mastectomy before and after

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Hi all you wonderful ladies. I will be having a bilateral mastectomy soon. I would love any advice you can give me. I have opted out of reconstruction. What questions should I ask my surgeon? What should I take to the hospital. What would I need once I get home? Did anyone have a local anesthetic instead of going completely under? Thanks!!!!

Patty

Comments

  • nagem
    nagem Member Posts: 353
    edited August 2009

    I would specify that you want to be absolutely flat (no skin-sparing mastectomy), like a 10-year-old boy (assuming you do want that). Bring button-up shirts and pull on pants (pajamas, in other words!) I found that the recovery was pretty quick and painless, though the drains were a nuisance. I was back at work in two weeks, and feel I could have gone back after one. Good luck!

  • aspen
    aspen Member Posts: 102
    edited August 2009

    I agree with nagem.  The drains were the most trouble and that is because they just were in the way.  I too was back to work in two weeks and felt well enough to go before then, but had to wait on the dumb drains to be taken out.  Good wishes and stay strong.

    Rita

    Three time survivor.

  • mke
    mke Member Posts: 584
    edited August 2009

    Put things that you want to access easily below shoulder level.  Like your coffee mug or some medication.  Reaching up will be difficult for a few days.

  • Erica3681
    Erica3681 Member Posts: 1,916
    edited August 2009

    I offer some advice on my non-profit website, BreastFree.org. Particularly check out the Post-Surgical Interim Solutions section.

    I second nagem's advice that if you want to be nice and flat after surgery you should specifically request your surgeon NOT to do a skin-sparing mastectomy but rather to make the result as smooth and flat as possible.

    Best of luck with the surgery.

  • dancingneedles
    dancingneedles Member Posts: 18
    edited August 2009

    To ask your surgeon:  Ask about post-surgical care now while your head is clear and not fuzzy with surgery meds.  Ask about dog-ear deformities (extra skin under arms)...they can be removed.  Find out what is recommended for post-surgical bras/poofies and how soon you can wear them.  Find out what over-the-counter pain meds are recommended and purchase before surgery...make sure you have an easy-to-open container.  Ask about stool softeners (NOT laxatives) and when to start taking them to prevent constipation from pain meds.  Colace is over-the-counter and often recommended.   

    Hospital items:  Soft, loose, front-opening robe to wear over your hospital gown while walking around the nursing station.  Make sure it is large/long enough to cover the drains.   Lip balm and throat candy as your throat and lips may be very dry from entubation.  Small WASHABLE soft pillows to protect sore areas from the car seatbelt after surgery...some hospitals have these donated by volunteers.  Consider taking your own daily meds in original prescription containers.  It will be cost-saving.  Put everything in a large ziploc with your name and contact info written on it.  Don't forget to take them home afterwards!  Take a small notebook and pen--you may want to write down post surgery directions, med schedules or even track hospital care to verify with your bill at a later date.  Get pain prescriptions in easy-to-open containers.

    At home:  Either a wedge for the bed or a comfy recliner for the first few days.  Several soft pillows to help position yourself comfortably and to prop up your arms.  A soft, lightweight blanket or throw.  Move dishes, cups and any other shoulder high items down to counter level.  Pour milk and beverages into smaller, easier to lift containers.  (I used empty water bottles--worked great.)  Have a pair of easy-to-slip-on shoes to go walking every few hours.  Consider having videos handy for the first few days of recovery.

    I had nausea from the pain meds so consider having Sprite Zero and gentle foods on hand.

  • racechick6929
    racechick6929 Member Posts: 13
    edited August 2009

    I had my mastectomy in Nov 2005.  Keep everything you need at low height.  Make sure you take the pain meds and most of them want you to take them with food.  I kept a box of crackers and bottled water on a dresser, along with a note pad to keep track of the amount of fluid from the drains.  The doctor will want to know how much you are draining, so keep track.  As much as the drains are a pain, if you can, keep them in as long as necessary.  I know 2 people that had their drains taken out too soon and ended up with complications of fluid build up in the chest.  I also put tape around the tubes and then put a safety pin on the tape and taped it to my shirt.  This kept them in place.

    As far as recovering, I slept alot and I was feeling a ton better after 2 weeks.  Let your body heal!

    I opted out of reconstruction.  Some reconstructions take 5 surgeries and more!  One gal has had 15 surgeries now for reconstruct.  NO thanks!  I stuck with the prosthetic.

    Good Luck!

  • nagem
    nagem Member Posts: 353
    edited August 2009

    I actually refused the pain meds, since the anesthetic had made me nauseated. I did fine with just tylenol. Amazing but true. And that avoided the whole constipation issue. 

  • dreaming
    dreaming Member Posts: 473
    edited August 2009

    Make sure before the surgery that you are not allergic to the tape they use, I found out AFTER! and I went crazy till they had to remove the tape.

    Also they sell camisoles perfect for after the surgery. A representative of ACS come to visit and gave me a perfect bra ,very soft with padding to use later.

    I also had my Teddy Bear to hug and cry. You will do great.

  • seaotter
    seaotter Member Posts: 1,083
    edited August 2009

    I knew I could count on you girls!!!! You are amazing!!! Thank you all so much for the wonderful advice.

    Patty

  • MicheleS
    MicheleS Member Posts: 937
    edited August 2009

    I had a single simple mastectomy and was back to work on Tues (had the surgery the Friday before).  The drains didn't come out till 3 weeks post-op.  I wore a post-surgical camisole to hold the drain and a big sweater (it was in Jan) to hide the lumps.  I'm having another mastectomy in Nov and have scheduled off from Wed (surgery day) to Fri.  I didn't have to stay overnight the 1st time and don't plan to this time.  I did have to take tylox the 1st night but was fine with tylenol after that... most of my pain was from the LN's taken not the breast area.

    Good luck! The mastectomy was the easiest part of all of this.

  • Mouser
    Mouser Member Posts: 245
    edited August 2009

    I had a single mastectomy a year ago, and specified no skin-sparing, since if i went for reconstruction it would be DIEP. When i started physical therapy, i was upset about the "extra" skin -- my ex-reast was wrinkly and it wan't getting better! -- and wondered if the surgeon had hedged on skin-sparing. My physical therapist said not at all, and that i was lucky to have the "extra". Then she showed me how it went all tight and smooth when i raised my arm above my head. She says women who have smooth skin when their arm is down  have a lot more trouble recovering normal range of motion.

    Incidentally -- i am a great believer in physical therapy -- specifically, myofascial release. I have full range of motion, and only a little tightness in the shoulder even with serious stretching movements.

  • nagem
    nagem Member Posts: 353
    edited August 2009

    Well, everyone's different, but I had a very tight mastectomy, no extra skin, very flat scars, no puckering, and range of motion was never an issue for me. 

  • JudyNaomi
    JudyNaomi Member Posts: 1,413
    edited August 2009

    Hi Patty

    I had a bilateral mastectomy in March 2009. I had intended to do reconstruction, but it didn't work, so the expanders were removed and now I am flat and am not considering any more surgery for the moment.

    Like any surgery, people are different, just make sure that they get the pain management right for you - I was on meds that made me feel nauseous and unwell and I was out of it for 2 days because of that.

    I had PT afterwards to ensure that my range of motion was as it should be.

    All the luck in the world to you! Judy xoxox

  • Sher
    Sher Member Posts: 540
    edited August 2009

    I had bilateral July 08 and I have really large "dog ears" on each end of both incisions.  Yes, I know I can go back and get them fixed - have consulted 2 different plastic surgeons, but I'm so tired of surgery and absolutely HATE that this is necessary.  I am overweight and I was led to believe by my surgeon that "small" dog ears are pretty much unavoidable whether thin or heavier, yet I've read other posts here that let me know it does not have to be this way!  I found sites on a Google search where the incision was put on a diagonal instead of straight across and this was suggested to have less problems with dog ears.  I really don't mind being without boobs, but the excess, redundant tissue is awful.  Unless wearing heavier weight clothing or layers, it is difficult to go form free without showing the humps and bumps.  So in a nutshell, a great surgeon can make a huge difference! 

    Blessings!

  • nagem
    nagem Member Posts: 353
    edited August 2009

    Sher, That's interesting about the angle of the cut. I have diagonal scars, which I assumed my surgeon did to incorporate my old lumpectomy scar. But maybe she did it to avoid dog ears. It was successful, in any case, so maybe that's something Seaotter should ask her surgeon about. My scars are not precisely symmetrical, but it's less and less of an issue as they fade (and I no longer pay much attention to them). 

  • Kathy16
    Kathy16 Member Posts: 135
    edited August 2009
    My situation was a little different b/c I opted for reconstruction.  I've never heard of them doing it with local anesthetic - I had general.  Usually I get sick to my stomach, so I made a point of stressing this to the anesthesiologist.  They gave me a patch behind my ear before surgery and for the first time in my life I didn't get sick.  It was like a miracle.  If you're concerned about general, you should ask your questions and tell the surgeon and anesthesiologist  They have very good meds now to handle the side effects of anesthesia.  Some practical things that might help after surgery include - shop for nice button down shirts (you won't be able to do pull overs for some weeks, especially if any lymph nodes are taken) and the mastectomy camisoles (you won't want any bras right away).  The most comfortable one I found was the Amoena on www.thepinkbra.com.  You can "step" into the camisoles and pull them up rather than over your head.  They have inserts if you want and the inserts are fiberfill so even a few days after surgery you should be comfortable with the camisole.  Also, I was very frightened of the operation and drains -but  it was a fairly easy operation - I had good surgeons and my plastic surgeon put a local pain pump in the surgical site so I didn't even need pain pills really.  Before the surgery, I went to google and entered "mastectomy" - it brought up a UTube video a woman had done showing the drains and talking about mastectomy.  Maybe you can search it on UTube.  I thought it was one of the most generous things anyone had done.  The drains were cumbersome, but not a problem to empty - you will do fine.  I would also recommend doing the exercises they tell you faithfully.  I had my surgery in June and now I can lift my arm all the way over my head and am back to wearing pull over shirts. Thankfully thus far I've had no problem with the arm, but I did everything the surgeons told me.  Lifting, housework, etc. will be limited for a while, so let family and friends help you and be good to yourself.  God bless and all the best with your surgery.
  • Kathy16
    Kathy16 Member Posts: 135
    edited August 2009

    Sorry to post again - this is the link for the woman who did the videos - she did a number of them, so you can search and look for her photo for other ones she did.  Here is the one on the drains:

    http://www.youtube.com/watch?v=vvMgjBtGsOc

  • ailenroc
    ailenroc Member Posts: 308
    edited August 2009

    nagem, michele, aspen ...

    Wow: you all said you recovered basically in no time: days to 2 weeks. That is simply amazing to me. I had bilateral with recon 1 year ago and altough I think I recovered well, I don't feel that I ever got back to normal and I was suprised in the immediate aftermath at the level of disability, not being able to dress, even feed myself the first 2 days (3 day hospital stay). I wonder what accounts for the difference? And I'd love for you to add your experiences to the thread:

    "back to normal after mx"   at  http://community.breastcancer.org/forum/58/topic/739258?page=1#idx_11

    because your experiences seem to be so different but good to know.  

    seaotter: I posted a good bit of pre and post mx prep and after care at this thread: Bilateral or Unilateral Mastectomy? Implant risks?

  • nagem
    nagem Member Posts: 353
    edited August 2009

    airenroc, Maybe we're talking apples and oranges here. I had a bilateral mastectomy without reconstruction, so my surgery and recovery were much more straightforward. 

  • starzhere
    starzhere Member Posts: 162
    edited August 2009

    That's interesting about the incision angle and dogears.  My incision comes from under my harmpit and arcs down at the opposite end (mid chest) and I don't have any dogears.  I have been told by other doctors what a wonderful job my surgeon did.  He, also, left enough skin, so that I didn't have any tightness on that side.

    The recovery from a unilateral wasn't bad at all.  I was in the hospital two nights.  I had one injection of morphine after the surgery and some pain pills in the hospital and didn't need anything at all at home.  It did, however, take about 4 weeks for me to be able to raise my arm all the way up.  

    Be prepared to have someone comb and wash your hair, since I had a hard time with that for at least two weeks.  The drains were no biggie. 

    ~elaine~

  • dreamwriter
    dreamwriter Member Posts: 3,255
    edited August 2009

    The best gift my daughter ever gave me was that she paid a nearby hair stylist to JUST wash my hair after the mastectomy.  I hated dirty hair and she found a way around it.

  • mawhinney
    mawhinney Member Posts: 1,377
    edited August 2009

    If you are concerned about nausea, talk to the anesthesilogist as there are different types or levels of meds they can use.  I had some mild nausea after my mastectomy. When I went back into surgery for the exchange, I mentioned the previous nausea. Doc said they would use a different level of meds and I had no problem.

    After my surgeries I wore blouses with 2 strategically placed pockets that buttoned down the front. The pockets helped hide bandages, pumps ect.

  • ailenroc
    ailenroc Member Posts: 308
    edited August 2009

    I am duly impressed by those who seemed to recover in no time, e.g.,

    Athena: bilateral on Thursday, and back to work on Monday.

    Does anyone know if there is typically a systematic and dramatic difference in recovery time between mx without versus with immediate reconstruction?

  • Erica3681
    Erica3681 Member Posts: 1,916
    edited August 2009

    ailenroc,

    I think it's generally true that recovering from mastectomy surgery without reconstruction is easier and faster. It stands to reason, since it's a shorter, less invasive surgery. Of course, the skill of the individual surgeon(s) involved makes it hard to totally generalize.

    In my case, after my bilateral mastectomy without recon, I left the hospital after one night, was off narcotic pain meds after the first day, except for 1/2 vicodin at night for the first few nights. I was able to start physical therapy after two weeks, which helped me regain range of motion really quickly. After a month, I could do virtually all activities I did before.

    I currently have two friends who are undergoing expansion after bilateral mastectomies with TEs inserted. Though they're both younger than me, they've had a much more challenging recovery than me, necessitating many more pain meds and more down time. After all, their pectoral muscles had to be cut in order to insert the tissue expanders, so it's not surprising that the additional cutting plus having to adjust to foreign objects in the body would make recovery a bit harder. Also, the expansion process itself, with its stretching of the muscles, can cause additional pain along the way. I realize that for many women this expansion process is well worth the slower recovery and added discomfort, but mastectomy without recon does usually result in the speediest healing and quickest return to normal activities.

    Regarding the dog ear posts above, I had non-skin-sparing mastectomies with horizontal incisions and I have no dog ears at all, just a smooth flat surface. I'm quite thin, though, so perhaps the diagonal incisions lead to better results for heavier women. 

    Also, regarding the nausea issues, I knew going into my bilateral mastectomy that I had horrible issues with nausea after anesthesia and with the morphine pain meds given right after to alleviate pain. I told the anesthesiologist and he gave me dilaudid instead of morphine. MUCH better. 

  • seaotter
    seaotter Member Posts: 1,083
    edited September 2009

    Thanks again ladies!!! I see my surgeon today and I am armed and ready!!!!Smile

    Patty

  • tabby
    tabby Member Posts: 135
    edited October 2009

    I had a bilateral masectomy in May of this year and one of the greatest blessings was having a pull down shower head so I could at least have my husband squirt me off and I could sit down and he could wash my hair.  So glad we did that.  Also, the third day is the worst.  After that you will be fine.  Lived/slept in the recliner for the first two weeks.  I'm glad to hear so many of you recouped so early.  I had a lot of pain but my mobility was surprising.  I did have tissue expanders placed at time of surgery but had infection and they had to be removed on Father's Day.  That might explain why I had pain so long, don't know.

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