No reconstruction- Happy w/your decision?

Hauntie · September 2011

From my experience the numbness pretty much lasts forever, under the arm where the lymph nodes were removed. I had my MX almost 17 years ago, so sentinel node biopsy was not an option. I don't know if that makes a difference in the degree and longevity of the numbness. My numbness extends beyond my armpit to the back of my arm.

I just had a PMX 5 weeks ago, with no node dissection. No numbness in my armpit area, just the feeling like I have a terrible razor burn, but that's getting better.

SharonMH · September 2011

Hi I had my MX back in March 2010 with 14 nodes removed. My numbness also extends beyond my armpit to the back of my arm. I have been told it is normal and may last forever. All and all things are pretty good. No reconstruction for me. SharonH

coraleliz · September 2011

Marny-I had a BMX in April of this year. I had tumors on both sides. 4 nodes removed from the left & 5 nodes from the right. Now that you mention it, I do have some numbness still in my left armpit & not the right. The numbness continues from armpit over to my chest. The right side I just have some numbness on the chest. I didn't have as many nodes removed as others.

Padiddle · September 2011

I was uninsured when first diagnosed. Getting recon wasn't an option as I was self-pay. I had the right breast removed upon diagnosis (hence padiddle). Because I was recently diagnosed with a second breast cancer in the remaining breast, it would have been nice to have had both removed when I was first diagnosed (hindsight). Because I became metastatic two years ago, left mastectomy is not an option at this point. I can honestly say having one breast has not bothered me besides a few wardrobe issues and gravity. I never buy horizontal print tops but I can live with that. Anyway, hoping the best for all here. Jean

LindaKR · September 2011

Goodness, it seems that each BS has his/her own protocol. Mine had me use the binder for 5 weeks, then he allowed a sports bra, he wanted me to use my arm, but not raise it above shoulder level for about 5-6 weeks, at that time I was refered to an OT to make sure that my ROM was ok, or to help me regain it, and strength. The OT I went to was terrible, she was almost in tears the whole time, telling me how horrible it must be for me to have BC, how she would curl up in her bed and never come out again. It was awful, plus she gave me very poor info on LE.

I had very little trouble with my MX site until radiation, then I developed truncal edema, LE in my arm, pain and ROM issues that have not resolved despite therapy. I'm so glad that I'm not have reconstruction, I can't imagine how that would be, sounds like a way to make a problem worse to me.

Hauntie · September 2011

Linda (with and i) - Sounds like your BS and mine went to the same school re binders and arm movement. I finally ditched the binder after 4 weeks. (She doesn't know.) I've been wearing a spandex/cotton sleeveless undershirt that gives me a bit of compression.

Lynda (with a y)

LindaKR · September 2011

Lynda (with y) - I sure wanted to, the nurse told me I could go to a sports bra at about 3-.4 weeks out, I still had one drain, so when I went back to get it taken out the BS, was not happy, he wanted me back in the binder for another couple of weeks, I did wear the sports bra at night though. He insisted that the patients healed better and had less complications in the long run.

barbe1958 · September 2011

I am almost 3 years out and still have the numbness at my armpit and to my back. It was difficult at first to shave, I had to watch myself in a mirror as I couldn't feel where the blade was, but now it's all automatic and I do fine. They really mess getting at your nodes, digging around and cutting nerves going after that blue one, but it's all good in the end. Glad to hear they don't do as much damage now, though.

Starak · September 2011

I am 16 mos out and have the numbness on the proph side only. The right hand and arm try to go to sleep in normal use. Surprisingly not on the ca side where they removed lymph nodes. However in my case, I left the hospital with a softball sized hematoma under my right arm (couldn't put my arm down) that we elected to have resolve on its own. The BS felt it would come out through the drains. Took many many months to resolve and rightly or wrongly, I attribute a lot of the ongoing nerve damage problems on that side to the after effects of the hematoma. Left side always drained mixture of fluid and blood, and the right almost entirely blood. Today the left has a smooth skin tissue covering over the ribs and on the right there is no tissue under the skin and the ribs stick out a bit. Even any tendency to underarm odor is half or less on the right. Perhaps as a side effect (or not) of the AI's, I now have no regular hair on my legs, arms, or underarms, just peach fuzz if that. However, my hair has always been thin since infancy and the hair on my arms and legs was always pretty fine and light in color.

My BS was adamant about wearing the binders and then the dog ear mutants forced me to wear sports bras to strap them down so I have been bound for all but the last month when I decided that it caused me too much discomfort to continue.

In case, anyone thinks it might have meaning, I had a broken arm at the time of BL MX on the ca (left) side which of course had a very big effect on how much I used each arm. Though with the huge hematoma on the right and inability to put my right arm down for a very long time, I was really restricted on both sides. The broken bone took 6 mos total to heal, partially because I didn't know it was broken in the beginning and so didn't have a cast, and partially because this particular bone takes 4-6 mos to heal.

lalisa · September 2011

I am bothered with numbness and weird sensations on the proph side too, and it is 4 years later. The side with the cancer and the node removal is quite comfortable. Go figure.

barbe1958 · September 2011

Ah lisa, you pissed off your healthy side!

lalisa · September 2011

I know!! That thought has totally ocurred to me!

Starak · September 2011

So that's the deal - they weren't satisfied with making my life miserable from puberty, one tried to kill me and this was the parting shot from the other one? And in answer to the question "Happy w/your decision?" - YES, I am sooo happy with my decision!! Not the right one for everyone but clearly the right one for me.

Barbara

TAPPY · September 2011

I have not been able to make a descision about this.

One part of me says let it go, heal, move on, it is your badge of courage. I was never very breasty anyway...but good ole wonder bras did the trick.

Another part of me wants some clevage...but dont you have to redo implants in 10-15 years ?

which would put me doing this AGAIN at 60 or 65 ? and does insurance pay for it a 2nd time ? I think I would rather spend my $$$ and time off on travel and going some place fab and out of the way....but that is just me

I am 50 and I am pretty happy with the way I look (minus a few pounds)

If I were going to go thru the hassle of surgery (because no surgery is fun) - I think I would opt for a face lift instead.

I keep saying I will decide later..

Denise2730 · September 2011

Tappy I think if I had a choice between a facelift and boobs I would go for the facelift. Everyone sees your face but not many see your boobs (unless you're a stripper) :.)

Lilly did you not have drains put in after your surgery? I'm surprised your doc is still getting so much out of you when she aspirates.

Starak · September 2011

Tappy: If there is no compelling reason to make a decision now and your heart is not compelling you, then the "I'll decide later" seems like the perfect one in the interim.

I did the "I'll decide later" with the decision about removing the mutants (dog ears). The BS said the ideal would be to wait a year before incurring another surgery which I did. And now my heart compells me.

Barb

shippy41 · October 2011

hi i was deconstructed in june and recently developed some swelling on the cancer side. i went to see the ps and he said not to worry it will go down on its own. Then i went to see a lymphedema specialist and he said it definitely ISNT lymphedema but sent me to a PT to show me how to wrap self like a mummy and do manual lymphatic massage. did anyone elso go through this. how long does it take till i am flat completely? any recommendations on the Massage, i cant really remember all that the pt told me.

Hauntie · October 2011

I had my MX almost 17 years ago and I still get weird sensations sometimes - a maddening itch that I can't scratch, the sensation of having a very sore nipple. I had a PMX 6 weeks ago and it's just now that the worst of the nerve irritation is gone. But, I expect that there will be episodes of it again. There's lot's of nerves in that area that got disturbed. My last episode of "nipple" soreness lasted a couple of weeks. I finally went to my PCP. I asked her if the nerves could be regenerating and she said they might be. Fortunately, these episodes are usually much shorter than that - an hour or two at the most.

Here's a couple of things that have worked for me - for the "itch that can't be scratched," I use benedryl cream. One or two applications usually calm things down. For the "nipple" soreness I use capsaicin cream or gel. It's usually used for arthritis pain. My PCP recommended it. Be careful with it, wear gloves or wash your hands very throughly. It burns like hell if it gets anywhere near your eyes or other sensitive areas. Try to find it in the roll on applicator, which puts it exactly where you want it and no where else. I've never tried it for the itch sensation. Maybe I will.

6 weeks of booblessness and no regrets. I didn't much like the surgery or recovery process (who does), but now that things are calming down, it's great.

kmpod · October 2011

The deed is done. And I feel really good about it.

I'm freshly home from my left PMx, bedecked with two drains, but having very little in the way of discomfort. Thankfully my seroma on the right side had diminished enough that the surgeon felt it unnecessary to reinsert a drain on that side.

My surgeon asked me if I was having any second thoughts before I went into the OR and I reassured her that I was not.

i will not be surprised at all if there are some pre-cancerous proliferative changes found in the pathology since that breast had activity requiring an excisional biopsy about 15 years ago. If there are no changes evident I will still have no regrets.

Now all my attention will be focused on healing.

K.

barbe1958 · October 2011

Good for you Kathy!!! Let the healing begin...

Rowan47 · October 2011

I am still very happy with my decision!! I try to go jogging every morning. How easy it is without boobs wobbling around!! Hope you are all well Kiss

Anonymous · October 2011

Well, I am now six months post-deconstruction, and I don't miss those implants one bit!! I feel so much better physically, and I am pleased with my appearance in general. I haven't been fitted for prosthetics or worn any fluffy stuff. My concern has been keeping my lymphedema in check, and my compression tank smoothes some of the concavity. I have a whole new wardrobe and couldn't be happier! If I ever get proths or stuff a little, it will be minimal so I can still wear with my new clothes. I never thought I would feel this way, but I think I look much better without the implants! Laughing

coraleliz · October 2011

Tina-what's a compression tank top. My chest looks kind of like my breast were unplugged from sockets. There is a raised area on the lower inner sides where my breasts use to be. Maybe I should look into a compression tank?

barbe1958 · October 2011

liz, what you are experiencing is called a "fat shelf". It's a built up area where our breasts used to rest on. Kind of like a support ridge. It's really hard to get rid of, but over time you will stand differently and it won't be so obvious. I wanted mine lipo'd off but it would cost me $3,000!!! I could get a total recon with tummy tuck for free, but couldn't get a couple inches of fat taken away. Doi!

coraleliz · October 2011

Thanks Barbe, I just checked & I think mine have decreased. I'm only 6 months out from surgery. Sometimes I think our insurance companies should be kinder to us. We saved them THOUSANDS or $$$$$$$ but not reconstructing. I read on another thread of someone who had a complicated recontruction done & her total cost could have bought me a house. So 3,000, that's nothing.

Hauntie · October 2011

So that's what that is! I'm 8 weeks out from my PMX and it seems to be getting more noticeable. Is the reason I don't have one on the other side because I had a MRM on that side?

barbe1958 · October 2011

Hauntie, did you have a modified on one side and a radical on the other? Or a simple and a modified (they rarely do radical anymore). Also, you just had drains out. That area will settle down more the longer the drains are out.

epgnyc · October 2011

Hi, Marlee.

I had a BMX back in March (one on the BC side and the other prophylactic, like you). This was my 2nd bout with triple negative BC (the first time was in 2002, in the same breast). I don't want to have to deal with this again so opted for a bilateral mastectomy. I'm a young 63 and was pretty sure that I didn't want any reconstruction. I've had way too much surgery (also had a bilateral oopherectomy in 2002) and like you, I just want to get on with my life. I also saw a BS just to review my options in case I changed my mind about reconstruction and found out that in any event I was not a candidate for implants because of prior radiation and my skin's bad reaction to it. So that left me with DIEP flap surgery and another 6 weeks of recovery. No thank you! It's now almost 7 months since my BMX and I'm very happy with my decision. I have full range of motion back and now that I've finished chemo it's only upward and onward from here.

Good luck with your decision....it sounds like you have a very positive attitude.

Hauntie · October 2011

Barbe - I had a modified radical MX almost 17 years ago along with radiation. The prophylactic MX was a "simple" (like any of them are simple), The area where my drains were is still sore - 8+ weeks later. I also still have a sensation of heaviness - like my breast is still there. And wearing a bra and prosthesis is still uncomfortable. I had a reduction on that side during an unsuccessful reconstruction attempt several years ago. My BS reopened that incision to do the MX, so the scar is lower then it would usually be and is right where the band of my bra sits. I only wear my bra and foobs to work. I actually take them off as soon as I get in the car - picture the scene from "Flashdance."

kmpod · October 2011

Hi All,

I just had my first post-surgical follow-up today. post PMx on October 7. I'm healing well, though cursing the drains.

Turns out that the "good" breast had several foci of ADH, Problems waiting to happen. My surgeon said that I'd done the right thing by pressing ahead with the second surgery.

I knew that anyway.

No reconstruction- Happy w/your decision?

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