No reconstruction- Happy w/your decision?
Comments
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Jing, you're not very far out. My chest was sensitive for at least the first 6 months. What I did was buy some very, very soft camis and wear them under everything. So the first sensation my skin got was soft. Some ladies even wear garments inside out so the seams don't irritate areas like the underarm. Brilliant!!!
I used to buy something and show my husband saying "look at how pretty this is". But I got to the point I'd say "look at how soft this is". You will find something that feels right. If you keep wearing a compression, you won't get used to the feel of fabric moving on your chest. It's about time to start to experiment. An old soft tee would be a nice start.
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Jing, you're very early-days yet at only 6 months out. I'm more than 1 1/2 years out and still sensitive. I've come to the the conclusion that this is probably just the "new normal" for me, even though my BS did say that she's seen patients who took 2 years or more for hypersensitivity to go away. She's also seen many patients with the reverse: numbness all along the surgical area that either takes a long time to go away or never entirely does. I'm the reverse: even the scarline is hypersensitive!
In addition to the skin sensitivity my ribcage itself feels sore (as if bruised) upon direct pressure. Since I don't wear a bra and, like barbe, stick to very soft garments with flat seams, this isn't an issue other than when my BS or oncologist does their routine exams. I asked my BS about it during my last checkup and she said that very thin people like myself experience that more often than others. Although it may feel as if it's the bone that is sore when pressed on, it's really the nerves beneath the skin reacting to being pressed against the bone -- just a different feeling than when those nerves are getting contact from the surface. There is little or no (in my case, pretty much no) fat either over or under the nerves to cushion them from contact from above or below.
While I had a port I was very uncomfortable in that area because, being thin, it felt and looked like I had a small golfball right under my skin, LOL! The skin was very taut and tight over it, and extremely sensitive in that area as well. It was a great relief to get rid of it. I had to laugh when the vascular surgeon said he would try to make the scar as inconspicuous as possible! I told him "It doesn't bother me to have two almost-9-inch long scars from the mastectomies, do you REALLY think I am going to stress about having a piddly little-nothing one-inch one as well?" He laughed too! :-) -
firebird, jing isn't 6 months out, she just had surgery at the end of May! She has a little bit more time of sensitivity before her body figures out how she'll handle it. I HATED hugs for quite a while, yet everyone wanted to hug me!!!
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Hello, I'll be joining you folks shortly.
I've decided on a right Ux with no reconstruction which will be performed on July 22.
I see no need to subject myself to further surgery and medical risk for the sake of my appearance in clothing.
Probably the fact that I'm 60 has something to do with my decision.
It's interesting to me how much of a presumption there is regarding post-surgical reconstruction. I'd prefer the surgeon tuck up the fat flaps that will be left (I'm no sylph) but she says if I still feel the same way regarding reconstruction in a year or two a plastic surgeon can remove them.
Have they been a significant issue or bother for people here? or am I needlessly concerned? Has anyone been bothered to the point that they sought surgery to flatten the fat flaps at a later date?
By the way do the residual fat rolls equal dog ears?
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Barbe1958: Thanks for posting your advice. It sounds like I need to keep to my original plan. I was wearing a lot of old T-shirts (that have no side seams) but as time went on, I found out that as the numbness wore off, my chest skin was getting way more sensitive. So I started wearing the compression tees. It sounds like I should try to stick to the noncompression tees or my chest may never adjust to having something brush up against it - I never had thought of that! Thanks for your help!
Firebird, you are right. I also have some very tender spots that are all exactly where my ribs and breast bone are. I too am very thin and your explanation of the tenderness directly over the bones makes a lot of sense to me. I'm sorry to hear that you still have hypersensitive skin after 1 1/2 years and I sure hope that it finally does go away for you. Maybe we both need to enroll in Barb's chest desensitizing program!
Kmpod: I'd push for the surgeon to make your scar as flat and smooth as possible. If you are left with the skin flaps, most ladies find them irritating especially if you will still need to wear a bra due to being only a unilateral mastectomy. As for dog ears, that can occur at the end of the mastectomy scar nearest the armpits. Basically it occurs because the chest curves the most there so if the surgeon is not careful, he or she may not be able to get the skin to lay flat there and you end up with a sort of pucker. Whether or not residual fat contributes to this problem, I think it all depends on where the fat is and where the surgeon wants to end the incision. You need to discuss this with your surgeon. Good luck with your surgery!
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Hi kmpod,
If you read some of the threads on this site, I think you'll find that having extra skin (after a skin-sparing mastectomy, which sounds like what your surgeon is planning) is annoying to many women. Some wind up having revisions down the road (further surgery to get rid of the extra skin). And yes, leaving extra skin and tissue does sometimes result in "dog ears."
When I was facing a bilateral mastectomy without reconstruction, I realized that I wanted my result to be as cosmetically pleasing as possible. That meant no extra skin and symmetrical incisions, if possible. I knew that I'd be depressed if my surgical site had extra skin hanging off. I also knew that reconstruction would be possible in the future even if I didn't have extra skin. Fortunately, my surgeon respected my wishes and I wound up with a smooth, flat chest and very thin symmetrical incisions (after almost five years, they're basically invisible).
As I understand it, if a women doesn't have reconstruction within a certain amount of time after a mastectomy (6 months to a year), the skin will shrink and not really be usable anyway. If you're really on the fence (it doesn't sound like it from your post) and think you might opt for reconstruction before too long, then definitely it's worth saving the skin and extra fat, but if you basically feel you don't want reconstruction, then I think most women who have been through it would say it's much better to have a nice flat chest without extra skin and tissue.
I just hope that your surgeon is taking her cues from you and not basing her approach on her opinion that you'll be unhappy without reconstruction. Many doctors seem to feel that way and they're wrong, in that there are a lot of women, like me and others on this forum, who prefer not to have reconstruction. In recent years, though, we've often felt isolated in our decision, without even support from our doctors. That's why I think this forum is so helpful and why I created BreastFree.org, a non-profit website meant to present non-reconstruction as a positive alternative to reconstruction.
Please let us know how it works out. And good luck with your mastectomy and recovery.
Barbara
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kmpod, I think that if your surgeon fully understands that you are 100% positive you will never have reconstruction, she will proceed appropriately in the operating room.
It sounds as if your surgeon hasn't 'internalized' the fact that there is no "if" for you regarding recon, since she made that remark "IF you feel the same way a year from now". I had zero doubt in my mind from the get-go, and my BS realized that. Of course I was very adamant about it from the very first discussion, as well; I left no doubt in HER mind that there was no doubt in MINE. :-)
I think it also helps to have a surgeon that specializes in breast surgery rather than a more general surgeon. You would think that would be a "given" but I have learned that it is not: Issues of insurance coverage/network can apply, as well as the fact that there may literally BE no breast surgery specialists in someone's geographic area. I think those factors may account for a lot of the 'unsatisfied customers' we read about here. Mine was a specialist and in fact breast surgery is the only thing she has done for the past 25 years. But, I also live within 20 miles of a major metropolitan area and am self-pay so there was no insurance company telling me what doctors I could use. -
Marlee,
I am suprised no one has mentioned the Breast Free website. It is very informative with pictures and personal stories. As I was 64 three years ago when I had my bilateral, I figured the pain and surgery time for reconstruction just wasn't worth it. Especially when the reconstructed implants don't have anymore feeling than my prothesis, which I can change to suit my needs. Face it nothing would replace my real breasts, and while there are times I still miss them, I know I made the right decision, and haven't looked back
The numbness, and chest tightness of bilateral are issues with or without reconstruction. The band around my chest still feels like I always have a bra on, but it is not painful, and diminishes bit by bit over time.
Hope this helps with your decision.
Dakota, aka Grandma Wolf
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Thanks so much for your input, everyone.
Yes I am decided, and there is no "if".
Due to your encouragement I'll call the surgeon's office tomorrow and emphasize that is the case.
It did seem to me, during my consultation with her, that my decision is so far out of the norm that, as firebird put so well, she didn't internalize the information.
Is it really so unusual to take this path? It just seems to me to be a sensible alternative given what I know about my cancer.
By the way, I live in a rural area of Southern Ontario and I will be travelling to a hospital that is an hour and a half from home. The surgery will be performed as day surgery and I'll be staying in town the night prior to and the night of the surgery. (That's how they do it here in Ontario - even a bilateral would have been day surgery.)The hospital is not in a major urban area but comes highly recommended and, thus far, I've been very happy with the care I've received. Everyone I have dealt with has been very professional and yet very empathetic.
After the path report is received in 2-3 weeks I will be referred to a cancer care centre in a larger urban area that is somewhat closer to home - the Juravinsky in Hamilton.
Wish me luck!
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kmpod, I don't think it's at all an unusual decision for older women such as ourselves. I could understand a bit of a skeptical reaction from a surgeon if the patient was in their 20s or 30s (perhaps stretching it a bit to the 40s? although I myself don't agree with any of that "age-ism" mindset), but you would think that a surgeon would have enough respect for the life experience of a woman above the age of fifty to assume that we do know how we feel about our own body after more than half a century. ;-)
So honestly I feel it is more a question of how an individual surgeon reacts to this kind of patient decision, than it is about how often it is done (statistically).
Is your surgeon a younger woman than you are? If so, perhaps she is "projecting" herself into your situation and seeing it from a "how would I myself feel" perspective. IMHO that is unprofessional and she should not be doing that, but it's a possibility if she is in her 40s and/or simply unable to envision how any woman could truly NOT want, or care whether she has, breasts anymore.
I only stayed in the hospital overnight for my BMX. I believe that is something that can and does vary by surgeon. My surgeon does not like to have patients in a hospital setting any longer than absolutely necessary, because of MRSA risk, and I completely agree. I went into the OR at a little past 9 am and went home at 11 am the following morning. No pain, no pain meds needed, a surprising "walk in the park" because I was expecting far more physical trauma than it actually entailed.
On the other hand, everyone I've ever talked to who had reconstruction of any kind was in the hospital for at least 3 days and had a proloned and painful recovery period.
I wish you all the best and I am sure you will do just fine! :-) -
kmpod-I talked to my BS about the dog ears and she said it happens most often if you have chub or bra hangover already. She said it is not a reflection of the surgeons skills it is an anatomy thing. I have told her I am firm in my decision for no reconstruction and to leave nothing extra. I worry since I have only met with her once that she understands that but I hope to see her at least before they put me under for surgery. She said of the dog ears develop they can be fixed later. Shesaid there is a limiton how far into the armpit they can go to get that smooth seam.
I am having bilat mx and no nodes removed. I am 20lbs overweight right now with most of the weight being in my upper body-hoping i won't get beagle ears...My surgery is Aug 8
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There has been a TON of good advice and comments on this thread!!! The 'projection' comment about what the female surgeon feels is BANG ON!!! I told my general surgeon that he would have to keep doing revisions until I was dead flat. He believed me.
The dog ears are tough. I'm overweight and the concept is that they have to stop 'carving out' somewhere. So they stop under the arm as it's the easiest place to hide it. When they stop, the fat continues and gives a bulge area. You shouldn't be able to feel it, but some summer tops are too low for me and it shows!!
As far as pain goes, there is NO muscle, NO bone and NO organs involved. My surgeon described it as a deep tissue wound and that truly is all it is. I have FM and expected a pain pump and they looked at me like I was crazy. I left the hospital without a pain prescription!!! The most irritating part was as the nerves start regenerating and they ITCH!!!!!!
As for the ribs, where the drains have sat for week(s) it is, or can be, painful to push on. I was so worried I had mets to the bones so soon that I was a basket case. Then I found out it was from where the drains sat, the body starts to heal, and then the drains are ripped out again! Trauma to that site.
Oh yah, the drains do NOT hurt coming out as long as whoever is pulling them remember to OPEN the vacuum part so there isn't any drag!!!
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barbe, you had me ROTFL at the "bone mets" comment because that was the exact thing that was going through my mind about 3 months out from surgery! At first I put the ribcage soreness down to some kind of "surgery trauma" and figured it would go away in a month or so (when I was younger I'd have assumed 2 weeks, but as we all know, the more mature body takes longer to recover from any "insult", LOL --- a fact of life for us Baby Boomers!). When bone-pressure-tenderness remained, well you betcha I was thinking 'OMG could it be bone mets they didn't think to look for???' (I was HER2 positive btw) So that's when I asked the surgeon on my next visit and she explained that no the sensation wasn't coming from "bone mets" or a "bone bruise" (which is what it felt like) but was just another new-normal nerve thing.
Calling a mastectomy a "deep tissue wound" is a great description! Kudos to your surgeon for phrasing it in that way. I wish more surgeons would explain it that well, I'm sure if they did there would be far less apprehension among potential mastectomy patients if they did so.
Ditto your comment about the drain removal not hurting at all. I was a bit squirrelly about that but it was merely a case of my surgeon saying twice "Okay, take a breath" and that was it. I didn't' even feel the removal itself. I've had way more discomfort than that while removing a band-aid, LOL. -
Barb1958 and Firebird--- I totally agree with all your descriptions that is exactly how my BMX was not nearly as bad as I first thought it would be. I wish all this hadn't happened to me but it did and I am so glad I made all the decisions that I did, I wouldn't change a thing
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kmpod & lilylady--I had a right side only, simple mastectomy on June 8th and I didn't feel nearly as bad as I feared. I needed pain meds for a couple of days and then Advil worked for me. I was in the hospital for surgery and was allowed to go home by noon the next day. I'll be thinking of you on your surgery days!
kmpod--I'm about 60 years old myself and I'm 50 pounds overweight--so, I'm not thin, at all! I told my breast surgeon that I didn't want reconstruction and she made my incision nice and straight. (Don't worry, it will look kind of gnarly and swelled up at first, then things will slowly start to even out.) When I loose some excess fluid (that's making me a bit swollen) I should be flat on the right side. My left breast seems perfectly happy to be left hanging around or sharing a bra with a silicone prosthesis.
It does seem like a lot of women are opting for reconstruction and I don't quite understand it. It seems like a painful, complicated process that can never truly replicate a real breast (or the unique sensitivity of that female body part). Anyhow, for me no "recon" seems good and right.
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Kmpod, Good luck on Friday. I'll be thinking of you and praying for you. The days right before are the worst of it all! The day of surgery will go so quickly and before you know it, it'll all be over. The surgery isn't that bad. You'll be on the other side of it with us before you know it! My thoughts are with you; we all know how you feel and what you're going through.
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I have just found this thread and am SO glad!!! I too have decided to have BMX without recon, so really great to hear you lovely ladies talking about it. I have had 4 lots of AC (disgusting!!) and was due to start taxol today for 12 weeks, then rads for 5 weeks. Saw my onc yesterday and said that I do not want any more chemo/rads and that BMX was the way to go for me. I am SO over the worry and pain of stupid BC, and just want to feel "normal" again. My onc agreed with me and was happy with my decision. Am off to see BS next week. Reading these threads has given me extra strength and determination. Thank you, my dears, you have all helped me without even knowing it, PS Barbe, you really make me laugh!!! And Erica, I ADORE the BreastFree site. Extremely positive and helpful.
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This thread and the Breast Free website have been wonderful for providing information and support.
I never knew that a virtual holding of hands could be so comforting.
Thank you.
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This is the reason I have stayed with this site even though my surgery was almost 3 years ago. The fears I had then, without knowing what it would all be like.....wow, I can't even tell you! There were only a couple of sites here (one was the Breastfree site) and another by a lady called Linda who posted pics of herself in clothes with a prothesis and then without that gave me the strength to say no to recon.
I didn't want the drama and the mulitple surgeries and the pain and disappointment I kept reading about here. Some ladies took as long as 2 years before they had even finished Stage 2 of thier recon!!!! I didn't have the extra time to take to give myself 'barbie doll boobs'.
My surgeon watched me very carefully as he said that about "deep tissue wound" but I agreed with him. I wonder if he was expecting me to lash out? hehhehheheehhe
The physical is taken care of. Make sure you take care of your psychological side too. You WILL get boob-envy when you see sexy ladies walking around in the summer. What I do when I see a full-breasted woman is, inside my head I think "Mooooooo". It helps!
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Love the subtle pun about "barbie doll" boobs, barbe! LOL
I'm not sure if "boob envy" happens to everyone though; IMHO the reactions are all over the map depending on the particular person. :-) I never had "boob envy" even when I had them (which were smallish anyhow, midway between an A and a B cup) and always thought "moooooo" or the equivalent! What I do find myself still doing now (and am assuming this habit will gradually disappear as more time passes) is noticing the vert SMALL-breasted women and thinking "Hm, there really isn't THAT much visual difference between her and myself... is there?" So for me the other-boobs-noticing is a reassurance thing rather than an envy thing.
But as the very true acronym goes, YMMV. ;-) -
Firebird, I do the same thing that you do. I now notice all the small-breasted women.
I was a pretty average 34D/36C before surgery, which was big for my small frame. I'm actually more balanced now and notice that a lot of women with small frames look pretty darned close to the way I do clothed. Also, I can buy tops that fit my shoulders instead of having the shoulder seams way down my arm. My surgery was 5 years ago, but I only started going formless in the last couple of years. At first very off and on, now I haven't worn them in several months, except for the shower poofies in my swimsuit. I still haven't found a swimsuit that looks good on me without a little something.
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Hi All, i laughed out loud at the boob envy. Yes i actually notice flat more than full and usually think that if they can carry it off so well, then so can I. My deconstruction was 4 weeks ago (yay:) and i am feeling almost back to normal. I see my ps tomorrow and hope he can say i can resume exercise not swimming has been torture. I am noticing that as the swelling goes down the top part of my chest is indented. is that normal.
oh yesterday i got my micro bead forms that i ordered from tlc and they are triangular shape. i know this is a silly question but i assume the pointy part goes on the top? i am looking through all my old bras and am going to try to sew a pocket in them. any suggestions? you want to know what I thought when i put them on, i like myself better flat than with these bumps!!! i asked my hubby if they looked too big and he said no ( what do you expect aguy to say...) but ithink that clothes look better on me flat - i was always big ( size 34 c) for my small fram 5'3.5" -110 lbs so what a surprise to try them on and take them out immediately. Any suggestions for how to wear them i feel like a noob, pushing them this way and that to make it look real!!!
i think i will only wear them in a swim suit but cant afford one yet so hope to sew in pockets soon. i did notice that tlc offers pockets that you can sew in for $14 but i will try myself first even though i am not a domesticated animal !! hee hee thanks all
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Shippy, I'm indented on top too and I've heard many others mention that so I think it's fairly common. The pointy part on the TLC form does indeed go on top. If you want to sew pockets into regular bras I found the following video to make it easy:
http://www.whatididtosurvive.com/category/how-to-make-a-mastectomy-bra/
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Okay Firebird, I give, what does YMMV mean
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YMMV = "Your Mileage May Vary" ;-)
Good catchall phrase to add whenever offering personal-experience info of any kind. :-)
I recently got called out for using AFAIK ("as far as I know") in an email. On the other hand, not too long ago I had to ask an Etsy seller what OOAK meant ("one of a kind") after puzzling over it for way too long and not wanting to sound like the dumbest person online by asking, LOL -
Oh, I`m always dumb when it comes to new jargon was. Like, when did a sweatshirt become a hoodie...oh, when they put the hood on. doi!
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Heck, I still call them "hooded sweatshirts", LOL. The first time I heard the term "hoodie" it reminded me of what we used to call those kids in highschool who wore leather jackets, had greasy looking hair, travelled in "packs", and had a tough reputation. You know: Fonzie having turned to the Dark Side, LOL.
It's a good thing I have no interest in blogging, twittering, or the various other forms of truncated so-called "social media communication" --- I'd probably be lost in a hopeless maze of acronyms and jargon in 10 minutes. I very rarely even use text messaging but when I do, I am one of those dinosaurs who refuses to use single-letter word replacements. Seeing "u" for "you", "r" for "are", etc etc sets my teeth on edge! -
Shippy! I am so glad to hear you are feeling almost back to normal. I hope you get the green light to swim and exercise. I wonder if you have an indent that some have after a mastectomy or if it's from the expanders. I have indents/concavity in my ribcage from the expanders. Mine is more in the center of where the implants used to be, with extra muscle above and below. I still think the muscle will retract further and lie flatter once I exercise those muscles more. Sometimes I wonder if that stuff might be fat or extra skin, but when I give it a little pinch, it definitely feels like muscle. Or, when I flex my pectoral muscles, it retracts more. I'm only three months post deconstruction, and my PS said to give it six months for the muscle to retract.
I can't help with the forms, because I don't have any yet. I'm really groovin' on going flat right now. I feel so free after all that implant and muscle pain. I am starting to forget about my flatness at times, which I think is a good sign! Friends and family are starting to give me "real" hugs again, and it's so nice. I am not feeling so self conscious about it either. It's just who I am now!
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I have a fairly large indent in the middle on the cancer side. My BS apologized for it and explained that it was unavoidable because she had to take "extra" in order to get a sufficiently clear margin. She also explained that my ribcage is not entirely symmetrical on both sides; my right upper ribcage projects outward just a bit more than the left, which while I had boobs was not noticeable at all of course. I told her no apology necessary, I'd much rather have the indent than the alternative!
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Hi All,
Just back home now after my UMx and SNB surgery yesterday and I'm feeling surprisingly well with minimal pain. I can see where it will be a challenge not to overdo the activity.
We stayed overnight in the town where I had the surgery (just in case any complications arose) and made our way home this morning. I'm ensconced in my reading chair, feet up and surrounded by pillows. Tylenol 3's are doing well for pain control and, yes, I'm also taking Senokot-S.
I was surprised this morning by my blue pee! It looked like I was using Tidy Bowl. I'm drinking lots of water to flush everything out of my system.
I'm supposed to have a visit today from the VON to empty the hemovac and change the dressing but when I called to see when they were coming the response was- "Yes, we got the referral but it hasn't been logged in yet. We'll try to have a case manager call you this afternoon to assess your need." WTF, I guess this might end up being a do-it-yourself project.
What is used to measure the outflow? I've got a shot glass in ml that will be too small and a measuring cup that will be too large. Any ideas? - or just do it incrementally with the shot glass?
I haven't done the "unveiling" yet so I don't know about lumps or dog ears. Presumably there will be some swelling that will dissipate with time.
No regrets, just relief that it's done.
Now the hardest part comes - waiting 2 weeks for the complete path report.
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