No reconstruction- Happy w/your decision?

Erica3681

chiluvr1228,

That incredible sensitivity from fabric against the skin sounds just like the sensitivity I experienced from around one week after surgery until about a month after surgery. I was told it was probably nerves regenerating. It seems quite common. Hopefully, yours will die down soon. As I said in an earlier post, fabrics like satin and silk are less irritating because they glide over the skin, so if you have anything like that, it might be worth a try. And the gentle massage helped a little, too.

barbe1958

Hauntie, I never had a binder anything. My DH would massage my scar every night to keep the skin supple. I'm worried you're developing a seroma.

chili, yep, sensitivity lasts for a bit. I used to come home and say to my DH "look at this pretty top I got!", now I say "feel how soft this top is!". You used to have a bra protecting all that skin, now there's nothing. I got a couple of soft camis (some ladies even wear them inside-out to avoid the seams) and then it didn't matter what I put on the top. You're doing great!!

FLwarrior

I didn't were a binder after my UMX either.  I was bandaged the the day of surgery and the following day.  I spent 1 night in the hospital and the first day I was home the visiting nurse removed the bandage.  I never wore a compression bra.  I go bare most of the time, but sometimes when I go out I will wear a bra and prosthesis.

Something that has been very confusing for me is...the skin adhering to chest wall...idea.  So many ladies have referred to this.  I thought that it was better for the skin to move freely and not adhere to the chest wall, so I asked my OT about it on Friday.  She confirmed that freely moving was the goal.  In fact I have one small area of adhesion and we are working to break it free.  Am I missing something here?

barbe1958

FL, I've been wondering that too. I massaged my scar line and kept it supple. If it bound, wouldn't it be tight?

pip57

Ditto on the keeping the skin moving and not adhering.  I would think that would be restrict movement.  My surgeon specifically said no binders or binding clothing.  He claimed more complications came from those situations in his experience.  Just wondering, in the US do you pay more for the binding?

Barbe, I too had that horrible itch.  It was somewhere deep under the skin and you couldn't relieve it by scratching.  I still get that every now and then. 

Hauntie

I've been trying to find info on seroma formation on the internet. Here's one of the simplest explanations.

Breast cancer is the second leading cause of cancer death among women. The surgical treatment of choice for these patients is either modified radical mastectomy or breast preservation depending upon stage of the disease. Seroma formation is the most frequent postoperative complication after breast cancer surgery. It occurs in most patients after mastectomy and is now increasingly being considered side effect of surgery rather than a complication however, all patients are not clinically symptomatic [1]. Seroma is defined as a serous fluid collection that develops under the skin flaps during mastectomy or in the axillary dead space after axillary dissection [2]. Incidence of seroma formation after breast surgery varies between 2.5% and 51% [3-5]. Although seroma is not life threatening, it can lead to significant morbidity (e.g. flap necrosis, wound dehiscence, predisposes to sepsis, prolonged recovery period, multiple physician visits) and may delay adjuvant therapy [6,7]. Fluid collection is ideally managed by repeated needle aspiration to seal the skin flaps against the chest wall. Several factors have been investigated as the cause of seroma formation these include age, duration of wound drainage, use of pressure garment, postoperative arm activity, preoperative chemotherapy, and use of electrocautery [3,8-12]. The present study was undertaken to identify risk-factors associated with seroma formation after breast cancer surgery.

From my understanding of this info; during the surgery a lot of tissue is removed (obviously) and  the skin is separated from its normal position on the underlying tissue, causing a skin flap. This leaves a space, which is where fluid can accumulate. The skin has to reconnect with that underlying tissue. There some research being done on the use of a tissue adhesive injected into the sight at the time of surgery to prevent seromas.

Adhesions are formed by scars sticking tissues together that don't belong together. Massage is done to either prevent the adhesions or help release them.

 On another topic I've mentioned here - inexpensive non mastectomy bras to use with a light prosthesis - namely the Coobie bra. I just got my copy of this weeks Bed, Bath and Beyond circular. They are advertising the Genie Bra at 2 for 19.99 (vs Coobie at $22/each. It also has a pocket that will hold a light prosthesis. Wish I had seen this before I bought 2 Coobie bras.

Re the itch that cannot be scratched - I hate that other people are suffering with this, but it's nice to know that there are others out there experiencing the same thing and know exactly how maddening this can be.

cp418

Do you normally get PT as part of the post surgery recovery phase?  I realize the amount of time for drains used depends upon the individual. May I ask about movement and recovery time to be allowed to use your arms again and return to normal daily activity level?  I know with my lumpectomy there was cording and I had to do exercises on my own - - arm stretches over my head in the hot shower helped break down the cording. Fortunately now I have full range of motion in that arm and no cording issues. I am going ot discuss PMX with my surgeon at next office visit.  I am trying to figure out recovery time and issues I may encounter as I own a farm and VERY physical daily chores. I will have to hire someone again while I am laid up. Frankly I'm still angry they forced the lumpectomy as this would be over with....

agada

Oh, God that itch.  Does everytone get it???  I stilll get it from time to time as well.  I don't know where to scratch!  It does not help to scratch my chest so I end up, like an idot, trying to scratch everywhere else in case my brain is just not receiving the right information from the location of the itch.  Crazy, no?

Agada

barbe1958

Hauntie, have you been wearing a bra? I hope not! That alone, would irritate the wound site!!!

Agada, I just would break down and rub my whole chest area vigorously. Then use a cream to cool it all off.

SoCalLisa

I had PT..I needed to stretch some of the areas after they were healed thoroughly

cp418

I realize this procedure is far more complicated than my ooph which required no heavy lifting for 6 weeks post surgery.  If I recall with my lumpectomy after the drain was removed I may have resumed normal activity soon after. I did my stretches without any PT guidance as I needed to resume my work ASAP. So I am trying to research the average recovery and activity hopefully without complications.....  Thanks Joann

Erica3681

cp418,

I had a lumpectomy and radiation three years before my bilateral mastectomy, so I have some experience with that comparison. I also had a hysterectomy/oophorectomy six years before my first bc diagnosis, so I've been through that, too (mine was an abdominal surgery, not laparoscopic). While there is certainly more wound healing with a mastectomy than a lumpectomy, I was moving my arms after the mastectomy very quickly, doing stretches and the like. At the two-week mark, I actually went to a physical therapist, who helped me stretch my arms and work toward regaining range of motion.

I think (hope) you may be pleasantly surprised at how quickly you're able to resume normal activity. Unlike your ooph, no internal organs are affected. I found my recovery from bilat mastectomy much easier than from my hyst/ooph, which had me walking hunched over for quite a while. It's true that with the mastectomy you also won't want to strain, but the pain for most of us is minimal. I gather you had a drain with your lumpectomy (I didn't), so you're already familiar with that. For me, the drains were the biggest source of discomfort. Luckily for me, they were removed after only four days. I realize that I'm at one end of the spectrum on that--most women have them for at least a week or two. 

I was driving after two weeks (took myself to the PT appointment), going out after one week (could have gone out sooner). Went to a fancy event eleven days out--not totally comfortable with camisole and puffy forms, but I looked fine. No one who didn't know about my surgery would have guessed. I used a wedge pillow for sleeping for several weeks and it helped tremendously.

You might find it helpful to check out the Post-Surgical Interim Solutions section of my non-profit website, BreastFree.org. You'll find suggestions for how to prepare for the recovery period post-surgery.

Barbara 

cp418

Barbara - thank you so much for your detailed response. Yes, the drain was the most discomfort during lumpectomy so I know what to expect plus more with BMX. I am so glad to hear your activity level returned fairly soon as this is my concern owning a farm and barn work. (I will need to hire someone during recovery to do this work - - so teh sooner I recover the better.)  My ooph was the robotic method but I still felt soreness in core abdominal muscles for almost 3 months if I did too much. Avoid heavy lifting - - - very diffficult not to do. I still have the deep nerve pain from lumpectomy site maybe because so deep against the chest wall. Healthy healing and returning to normal activity level are my primary concerns. I do not see myself continuing to stress over mammograms and be denied occassional MRI screen. There is too much family cancer hx and I feel like I am playing Russian Roulette with these mammograms. 2 lumpectomies + moderate dense breasts + family hx = PMX for my peace of mind already.

coraleliz

cp418- I took 5 weeks off from work after my BMX. I work 12hour shifts as a RN, working with adult patients. I probably could have gone back a week earlier. There was no "part-time" option for me. I was told not to drive for 1 week following surgery. Not all women are told this. My drains came out after 6 days & could have possibly come out sooner except for the drainage dropped to less than 20ml/24hr on the weekend. My BS told me that thinner women recover faster. Where the drains pressed against my ribs was the worst. Bumpy car rides were quite uncomfortable. I made up my own "PT" & exercises. My BS said that studies have shown that "early" exercise & PT doesn't show benefit in the long run(sorry,can't think of better wording). Although I think it helps in the short term, at least with brains like mine. The level of fitness you have from your work/lifestyle should help you recover sooner. I started going to the gym, running & biking(as I did before surgery) the day after my dains came out. Just more slowly. If you do too much, your body will let you know. Lots of variation in experiences, wishing you the best.

Lunakin

I got a seroma and my BS said I "wasn't supposed to" because I was thin. Go figure. I don't think they really know because it's not tracked in large enough numbers of patients. I wasn't told to wear anything in particular. I may have had the drain taken out too early, but oh I wanted that horribly inconvenient -- and painful, if it got pulled -- drain & tube out. 

Yes, I had that incredible sensitivity like being stung with nettles over a wide area -- "nerves re-growing I believe the BS's RN told me.) But I still have neuropathic, i.e., nerve-related, pain in certain areas and can't stand bras or camis or anything that rubs an area above where my breast used to be. 

I had the seroma drained twice --90ccs the first time and 50 ccs the next. Then the BS put a drain back in. She said it wasn't good to keep draining it w/a needle when it built up; she wanted it to drain continuously so it wouldn't form a pouch. Finally I got the d@mn thing out for good. I am still hypersensitive over the drain tube exit scar.

Yes, we want the skin to glide around and not be adhered, but not to be separated from the underlying layer by a significant layer of fluid. Check your other side to see (if you had a uni MX), or maybe over your side or back ribs if a bi-lat MX) to see how the skin should move. 

More than 2 years out I still have some tightness despite fairly regular massage by DH. Some spots are hard to get to oneself & w/only one hand! 

My area of mild (sic) trunckal LE is over part of the former seroma area, but not all of it. Not sure of the correlation.

So much more study needs to be done on these post-op conditions. I figure I've just got to live with the neuropathy and the LE since nothing's worked so far. Good be much worse, though.

cp418

Thank you all so much for your replies.  Everyone heals different and has different complications. I recall with my drain I had to track how much was discarded each time. My surgeon would not remove it until a minimal amount was reached. Also, I had 18 nodes removed and at the time so I'm sure the extra precaution.  Yes, hypersensitivity at the scar site is all nerves and extra scarring. This is very hard during mammogram where they pull on my scar - - very painful. I feel like there is injury during the procedure and then it has to heal each year -- only to repeat a year later. Sounds like timing of drain removal is critical and proper PT. I always thought my return to activity level after drain removal helped me regain my range of motion. BMX far more complex recovery.  Thank you Joann

Erica3681

coraleliz,

What your BS said regarding studies about early PT/exercise makes sense. I think I would have ultimately achieved the same return to fitness on my own. I did find the PT helpful, though, because the therapist focused on preventing adhesions which had occurred after my lumpectomy, at least partly as a result of radiation, and which had limited my range of motion. With her help, my ROM returned to pre-lumpectomy levels.

Lunakin,

Have you ever considered trying gabapentin (brand name Neurontin) for the neuropathy? I'm not big on taking meds, so hesitate to even suggest it, but it's possible that a very low dose would be enough to alleviate your discomfort. It might be worth trying it so you could have more freedom to wear camis or bras if you chose and, more importantly, so you would not be in pain.

Barbara

Hauntie

Barbe - I've only been wearing a soft pull over cotton/spandex bra with light weight prostheses. I'm wearing it over a cotton/spandex undershirt. I did get fitted this weekend for a regular bra and prostheses, but I know I'm not ready to wear them yet. My fitter asked me if I would be willing to volunteer as a model for their fitter training. I said sure. I have a MRM on one side and a simple MX on the other, so they can practice fitting 2 different MXs on the same person.

cp418 - I'm a little over 4 weeks out from a simple PMX. My final drain came out at 2 weeks and I had to have fluid aspirated once. I still have some soreness along the scar and the area on that side of the chest is very sensitive, although it is getting better. I have full range of motion in my arm, although it's a little tight when I reach really high. Some people seem to heal a lot quicker than others.

Has anyone experienced this sensation. I feel cold on the PMX side of my chest when drinking cold beverages and hot when drinking hot beverages. It's like I feel the cold or hot sliding down the inside of my chest. Not painful or particularly uncomfortable, just very bizarre.

cp418

Hauntie - I've never heard of a temperature response reading multiple posts --- always pain and tingling issues. However, you made me think of another question. Has anyone with previous lumpectomy and radiation treatments have healing problems on that breast due to the rads?  I know patients with previous rads have issues with reconstruction so what to expect for healing issues?

kmpod

Hi Hauntie - I get that feeling of flow when I swallow liquids too - both hot and cold.

Not painful, just ... interesting. I picture a little waterfall when it happens.

What I don't know is how long the sensation persists or if it is permanent. Presumably it has something to do with the nerves being "rearranged" in surgery.

SharonMH

Hi  I am two years out and I still get that cold and hot feeling on the side of my chest when I  drink cold and hot things. Very strange feeling. I have not had reconstruction after my mastectomy and I am fine with it. SharonH

Hauntie

kmpod & Sharon - glad I'm not the only one feeling this strange sensation. It's really weird. I know it was nearly 17 years ago, but I don't remember feeling any of this "nerve weirdness" stuff after my first MX. I guess there is no surgery, radiation, chemo issue that somebody else on BCO hasn't already felt or been through. It's a comforting feeling.

cp418 - What type of reconstruction are you planning? I attempted reconstruction, after my first MX , with a TE and implant. I had no problem with the skin expansion and the incisions healed fine, but the implant became encapsulated and had to be removed. A PS I recently consulted said the radiation probably played a part in the failure of the reconstruction.

cp418

Hauntie - I am not considering reconstruction. I simply want to heal and hopefully get back to my current activity level without complications ASAP. I don't have the endurance to do multiple surgeries and additional recovery time. I just want to move on.....(maybe a tattoo someday!!!) 

FLwarrior

Hauntie,  I have that same hot or cold sensation traveling down my chest when I drink something warm or cold, just like kmpod describes as a waterfall effect.  Does anyone know how long this will last?  It is very odd, but not painful.

Lunakin

Erica/Barbara,

Good suggestion on the gabapentin. It usually works for most people with neuropathic pain, at least to reduce it. However I was so intolerant of the sedative effects I couldn't get up beyond 100mg, and that small amount didn't help. I need to have all my facilities awake at work! Since I feel I still have some "chemo-brain" or post-cancer-fatigue/fogginess. 

I cope by wearing only bras and fabrics which aren't irritating. And sometimes I'll stick a sheet of Tegaderm over the area as a barrier between my skin and the clothing -- works great! As long as I don't sweat too much from summer heat or Femara hot flashes, as then it'll slip off. 

 BTW love your "Breastfree" site. If I meet someone who asks me about BC / prosthetic bras, camis, etc., I recommend your website.

barbe1958

Hauntie, don't wear a bra for a couple of days and let your wound heal!!! Give it a chance to settle down before assaulting it with a binding factor, whether a bra line or underwire.

I, too, used to get that hot/cold thing and forgot about it until you mentioned it. It's amazing what our breasts used to insulate!! I don't think I get it anymore...

lilylady

I have just had fluid drained for the 10th time snce my BMX on Aug 8. 90cc on  non cancer side and 40 on cancer side. My BS says still not to worry but I am starting to worry. That was great info you posted Hauntie and I fit many of the parameters to have developed the seroma. My numbers vary from one draining to the other but 90cc today made me nuts. That's double the amount she got on friday. I have been going twice a week.

  It is delaying the start of my rads by 3 weeks already and she said she will not OK it til she gets less than 10cc. She also said activity level or compression will not make a difference. I tested that out by just sitting in a chair from the 9th draining til the 10th. It doubled so maybe I believe her. I have been extremely active since my surgery. I have had full range of motion nd little or no pain. She is saying to put radiation on something that isn;t heeled underneath will only make it worse.

   I worry because i have seen no one else post that they are being drained this long after surgery. And she is one that keeps sayingshe wants the skin to be stuck to the chest.

   And i too get the cold/hot feeling with drinks.

coraleliz

lily- Maybe skin "stuck to the chest" means somrthing diferent to your BS. Certainly not medical terminology. I had a BMX & my left side seemed a little "stuck" but that has resolved.

Hauntie

Lilylady - that really stinks. Have you asked her what's the longest she's ever had to continue aspiration on a patient? This seems atypical to have it go on this long. Does she have any idea what's preventing you from healing? Would you consider getting a second opinion? Some surgeons believe in binders and limited movement, some don't. Mine happens to believe in both - big time. I think there needs to be some major research done on what causes seromas and especially how they can be prevented.

I had a pretty good day - weird sensation wise. Mostly just numbness and some minor pins and needles. The maddening itch hasn't been back for a couple of days. Probably shouldn't say that. I'm afraid I'll jinx myself and it will come back. 

Marny

I had a bilateral mastectomy on 8/1/11 and like many of you, I opted against reconstruction for several reasons.  My surgeon was fine with my decision but I did agree to speak to a plastic surgeon just to make sure I fully understood all of my options. Although I fully support the decisions of women who choose reconstruction, I'm very happy with my decision. I feel very blessed that I've healed without any problems and have easily adjusted to using breast prosthetics. I am also experiencing the strange sensation described by some of you when I drink cold beverages (not so much with hot drinks).  I do have a question about numbness under my arms, especially the one from which the lymph nodes were removed.  Do you eventually get some of the feeling back or can I expect to be this numb forever?  Thanks and be well.