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Recovery time for double mastectomy

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tomc View Drop Down
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    Posted: Oct 01 2010 at 10:38pm
Hello Again,
My wife Connie is having a double mastectomy next Friday the 8th of October.  I am wondering about recovery times and how the first couple days go.  My plan is to take the following week off to make sure things are OK and at that time her folks will move in for a week or so so I can go to work.  How long until she can move around? How long of a hospital stay will it be? She is also having expanders put in.  Thanks in advance!
Tom
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Hey Tom & Connie!
I am not experienced with this (yet), but I am sure some of our members will be dropping by with all the information you need to get through this part of the journey. 
 
I remembered a few things and told Connie what to sort of expect and what I noticed others found useful.  I will find the post and re-post it here for you.  Sounds like you have everything under control! That is a good thing!
 
How are you doing, my brother???? How are you feeling, my brother????
Your sister on the journey, Helen in NS
 
 Found it:
I am not a mx person, yet so I can't comment from experience but the ladies that have posted have mentioned the lazy boy chair as being their best friend in the first couple of weeks due to getting up and down from the horizontal position. Denise just had her's done so she will probably pop in soon and give you a detail of all the things she encountered. By the way, Denise is doing her yoga and things around the house and she is only two weeks out of surgery! She is definitely the one to talk with!
 
The drain tubes were bothersome for some, but there is a belt ask the nurses, it makes movement easier as well as draining the tubes.  Small pillows are great, they keep the upper arms away from your sides so you don't get chaffed. Exercise is the most important! Do the fingers walking up the wall so that you can get a good range of movement with your arms. Don't lift over 5 pounds....That is all I can think off the top of my head... sorry..


Edited by TNBC_in_NS - Oct 01 2010 at 10:57pm
Diag@57TNBC04/092.5cm Lquad 05/09 TCx4Radsx30CT03/01/10 FU03/31/10ClearBRCA- 01/2011 RTNBC BMX 06/14/2011~2013 clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Oct 01 2010 at 11:59pm
Hey, Tom.  I had this exact surgery on the 16th of Sept (two weeks and one day ago), so I can at least fill you in on my experience.   Well, almost the same surgery.  The only difference might be that I had immediate reconstruction with silicon implants and alloderm in a skin and nipple sparing procedure, rather than expanders placed.  My sense from reading bc.org boards is that the recovery is almost identical, though.  Anyways, it was not as hard as I feared, not even close.  In the US patients tend to have surgery in the morning and spend a single night in the hospital.    I woke from the anesthesia feeling decent enough, though of course still on pain meds.  I was able to walk to use the rest room pretty much immediately after surgery, and by the next morning I was taking strolls around the hospital with friends.  I checked out of the hospital at around 1:00pm the next day with pain med prescriptions in tow.   I brought home some percocet and a little ativan.   Overall, I experienced very little pain, mostly some pressure, but I kept up with pain meds for the first few days on schedule to avoid the possibility of being in a lot of pain.  By day 4 I was completely off pain meds, but I was functional way before then.  Two days after surgery I went to a Yom Kippur service for about an hour and a half.  I started walking daily maybe the day after that, and was up to my usual hour a day by about day 6.    The most annoying part was dealing with the drains, which I got out on day 5.   My energy has returned day by day and is now fairly close to normal.  I am back to doing yoga and taking exercise classes during this week off work, though I have been taking naps most afternoons.  I will return to work on Monday, and am surprised to find that the 2.5 weeks I took off work looks like it is actually enough.  Overall, you can see that the recovery has been pretty decent, much easier than I had feared.

As for advice - well, I'd say that she should take her pain meds on schedule the first few days, and be sure to take a stool softener with them as narcotics are constipating.  Also, as she will be on antibiotics for two weeks to prevent infection, she should take probiotics to keep her digestion and such as normal as possible.  I tend toward yeast infections, so this has been important for me.  She should drink lots of fluids, and if she is like me, will be mostly craving brothy soups and mug after mug of herbal tea for the first four days or so.  Oh, if you know of an herbalist, you might get the standard pre- and post- surgery herbs.  I took those in my tea, and believe they helped me recover as well as I have.   If her energy allows, she should start taking walks even while still in the hospital.  She can start with a walk around the ward the day after surgery, and once she gets home, take her for walks around your neighborhood every day, adding time each day energy permitting.    If she is the sort who likes yoga and stretching, she can start doing light stretching within days, pranayama yoga after the first week, and regular yoga after two weeks.  Once I started doing pranayama - very gentle yoga with lots of breathing into the chest area - my recovery greatly accelerated.   I strongly recommend deep breathing as she gently stretches her arms and chest.  This may sound nutty, but I my right nipple - the irradiated one - was black and looked like it might not make it until I started doing the breathing and stretching exercises.  Once my breath got flowing and my body got moving, vasculature from above the incision extended itself into the sad little nipple and brought it back to life.   I'm pretty confident it's doing well now.   If she is likes athletic yoga, you can tell her that I found that I could put weight on my arms comfortably about a week and a half after surgery, but I don't yet have complete freedom of movement in my right shoulder (the side that was irradiated in 2008).   I started driving again around a week and a half after surgery.  I tried to do it earlier, but was surprised to find that pecks are super engaged turning the wheel, and mine weren't ready for that quite yet.

I guess that's it for advice.  Rest, lots of fluids, movement, breath, great company, good movies and books, regular pain meds at first.  

Oh, if you can, get a lanyard or some such thing (shoelaces?) for her to wear around her neck and attach her drains to in the shower.  I showered the day I got home, the first time assisted by my husband (he washed my hair for me).     Have her bring a shirt to the hospital that opens from the front, either a zip up hoodie or something with buttons.  At some point she'll probably want to get rid of the surgical bra and use her own instead.  A zip up, larger-size-that-you'd expect, sports bra (JC Penny $20) works well.    Hmmm....other advice?    Tell her not to be afraid, that it won't be as bad as she fears.  Also, she can go to breastcancer.org, and sign on the the mastectomy discussions.  They are organized by surgery month.  I read through those as well as joining, and was heartened to hear how well everyone was doing and how quickly most people recovered.   One final note:  I had a 'tata to the ta-ta's' boob retirement party the weekend before my surgery.  During the party I had a ridiculous ritual where we madly popped all the balloons as ritualistic sacrifices to symbolize what was to come.  Strange as that sounds, it really helped me emotionally prepare.   Do you guys have something planned, some ritualistic goodbye ceremony, to help prepare her?  I'd recommend it.  It'll condense the grieving process.

Good luck!!!!!!    Please keep us posted.

love,
Denise
DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Oct 02 2010 at 12:06am
I neglected to answer one of your questions:  she'll need someone around for about 4 days, and even during that time she'll be able to move around and do simple things, so long as they don't involve lifting more than a couple lbs.      Your week off with amply cover her needs.   Her folks can come if you all want, and she might enjoy the pampering, but she won't need them.

She will spend only one night in the hospital, unless there is an unforseen complication.


DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Sunshine13 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 02 2010 at 1:21am
Denise,
Thanks so much for the information.  Can I ask why you decided to have the bi-lateral masectomy after 2 years out?  Also what was the feeling from your oncologist and surgeon about nipple sparring masectomy since you're brac +.

I am in my 5th cycle of neoadjuvant chemo (Gemzar/Carboplaitin) with the Parp inhibitor at Stanford.  Women in this clinical trial all seem to be having really good results.  My 5cm+ tumor basically melted away after the first cycle which made them suspicious that I was BRAC+, so they suggested genetic testing despite no family history of the disease, but Ashkenazi background.  I was BRAC1+, and because of that the first surgeon and oncologist feel that nipple sparring is so controversial and not recommended for me. However, from what I see from photos the results look really good.    Could you share your research on why you made that decision.

Thanks for the help.

DX 6/8/10. Age 52 IDC-triple negative. Stage 3, Grade 3 - 6 cm. BRAC1+
Started neoadjuvant chemo 7/9/10 Gemzar/Carbo/BIS201 (parp drug-Stanford trial)
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Oct 02 2010 at 2:05am
Tom,

I had the exact same surgery.  I had the surgery around noon time one day and went home the next morning.  My husband took a week off of work.  He even stayed with me at the surgery center overnight because I was scared.  He moved the recliner into the bedroom and I slept in it the first week.  Put pillows on each side and it's really comfy.  He helped me with the drain tubes, but after a few days I felt comfortable enough with it.  After the first week, I felt good enough to sleep in the bed and could kind of roll out of it.  When hubby went back to work he'd just make sure my glass and bowl were on the counter so I didn't have to reach for anything when he was gone.  At first you don't want to be reaching for anything.  My ps said to think like you have alligator arms where you keep your elbow by your side. 

For the first month, you don't want to do a lot of reaching or anything with your arms.  You also don't want to lift anything heavier than a milk jug.  I think after the first week things got easier.  It was hard to remember to limit my activity.  I'd feel really good and try and do something normal, only to realize I was pushing myself too soon.  When I did it, I usually paid for it the next day.  So tell Connie to take it easy but she'll be feeling good in no time.  I started chemo about 3 1/2 weeks after the double mastectomy and I remember feeling pretty good physically.

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote TNBC_in_NS Quote  Post ReplyReply Direct Link To This Post Posted: Oct 02 2010 at 9:34am
Denise and Donna:  What a wealth of information and kindness you have shared! 
                                    You two ROCK!
                                    Wonderful, Wonderful is what I call you both!
 
Tom, Connie and Sunshine:
Here you have it from the gals who have been there and went through all the tortures of the mind pre-surgery!  We have such great sisters and brothers here on this site! Thank you for asking about their surgeries and recoveries! And thank you ladies for telling your surgery journey!
Bless you all, Helen in NS
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Post Options Post Options   Thanks (0) Thanks(0)   Quote tomc Quote  Post ReplyReply Direct Link To This Post Posted: Oct 02 2010 at 10:58am
Wow! That is exactly the info we were looking for! THANK YOU. If there is any more info keep it coming!
Tom
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Oct 02 2010 at 11:28am
Tom, I can add just a couple of things. Both my sister and I have had the dbls and we had different experiences.
 
My sister went as an outpatient: she went in at 8 am, they kept her all day and sent her home at 4. She arrived home wrapped like a mummy up top and they told her she would stay wrapped for 10 days. No showers allowed. Each day for the 10 days a visiting nurse would arrive to to drain the jugs they attach to the incision. She and I would drain them a 2nd time each day. She did not experience much in the way of pain and healed well. She was very uncomfortable with the bandaging however and so I would not encourage anyone to go with the outpatient route. Her original reasoning was that her local hospital has a high MRSA rate while the small outpatient clinic has been MRSA free.
 
For me, I live a 7+ hour round trip drive from my doc and hospital so I'm always a problem child. I was out of a 3 hour surgery and into my room by 2 pm, my hospital has spare beds for advocates so my girlfriend stayed with me. My surgeon is a fan of pumping a post operative patient with liquids so my 'lucky' (hahahaha!) girlfriend got to get up with me every half hour! to head for hte loo. I will forever be grateful!
 
I never took pain meds, just didn't ever need them. I was able to shower by myself the first day and drive myself over to the surgeon's office 3 days after surgery (again that damn 7 hour thing) and he did some extra draining on the site (which is normal) and took out a couple of my staples.
I met with him 2x that first week, then 1x a week for 5 weeks. He took 2 of the drains out after 7 days and the last 2 the following week. His decisions were based on how fast I was healing and how much goop the drains got.
 
A little heads up. You will probably be asked to 'milk' the drainlines. I found that as I started to heal, a couple of my drainlines didn't work as well as I told them to! A good technique I devised is to lay the grenades (that's what I called them) on a countertop, spread out so that the lines are straight and will drain better. Then I took a fountain pen with a smooth barrel and rolled it from me to the grenade slowly to force the liquid along into the grenade. The surgeon approved of the method wholeheartedly!
 
I also bought a tin of bag balm and my surgeon told me to spread it along the scar line (yes even when I still had staples in). It worked wonders and would highly recommend it. Clothing at this point is basically a throwaway, between the bag balm and stuff it just makes a mess. At our local Walgreens I was able to score on some really cheap tank tops that I was actually happy to toss when the time came. Loose is our friend!
 
Lastly, I was up and walking 2 days after surgery and I was up to 1/2 mile short hikes within 4 days. Once the grenades were off I started doing longer hikes, and windmill motions with my arms. Depending on how many nodes are removed she may discover that she has some nerve damage. It takes the form of these little ambushes, sharp stabbing small pains when you move wrong, nothing to worry about, they pass quickly but are a little alarming if you don't know what they are.
 
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Oct 02 2010 at 11:36am
Mainy,

Great advice.  I forgot about the windmill exercises.  Did you do the "walking the wall" where you'd stand by the wall and using your finger tips walk up the wall like a spider until your arms were raised above your head and you were almost touching the wall?

I didn't have staples from my surgery.  My plastic surgeon used dissolving stitches and glue.  To me it reminded me of super glue.
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Oct 02 2010 at 12:41pm
Sunshine, congrats on your great response to chemo.  The tumor 'melting away' is such a fantastic sign for your prognosis (and the reason behind better outcomes for BRCA+'s).   As for the nipple sparing mastectomy - I am BRCA negative, so I thought I'd risk the extra percent or whatever to keep mine.  I think I would have removed them had I been BRCA+.  Still, to make your decision, you might want to look into exactly how much extra risk you'll have by keeping them.   I suspect it's quite small, even for BRCA+'s (cancers usually start away from the nipple).
love,
d
DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Oct 02 2010 at 12:48pm
Sunshine: Oh, my reasoning:  I have extremely lumpy, hard breast tissue and have been plagued by a series of scares of every description.  The latest was a new lump in the 'good' breast, followed by a suspicious but inconclusive MRI.  At that point I decided I'd had it, and would just get rid of both of them.  I've thought from the get go that if I didn't eventually get rid of my breasts they would make a new primary cancer within the next years.  I was going to wait three years, but accelerated my plan by six months when the latest lump/MRI issue came up.  At the moment, I have no regrets, though of course some sense of loss I'm working through. 
love,
d
DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote conniec Quote  Post ReplyReply Direct Link To This Post Posted: Oct 02 2010 at 6:36pm
Thank you all for the info.   I'm feeling pretty good from the node surgery.  Took pain meds for a couple days.    I'm trying to increase my water intake and  also taking D3.  I'm going to go to the good will store to get a few tops with front closure.  You know how hard it is to find something specific when you need it "now".  
Connie
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Oct 02 2010 at 7:18pm
Connie,

After the bi-mx, I wore some of my hubby's button down shirts.
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 02 2010 at 7:59pm
Also t-shirts, tops inside out, seams will irritate.  Any shirt a bit too large, hubby's t-shirts for example, inside out.  Soft things, silky camis, fabric that won't irritate the sore skin.
There are post mastectomy cami's one can buy, here is one website.  They hold the drains which helps so much.  Now they are selling a drain belt which would work with pockets.
Stage 2 2003
Stage 1 2007
BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote fighter_34 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 05 2010 at 4:26pm

I am just so glad that it's over w/ it does take at least 3 days to get back to yourself.

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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Apr 25 2018 at 7:06pm
Bumping for new members.  Please feel free to add any advice on what worked best for you!

DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Apr 27 2018 at 1:34pm
I've used Bio-Oil on my scars - and my scars are extensive due to my complications and multiple surgeries - and I think it's really helped with the healing. Your scars continue to heal and change for a long time. The oil keeps them supple and helps them flatten. I religiously oil them up at least twice daily. All of them - the port scar, all my drain holes, axilla scar and mastectomy scars. Then I do my elbows for good measure :-)
Connie mentions yoga, which I just started. I really really wish I'd started it months ago! Amazon's Prime video has bunches of videos including "Yoga for the Inflexible" which is a good place to start post surgery. There's Therapeutic Yoga classes offered all over as well , another good place to start.
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/17 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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