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Recovery time-line after bilateral mastectomy and NO recon?

2

Comments

  • jinmo
    jinmo Member Posts: 55
    edited January 2017

    Hi to all, I am going to continue posting on this thread as I go thru the first stages of surgery recovery, just in case someone needs this info on a future search.

    I am now one week and one day out from surgery.

    I am doing well. I work from home and I have been able to put together about 4-5 hours a day of good work in the last couple of days. Before that, I did not try very much as my brain was still scattered (I did not have pathology yet, once I got that it was easier to think). The work I am doing right now is desk type work. I normally spend quite a bit of time on the road and do a lot of walking and lifting. I will not try to return to that for another week and then see whether I am ready to drive and travel. Right now I do get tired still during the day.

    My drains were removed 6 days post surgery. We kept dressings over the drain wounds for another two days, and now they are no longer covered and have closed well.

    I was given a set of post-surgical exercises and I do them faithfully, twice a day. This has helped a lot with arm and shoulder mobility so I would encourage anybody who is reading this before surgery to ask about the exercises (in other words, demand to be given exercises, I'm hoping this is a standard thing but I certainly didn't know enough to ask until the therapist came to explain them to me in the hospital).

    My pain level is low as others on here have noted. Mostly more of an ache than sharp pain. I do take Tylenol when I think I need some during the day, and Tylenol PM at night. My node removal side is most sore, but is settling down.

    I definitely have what some people have referred to as the wooden chest or iron bra feeling, very tight around my ribs below the incisions. I am trying to work on this with stretching and massage, not much success so far, but there is still some swelling so maybe it will get better.

    There is also miscellaneous phantom feeling as the nerves heal, luckily nothing too awful yet. Someone on another thread posted that their surgeon told them to hold their hands on or rub the areas with phantom pain, to help train the brain that the nerve is not feeling pain but just a normal touch sensation, so I have been doing that.

    I will try to post again in the relatively near future just to keep this thread around for those who may need it on the way into or out of surgery.

    There is one other thing I think will be useful, but I don't want to freak people out. DETAILED DESCRIPTION OF INCISIONS AHEAD (NOT GROSS, JUST MEASUREMENTS AND HOW THEY ARE PLACED). Please skip if you don't want to think about it.

    Take care, all.



    LAST WARNING BEFORE INCISION DESCRIPTION.

    I did not know really where my incisions would be, even though I tried to look online beforehand, I was not really in a state to "process" what I saw. So, what I have is two straight incisions. They are each about 8 inches long or so and extend around to the side of the body, under the arm. They are still healing but clearly are going to be tidy and flat someday. The main thing I did not anticipate is that they are fairly high, higher then the center/nipple area of my breasts was (my breasts were small and reasonably perky). I guess it makes sense for the surgeon to bring up all the extra skin from below, and attach it at the top. That was really the main shock when I realized where they were, and it might save somebody a surprise, so I thought I would post it here. Kind of freaked me out at first. I still haven't really taken a good look at them but I've glanced enough to know where they are. Hope this helps somebody.


  • jinmo
    jinmo Member Posts: 55
    edited February 2017

    OK, it's me again. I am going to post a couple times more, probably until week 4, just for future reference to somebody.

    This is just over 2 weeks after BMX. Things continue to improve.

    - My range of motion is getting better. Still not perfect but have my hands walked almost all the way up the wall facing forward. Facing sideways, not quite so high. Left (node) side still has less range in things like big arm circle motions. Exercise schedule continuing.

    - I took a short practice drive with my husband yesterday, and did real driving today (to a city 45 minutes away). Automatic transmission, no shifting, so I can't speak to that part. I worked there all day, which involved moving moderately heavy things around on shelves, taking them off shelves, generally in a downward motion. I did not have cause to pick things up off the floor, in other words no upward lifting of anything heavy. Pushing/pulling of the heavier stuff with my arms out in front of me was odd feeling and caused some electrocuted-frog type twitches along the incisions, which have continued tonight. The driving itself was fine. Lots of skin chafing from all the motion in spite of a soft loose shirt. Tired tonight, took Tylenol.

    - Still not pulling clothes over my head, button fronts and pull ups only.

    - Lost the "eat all the protein" craving after week 1, forgot to mention that last time.

    - Was able to handle truly looking at and observing my chest starting on Sunday. It ain't too pretty but it's going to be fine. Scars are narrow, slightly red. Still swelling and tightness below the incisions around rib cage, but getting less.

    - Recommend that you ask your surgeon not just what your scars will look like, but what your dressings will look like. I have Dermabond and I did not know for several days after surgery that it has a purplish color, I thought there was a lot more bruising than there is. My Dermabond is still stuck so don't be concerned if yours doesn't come off in the 10 days or whatever they tell you.

    - Some squishiness still under node arm, have added manual lymphedema drainage exercises which seem to be helping. I'm not sure whether to call it lypmhedema or post surgical swelling, we'll see. It is not bad. I now take my wedding ring on and off as a piece of jewelry rather than wearing it all night, just in case.

    - Have found that even though I though my scars were kind of high up on my chest, they are low enough for even my deeper v necks not to show them when standing. Will need a camisole just to not flash when leaning forward. So I am no longer worried about the scar placement.

    - Oh, and this has nothing to do with recovery but if someone pre-surgery is reading this, ask for anti-nausea meds before surgery. Bring it up at your pre-op appointment so they will know you want them. Anesthesia makes many people nauseated and I was so thrilled that someone on this board recommended asking, I would not have known to do so otherwise...I thought vomiting was just part of the deal from surgeries in years past.

    That's all I have for now, I will check in next week to add anything else useful I come up with.

    jinmo








  • goldie63
    goldie63 Member Posts: 36
    edited February 2017

    Thanks to everyone who posts on this thread. My surgery is planned for Mar 3rd. Long wait because first Christmas break and now my surgeon is out of town for a month. I don't want to change surgeons. I had a bad day yesterday including for getting a bit freaked about surgery and wishing I could just do nothing. Tired of all this crap

  • midwest_laura
    midwest_laura Member Posts: 114
    edited February 2017

    Jinmo: please keep us up to date.  This is very helpful!!!!

  • jinmo
    jinmo Member Posts: 55
    edited February 2017

    Well, it is time for another weekly update re: bilateral mastectomy without recon recovery.

    Laura and Goldie, thanks for your comments! I will keep this going thru week 4. Goldie, good luck with your surgery, it will come up faster than you think.

    All right, so here's what went on this week:

    1. Did a real business road trip, driving to a city about 3 hours away and trying to keep up my normal work schedule there. I stayed over only 1 night, this was kind of a test trip. It went reasonably well, but I was quite tired. Forward/upward reaching and pulling motions made me sore. Driving was fine except for some of the sharp slow turns to get into spaces in tight lots. (My car has rather "theoretical" power steering, I think I need some work done on it.). Going again today or tomorrow.

    2. Exercise continues. I am getting bored with the original set of 16 exercises they gave me, so I printed out some other post-mastectomy exercises from university hospitals/Sloan (i.e. not from random non-authoritative places) to give it some variety and I will start trying those today. I can get my right hand all the way up the wall while standing right up against it going forward. Standing sideways, close but my hips are still about 6-8" from the wall. Left arm, where they took the nodes is surprisingly close to right going forward, I think I'll get my nose on the wall today. Going sideways, it's still only at maybe 140-150 degrees.

    3. I did some yoga last night instead of my regular second session of the 16 exercises: Gentle Yoga for Recovery: https://www.amazon.com/Gentle-Recovery-Beyond-Camille-Kittrell/dp/B00PZ4PS26/ref=sr_1_1?ie=UTF8&qid=1486564421&sr=8-1&keywords=gentle+yoga+for+recovery. The video is actually very good, although I skipped through the 2 minutes or so of whatever she talks about in the beginning. I found her voice a little difficult at first, a little too "professionally soothing" which always makes make want to run in a circle and throw things. However, as the video went on and she was very specific about the names of the yoga poses and the muscles being worked, I was able to accept her voice since it was informative. Some of the poses were easy and a considerable amount of the video is done sitting or with chair support. At first I thought it was too easy but I did find the later work challenging, which actually then made me cry, because I can't get my darned arms all the way up for Warrior 1 or seated Sun Salutations, but hey, persevere, right?

    4. Sleep. I haven't really talked about sleep. I have been sleeping on a wedge pillow ever since the surgery: wedge pillow, plus soft pillow on top, plus heart pillow under each arm, plus normal pillow on left side to raise left arm. Slept propped with random pillows plus heart pillows and uncomfortable in hotel during my trip. But last night, I slept on a normal pillow, in my own bed, still with my heart pillows where needed and even got a couple hours of sleep lying on my right side. So that's progress. Heart pillows, if you're not familiar: http://www.angelpillow.org/. There are different shapes of these but mine look a lot like these Angel Pillows. I got two in a goody bag from local volunteers, and they are the bestest thing ever, truly. Mine are fleece, not filled with too much stuffing and oh so soft. I also received a random calico one in the same bag...smaller, harder, and kind of scratchy, unfortunately.

    5. Dermabond still stubbornly stuck, have received permission to remove. Suggested dabbing with rubbing alcohol did not work much at all, have ordered some medical adhesive remover from online, will report back. For any of you familiar with Loctite, I swear he used the Red Loctite on my Dermabond.

    6. Swelling under left arm decreasing. Band of hard tissue at bra band level still present, but loosening. Skin around front edge of armpits still extremely sensitive and easily chafed. Can take camisoles on and off over head now (carefully), probably wouldn't try it with a tight shirt.

    7. Started with cocoa butter massage earlier this week. That's what they recommended for scar massage and although I can't really massage my incisions much due to Dermabond, I have been using the cocoa butter to massage the rest of the area, chest, under arms, etc. Very nice, smells great, but very hard. You have to literally chip it out of the container and then hold the small pieces in your hand to melt them. It doesn't seem to melt in the microwave. I can't do the chipping-out part yet, too hard on my arms, so if you don't have someone in your house to do it, go with the Vitamin E oil instead.

    All right, this is turning into a book. I'll stop here for now, be back with an update next week.

    Good luck to all of you on your way into or out of this surgery.


  • jinmo
    jinmo Member Posts: 55
    edited February 2017

    Just a quick update this week. I will do a final one next week after my one month (a little late) surgical followup, just in case the doctor says anything useful that I can share here.

    This week has been the week of hurting myself by trying to do too much stuff. Nothing terrible, but I have made myself sore by lifting, pushing and pulling heavy things, and incorporating too many new exercises into my daily routine. So I am backing off a bit.

    I have laid down for a nap a few afternoons, or at least to rest. So tiredness does continue.

    Dermabond is off, finally. I used a product called Unisolve Adhesive Remover, purchased online. Scars look OK, still kind of red of course, some puckering, some clear stitch ends sticking out. It was hard to look at...you may want to have someone there with you for the first look...or not. Just know it can be hard.

    All right, that's it for now. I'll come back again after my appt.

    I also joined the Flat and Fabulous Facebook group, which I highly recommend. You don't have to go flat in public to be a part of the group, you can wear all the foobs you want! Well, probably not more than two at a time. Very nice women over there. The flat threads here are good too but the Facebook group seems more active.

    jinmo



  • jinmo
    jinmo Member Posts: 55
    edited March 2017

    All right, last post. I saw my surgeon earlier this week. Everything looks good and is healing well. Swelling is pretty much completely gone, except a bit under my right arm. Surprisingly, that's the "good" arm, the one where no nodes were taken.

    My left incision is also just a bit tidier than my right, but both are good, similar to what seems normal from looking at other pics.

    I can wall-walk my hands all the way up, no problem, both sideways and forward. I could still get a little more stretch, in other words, press more of my body against the wall. I will be continuing my prescribed exercises indefinitely. I have a referral for PT, not that I need much, I just want some continuing advice. Still can't quite clasp my hands together high over my head, e.g. for a yoga Blown Palm position but getting closer.

    Doctor had no particular advice to share other than to keep stretching.

    Still sleeping more and better than I used to.

    Iron bra feeling pretty much gone although I feel it occasionally, I'd describe it as more of a slightly tight Spandex bra at this point, and it is not all the time.

    Have been over on Flat and Fabulous, one interesting thing I've gleaned is that people seem to get back to normal range of motion with a wide variety of different exercises, or sometimes none. I was obsessed the first few weeks with finding the precisely correct exercises and doing them the precisely correct number of times. Apparently that was just my OCD coming out.

    Did a full-week buying trip last week, 4 hour drive each way, while having a putrid cold, and was fine, other than the cold. I was able to lift and move everything that I needed to except heavy boxes (30+ pounds), I hired help for that. Coughing from the cold did not hurt my chest or scars, something I was really worried about because I had pleurisy last year.

    General info about me: I'm 50, healthy but was never a big exercise nut, my breasts were a large A/small B, my frame is thin (not a lot of extra skin was up there, in other words), did not have any prior or concurrent cancer treatments going during this.

    OK, so that's it. One woman's experience with BMX recovery without reconstruction. I hope this will help somebody when they come along and search for recovery without reconstruction. There is so much great information on this board but a lot of times it is inside other long threads.

    Take care, all.

    jinmo

  • Kayla250
    Kayla250 Member Posts: 125
    edited March 2017

    jinmo, I have just done a quick skim over your current posts and I think they will help me in the near future . Thank you

    Heart

  • bellasmomtoo
    bellasmomtoo Member Posts: 93
    edited March 2017

    jinmo, thanks so much for your posts. My mastectomy is schedule for the end of March. Now I have a better idea of what may happen with me.

  • jinmo
    jinmo Member Posts: 55
    edited March 2017

    Kayla and BellasMom, take care of yourselves and good luck with your surgeries. Maybe post your own first few weeks recovery on the end of this thread if you feel like it, the more perspectives the better!

  • suburbs
    suburbs Member Posts: 398
    edited March 2017

    Hi everyone. Thank you for the revival of this thread. I am considering BMX with no recon. The reactions I have received so far from family and friends are not very supportive. I sense they think I am a bit crazy. And once you tell a medical professional it feels like they tune you out and move on. For folks here opting in to extra surgery and risk, understandably, are bonding with others in the same path is inevitable. I feel very alone.

    I have researched all the flat and fabulous info available here and at other sites. They are very helpful but more about the after part. It's a movement but I'm not quite ready to celebrate my decision. I applaud these woman and love the fellowship of providing a battle cry and gathering together to support.

    My interests are currently selfish and more short term. So here I am needing desperately to talk about this and hear from you if you can relate to any of the above.

    I want to receive a beautiful outcome, the best flat I can get with the least amount of disfiguring. My nurse navigator already told me that no plastic surgeon would bother to close me up or make things nice. No recon, no plastic surgeon. I don't like this. I am a 38DDD. Cleaning up that surgical site will not be pretty. I would like a one and done. If I am not doing recon, must I just settle for whatever because the doctors think no recon means I don't care about how I will look? Am I asking for too much?

    Reasons for bmx. Symmetry, no mammograms, one breast must completely go, no saving or sparing possible, wearing 2 bras to run has never been fun, totally risk averse to surgery, desperately need to go back to living without physical limitations of pending surgeries, sensitive skin like that of a baby, every contact allergy you can list, and slow healer as two biopsies are still giant hematomas.

    Any and all feedback about your experience and outcome, pitfalls, and ideas to communicate a need that is being ignored by the professionals tasked to put us back together would be greatly appreciated.

    I thank you for listening. I hope to hear your thoughts about any of the above. Struggling to make a decision and trying to have some say in the outcome



  • goldie63
    goldie63 Member Posts: 36
    edited March 2017

    Hi suburbs, sucks to be here but it's a good place to be if need be! I had bmx 1 week ago today, no reconstruction. No interest in implants, may go for a diep consult, but i'm thinking I'm just going to stay flat and fabulous lol. I had small breasts so that might impact immediate outcome anyway. my surgeon was surprised I was even considering no reconstruction, and that seems to be the norm, but he did a really great job and did not do skin sparing surgery 'just in case' I changed my mind. That seems to happen often enough too. I knew right away that I would not want implants ever so I didn't want excess hanging skin. I couldn't even really think about how I might look like flat but now I'm relieved to say I don't think I look ugly or awful, just odd. My surgeon did a really nice job. My (female) partner is also really supportive. We've been together 31 years, through my bc 20 years ago and now again, and she'd rather have me than my boobs she says. She also says it's my decision though, and that's true. I think it's a personal decision and it's scary because it's just a best guess I think for how we're going to feel about our decision. And sometimes I think it ends up being the least bad choice too, not necessarily the best good choice. Good luck to you. There's a Flat and Fabulous FB group (closed membership) if you want some other info on staying flat. They're (mostly) a no-pressure group with lots of info, and you can Join if you know you want to stay flat, or you're thinking about it. Take care. I wish you your beautiful outcome.

  • suburbs
    suburbs Member Posts: 398
    edited March 2017

    goldie63, thank you for your post and I wish you a good recovery. I appreciate your thoughts and perspective, I hope this thread gets more traffic. I am trying to visualize my after and so far don't really know exactly what I am hoping to end up with.

    Anyone with additional feedback would be greatly appreciated.

  • minustwo
    minustwo Member Posts: 13,284
    edited March 2017

    Suburbs - I did have recon, but wanted to add a thought. You should have a 2nd or 3rd or 4th consult with plastic surgeons to find one who understands where you're coming from. And/or set up consults to talk to a different breast surgeon or two who will listen & discuss the issues. Good luck.

  • suburbs
    suburbs Member Posts: 398
    edited March 2017
    Hi MinusTwo. Good advice which I will take. I have time to consider all the options. I had a thought earlier that I was short changing myself in order to hurry things and get back to normal. But normal is never really ever going to be the same. It's a new normal. The one thing about a neoadjuvant path is that you have too much time to fret over the great unknown of surgery. For most, those decisions are made at the onset with very little time to research. My surgeon took a leave and left me to ponder this on my own. That was the start of this downward spiral of anxiety. Your response helps. I hope to hear more from others. Thank you.
  • jinmo
    jinmo Member Posts: 55
    edited March 2017

    Hi Suburbs,

    I had my surgery done by a breast oncology surgeon, with no plastic surgeon involved. My incisions look good, and I am happily flat, as I requested. There's a very small tuck or fold under my right arm.

    Before the surgery, I also requested a plastic surgeon and was told that none needed to be involved. I was really worried about it, but it turned out to be true, at least for me. My gap between diagnosis and surgery was close to two months due to a change of insurance. That left a fair amount of time for fretting.

    Your initial outcome may not be perfect, and you may need some revision even if the surgeon (plastic or not) does their best to make you flat. I'm sure you've seen the discussions of "dog ears", etc.

    I guess what I'm saying here is that your outcome is not dependent on the use of a plastic surgeon, but on finding a competent surgeon of whatever kind, who will comply with your request to be flat. I did not get that promise in writing, but others have done so. My last memory before going under for surgery was looking him in the eye and saying one more time "You'll make me flat, right?" and hearing him say "Yes."

    Oh, second the motion for Flat and Fabulous facebook. It takes a few days to get approved for the group, but totally worth it. Many, many flat pics there, to help you make sure you're up for it.

    I do want to say, not just for you, you may already know this and I know you said you have no choice but to take at least one off entirely, but for whoever comes along reading this: Flat means concave, you know. Think of it this way: not the chest of a seemingly flat-chested adult woman with breasts, but the chest of a skinny six year old, with bottom ribs being the largest thing on your upper torso, and not much more than skin and a thin layer of muscle over your upper ribs. Your breast tissue is not just knobs on the front of your chest, it runs down very close to the chest wall, out under your arms, etc., and they try their very best to get it all.

    I thought I understood, but it was still a bit of a shock seeing it on myself. This is not meant to discourage anybody, just to make you more informed than I was. Here is a good link, it's a nursing site, but has a great pic about halfway down the page with a side and front anatomical diagram of breast tissue, showing how close to the chest wall it is and how it runs up under the arm: http://nursingcrib.com/anatomy-and-physiology/anatomy-and-physiology-of-mammary-glands-breast/ . Looking at this diagram also helped me understand one reason why prosthetic foobs and surgical reconstruction both have such trouble mimicking the shape and spread of a regular breast.

    All the best to you in your decision making and treatment.

    jinmo

  • suburbs
    suburbs Member Posts: 398
    edited March 2017

    Jinmo, thank you for all of the detailed feedback and sharing your personal experience. Your note was very helpful to me and will be for others too.

  • quaydvt
    quaydvt Member Posts: 8
    edited March 2017

    Hi again jinmo! I'm up for mine on Apr 24th. Your "blog" is a fount of information. I am also not doing recon. When I started reading this thread, I noted it started back in 2010, it seemed like everyone was doing at least 1-3+ days in hospital, drains in for sometimes weeks, opioids for pain control. And now - day surgery or out next day (I'm a day surgery - in a.m. out late afternoon) and drains out in about 5 days or less with ibuprofen or tylenol (a combo works best for pain BTW - they act on different sites so you get double the effect with less of each drug - I had bone surgery on my lower jaw last summer - one day of T3's and then it was Advil/Tylenol) I was very glad to have you recount your experience. Helpful & encouraging.

    Hey suburbs - good to see you again too.

    goldie - thanks to you as well. and the heads-up on the FB group. I will look you up.

    I'll be back once the girls are gone and compare notes.

  • ravzari
    ravzari Member Posts: 32
    edited March 2017

    Suburbs, what you were told, "My nurse navigator already told me that no plastic surgeon would bother to close me up or make things nice. No recon, no plastic surgeon." is 1000% wrong. A plastic surgeon may not always be required if your general surgeon is comfortable enough to get things flat, but it's absolutely not true that they "wouldn't bother" or that it's not an option.

    The minute my general surgeon heard I didn't want reconstruction and just wanted to be flat, he said, "I'm not sure how to do that part, I've only ever done skin sparing for reconstruction before, if it was just me you'd probably have extra skin and some lumps as I have no experience reconstructing a flat chest, we'll need to involve plastic surgery in this as well," and that's exactly what happened.
    The PS had experience in doing exactly that sort of 'reconstruction' (She always said she believed it 'being flat' was still a type of reconstruction, just not 'reconstruction that ends with new breasts'), along with doing nipple grafts in my case, as I was allowed to keep them, so I have a pretty normal looking (save for the scars, of course!), flat chest.

    The general surgeon did the actual mastectomy, and the plastic surgeon cleaned it up, removed the extra skin, tacked the nipples back on in an appropriate position (in retrospect I should have asked her to resize them; I knew I had big ones but they seem extra big now that there aren't big ol' DDs to even them out!), and closed everything up. His part of the surgery took about an hour and a half, her part took three hours.

    There are also plastic surgeons who make a good chunk of their practice doing elective mastectomies and making the chest nice and flat (look up 'top surgery' sometime), so it's not at all a thing "no plastic surgeon would bother" with. What your nurse navigator told you is just straight up incorrect.

    A plastic surgeon that has experience doing that type of surgery also means they have the experience to move fatty tissue around so you're not left concave in most cases; I had fat moved around--lord knows I had an abundance of it in the area) to give my chest a more 'natural' flat appearance as opposed to concave.

  • jinmo
    jinmo Member Posts: 55
    edited April 2017

    Hi quaydvt, glad you checked in and I will be looking for you after surgery. Take good care of yourself, you're going to do fine.

    And hi Ravzari, nice to see you, I have seen you write a boatload of helpful stuff on other threads too!

    I will keep dropping back in on this thread, maybe do a 12 week post pretty soon here.

    Take care all,

    jinmo

  • KellyJo5
    KellyJo5 Member Posts: 3
    edited April 2017

    I am a 3 weeks post surgery - here's a summary of my experience: I am 47 and was diagnosed with DCIS is one breast in early March of this year. I choose to do a bilateral mastectomy due to family history. That surgery was done on April 7th, with no reconstruction. I spent one night in the hospital and went home the next day. My pain the first week was barely anything, although I was pretty tired and rested a lot. I took a few advil here and there, and I took percocet at night to sleep, mostly because I was resting so much during the day that I wasn't tired at night. I had two drains that stayed in for about 10 days. As everyone else has mentioned, they weren't painful, just annoying. I was terrified about getting them out (I'm terrified about any medical procedure!) - but it was painless and quick. Starting in the second week, I began getting feeling back in the nerves in my chest. This has been going on for about a two weeks. It's not horrible pain, but it is significant and it increases if I am active, walking around a lot, so I continue to spend a lot of time resting. I'm hoping the nerve pain will settle down soon, as I am due to go back to work in two days (I took three weeks off - I have a desk job). I have not had much luck with any of the pain medication helping with the nerve pain, but resting and sitting still usually make it much more bareable. I had been looking forward to taking a lot of walks and such during my recovery, but I have avoided that because activity just makes the nerve pain worse. It's interesting how different everyone's experience of recovery is! Overall, it's been better than I had anticipated and I'm so glad to be on this side of things!

    In regards to scarring and such, I had a great breast surgeon and no plastic surgeon. I still have tape on the majority of my scar so I can't see it all, but what I have seen is looking good. I had 40D cup size, so a fair amount of tissue was removed. I have noticed a little tiny bit of stretch marks around my scar and I'm not sure if that is from me doing too much or what. My surgeon told me from the first day that I had no restrictions on lifting, and could drive whenever I felt like it, as long as I was not on narcotics. So I have been able to do a lot for myself from the beginning, including driving, lifting, etc. I was able to wash my hair myself within the first week, although I hated taking showers with the drains still in, so I only did it twice until those were gone. I can lift both arms over my head easily and have not done any exercises yet. My right arm, where 3 nodes were removed, is a little more sore, so sometimes I can't reach quite as high with that one yet. I have been able to wear shirts that pull over my head since about the third day, but most days I wear a super soft cardigan buttoned up and that's all (unless I am leaving the house). The nerve pain makes me want to keep things off my chest. Most of the time I keep a big ace bandage wrapped around my chest, so I can avoid things touching it. It seems to help control the nerve pain a little bit.

    I am signed up to do the Livestrong at the YMCA program starting next week, so I'm looking forward to building some arm strength through that. It's a free program for cancer survivors and is offered in lots of areas.

  • moderators
    moderators Posts: 8,522
    edited April 2017

    KellyJo5, welcome to our community, and thank you for sharing your experience! We'd love to hear more about the Livestrong experience at the YMCA. Wishing you luck!

  • quaydvt
    quaydvt Member Posts: 8
    edited April 2017

    It's very good to hear your timeline KellyJo. The more information the better when trying to determine my potential recovery scenarios. I have lots of time before I have to go back to work. I teach, so I am effectively off till August between my sick time and holidays, so there is no great rush or time-table for me to stick too. I am lucky there.

    Had my BMX w/ SN this past Monday 24th. Got a pre-surgical pectoral nerve block (NICE!!) and IV hydromorphone after (NOT so nice - vomiting for 36 hours that 2 doses of IV gravol and one dose of "the heavy duty stuff" post-op didn't touch). Home with 2 drains that I am SO ready to have out.

    Nausea, vomiting & constipation not withstanding, recovery has been very good. Was home the same evening (surgery at 11, out the door by 7 although very nauseous). Tuesday was mostly a write-off - still quite nauseous, deadly weak from vomiting most of the previous afternoon and evening (and probably hypoglycemic as well by then), although I did go for a short walk with my friend (who came from Ontario to help me through this first week) and my dogs in the afternoon. Slept reasonably well in my recliner the majority of the day, ate a few crackers, drank a lot of water, and watched TV (between long naps). Spent the night in the recliner & slept OK, not great, but OK. Kept away from the pain meds - took 2 Tramadol/acetaminophen in total on Tuesday evening and Wed afternoon.

    Moved to my bed Wed night, and actually was able to sleep on my back (and get up with no problems) Thursday night. Although I'm not a back sleeper, it was far better than trying to sleep sitting up or even half-sitting.

    No pain at all, just a little discomfort here & there & bruising (looks like I was kicked by a mule on the right from the SNX I think)

    It's now Sunday, appt with the surgeon tomorrow to hopefully have the drains removed - the right one decided to start up with a bloodier exudate yesterday, although volume isn't up. I think there may have been a clot, it backed up a bit and is now slowly draining the build-up. The left is a really low volume (less than 5 ml overnight) pink/yellow serous fluid as expected by now.

    I have been pretty much doing what I was before the surgery except slower (as my BS told me). Drove the car for the first time yesterday with no problems (have to remember to bring the little pillow tomorrow though - taking my friend back to the airport).

    At this point, the only "pain" I am having is the increasing discomfort from the drains (there's really little or nothing happening in the "pockets" and I think they may be "grabbing"(?) the underlying tissue more) and the equivalent of bruised muscles in the chest, and a little Tylenol takes care of that). Once these drains come out (or the OK from the surgeon because of the more bloody fluid on the right) I may add some Advil if needed.

    Range of motion is pretty good - Can lift my arms close to over-head from the front, about 45 degrees above horizontal from the sides (a little stiffer on the right where the node was removed) showering (I agree with you KellyJo about the drains - awkward and just downright weird, but it does feel good to do) washing my hair, lifting and carrying, walking the dogs on my own, although trying not to over-do. Haven't attempted T-shirts over the head yet. I expect that getting them on would not be the big problem. Getting them off - that could be a bit of a challenge. Maybe I should try it today while my "support staff" is still here :) so I have someone available to get me out of it if I get hung up!

    Tape still on the incisions should come off in another week, but from what I've seen, the incisions look good, neat, not much bunching or puckering (will flatten out more once the tape comes off as well).

    Anticipating the on-set of the tingling, itching nerve pain that appears somewhat inevitable in a few weeks. I get hints of it here and there - phantom tingles in the regions with no sensation (at this point) but not pain.

    But it certainly seems that I have gotten off lucky so far.



  • KellyJo5
    KellyJo5 Member Posts: 3
    edited May 2017

    Quaydvt - I will be interested to hear how your second week of recovery goes. That when my pain starting kicking in and it hasn't stopped yet as I enter week four. Most of the time it really isn't too bad, but occasionally it really hurts, or maybe burns is a better word. If I rest and sit still it usually goes away, so I guess it's just a good way to keep me from doing too much :)

    Moderators - I will try to remember to post some info on my experience with the Livestrong program at the YMCA in the future. It's a 12 week program and this week is our orientation program. So maybe when I am a few weeks in I will have more to share.

    Thanks!

    Kelly

  • quaydvt
    quaydvt Member Posts: 8
    edited May 2017

    I'm also interested 😁. I know that a pectoral muscle ache has started off and on, and the phantom twinges are more common than they were.

    More energy, but also more sensitive in the chest. Not painful but feeing more bruised than even a couple of days ago. The dependent bruising down my right side is beginning to resolve so I don't look so much like I was in a bar fight and lost

    Off to the surgeon this afternoon. Hoping she will pull both drains. L is almost nothing, all serous so I know it will go. R is down to about 20 ml or less but had returned to a more bloody fluid Saturday am. Think we have a bit of a hematoma that is trying to drain. My thinking is that at a certain point it becomes a matter of diminishing returns and possibly even counterproductive. I'm hoping she agrees 😷.

    Looking forward to hearing about that Livestrong program myself!

  • quaydvt
    quaydvt Member Posts: 8
    edited May 2017

    Coming up on the end of week 2. Drains came out Monday afternoon - Yippee!

    Still no pain! (Whew!) Twinges still here and there but nothing painful, no aches and mobility is better all the time; I started having some hypersensitivity in the skin on the chest and upper arms. Not pain, but that uncomfortable "slightly burny tickle" (best way I can describe it) when the skin was brushed against. I think that's what KellyJo5 was referring to?

    I have to say I have NOT been religiously doing exercises, but I have also been living and moving "normally" more and more every day since i came home. I think because I had no pain, I have been able to just gradually improve my mobility daily without having to deliberately exercise. I can reach over head from the front - about 90% on the left and 80% on the right (SN side), still a little bit less from the sides - feeling more resistance from the taught muscles and tissues (not to mention the actual suture lines!). I also had some pretty significant bruising and swelling on the right from the SNB and the medieval torture device they strapped me into. It jammed up into the armpit and rubbed horribly on just the wrong spot, (I switched to a good front-closing sports bra with some padding underneath for compression after 3 days - couldn't handle it!) and that right drain went bloody after 4 days (naturally it was a Saturday!) so I didn't go too far with the stretching till I saw the BS. She wasn't concerned and pulled the drains - as the bruising has receded, I have now been actively stretching - being a good little girl and doing what I'm told! I don't want to be limited to 80%, and I can see (& feel) a difference even from yesterday. Warm compresses on the site has also helped the bruising and swelling recede, and relaxes the area before I do my stretches.

    Started sleeping on my side 2 nights ago and can now easily side-sleep again! Thank god - it is so nice to be able to get a normal sleep. I didn't do the recliner well (unless I'm watching TV and then I can drop off during commercials), half-sitting in bed wasn't any better (worse actually, since there was no TV!!) and sleeping on my back doesn't work too well for me either, but it was better than propped up.

    Can do T-shirts, tanks and sweatshirts on & off over my head (slowly and with technique - one arm at a time) but wouldn't consider trying anything "form-fitting" at this point!

    The steri-strips started peeling off yesterday. I trimmed a couple of the loose ends so they wouldn't get caught and pull off suddenly on their own, but this morning they were getting quite relaxed in their adhesive properties, and I was feeling a little hesitant about using scissors, with the wrong hand, back-handed, in the mirror. So I carefully removed the rest - they came off easily - likely would have come off in the shower on their own later this morning or tomorrow. The feeling of restriction, taughtness, across the chest is significantly decreased. A lot of the resistance has been coming from trying to stretch against tape (that doesn't stretch). And the hypersensitivity of the skin in the region that was starting up yesterday is also subsiding - I think my body was starting to resent the tape. It is still there, but not significant.

    The incisions look good. My BS was trying very hard to avoid the "dog ears", so the incisions actually go all the way across and under the arms. A little "puckering" in a couple of places on the right side, but those areas should stretch & flatten out as I work them. Even if they don't they are minor.

    So, 2 weeks in and all is good so far. I'll be back in a week or so.

  • KellyJo5
    KellyJo5 Member Posts: 3
    edited May 2017

    It's really interesting to me how different the recovery process is for everyone. Some of us have very little, if any, pain, and others have significant pain. Some are able to start lifting and putting shirts on over the head very soon, others take weeks. I know there are lot of factors involved, including our age, general health before surgery, the technics used by the surgeon, our response to anethesia, and one that I didn't consider until recently - the size of our breasts. Recovery certainly seems to be much easier on those with an A cup compared to those with a DD cup! So I guess I mention this for those who might read this in the future as they prepare for their own surgery and recovery, to keep this in mind and know that your recovery is not necessarily going to be like anyone else's.

    I am currently 4 weeks and 2 days post surgery and doing well! My nerve pain, which started in week two, has really calmed down in the last few days and doesn't really bother me too much anymore. I still don't have the stamina back and tire a little easier than usual, but not too bad. My incision is healing well. About half of my surgery tape has come off (or I have helped it off) and half remains. My surgeon told me the longer it stays it on it will help keep the scar from stretching and will keep the scar line smaller, so I'm trying to leave them on as long as they will stay. I doubt it will be too much longer as I get them pretty wet and soapy when I shower now.

    I have not really done any of the exercises my surgeon gave me, but I am doing daily activities that include lifting and stretching and am not having any problems, so I'm not too concerned about. I originally planned to take off 3 weeks from work, but it looks like I will be easing back into things slower than I anticipated, working part time for two weeks before I go back full time. My employer has been great and lets me do whatever I need to do.

    I started the Livestrong at the Y program last week, but it was just our initial meeting. The trainer will be working with a group of about 8 of us to help us with strength training and such over the next 12 weeks. I'm not much of an exerciser, but I'm really excited about this opportunity and hope it motivates me to take better care of my health.

  • jinmo
    jinmo Member Posts: 55
    edited May 2017

    Hi all, just checking in!

    KellyJo, glad to hear from you! Have fun with your strength training.

    Quay, glad you're doing well too. I am envious that you are back to side sleeping. I still don't really care to sleep on my side...it doesn't hurt but feels weird.

    So, here's my report:

    I am at 15 weeks now and feeling good. The main thing that has gone on since my last post is physical therapy. I went to about 18(?) sessions, starting around seven weeks post surgery and going three times a week. It helped a surprising amount; I thought I was doing really well without it but my mobility and my confidence that I could move/lift/stretch without hurting myself went way way up.

    The therapy concentrated on shoulder and chest mobility and strength. So, warm-ups with arm bike and shoulder pulley, lifting with light weights, various overhead & chest opening stretches, resistance band work and of course the PT spending time doing actual manipulation and massage/stretching on the joints. I didn't have any of the kind of therapy where they are directly manipulating the scars (myofascial??).

    Ha, in the second to last session he had me do some of the stuff that they do to test people for warehouse work...multiple squats to lift a 20+ pound box, moving and pushing said box around, etc. When I woke up the next day and my chest was fine but my glutes were killing me, I know I had made some real progress!

    Still exercising 6 days a week, with switch off between the original exercises from the hospital, the exercises from the PT, and some yoga. Blown Palm position with hands clasped overhead achieved. I can do a plank but have not tried to lower to the floor from it.

    For those of you who don't care to exercise, note that all this was achieved without any sweating! I am not a sports person by any means, so don't be scared by PT.

    Still doing scar massage with vitamin E oil every night. The scars are still a fairly dark pink, but I expect they will fade. I have a small amount of puckering.

    I still feel some tightness across my chest but it is not oppressive. If I stretch really hard, I can feel some pain, but nothing agonizing. I notice when I put shirts on overhead that I am still kind of tight.

    Body confidence still an issue. I tried a padded sports bra one day and really liked the look but then was upset again when I took it off that night. I think I need a little more time to adjust to my new body before foobs can feel like an optional accessory, rather than confusing and saddening to my brain.

    That's all I've got for now. Take care, everyone!

  • quaydvt
    quaydvt Member Posts: 8
    edited May 2017

    Sounds great jinmo! I've found in just the past couple of days my flexibility is improving dramatically! I'm doing shirts etc right over the head now, slowly but it's good stretching exercise too! I'm hoping to get into a PT as well to make sure I keep going. Don't want to get complacent! Sounds like you are much more fit than I am! Planking would certainly kill me!

  • suburbs
    suburbs Member Posts: 398
    edited May 2017

    Excellent news quaydvt! Glad to hear your recovery has been so speedy. Congratulations and bravo.