Unilateral mastectomy & reconstruction
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I joined the forum a week or so ago, but have been reading through this entire thread before posting! I'm a 47yo, divorced mom of twin boys. (Almost 16, yikes!) I work in IT, I'm a telecom admin. Was diagnosed with DCIS, Stage 0, in November of last year. Two lumpectomies later, I'm scheduled for a right UMX on March 5th. I'm jumping right into reconstruction with a TE.Like many of you, I'm a side sleeper. I've been "practicing" sleeping sitting up in bed the past few nights, tweaking the pillow arrangements, etc. My little dog thinks that's an invitation to sleep in my lap. That's not such a bother, but when he's in my lap, the cat tries to one up him and sleep on my stomach! I've been trying to switch some activities to my left hand, but my right is dominant and fighting hard! I know I'll have lifting requirements on the UMX side, what about the other side? Trying to figure out how to navigate!
Anyway, I've learned a lot from reading through your posts...
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Tress - sorry to have to welcome you to the board, but there will be a lot of help for you here. I haven't posted for quite awhile, just taking a breather after all of this. Just got back from a much needed vacation and was trying to put a lot of this behind me so I could enjoy.
I had a right UMX too. I'll try and answer your questions from my perspective. I was always a side and belly sleeper, but no more. Even after having gone through the whole reconstruction process, I still find it difficult to sleep on that side, let alone my stomach, I haven't even attempted that. The implant is there, and is uncomfortable to me to lay on it with pressure. If I do, I tend to have a painful day with my implant, so I try to avoid it. But that is just me, and might be different for others.
Pillows are your best friend, prop a couple three up behind you, and have one for under each arm when you sleep. Someone else even recommended putting a pillow under the knees, she said it helped her not move. That was the most comfortable position for me, and prevented me from rolling, yet allowed elevation of your arm. You will be able to use your right arm slightly, no real lifting above your head, but you will be able to pick up small things. Try and use your left arm as much as possible, just try and not "forget" about your right arm. One time I went to the grocery store, and without thinking closed the back gate with my right arm - don't do that! My cat likes to sleep on my stomach too, sorry, but you have to tell them to stay away.
Fourminor - I hope everything went well an you are on your way to putting all of this in the rearview mirror!
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I found two things helped a lot with laying on my back--definately a pillow under my knees, and, when trying to sleep semi-upright, someone on another thread mentioned a "V" pillow, which I found on Amazon for like $30. Its just a v shaped pillow and I would put it behind my back so I had just a little support one each side, and then I took two bed pillows for behind me. I still use it sometimes so it was not a waste.
Thanks Frostecat! I'm slowly improving. Good to hear from you! How is it going?
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tress29, I am a uni, had orig. mastectomy with expander 7/15 and had my final exchange 12/14. In the very beginning, I had to sleep in my recliner. I could maybe have messed with pillows and made it work but I had trouble sleeping even prior to surgery and I knew from having had knee surgery in the past, it was easier to just sleep in my big comfy recliner. I did that for a coupe of weeks and then, I would try the bed again, but usually didn't make it. Laying flat of my back was just not comfortable. Probably after 3 weeks, I could at least sleep on the non surgery side. The expander pretty well tells you what you can and can't do. I had little problems with my arm but even opening a jar would remind you those chest muscles are connected to that arm. Since my final exchange, I can sleep on either side but not very long on the implant side. It begins to pinch in cleavage area, I expect its the alloderm pocket. So, mainly, I dont' sleep long on the implant side.
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Fourminor - good to hear you are on your way. I'm doing good, I'm just adjusting to my new normal. I don't think I will ever feel the same as before, the implant is a constant reminder. And as Angelia pointed out, being that I'm a right handed right uni, there are always constant reminders. Opening jars, opening wine bottles :-), running the sweeper, some of these things still bother me, and I'm sure always will. Well one bonus out of all of this, is my husbands new duty around the house is sweeping!
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I'm not minding being off litter box duty, but my cats are miserable as hubs refuses to do it daily, only every other day.
Still sore under the implant. It hurts even to put my sock on when I pull my knee up on that side. Hoping this is not going to be permanent.
I am loving being home with my family and not having to deal with going to work in this bitter cold snap we are in up here.
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Fourminor, do you have muscle relaxers? I know before I had any surgery, my PS told me he found most people had better success with those than with pain meds and I have to say, I have found that to be true. I almost feels to me that the implant rubs under that muscle, similar to what it felt like with the expander. I know mine doesn't bother me much now but yesterday, I had to do a job at work that I never have to do. I normally do office only work but we have been shut down due to weather and they asked us to work in the factory section of my company. So, I was picking up these things, I guess about the size of a tennis ball and probably each weighed about a pound and then, put this little spring on it. Nothing hard but after 2 hours, my chest was beginning to hurt. When I got home, I took a muscle relaxer and it stopped. I don't know how long its going to take for even the least little, minor thing, not to aggrivate that muscle. I felt the same way last month when we had CPR, after about 4 pushes, I said nope, thats hurting and I stopped.
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I've read about people putting pillows under their arms, in the armpit area? Is this for cushion when they've had lymph nodes removed? Or for elevation to reduce swelling?
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Pain meds did nothing for me after mastectomy. It wasn't till I discovered Flexeril (muscle relaxer) that I was able to function. I would split the pills and take half 3 times a day. This kept me at a level that stopped the pain but still allowed me to function, i.e. drive.
tress29---I got 2 travel pillows from Bed,Bath&Beyond and would tuck them under my arm while I slept or under my seatbelt when riding/driving in a car. It's been 2 years and I still sleep with them!! I even took them to my hysterectomy last month and they were great for propping me up comfortably.
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That's funny I got one of those pillows but it does nothing for me. I do sleep hugging a pillow to my chest though so my left arm doesn't drop against me but stays to the side. And a pillow between my knees. Got old fast is all I can say.
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Fourimor - are you feeling ANY pain relief yet? I hope it is healing - i have to plan my exchange surgery too - held off a bit as decided was not ready to do it at beginning winter in CT - and we're had an AWFUL, bitter brutal one so holding off till warm and was planning on lifting LEFT natural side - that is a TBD as after reading women who had lifts and hearing they have had terrible pain, infections and such - makes me sort of question whether I really WANT/NEED to go through that or just have the exchange and don't touch or mess with the left natural side - i have very fibrous, dense breasts, sometimes I wonder if safest thing would be to leave it alone and then have the mammo and ultrasound done on tissue that has never been operated on - - - as if have lift, those tests may catch suspicious cells that may actually just be scar tissue from the lift (I am just projecting, thinking out loud etc) - from what I was told the lift could be done further (as a 3rd surgery and years later) or most people decide to do at time exchange so it is DONE and in 2nd surgery.... anyone have comments or advice - I am 43, and yes that left side is super droopy - especially next to the tE which is hard as rock and high - - -
anyone in CT? near Westport/Norwalk? there is a support group - the breast cancer survival center - meets 6pm around a few towns run by a counselor, there is a facebook page too - i have to get back to going - just was so cold! hope everyone is doing ok/well,,,, or even doing really great!
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sparkle, I just had a lift in December and the surgery was not bad at all. I had been told most discomfort would likely be from nipple being sensitive but truthfully, I did not find that to be an issue. I am older than you and droopy too so the strangest thing is looking down and its just right there now. The first time you see it, its just WEIRD.
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i can't imagine what lift side will look like or feel like when lifted after years being so droopy - i imagine will look weird without clothes on as MX side I am not getting nipple reconstructed - i may opt for a tatoo (of an ANCHOR maybe - as I feel an anchor is what keeps you grounded and an anchor is nautical - i love the beach and being near the water - the ocean is revitalizing, the tides rise and fall and very symbolic place in my heart) that would be towards top part of the implant - not smack in center where nipple would be and small tattoo - just a symbol of the strength needed to battle this disease....
i would like left to be perky and not down to my belly button so the lift sound sgood - i just HOPE that having both sides operated on at same surgery that I won't be really regretting it - as I have had a frozen right shoulder and with the RT MX surgery June 2014 - it set that shoulder right back up on fire so I use my left arm and left side body a lot more even though I am right handed!!! i need to feel confident that I will be able to still use that Left side even after the lift surgery on it... that would be very helpful to hear from anyone about using the arm and shoulder of the side they had lifted - - were you able to use it normally within few days or what?
thanks
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I am following this thread and interested in responses too about the lift to the healthy side. That is what I'm planning too. Had umx 2/6 so my exchange/lift surgery could be in June. Thanks to everyone sharing their experiences, it's invaluable!!
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Hi all,
I did have the exchange and actually recuperating during the freezing February we just had (I'm in Brooklyn) was not so bad at all as there was no real urge to do anything but lie around and rest, which was exactly what I was supposed to be doing. I opted not to touch my native breast although now that my FOOB is sitting up like a 25 year old breast, it looks droopier than it did to me. 5 months of not being in a proper supportive underwire bra has not helped matters on that side.
There are arguments for/against lift and it also depends I think on how droopy or size mismatched you are. My PS argued against touching it as even though he said he could make them match up better, the native breast would over time droop anyway so it would not last forever and I would always have to wear a bra. He also thought it wasn't that droopy and the sizes would be comparable so that in a bra I would be fine.
The thing that dissuaded me most were two possibilities: One is the possible effect on mammography. I would say over 95% of the time even though a reduction does alter architecture, in an average breast which is not super dense, its not really a problem. But I did recently see a mammo in someone who I think had formed keloid along her lift scar that caused innumerable tiny calcifications on the skin along the scars around the nipple, down the breast and into the inframammary fold. When I pulled up her prior mammogram to see what her cancer looked like on the other side before the breast was removed, I was horrified to see it was DCIS with tiny calcifications almost identical to what was now all over her unaffected side. I did my best but I pray this woman doesn't develop the same cancer because it will not be detectable until it is big. That said, that is so far the only time I have seen a case where a lift has really limited the post operative mammogram, so I think if you don't form keloids its not a concern.
The other thing that dissuaded me was that my PS said any surgery to the remaining breast could potentially make a mastectomy more difficult on that side. The makes sense to me as most of us had skin sparing mastectomy so a scar at the skin/nipple may mean that skin could not be spared. Since my final path came out with LCIS and ALH, I know I am at a higher risk of a new primary still in my remaining breast. So far I have been so unlucky as to develop a new primary in a breast that was radiated before, but lucky enough to have a nice result on the reconstruction. I'm already praying not to go through this ever again but I'm afraid to tempt fate in any way.
However, I do think that had I lifted the other side it would been some consolation prize to the ding on my body image after all of this (ovarian suppression not helping). In the end though I think if I had prioritized a matched set, I would have been better off going bilateral mastectomy/recon. But every time I hug my son and can feel it at least on one side of my chest, I remember why I kept that one.
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I did a lift on the natural side and thought it was a very easy surgery. I had it done at the same time as the exchange and I was in and out in an hour or so and on my way home within 6 or 7 hours of surgery. I had my DH to help around the house but as far as pain went, I thought it was way easier than the mx. Took Tylenol for a couple of days and done. And I have a near perfect match. You can look at my pictures on the picture forum. I also got the nip recon and a Vinnie tattoo. All of this has helped tremendously with my emotional recovery. I hated looking in the mirror after a shower and seeing such uneven boobs! It kept reminding me that I had BC. Now I'm 2 years out from diagnosis and 9 months out from the last procedure which was the tattoo and can honestly say that my life is back and even better. I take better care of myself through diet and exercise and most importantly, saying no when needed. And perky boobs is just icing on the cake!
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sparkle2014, it definately looks different than it did prior to surgery. I debated for months about having the lift. My plastic surgeon was opposite from the other poster who said her doctor didn't advise the lift. Mine kept saying, I can't make a new one look like a 58 year old one. I was afraid to have pain on both sides too, but I talked to the nurse, outside ear shot of the doctor, and she said very few of their patients really ever complained about any of it except to say their nipple was sore. She did admit, that eventually, the lifted side would began to sag, but I would hope that is gradual. I am a bra wearer, I even slept in a bra and always have, so maybe that will help long term. I have to admit, if I knew in the beginning what I know now, I would have had both removed, just to lessen the dealing with testing and mammograms on the natural side but with the choice I made, I am glad I had the lift because either I would have had to have larger implant to match the natural side or there would really have been a big difference, so even though I wear the same bras as before, the new and the lifted breast seem smaller, which is fine to me. As for recovery, really no pain on either side and no problem with using arms. Even the feeling like several weeks after mastectomy of pulling when you opened a jar or something, none of that this time.
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Sparkle, I'm also in a quandary. Like Angelia, my PS is very gung ho on the lift. I think he really wishes I had gone for the full monte with real tissue etc.- but I couldn't bear the idea of a long recovery- I have two kids and don't want to be out of commission more than a day. That is why I don't want to have a lift on my VERY droopy side.
I'm also worried about the mammo recalls with a lift. I have gotten a recall on both my mammos since B/C because of my dense tissue and they always have to do a full U/S. But then maybe since that happens every time a lift shouldn't make a difference.
But my good side (my right side) is extremely droopy and I am very asymmetrical. If I don't have a lift, I'm going to go to Nordstroms and have a bra fitted- and perhaps a bathing suit as well.
I'm wondering how the healing is after a lift- say 6 months or a year out. Is the breast sensitivity the same?
Stephanie
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I did the lift, but then again I was a 42DD. Would I do it again, absolutely. I would have been extremely lopsided if I hadn't. One would have been hanging down to my waist, the other sitting up high - no thanks. Is there pain involved, some, but nothing horrible. Now that I am 5 months out - I honestly have no regrets whatsoever.
P.S. Went for my yearly mammogram and got an all clear - YAY!!!
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Yay Frostecat
I too had a lift back in May 2014 on my lumpectomy side-it was a piece of cake compared to the masectomy side. I would defintely do it again and have no regrets. I even had a small implant put in mine to help get symmetry. I had my first revision surgery Dec 29 and they are pretty close symmetrically but masectomy breast will get a little more added on next surgery to finish evening them out. My lift side-I have full range of motion. I am right handed and it is my right side....I was able to do almost anything with it from the start line. I also have all sensitivity in it. I dont like the scars but they are way better than my masectomy side and I think they will continue to fade with time. I think Id rather have the scar than the uneven boobs.
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momwriter--I had my exchange and lift on March 26th which was a Tues. By Fri I could drive so I sent my SIL home on Sat. Granted I do still have a DH to help but he left town the next weekend and I was fine by myself. I was even doing laundry by the 5th day with no issues at all. I do think it will depend on how much needs to be "lifted" as to your recovery. I had the donut incision around my areola and that was it. I was a 38B beforehand but now know I was wearing the wrong size bra. I'm now wearing a 34DD or 36D. I am a tad bigger. My PS said I had 500cc of breast removed and he filled my expander to 500cc and then put in a 600cc implant. On my native side, he lifted and added the smallest implant he had which was 120cc. I am damn near perfectly symmetrical!! If you require the lollipop incision or the anchor incision, there will probably be a longer recovery. By May, I was in the gym lifting (small) weights and power walking on the treadmill as well as easy yoga. I've had a mastectomy, an exchange/lift surgery and recently, a laparoscopic hysterectomy. The exchange/lift was by far the easiest for me. Yes, the lifted side will eventually sag but my PS said it will be about 10 years before I really notice and that will be about the same time that I will have to start thinking about replacing the implant. I'll be 61 then and will worry about it when the time comes. All in all, I definitely don't regret the lift!
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Frostecat, Congrats on the clean mammo!
Frostecat, Vette, and lala, Thanks for sharing your experiences. You really make it sound like it's not so bad and very doable. I have a month to make a final decision on this. Either way I'm looking forward to having the exchange done.
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Frostecat--GREAT news on that mammo!!
I would like to add to my comments on the lift that I am 47 so if it comes to another exchange in 10-15 years, then I might go with the lift too! For now I took the minimalist approach.
Still, looking at em out of the shower last night its like, I miss my breast. This is a clever disguise but its only a consolation prize at best. I hope someday they can figure out how to deal with this disease without hacking off our boobs.
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I so agree with you Fourminor. I can handle the chemo, rads, and hormone therapy-not fun, but doable. But to lose my breast has been very devestating to me. I hope someday they can find a way to do this without mangling us. I also dont understand why they cannot make our reconstructed boobs more like augumented boobs. I understand we cant go under the muscle-but its 2015-figure it out, without all the scarring and rock hardness. I was told that radiated boobs may never soften. I sleep propped on three pillows as the boobs are too heavy to lay on my back flat. I want soft and squishy, could care less about perky.
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Had an appointment with my PS yesterday. He was and I am very pleased with the results. He said that was his best ever as far as symmetry goes - that was great to hear!
I certainly don't look like I did - I mean I'm missing a nipple! But considering what he had to work with I'm very pleased , and quite frankly was happy to get the lift. It was the one good thing out of all of this nightmare!
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I think all of you will appreciate this story. I had ordered some temporary nipple tattoos, just to see how it would look, in thinking about nipple construction or 3D tattoos. Anyway, I had put one on but had a check up, so didn't want to let them see it, I felt embarrassed. So, I had tried to get it off and had trouble. Anyway, thats not what you'll appreciate. The nurse pract. I saw was pretty laid back and cool, so I had shared that story about me rushing around trying to get that off and that nobody had seen it but me but in a weird way, I liked having it there. She said a former doctor they had at this breast center had told them at one time, women don't need to be reminded of this every single day. If they get out of the shower and so much as catch a glimpse of their mastectomy scar or their breast with no nipple, it reminds them every day of what has happened, so if they get a nipple or a tattoo, and it eases that for them, thats the best medicine in the world. I said that is a doctor that truly understands. It is so true, you can never forget it, its a daily reminder.
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angelina- yes, so true, my UMX breast is a reminder and I purposely avoid the mirror when I get out of the shower. Same way I didn't look at myself bald.-
Frostecat and others- Thanks for all your comments about getting a lift. I think I am going to go for a lift when I have my exchange on April 2. My purist side was saying no, but really the noncancerous right breast is already tainted. It already has a clip in from a core needle biopsy that was negative. Because they are dense, I get mammo/US callbacks anyway every year that stress me out, so the scar tissue won't change that. And I'd really like to be able to wear a t-shirt without a bra and feel somewhat even- right now, natural side looks flat (I bet some people would think that was the UMX side!), and I'm not comfortable walking around uneven without a bra. I know the recovery will be a little longer, but it doesn't sound horrible. Worst will be missing my yoga class for a few weeks (maybe month) and that's because of UMX side.
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momwriter, don't let the worry of scar or recovery stop you on the lift. I had said the entire time I was waiting to have my exchange that I would not do lift. I'm thinking, why get both sides sore. But, I forced myself to actually look in the mirror and had to admit, it was needed. So, I agreed and have to say, no pain, scars barely can be seen and surgery was just Dec of 2014. I'm not so sure I'll be glad when I have my mammogram in June, but as of right now, I"m glad I went ahead with the lift because it has at least given me two breast that are even when I am wearing clothing.
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Thanks for the encouragement, Angelia! Mammos are already physically torture for me, so can't imagine this will make it any worse. Since I have dense breasts, and mammos NEVER showed anything- including a 3cm lump. I think I should only have MRI's which I may start having once the exchange is done (can't do them with a TE). I had 2 call backs for nothing on my Mammos- each time I had to be squished and squeezed horribly multiple times, then full U/S and then I had a biopsy for something seen on U/S but nothing was ever seen on mammo. Helpful for some people but useless for me.
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I have been living in a bra since surgery as per my PS instructions, but I have to admit, when I take it off, I'm not that comfortable. I've got an Alltergan 410 FF size 525 and it feels a little heavy to me. I think of my pec trying to hold it and I wonder how anyone does feel that comfortable going braless. Not only that but the more support the better. I'm most comfortable in a high impact sports bra, which surprised me when i tried it on. Will it always be this way?
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