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TEs. A Beginner's Primer

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Comments

  • vfay49
    vfay49 Member Posts: 51

    Iwannacooki, I love your post about the TE discomfort being relentless.  How true!

  • noonrider
    noonrider Member Posts: 203

    Thanks for the advice. The hard part is it never actually dries out there because its in the crease. The only way to get air there is if I lay on my back with my arms up over my head….which I can't quite do yet. I'll see what I can do. Thanks again.

  • cammee616
    cammee616 Member Posts: 21

    I've been feeling fine for the past two weeks or so...was starting to forget I had the TE in lol...but woke up this morning and felt like a burning sensation when I went to get up...has this happened to anyone and why would it do this now after it's been fine? I got cold last night (temps dropped from 70s during the day to 40s at night) not sure if that had anything to do with it...I also smacked my head on a playground contraption yesterday while trying to duck under it with my son again..not sure if it has anything to do with it...I just know I don't like waking up and feeling like I'm being branded from the inside out or like something is ripping apart inside me...

  • Straitlover
    Straitlover Member Posts: 20

    Noonrider, I would lift up the breast and dry the area (I used my hairdryer on cool for a few seconds) then put a folded up gauze pad under there. If your breast is big enough, it'll hold it in place. Or you could use a waterproof bandaid. My PS doesn't like me to put any kind of ointment or cream anywhere I was cut.

  • www2b
    www2b Member Posts: 10

    Hi Everyone,  I haven't posted much, just read and learned a lot from everyone.  I had my BPMX with immediate reconstruction, TEs on 9/15.  I thought it would be a breeze for me.  Nothing ever bothers me.  I haven't called out sick in 25 years and never complain about pain or discomfort.  Until now.  This has really been more than I can deal with.  I was in a lot of pain for 2 weeks.  My PS said I shouldn't be in so much pain. She said I was suffering from depression and that is why I was having the pain.  She said everyone has some depression after this surgery but I had more.  Hmmmmm, is she right?  I have a husband but he has zero emotions.  I told him before the surgery that I would need him now more than ever before.  He took me to my post op appointments ( never before the surgery) and he took off a week vacation after the surgery to help.  And he was great for a few days.  But now he just does his thing.  Comes home from work and asks how I feel and that's it.  Then he goes outside to work on his projects. Anyway, this thread is about the TEs.  I have just never been so uncomfortable in my life.  I was dx with a small bulging disc in my back 10 years ago.  Not bad enough for surgery but it makes sleeping on my back so uncomfortable.  Drains have been out a week but still cannot comfortably sleep on my side.  Tons of pillows and so miserable.  Also PS put 120ccs in at the surgery.  How much do they usually end up putting in.  I'm wanting a small  C cup likely.  I have my first fill tomorrow and I'm really concerned.  As I said nothing usually bothers me but apparently I have turned into a big baby.  We are also planning a 1000 mile car trip on Wednesday.  I just don't know what to do.  

  • Iwannacookie
    Iwannacookie Member Posts: 117

    www--I feel your pain.  I also can empathize with the flatline husband.  Mine hasn't taken me to a single appointment, and he hemmed and hawed when I asked him to drive me to the pharmacy to pick up a new pain prescription.  I just stared at him and said, "Seriously?!!!"  Anyway, I attribute a lot of that lack of emotion to simply being a guy.  And also, because you are so strong, you probably have done what I have done--kept your own emotions in check so as not to worry your husband.  For me, that wasn't just out of love for my husband, but also for selfish reasons; i.e. I couldn't shoulder the double burden of trying to baby his anxiety whilst coping with my own.  I needed him to be "normal".  As for what the "usual" fill amount is--I don't think there is one.  I've read about women getting anywhere from 25cc to 150cc (probably even more) every week, or every other week.  It depends on your PS and is dictated in large part by the quality and amount of skin you have.  You can always tell you PS to go slow, or even pass one week when you need to.  You are the boss.  You must advocate for yourself.  

    And pain is to be expected--alas, you are mortal, and you may have found your threshold.  If you don't want or can't get prescription pain killers, you might try Ibuprofen or Naproxen (Alleve) for keeping the pain at a level you can deal with.   

    As for the 1K car trip--I wouldn't do it.  But if you must, be sure to place a nice fluffy pillow between you and the seat belt.  Demand that whomever is driving doesn't go for a joy ride over speed bumps, and ask to stop whenever you feel the need.  

    Best wishes.

  • vfay49
    vfay49 Member Posts: 51

    www2b, You have come to the right place for support.
    Although my husband has been very supportive and compassionate, he is a "just listen to your doctor" type of person.  I too believe that listening to one's doctor is important, but our doctors are not always available to address the anxiety the reconstruction process can bring on a daily basis.  There are a number of ladies on BCO who will do their best to address
    your fears and concerns. Two other forums you may find useful are the BREAST
    IMPLANT SIZING 101 forum and eventually the EXCHANGE SURGERY forum.  Be sure to read the information at the top of the BREAST IMPLANT SIZING
    101 page.  You will read there about the importance of forgetting about cup size when speaking to your PS.

    I believe it is normal to have pain following a BMX.  I actually spent an extra day in the hospital following my BMX because of the pain I was experiencing.  I was told to take Hydrocodone around the clock for the first week and as needed (especially at bed time) during the second week.   I eventually switched over to Advil as needed; and by choice, I took a half of a Hydrocodone before fills.  My discomfort did improve after I had my drains removed at two weeks and after receiving a few fills, but it has never completely gone away.  Keep in mind though that the amount of discomfort one experiences varies from person to person.  As far as side sleeping is concerned, most women have difficulty sleeping on their sides with tissue expanders.  I slept in a recliner for months; and although I have tried, I still cannot sleep on my side comfortably in bed.

    As Iwannacookie pointed out, fill amounts at the time of surgery and during fill appointments vary depending on individual circumstances.  I had 350 cc of saline at surgery and fills of 60 cc at each fill appointment every two weeks until I reached my TE capacity of 700 cc.  You should have received a card containing your tissue expander information.  The card will give you the recommended capacity of your tissue expanders.  This information will also be necessary if you choose to get an implant recommendation from Whippetmom on the BREAST IMPLANT SIZING 101 forum. She is amazing!  If you don't have this information, ask your PS for it at tomorrow's appointment.

    As for the car trip, I agree with Iwannacookie.  Personally, I think it is too soon. Even with holding a pillow to my chest, I found bumpy car rides painful.

    Hang in there!

  • WinningSoFar
    WinningSoFar Member Posts: 126

    Dear www,

    I'm so sorry you are suffering, especially alarming since you must have a naturally high pain threshold.  If your doc thinks you should go on antidepressants, I would do it.  In fact, I did.  When I was diagnosed Stage IV, I knew that my attitude was not the 'can do' attitude that I needed.  I'm taking the lowest dose of Effexor and that definitely has done the trick (takes a few weeks to get up to strength).  

    I'm through with my fills and am awaiting exchange surgery.  I also have a high pain threshold and have not once taken a pain med for the fills (700cc total).  Is that helped by the Effexor?  Who knows, but I know my attitude is much better. 

  • Flannery
    Flannery Member Posts: 25

    www2b:

    Gosh you are being very hard on yourself - your surgery was more recent than mine (9-12), and I had a UMX rather than a BMX. Like you, I thought I would bounce back more quickly than I have because I have a high pain tolerance and have always recovered from soft tissue injury/surgery very quickly. But I honestly think there is something very different about this TE situation. Patients and surgeons all say that mastectomy itself is well tolerated by the body and women with no recon bounce back quickly. But man-handle those soft tissues and muscle, then stuff a foreign body in there, and recovery is a different animal. Even when I came off the daytime pain meds, I was much more fatigued than I thought I should be, and although I booked 4 weeks off work I honestly thought I was going to be getting a lot of backlogged (computer) work done by 7-10 days post-surgery and was looking forward to this. None of that has happened, which is a source of growing stress despite knowing I should cut myself a break about it. My colleagues all say "of course, take the time you need", but then ask for follow-up on all kinds of work and projects! :-) 

    I would classify my current status as persistent discomfort punctuated by episodes of gnawing pain, especially as the day wears on. I am an active/athletic person and assumed I would have resumed more activity at this point. Although I no longer have surgical pain, any movement/bounce of the TE/breast is painful so I'm not even walking as much as I should be. Seems like the solution should be simple - bra support. But despite buying a zillion different bras I have not found one that is capable of supporting the breast without also pinching/bruising the skin overlying the hard edges of the TE. Each new bra feels promising at first because the pressure points are slightly different, but within an hour or so everything hurts. I would hate the idea of the 1000-mile car trip, as right now potholes and even minor bumps in the road are quite painful for me. Like you I have a bad back and am not a back-sleeper; right now I am taking an oxycodone and a clonazepam shortly before bedtime to ensure I can get some sleep. This has been working much better than I ever expected and I am even better rested than usual, as my neck/back normally wake me up many times during the night. This doesn't worry me at all, as you can't heal without resting. Take-home point, as a reminder to myself as well as for you: it is early days yet and you should cut yourself some slack. Persistent pain WILL cause depression if it hasn't already, so don't be a purist and just take the drugs you need to feel comfortable.

    On the husband front, yes I think men process and move on from emotional upset quicker than we do. I also think we can send very mixed messages if we're not careful. My husband is a supportive saint and will happily do whatever I need him to. But I'm not always great at communicating that. For example, once we knew the date of my surgery he asked me if he should cancel a recreational event he was organizing and running this weekend, and which would keep him very busy on the other side of town the whole week prior. At the time I assured him I would be well on the road to recovery by this time, of course he should proceed, and we should not allow BC to disrupt our lives any more than necessary. With a hint of "what, do you think I'm some kind of wimp?" thrown in. Why would he not believe me? On several occasions he has watched me suture up my own lacerations without anesthetic while on camping trips, seen me bounce back quickly from other surgeries, and seen an accident that I walked away from easily despite breaking 3 ribs and my collarbone. He would, and should, think I have it totally under control. But sure enough, this week I am feeling painful and sorry for myself and have become petulant and resentful that he is off enjoying himself in a hobby activity while I am suffering alone in an increasingly slovenly home. :-) I know very well that all I had to do was tell him that I'm not doing as well as expected and could he please make other arrangements, but no way could I bring myself to do that. So for me at least, lack of optimal spousal support is generally of my own making, or failing to be really man-obvious about what I need. Seeing this so clearly now, I obviously need to watch for this in myself as it would really hurt him to think he wasn't there for me when I needed him.

    Anyway www2b, I hope you will go a bit easier on yourself, take any meds you need to feel human, and just give yourself more time with fewer self-imposed expectations. If you do take that road trip, insist that your husband takes the good roads even if it becomes a 2000-mile trip! :-)

  • IntheATL2014
    IntheATL2014 Member Posts: 41

    I am new to this thread, but not to the forum.  I have been on Implants 101, as well as a couple other recon sites.

    Had a left mastectomy in Feb. with TE and 100cc fat transfer in preparation for future Brava/AFT recon.  16 days later, TE was removed due to infection.  Left wonky, lumpy mess in lower half of starter breast.  Next AFT was 350cc in May, with releases in the lower half.  Upper and out areas filled and took nicely, lower part was trying to improve.  Next AFT was 250cc in July.  Nicely plumped, less lumpy lower half.  2 weeks later, all the fat leaked out one of the injection holes.  Extremely discouraging.  

    Sept. 9 -follow up check up time.  Mammogram on other breast indicated something that required a biopsy.  Shitty start to the day.  9/12 biopsy magnifications looked quite familiar to me.  9/15 - BS calls with news I already knew.  Could not believe that someone just blew out the light at the end of the tunnel and sent me back to the damn starting line!!  Mastectomy this past Wed. - way to ring in BC awareness month - NOT!  The left side lumpiness was revised and a TE placed.  Right side breast gone and only one lymph node taken, and found not cancerous.  TE installed.  Bailed on the whole Brava/AFT since both sides now need recon.  So ready to be DONE!

    I remember the TE in Feb. was less than comfortable, like a relentless underwire digging into my ribs.  This time, right side is more uncomfortable because it was the side that took the worst hit.  Left side not so bad.  Draining is uneventful.  PS appt on the 7th and BS appt on the 14th for final pathology report.  Last time, I got out of chemo and rads, and only lost sentinel nodes.  Praying for the same kind of luck this time.  Same Drs both times.  They are awesome.  If I have a concern, I can take a photo and/or text my PS and she responds.  For each diagnosis, I spent many hours doing research and making pages of questions.  I have never been hurried, told I was paranoid or needy.  They appreciated that I did my homework.

    Hoping to survive the TE and fill journey.  I will say this again, as I have said on the other threads.  I am so glad this forum exists and that people are willing to share and learn and support.  Thank you.

  • IntheATL2014
    IntheATL2014 Member Posts: 41

    One more thing - I cannot sleep comfortably on my back!!  Never could, esp since pregnancy.  Hydrocodone and Ambien help.  But I am still dying to sleep on my side!!  Too painful when I try left side.  Rolling up on my right is manageable, but not all the way up.  If I get there, not sure what that means for the TEs.  Will text PS tomorrow, to avoid disrupting her weekend.  Anyone else manage to side sleep successfully without messing up the TE work?

  • Blessings2011
    Blessings2011 Member Posts: 1,801

    RAM2013 - The only “breast
    shapers” I am familiar with are those that are used after surgery, externally, to
    even out the symmetry between breasts when wearing a bra or shapeware. I would
    be really interested to hear about “breast shapers” that are used internally
    in addition to the TEs!

    ~ ~ ~ 

    Iwannacookie – I had some mild cording after surgery. It
    resolved on its own, without any intervention. (And yes, AZ can find anything.
    She is our Nancy Drew of the Forum!!!)

    ~ ~ ~ 

    Noonrider – if your drain hole is still a “hole” (and it
    sounds like it with gunky white stuff in it), then yes, my first thought would
    be to dry it carefully and apply some bacitracin to it. But as Straitlover
    said, some PSs don’t want you to put ANYTHING on an incision or opening. You
    may want to try to dry it carefully then use a very soft, sterile maxipad under
    there… it’s soft and absorbent and may keep things dry. Just remember that any
    open wound is a direct path for bacteria to enter the body, and TEs are
    notorious germ magnets. Please show your PS and get his/her advice.

    ~ ~ ~ 

    www2b – if it’s any consolation, I cried every day for a month after my BMX. I
    was in such pain, I told DH to drive me back to the ER to have the TEs removed,
    or I was going to take a razor blade and remove them myself. Fortunately, for me, the answer lay in the fact
    that I was not taking my pain meds as prescribed. Once I was able to do that
    (around the clock) the pain lessened, and was almost gone when I started fills
    a month later.

    ~ ~ ~ 

    Husbands – ARGHH! Some are winners, and some just can’t be
    there for us like we need them to. If you have made your needs clear to him (men are SO not mind-readers),
    and your husband will not respond emotionally or physically, then you may need
    to find your support elsewhere. I would recommend a heartfelt discussion him,
    with no blame, to see what he may or may not be feeling. But after that, there
    comes a point where the question arises “What part of this is about YOU?” And
    who has the greater need?…. If you find that his lack of compassion is adding to
    your pain and stress, I would definitely suggest finding a counselor who works
    with breast cancer patients. Even though my DH was a gem during my whole
    surgery, recuperation, and reconstruction, I still needed that place where I
    could go and vent and let my fears and frustrations out. My MO referred me to
    an awesome LCSW therapist who works with her cancer patients. It was SO worth it.

    ~ ~ ~ 

    IntheATL2014 – I am not a back sleeper, either! Horribly painful
    and uncomfortable! After my BMX, we rented a fully electric, adjustable
    hospital bed, so that I could position it to where my body was cradled at all
    times. (I also put a twin-sized Tempurpedic topper on it for added comfort.)
    The most important thing I did was always have the mattress lifted under my knees, so that it took the pressure off my back. After recon, we got a good
    recliner I could sleep in, and that worked well. I used pillows under my knees then. Even though I couldn’t sleep
    on my side, I used small pillows behind me to roll me over slightly, and give
    me the illusion of side sleeping. It wasn’t too bad.

    ~ ~ ~ 

    Ladies – please remember that all these awful pains and
    positions and inconveniences caused by the TEs are TEMPORARY! Be sure to share
    everything with your PS in case there is an underlying, fixable cause for your
    discomfort, but I tell you the truth: This too shall pass!!!!! 

    xoxo

  • 3littlebirds
    3littlebirds Member Posts: 54

    I was able to sleep on my right side at about 4 weeks and my left side at about 6 weeks. Was blessed relief, as I am not much of a back sleeper either. Did not mess up the TEs in the least. I think they're stitched in there and don't move much, if at all.The trick is to find just the right position so they're not poking you. At first I used little pillows to prop myself up a little.

    I just had my exchange surgery on Friday and I think everything went well. The pain is more than I expected, but I'm coping. I see the PS on Tuesday for a full report. My range of motion is really good. It took a long time after my BMX for ROM to return, so I'm grateful it's a lot easier this time.

  • noonrider
    noonrider Member Posts: 203

    My BMX was on 9/12. One day this past week I sort of kind of slept on my side for two hours. The best two hours of sleep I've had since surgery, but OMG was in pain when I woke up!

    The pain from the TE's never goes away for me. Ever. It is there every moment, even when I am lying still in my recliner, it is there. When I was going through chemo I just kept telling myself, "I have made it through one treatment, I can do the next one." I literally lived one day at a time. "I just need to get through today before deciding to have them removed." I will have my first fill on Weds. The anxiety I'm having now is similar to the anxiety I had in the couple days before each chemo treatment. 

    I feel like all I've done for the last 3 1/2 weeks is whine. I too have always been a 'strong' person. People came to me with their problems. People thought I had my life all together. I could handle any issue that came up with grace. And then I had the BMX. When people ask me "How are you doing?" I'm not hiding behind my smile. "Miserable. I'm miserable. This is the worst thing I've ever experienced and I just want to be done."  It leaves them speechless and then I feel bad afterward. 

    I am very fortunate that my husband has been amazing. He is a caregiver by nature, and he lost his previous wife to BC, so he gets it. He goes to every doctor appointment he possibly can. He ran to the store in the middle of the night for the 7up I felt was the only thing I wanted to drink. We have 5 kids with Down syndrome and he has managed the morning routine to get them out the door on his own. He was hugely relieved the day I got up and got everyone's breakfast, even if I did go back to bed as soon as they were all eating. But the sleeping is still an issue. I'm sleeping A LOT. I can't function without a 2-3 hour nap at some point during the day and am headed to bed for the night by 9:30. I'm still exhausted and have to remind myself I'm recovering from major surgery and in chronic pain. 

    One day at a time. That's all I can manage right now. 

  • moonflwr912
    moonflwr912 Member Posts: 5,938

    noonrider. Please remember you had an amputation.  Of your breasts. With prosthetics placed there on the raw skin and bone and muscle. What part of that sounds painless? 

    BTW, Your PS is nuts if she thinks most people don't have pain for a month. Yes a few on here didn't have a lot of pain, but it usually after week 3 that the pain eases. I was on hydrocodone every 4 hours for almost 4 weeks. I weaned off on that 4th week. 

    Everyone , please remember that each person recovers differently, but the average person is still in pain after 3 weeks. My last drain the first time was in for over 5 weeks. And I did hurt even then, but it was better. Zips and zaps through the incision line were normal things. You were athletic and your muscles were cut. Yes you will be in pain. Hugs and TAKE THE PAIN PILLS.  We sometimes forget that we heal better without pain. 

    I used a recliner for weeks too. Since I have trouble with knees, I needed help to get up. The lift chair was wonderful. I couldn't sleep on my side for a long time. One of our ladies here suggested a neck pillow for under your arm. You might try that for side sleeping help. 

    There are physical therapists  available for ROM and pain if needed. Also, if you've been through chemo there is chemotherapy rehab to build you back up. Ask for that. It helped me tremendously.  There is also Livestrong at the YMCA that could help you. 

    Much love to all of you struggling. Hugs and take the pills! LOL

  • noonrider
    noonrider Member Posts: 203

    Moonflwr912..you made me feel so much less crazy! Thank you. Yes, I need to see about some physical therapy. I have a lot of cording going on already. I am reaching and stretching as much as I'm able yet feel myself getting tighter every day. Time for some intervention. Our YMCA doesn't have the Livestrong program but I will see if I can find something similar. Thanks!

  • Iwannacookie
    Iwannacookie Member Posts: 117

    Noonrider--If you are crazy, at least you're in good company.  We're all in this together. Loopy

  • aviva5675
    aviva5675 Member Posts: 836

    yeah, what they said! 

    For starting to side sleep I used a very small pillow and out it beaten the te. Keeps the "top" one from hitting the " bottom " one, and made it doable...start by just rolling slightly in your side, and go from there...pillows of all sizes are your friends.

  • Flannery
    Flannery Member Posts: 25

    noonrider wrote: "I think some of the problem is the burning skin. I had a tummy tuck 5 years ago and I do remember the sunburn feeling, and wanting to take my pants off whenever I was home because I didn't want anything touching my skin. What I don't remember is how long that lasted. What about now with the BMX? How long has that lasted for you?"

    I agree that the nerve pain is a b$tch - for me this was a much bigger deal than the surgical pain. For the first 20 days it felt like a belt sander was running in my armpit 24/7 and I could not bear to have anything touch it, including bras or regular clothing. My husband was highly amused by my many efforts to pad and buffer this skin - I purchased swatches of various fluffy fabrics to stuff in my armpit, which resulted in quizzical glances from strangers when they inevitably dropped out in public places. As an aside, the first batch of fabric I bought was dark brown, and one day I caught a teenaged boy gazing in wonder at the thick soft brown tufts emerging from the armpit of my t-shirt; no doubt he thought I was very "European"! My husband also taunted me by bringing up pre-surgical comments I had made along the lines of "I hate the idea of the numbness that will result from surgery - I would rather have pain than numbness". Well, lesson learned as I prefer the creepy numbness that is present in other areas. The GOOD news is that the belt-sander sensations have suddenly improved a lot over just the past few days. I still find any contact with this area unpleasant, but no longer unbearable. Now that I think of it, several things I read prior to surgery suggested that the period from 2 - 4 weeks post-op is when this peaks, so fingers crossed that the worst is now behind you!

    The other key area of nerve pain for me is that damned nipple that my surgeons went out of their way to spare. I was dubious about preserving her from the start, and unless she joins Armpit and gets with the program soon I may have to consider un-sparing her! Every day I have to rig a little nipple bandage to minimize the discomfort of fabric sliding over her, but it doesn't help with direct pressure from overlying bras and clothing. Earlier I wasn't fussed about this because Armpit was so much worse, but now Nipple and Areola are my nemeses. If it continues when I go back to work later this week I think I will have to order some lidocaine cream just to keep it from distracting me. At present I unzip my top and fuss with my bra about a thousand times per hour, and my colleagues at work definitely don't need to endure that sight.

  • IntheATL2014
    IntheATL2014 Member Posts: 41

    Thanks for all the commentary and encouragement about side sleeping.  WISH I had space for a hosp bed - I got good sleep in the hosp.  I have tried rolling up on my right side, which for some unknown reason in more comfy than the left.  I did prop up my back with pillows.  Will try to roll more tonight, now that I know my TEs will stay put and PS says it is ok.  Drains have not been too much of a hassle since I anchored them firmly with Tegaderm patches. 

     After reading some stories about painful recoveries, I am most thankful for being very good at surgery and recovery (genetic?  serendipity or ridiculous luck in that dept.?)   Took pain meds for only 36 hours post surgery.  Take one with my Ambien at bedtime.  If I can manage side sleeping, maybe I can stop that too.  TE discomfort isn't bad, just keep feeling like I desperately want to remove the 24/7 tight, underwire bra!!  

    Bless you all on this journey.  Not a sprint for sure.

  • Iwannacookie
    Iwannacookie Member Posts: 117

    Flannery--I too have that horrific nipple/areola pain in one breast, while the other breast is completely numb.  I'd definitely rather be numb than have to deal with this.  I flinch when anything touches it (not very romantic!)  I have considered asking if there is a way to go in there and sever the nerves.  When I mentioned the pain to my PS, she told me it was odd, as if I were the only person in the world who had this problem. She said that I shouldn't be feeling anything, and then casually suggested that perhaps my surgeon had left in some breast tissue.  My surgeon assured me that all the tissue was gone and that it was just the surviving nerves running through the skin.  Whatever.  I just want it to go away.

  • noonrider
    noonrider Member Posts: 203

    My nipples are completely numb. There is a lot of edema behind them though, and one turned black but is now sloughing off the black stuff (the word "sloughing" should never need to be used in the same sentence as "nipple"!!!" I'm about ready to say screw the nipples. I don't need them that bad. Without them I can go braless always.

  • Flannery
    Flannery Member Posts: 25

    noonrider: 

    Of course your PS knows best but I wouldn't worry about the slough as long as it is only partial-thickness; this happens to almost everyone and the nipple/areola ends up looking perfect once it all heals up. If the nipple was so starved of oxygen that the necrosis goes full-thickness, then you will lose it and the PS will decide whether or not it needs to be surgically excised or just heal over in a way that doesn't look very nipple-like. If your PS doesn't seem worried I would just ignore it and give it some time - all I did was slather on some triple-antibiotic ointment and tape a little gauze bandage over it so the ointment didn't ruin my clothes. Before you know it they will look good as new!

    iwannacookie:

    I like to think that this is just temporary for us, and that sooner or later the sensation will either normalize or vanish altogether. Most of the Googling I've done on this subject supports this hope, so my plan is to just ignore/endure it for the next few weeks and see what happens. I suspect that I could clicker-train my husband to touch only my healthy breast, but if the hypersensitivity remained this way permanently I would definitely need to have the darn thing removed for the sake of comfort. At present the sensation is what you would expect if someone took sandpaper to it for a few minutes, yet the skin surface is perfect. But I'm thinking positive and going with the temporary nerve pain theory!

  • noonrider
    noonrider Member Posts: 203

    Flannery: You said, "I suspect that I could clicker-train my husband to touch only my healthy breast"

    BWAHAHAHAHA I'm a canine obedience trainer. Totally laughed out lout at this.

  • Flannery
    Flannery Member Posts: 25

    He'd be a quick study for sure  - highly cookie-motivated, easy to shape, and quick to transition to variable reward. Think border collie rather than lab! :-)

  • www2b
    www2b Member Posts: 10

    Thanks again everyone for your encouragement.  I did have my first fills yesterday.  60cc's each.  Went very well.  Just a little more sternal pain today than normal.  I am doing much better emotionally.  She gave me Ambien yesterday and I took it at 10 pm last night.  Slept all the way till 4:30 without waking up.  That is better than normal.  Who knows, it the dogs and that darn raccoon would behave maybe I would have slept longer.  

    It still makes me sick to think that these TEs have to be in me for another 4 months.  It has to get better.  About the husband.  It is what it is.  Nothing I can do about it.  I tried talking to him a week ago.  He was trying to be nice, but he said, "what do you want me to do, tell you it's going to be ok and pat you on the head?"   Yeah, he said that.  Then I said, "yes, that is exactly what I want you to do".  

    And as for the car ride, I'm going to have to go.  I planned it well before my surgery.  Before I realized I wouldn't  bounce back quickly.  PS has no concerns about the trip at all.  It's all interstate getting there.  I got some of those warm packs just in case.  Bringing my big pillow and the seat reclines way back.  Too bad for whoever is sitting behind me.  

  • Flannery
    Flannery Member Posts: 25

    IntheATL2014:

    Just wanted to send you a hug over the ether because your story is so sad, and of course every UNI's nightmare. How cruel for fate to put you through one mastectomy, only to need another less than a year later. We are all stronger than we know and usually find ourselves capable of doing whatever needs to be done, but that is just plain horrible and my heart goes out to you. I hope that you have a good support network, and wish there was more I could do besides sending out encouragement and some positive energy. Best wishes to you!

  • IntheATL2014
    IntheATL2014 Member Posts: 41

    Flannery. Thank you for the "hug" and post.  I got great news today at my PS appt. she said she saw my path report (which I am supposed to get from the BS next week). I was surprised there were results available 6 days after surgery. I got my wish - no rads or chemo. I can do the rest.  Same result with the first mx.  

    Hope to start fills in a couple weeks.  Not looking forward to that, comfort-wise.  But anxious to get on with it and get to an end point, as we ALL are.

    Cracked up about the clicker training and the husband. Dogs are sooo much easier to train. I am 63 and recently had my 33rd anniversary. I totally gave up on training the husband a long time ago.   

  • 3littlebirds
    3littlebirds Member Posts: 54

    IntheATL, so happy for you! No rads and chemo is the best news ever. You can do the rest. I just had exchange surgery on Friday and am so happy I am nearing the end of this.

  • noonrider
    noonrider Member Posts: 203

    First fill for me tomorrow. I'm four weeks post op and dreading it. I was supposed to have the first one at two weeks but just couldn't do it. Hoping it hurts as little as possible.