleeasierrecovery.org/index.php?link=jack
      Also, something that I luckily remembered, my cycle. I haven't bought pads in over 20 years and didn't even know what brands they had. Then needed new full back undies for the pads.
      Wash the bedding, extra blankets and have everything clean and ready to go to cut down on the chance for infections and see if you can get your med prescriptions in advance so its one less thing to worry about when you leave the hospital.
      One step at a time and remember to give your body time to heal.
      Also, I asked this question a few weeks before my surgery and got AMAZING answers here. Check over there to see.

      over 4 years ago
    • AlizaMLS's Avatar
      AlizaMLS

      Dear HearMeRoar,

      First, I can offer you some practical suggestions that might make life easier. I always like to tell people that I'm a retired Medical Librarian. I don't dispence medical advice-ever, but I do offer referrals.

      So the first referral I'm going to offer you is to get in touch with Cancer Care. They're wonderful!! They have specially trained Oncologic Social Workers (different than others because they deal with people with cancer). You can get counseling through them either in-person or by phone to help you cope with your very overwhelming circumstances.

      I didn't have a bilateral mastectomy - at first. There was no cancer in my right breast. However, I'm going through the very difficult decision now of considering whether to have a prophylactic mastectomy so that I don't have to worry about a reoccurence. It's not easy and it seems every day is taken up with lots of medical appointments (I'm a Lupus patient as well). Back to you from me.

      I like John Lennon's quote - "Life is what happens while we're busy making other plans." I was supposed to get married last Fall...in a strapless dress...(Macy's is holding onto it for me). I think it's important to deal with the fact that you have cancer (I know you'll think this is hateful of me [I'm not trying to make you sad for no reason]) and mourn that fact and what's going to happen. It's the most normal and healthy response you can have. You'll recover more quickly than if you're in denial. The CancerCare social worker will better be able to help you deal with how/what to tell your children (hiding it isn't healthy). My daughter is 26 now and a Paramedic entering Nursing school, so I'm in a different situation re children.

      Make sure that your doctor does an "Oncotype" on the tumors after they're removed. It's a genetic test that gives a projection into the future about your risk of a reoccurrence down the road. It can help the oncologist determine whether you need chemotherapy and I'd recommend that you seek a 2nd opinion from a different oncologist before starting chemotherapy (if you have chemo you'll need to tell your kids something you may not feel great at times and may need a wig).

      Hopefully, when all is said and done, you'll be great, your cancer will pick up its' bags and run like XXX never to return which is certainly what I wish for you!!

      over 4 years ago
    • karen1956's Avatar
      karen1956

      My kids were 7, 1 and 19 when I was Dx (son is the middle child).....I told them about my Dx as soon as I found out and was upfront that I didn't have details yet...as I got more info I shared it with them....Oldest DD was away at college......There is a great book by Ellen McVicker Butterfly Kisses and Wishes On Wings ...it wasn't out when I was Dx....I read "The Year MY Mother Was Bald" with youngest DD. I wanted my kids with me at the hospital when I had bilat....they came and stayed till I ws ready to go to the OR, then DS to DD#2 out to lunch and a movie and then they came back to the hospital when I was in my room. I wanted them there for me... I stayed 2 nights in the hospital...I didn't want to go home after one night....
      Buy tops that open in front....nothing pullover for a couple weeks...wear comfy clothes on the bottom....sleep on your back....use a couple pillows....Allow people to do things for you...we had people cookd for me the week of surgery.....friends helped with play dates for younger daughter (she was in grade 2).... I was pretty upfront and honest with my kids with all the treatments....didn't have to go into details but they knew that I was having a bilat....then chemo and rads.....each of my kdis came to one of my chemos....I had chemo on Th and took friday off and then was back at work on Monday.....
      Oh yeah...the most decadent thing I did was go to Fantastic Sams to have them wash my hair as my hair was long and I couldn't wash it in the shower for the first week....BTW...tomorrow is 7 years from Dx......
      As I think of more things to help, I'll try to come back and post...All the best to you :)

      over 4 years ago
    • RMR's Avatar
      RMR

      When I was diagnosed, my kids were about 20, 16 and 15. My oldest was at college. I waited to tell them until after I saw the breast surgeon as I wanted to have a game plan to let them know that while I have Cancer I am taking care of it and will beat it. The problem I had was that my youngest daughter (the 15 year old) has a room next to mine and I did not know that she heard me talking in my room with my husband. So the day I was seeing the breast surgeon I told my two youngest children (who were home) that I was going to physical therapy (I had ACL reconstruction on my knee a month before diagnosis) and that their dad was going to a wake. My daughter knew this was a lie and later told me what bad taste it was to say her dad was going to a wake. They still remind me of this. So I agree with what someone else posted. Be up front and honest with your kids. They probably know something is wrong. You can reassure them that you are are going to be fine ,because you will. You will beat this... stay strong. Here's to survivorship.

      over 4 years ago
    • RMR's Avatar
      RMR

      When I was diagnosed, my kids were about 20, 16 and 15. My oldest was at college. I waited to tell them until after I saw the breast surgeon as I wanted to have a game plan to let them know that while I have Cancer I am taking care of it and will beat it. The problem I had was that my youngest daughter (the 15 year old) has a room next to mine and I did not know that she heard me talking in my room with my husband. So the day I was seeing the breast surgeon I told my two youngest children (who were home) that I was going to physical therapy (I had ACL reconstruction on my knee a month before diagnosis) and that their dad was going to a wake. My daughter knew this was a lie and later told me what bad taste it was to say her dad was going to a wake. They still remind me of this. So I agree with what someone else posted. Be up front and honest with your kids. They probably know something is wrong. You can reassure them that you are are going to be fine ,because you will. You will beat this... stay strong. Here's to survivorship.

      over 4 years ago

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