double mastecomy and recovery

mamaxs2
mamaxs2 Member Posts: 12
in Breast Cancer #1

Diagnosed with Stage 1.  Positive results on BRAC tests.  Double mastecomy recommended.  I thought I would be okay with it, but frankly, now, I am getting a little scared.  Is the recovery process at the hospital very hard?  Recovery at home?  I have 2 young children.

Comments

  • New Flower
    New Flower Member Posts: 4,294
    #2
    Please do not be afraid

    Hi, sorry for having cancer and being positive BRAC .  

    Mastectomy is very double, however you need prepare for it. if you do not do reconstruction you will stay at the hospital overnight or for 2 days. Recovery at home between 7 to 14 days. If you have close family member who can help you during your first week at home to watch children and help you with meals it will be very beneficial for. You can prepare for your surgery and recovery at home. Your surgeon office shoud give you alist plus we can help you here at CSN. Please reach out to family and friends. While undergoing cancer treatment you will need any help you can possible get. 

    Please be strong, it is ok to feel scared. You will do it and win this fight.

    Hugs to you

  • RozHopkins
    RozHopkins Member Posts: 578 Member
    #3
    Firstly well done making the

    Firstly well done making the decision on double masectomy, not easy.  I don't know if your young children still need 'carrying' at times or putting in car seats etc. but you should not stretch for some time after procedure nor lift anything heavy. THIS IS IMPORTANT.  Anything like dinner plates, cups, should be lowered for easy reach.  The drains are an absolute nuisance and can take up to two weeks to be removed.  They will again be awkward with little ones needing attention, they mustn't be pulled.  Please accept any help you can.  Perhaps freeze meals, accept food from others and sitters in case you need extra rest.  Your partner can't do enough to lighten the load if available.  You won't sleep well for some time, parents, in-laws, get someone to take your children to school.  It will get better, after the first three weeks you should be feeling less sore and be healing.  Wear soft, front buttoning, clothing, pajamas are perfect made of cotton.  A lot of ladies pin the drains to clothing to keep them secure.  Use your pain meds, IMPORTANT TO DO SO, soon you will won't need them.  But make sure you have enough for at least one month.  Remember this your time for help and you can make up to your little ones later and thank people later, you must rest and eat and not stretch.  I found things not bad at all frankly but the after treatment is a whole different thing.  One thing at a time.  Good luck.

  • bonbondidit
    bonbondidit Member Posts: 116
    #4
    Double mastectomy and recovery

    Hi mamaxs2,

     

    I just had my double mastectomy on Aug. 5. I had to have a radical mast on left with axillary nodes all removed and a basic mactectomy on the right with no lymph nodes removed. I chose to have the skin sparing type and no reconstruction afterwards. (I'm going to do that further down the line after chemo.) Here are my suggestions for a best outcome :

     

    Let them know you want anti nausea meds with anthesthisia. I usually do not do well with anesthisa so I stressed this to the doctors and they listened.

    Make sure you ask for a motion patch to be put behind your ear. This truly helps me from being too off balance.

    Ask the hospital or surgeon if they will provide a "drain pouch (s) " for your drains to be held in during recovery.  I ended up creating mine by having the nurse bring me something pouch like from her station.   She brought me what looked like a large plastic medical pocket looking thing with long straps that could go around the neck and waist. Two drains could fit per pocket. It was like a Sash purse.  We cutt the straps off and pinned the corners with large strudy safety pins to the inside of my shirts and then put the drains in the  pouches so I didn't have to deal with a strap tied around me or up around my neck. I was hands free and it was nice! Plus to be honest they were away from bacteria and sanitary in there.  I was a little surprised that this type of thing wasn't already offered to women in our situation.

    Drain care: We bought large box of hypoallergenic gloves. Alcohol swabs. Antibacterial cleanser.  So I would Anti bac on hands, gloves, then alcohol swab the drain area cap before opening the cap and pouring into measuring cup.

    Invest in the MOST softest and comfy pillows you can. I was gifted the memory foam pillows and they saved me.  I highly suggest sleeping upright in a sort of reclyiner type position.  You will need a strong pillow as your base for your back, then another large pillow with the ends going North and South to put ontop of the strong pillow, then two of the best pillows you can find to go under each arm for support. This allowed me to not have to use my pectoral muscles too much and my over all upper body as least as I could. Your legs will be your best friend allowing to grip and pull you up and out of bed when that time comes. You will roll to your side and then put your foot near the edge and allow yourself up. You will get the swing of it naturally.

    Meds: Pick up meds before surgery and have at home on your pre-arranged medical stations by end table in bedroom or dresser. Whatever is closest to  you.  Stool softener, laxitives.  This is huge!  Use prune juice and suppositories for relief!  I tried it all and this is what worked :) I had morphine the first two days, then weened from that and had Hydrocodone for two days.  I then went to only Advil 3 pills three times a day.  Looking back I would have added  hydrocodone at night before bed every night (make sure to get anti nausea meds for home..  I really was blessed with great sleep during my recovery due to the pillows being situated in the correct way.

    Food:  If you don't belong to a church, sign up. Ask for a care calender and have them bring you food. This is the best blessing in the world!!!!!If not church then have a friend set up a care calendar for friends and family.  Protein is your best friend. Stay away from too much pasta and breads due to constipation in the beginning. WATER WATERWATERWATER is also your best friend.  By a Brita or likewise water purifier pitcher. This was so convenient for us to use.

    Pace yourself. Do NOT do anything other than occasional walks through the house to build strength and get things flowing in your body again. If you are by yourself put everything low before hand. 

    Cleanliness:  Use flushable wipes for armpits or something to tuck up in there to clean yourself out.  Once the swelling subsides your under arms will need attention. They are sore so I used a towelette and tucked them in there and held them there until the rest was cleaned and then I would take them out and flush.  We used a towel in the shower/bathtub then a chair ontop of that so it wouldn't slip. My husband cut a hole out ofthe bottom of  a large trash bag and slipped my head through it. We then medical taped it snug around the collar and he washed my hair this way.  This is the time where you let things go and focus on bein clean. If a friend has to do it, they will with no problem, let them. This allowed the drains not to get wet. We used a hose for the lower parts and it worked great! I patted down with water and a soft hand towel my chest area and scars.  I also found the softest of my shirts or pj type fabric and used to put under armpits or lines the under areas of my shirts so my arm pits stayed comfy as best as they could. My underarms got a bit raw at times. I think I'm going to dry a power also.

     

    I hope this helps. I'm sure I will add more but for now this should work.

    Best of luck and hugs from one sister to another ;)

     

     

     

  • Pixie Dust
    Pixie Dust Member Posts: 424 Member
    #5
    Bi-laterial Masectomy

    Mamaxs2, I had bi-laterial Masectomy on Jan.23 without reconstruction. I had no trouble at all. I thought it was going to be worse than it was but if you do everything your surgeon says to do you will be fine. I am sure they will give you an information packet for you to use. Theirs no use in me going through all details of my surgery because New Flower and RozHopkins explained it well. I will tell you though my doctor said I could not lift my arms no higher than my chest and not lift anything over 10lbs. No stretching of arms at all. You will absolutely need help since you have small children because you are going to have to take care of yourself so you will not cause any damage to yourself. I have no children so I had no problem at all. Only problem was the drains and my husband helped me alot with mine for a couple of days until I got use to doing it and recording it on the paper. I did number my bulbs 1,2,3,4,and that  helped me alot when I drained them and havings to record the draining. Please be careful and do not let the children around your drains in any way because they can be pulled out easy by accident. Best thing to do is pin your bulbs to the inside of a open blouse or pj's. One other thing, if you have a recliner sleep in it and rest in it and you will not have any trouble with trying to get up. I sure do hope you have one, this was what made it so easy for me to sleep and rest. Its ok to be scared, I was too and was really surprised how well i did, but if you have help with the children you will do fine. Please let us know how things are going. Hugs to you, Pixie Dust

  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #6
    I have no advice since I had

    I have no advice since I had two lumpecomties..I am sure others will be very helpful with suggestions and ideas...

     

    Denise

  • mamaxs2
    mamaxs2 Member Posts: 12
    #7
    Pixie Dust said:

    Bi-laterial Masectomy

    Mamaxs2, I had bi-laterial Masectomy on Jan.23 without reconstruction. I had no trouble at all. I thought it was going to be worse than it was but if you do everything your surgeon says to do you will be fine. I am sure they will give you an information packet for you to use. Theirs no use in me going through all details of my surgery because New Flower and RozHopkins explained it well. I will tell you though my doctor said I could not lift my arms no higher than my chest and not lift anything over 10lbs. No stretching of arms at all. You will absolutely need help since you have small children because you are going to have to take care of yourself so you will not cause any damage to yourself. I have no children so I had no problem at all. Only problem was the drains and my husband helped me alot with mine for a couple of days until I got use to doing it and recording it on the paper. I did number my bulbs 1,2,3,4,and that  helped me alot when I drained them and havings to record the draining. Please be careful and do not let the children around your drains in any way because they can be pulled out easy by accident. Best thing to do is pin your bulbs to the inside of a open blouse or pj's. One other thing, if you have a recliner sleep in it and rest in it and you will not have any trouble with trying to get up. I sure do hope you have one, this was what made it so easy for me to sleep and rest. Its ok to be scared, I was too and was really surprised how well i did, but if you have help with the children you will do fine. Please let us know how things are going. Hugs to you, Pixie Dust

    Thank you

    Thank you so much for all the information.  This is overwhelming, but I know I need to know all of this.

  • mamaxs2
    mamaxs2 Member Posts: 12
    #8
    bonbondidit said:

    Double mastectomy and recovery

    Hi mamaxs2,

     

    I just had my double mastectomy on Aug. 5. I had to have a radical mast on left with axillary nodes all removed and a basic mactectomy on the right with no lymph nodes removed. I chose to have the skin sparing type and no reconstruction afterwards. (I'm going to do that further down the line after chemo.) Here are my suggestions for a best outcome :

     

    Let them know you want anti nausea meds with anthesthisia. I usually do not do well with anesthisa so I stressed this to the doctors and they listened.

    Make sure you ask for a motion patch to be put behind your ear. This truly helps me from being too off balance.

    Ask the hospital or surgeon if they will provide a "drain pouch (s) " for your drains to be held in during recovery.  I ended up creating mine by having the nurse bring me something pouch like from her station.   She brought me what looked like a large plastic medical pocket looking thing with long straps that could go around the neck and waist. Two drains could fit per pocket. It was like a Sash purse.  We cutt the straps off and pinned the corners with large strudy safety pins to the inside of my shirts and then put the drains in the  pouches so I didn't have to deal with a strap tied around me or up around my neck. I was hands free and it was nice! Plus to be honest they were away from bacteria and sanitary in there.  I was a little surprised that this type of thing wasn't already offered to women in our situation.

    Drain care: We bought large box of hypoallergenic gloves. Alcohol swabs. Antibacterial cleanser.  So I would Anti bac on hands, gloves, then alcohol swab the drain area cap before opening the cap and pouring into measuring cup.

    Invest in the MOST softest and comfy pillows you can. I was gifted the memory foam pillows and they saved me.  I highly suggest sleeping upright in a sort of reclyiner type position.  You will need a strong pillow as your base for your back, then another large pillow with the ends going North and South to put ontop of the strong pillow, then two of the best pillows you can find to go under each arm for support. This allowed me to not have to use my pectoral muscles too much and my over all upper body as least as I could. Your legs will be your best friend allowing to grip and pull you up and out of bed when that time comes. You will roll to your side and then put your foot near the edge and allow yourself up. You will get the swing of it naturally.

    Meds: Pick up meds before surgery and have at home on your pre-arranged medical stations by end table in bedroom or dresser. Whatever is closest to  you.  Stool softener, laxitives.  This is huge!  Use prune juice and suppositories for relief!  I tried it all and this is what worked :) I had morphine the first two days, then weened from that and had Hydrocodone for two days.  I then went to only Advil 3 pills three times a day.  Looking back I would have added  hydrocodone at night before bed every night (make sure to get anti nausea meds for home..  I really was blessed with great sleep during my recovery due to the pillows being situated in the correct way.

    Food:  If you don't belong to a church, sign up. Ask for a care calender and have them bring you food. This is the best blessing in the world!!!!!If not church then have a friend set up a care calendar for friends and family.  Protein is your best friend. Stay away from too much pasta and breads due to constipation in the beginning. WATER WATERWATERWATER is also your best friend.  By a Brita or likewise water purifier pitcher. This was so convenient for us to use.

    Pace yourself. Do NOT do anything other than occasional walks through the house to build strength and get things flowing in your body again. If you are by yourself put everything low before hand. 

    Cleanliness:  Use flushable wipes for armpits or something to tuck up in there to clean yourself out.  Once the swelling subsides your under arms will need attention. They are sore so I used a towelette and tucked them in there and held them there until the rest was cleaned and then I would take them out and flush.  We used a towel in the shower/bathtub then a chair ontop of that so it wouldn't slip. My husband cut a hole out ofthe bottom of  a large trash bag and slipped my head through it. We then medical taped it snug around the collar and he washed my hair this way.  This is the time where you let things go and focus on bein clean. If a friend has to do it, they will with no problem, let them. This allowed the drains not to get wet. We used a hose for the lower parts and it worked great! I patted down with water and a soft hand towel my chest area and scars.  I also found the softest of my shirts or pj type fabric and used to put under armpits or lines the under areas of my shirts so my arm pits stayed comfy as best as they could. My underarms got a bit raw at times. I think I'm going to dry a power also.

     

    I hope this helps. I'm sure I will add more but for now this should work.

    Best of luck and hugs from one sister to another ;)

     

     

     

    Thank you so much for all of

    Thank you so much for all of your helpful information and for being so open and honest.  I am sure I will read and re-read all of this, so it sinks in.  Right now, with my surgery being two weeks away, it is overwhelming, but I know I must do it, and that I will get through it with the help and support of family and friends and my new network of online friends.

  • Pixie Dust
    Pixie Dust Member Posts: 424 Member
    #9
    Left somebody out!!!!

    Mamaxs, My reply to you on needing and what to suspect having a bi-laterial mastectomy  I did leave an important person out in giving good advice also. I left out Bonbondiidit. She gave good advice also. One thing I can say everybody on here gave you good advice. Now your job is to put it all together and go from there and I know you will do fine. LOL.  Sounds like all advice is great. Please keep us updated on your surgery and how you are doing. hugs to you, Pixie Dust

  • VickiSam
    VickiSam Member Posts: 9,079 Member
    #10
    disneyfan2008 said:

    I have no advice since I had

    I have no advice since I had two lumpecomties..I am sure others will be very helpful with suggestions and ideas...

     

    Denise

    Miss Bonbondidit cover much of what I would of posted

    of helping information ..  with 2 children,  I would add -- just my humble opinion (i have been there, done that - LOL)

    suggest moving heaving object i.e. milk etc on a lower shelf in the fridge -

    washing anything NOT nailed down in your home, prior to surgery -- also, smaller containers of laundry detergent, fabric softener will help you during your first few weeks.

    buying any upcoming Birthday gifts, Wedding gifts ahead of time (you may be unable to drive for a few weeks)

    arrange daycare, playdates for your children first week after your surgery .. drop off, and pick ups - with your focus onrepaying your friends in a few months.

    cook, bake, cook or buy frozen dinners -- anything that will make your life easier after surgery...  My first 2 weeks were the worse - and my family tired quickly of the fast food dinner experience.

    Ask your Doctor for prescriptions before surgery, get them filled  .. if possible

    Spoil yourself with a new book, special body lotion, something special that will make you smile after surgery --

    Remember this is your time to heal, deal, and progress to the next step of your journey.

    Strength, Courage and HOPE for a Cure.

    Vicki Sam

     

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