Skin Sparing Mastectomy w/ No Reconstruction?

BonoboGirrl

I'm not sure exactly where to post this, but I wondered if anybody knew about any aesthetic repercussions to having a skin sparing mastectomy without reconstruction, meaning what are the implications of future extra skin removal?

I had a bilateral mastectomy on December 11th, had opted NOT to do reconstruction, a decision I had informed my surgeon and the hospital of a couple weeks before my mastectomy, a decision I confirmed with my general surgeon just prior to going into surgery, and the nurses, etc. Yet, in spite of my clearly communicated decision, the day following the surgery, when my surgeon came in to see me, he explained that he performed a skin-sparing mastectomy, left some skin, just in case I changed my mind about reconstruction!!!!! At first I just nodded. I didn't want to seem ungrateful; I was thankful to be alive and was focused on healing. I had no idea, really, what the aesthetic implications were. 

It's now been over a month. I hate the puckering, the rolls of quilted skin. I look horrible in everything--I'm very petite and nothing fits right because the puckers and rolls show through all my tanks. I layer, and still the rolls of quilted, puckering skin show through two tanks and a long-sleeve shirt!! I've never been one to dress in loose or frumpy clothing. I want to be able to wear a shirt with confidence, and I want to be confident with my naked body as well (it's disruptive to open intimacy with my partner). I've never been the kind of woman who needs the lights off, until now. I felt comfortable with my decision not to reconstruct, very comfortable and confident. As petite as I am, I never felt that I really needed breasts. What I hoped for and what I wanted, given that I was having a bilateral simple mastectomy, was a nice flat chest with two scars. That's what I had expected, and that's what I had felt I could do and still feel beautiful.

I am still not interested in doing reconstruction, not even in the least. I'm angry that the surgeon made a unilateral decision while I was under anesthesia. At my last post-op appointment he looked disappointed when I explained that I was still NOT planning on doing reconstruction and would like the extra skin removed as soon as possible. He said that I would have to wait six months, after everything had healed completely, but I'm worried that after that much contraction of skin (puckering and scarring) the end result--my preferred end result being, as mentioned, the typical flat chest/scarring left from a standard simple mastectomy--has already been compromised and will not be possible.

Has anyone else gone through this? I just want a normal flat, post simple mastectomy chest. I didn't want reconstruction or any sparing of skin "just in case." Was that too much to ask? Is it even possible to have that chest now? Does anyone know whether I should be able to have this extra skin removed sooner than six months? I've healed very well, and I can't imagine it being a problem and I fear waiting too long will affect the aesthetic outcome. 

  

spar2

It won't effect the outcome but if you don't want dog ears, the points under our arms I suggest you have the extra skin removed by a plastic surgeon so he can take care of the dog ears, regular surgeons don't do that.  I had a skin sparing mast. but found another grown and went back and did a regular mast.  Then had those ugly dog ears.  This was in 2004 and in 2007 I decided to have implants put in and have been so happy with the results so you don't have to have skin sparing to have reconstruction.  Let us know how things go with you.  sending you hugs and well wishes.

otter

No, AnneMarie, it was not too much to ask.

It really, really p*sses me off when our doctors decide they know better than we do, what we will want.... especially when those decisions concern our personal appearance, and when those doctors are male.  REALLY p*sses me off.  If I were you, I'd go back to your surgeon, remind him that you'd made your preferences precise and unequivocal prior to the surgery, and insist on a referral to a plastic surgeon to make things right.

Sheesh.

I'd read about that sort of thing happening, so I tried to make it crystal-clear to my breast surgeon (surgical onco) that I was not planning to have recon.  I said I was fine with being flat-chested and wearing a prosthesis.  She kept assuring me that was fine; I could always change my mind later and have delayed recon. 

Right up to the day of my surgery I sensed that she had treated women who'd regretted making a hasty decision; and I worried that she might leave me with some "unwanted options." So, as she and I had our last-minute discussion in the pre-op cubicle, I said I'd like her to leave me with a flat, smooth scar -- no extra tissue left behind, "just in case."  She smiled and said, "Okay, so, no 'dog ears'."  I nodded.  When the bandage was removed the morning after my surgery, I was happy to see a perfectly flat, smooth scar, just as I had requested.  I think maybe if I hadn't made that last request, I'd have had flaps, too.

As spar said, you can have that extra skin removed.  I don't know if you need to wait 6 months. Are you having chemo?  That would delay any subsequent surgery. Otherwise, I think you should insist on a consult with a PS to find out what's involved with a deconstruction of your surgeon's handiwork.

What an insulting, patronizing, paternalistic thing for a doctor to do!

Hugs...

otter 

Erica3681

Hi AnneMarie,

I agree with everything otter said. I also had a bilateral and knew I didn't want reconstruction. I emailed my surgeon beforehand that I wanted the "best cosmetic result possible," with no extra skin and symmetrical scars. Like otter, I reiterated my request just before the actual surgery. I previously had lumpectomies on both sides, with scars at different angles, but the surgeon showed great skill in leaving me with symmetrical scars. 

You sound as if you're a lot like me--I felt I would be depressed if the surgical site wasn't as neat as possible. The good news is that you absolutely can have this fixed, and it would be a minor revision procedure, probably outpatient. I don't think there's any reason you couldn't have a successful revision after six months, but I also don't understand at all why your surgeon says you have to wait, unless you're having chemo. Like otter, I would suggest you have a plastic surgeon do the procedure--they're trained to make things look good. If you don't want to do this through a referral from the breast surgeon, perhaps you could ask your oncologist or primary care physician. And it should be covered by insurance. After all, reconstruction is covered!

Good luck. Please let us know what happens. 

Barbara

BreastFree.org

lisa-e

I would be furious with your breast surgeon. I feel like performing a skin sparing mastectomy, even though you had specifically told him you didn't want to have extra tissue is worthy of a complaint to the medical boards, hospital and your insurance company! And if you have scar revision, I would find a different surgeon.



When I had my mast my breast surgeon asked a plastic surgeon to help plan the incisions. I was quite busty and there was a lot of skin to get rid of if I was going not going to have dog ears. The plastic surgeon also had breast cancer and had implant reconstruction. She was very strongly in favor of reconstruction, so much so that I told my surgeon I had was concerned that I would wake up and find out that she had stuck in temporary expanders. If she didn't do that, I worried that she would leave extra skin. I told both surgeons that I wanted to wind up with my pre-adolescent chest and expressed my concerns about the plastic surgeon to my breast surgeon. He told me he would watch the plastic surgeon like a hawk, so I was reassured.

franie

I am so sorry that your desires weren't achieved. There is no excuse for that in my opinion. I too had a bilat and requested to have all skin removed and to be perfectly flat. I was large busted and my results are as I wanted, very flat and smooth. I don't go flat, but chose to wear prosthesis. I have no regrets and am very happy. I hope you get the results you want as it is your body and your image. Good luck!!

NativeMainer

Please, contact the patient representative or ombudsman's office at the hospital where you had your surgery.  What happened is malpractice--you did not consent to that kind of surgery and the surgeon/hospital need to correct the situation AT NO COST TO YOU OR YOUR INSURANCE,  Also contact your insurance company--they can pressure the doc and hospital by demanding to be repaid  due to deceptive practices.  Don't let the surgeon or the hospital get more money for a second surgery.  You also may be entitled to damages--talk to a malpractice lawyer.  Get copies of your records, especially the consent forms, that will prove that what you consented to and what was done were different. 

BonoboGirrl

Thanks, everyone. I didn't realize that I should have done more than simply notify my docs and the hospital of my decision not to reconstruct; i.e., that I should have emphasized that not only did I NOT want reconstruction but that I also wanted to be left with two smooth scars and a flat chest. I assumed a smooth chest with two even scars was the standard outcome of a simple mastectomy w/o recon, and that skin sparing was only done if there was to be immediate or delayed-immediate reconstruction. 

Native Mainer, I'll definitely be getting a hold of the consent form and will contact a rep at the hospital. However, I know I'm not up for a malpractice lawsuit--too long, too tedious. If they can make it right, I'll be happy. 

 Also, what are dog ears? I was left with what looks like quilted, puckered flesh, including one small puckered roll just below the incision on the right and a smaller version of the same on my left. They're so puckered, and the incisions so tight and close to the chest, that I was concerned a nice, flat chest, with fairly even, smooth scars just wouldn't be possible now. The skin, in some places, really feels immovable, like it's adhered to the the chest wall. 

The reason given to me by my surgeon for waiting six months on a fix was that he wanted the mastectomy to heal completely, adding, "And you never know, by then, you may be fine with how it looks." I think he's hoping I'll let it go.

Turns out I may need chemo, but he wasn't aware of that, nor ever mentioned it at any of my post-op visits. I'm waiting for the oncotype and HER2 test results. Get those on the 17th of Feb, when I go back to the oncologist.

Thanks again, everyone!! I'll let you know what I find out re. the fixing the spared skin.

 Sincerely,

Anne Marie 

BonoboGirrl

P.S.: Barbara, I stopped by BreastFree.org a few weeks ago, before joining the breastcancer.org forum. Also visited your blog!!! What a pleasure to meet you and what great work you're doing. It helped me immensely!

puddingirl84

AnneMarie_1970- OMG!! I would be pissed off. I hate to hear stories like this. Your BS did not value your decision about your body. That's disrespectful.

My BS specifically said to me, if there isn't going to be immediate recon, then there is no skin-sparring mastectomy. He doesn't do it any other way. I was relieved because I didn't want any of the diseased skin left behind to worry about or that puckering I have seen in photos. Like gathers around a waistline when sewing.

A lot of men, even doctors get angry at the thought of a woman being so secure in her femininity that she is OK without having breasts. THEY want to see you with breasts. That is the kind of sexist society we live in. I had a double on Jan. 25, 2010, no recon, and my chest is as smooth as a baby's butt. I was a C+ cup, but I still feel like a whole woman. Can't wait till I can wear really nice lingerie again. (After Feb.25 I'm told)

I am not against recon for those who get it, but I don't know what the rush is all about. The BS steers it usually to a  PS that he knows and it is a very profitable business, because they count on women panicking and not wanting to wake up without breasts.

Now don't all of you with foobs yell at me all at once!

I'm still recovering. Go easy on me. 

Leah_S

From what I understand, "skin-sparing" is only helpful for a certain amount of time after the original surgery - after that, the skin can adhere to the muscle due to scarring. Not sure, just something I heard.

My BS did not do skin-sparing for my single mast (Nov 09). I told him that at that point I didn't want recon, didn't know if I ever would. He said there would be no problem with recon at any time in the future if I wanted it.

So how am I now? If I were staying with the single mast I would be OK, but my onc wants me to have a prophy mast on the other side (very strong fam history) so I'm going to do bilateral DIEP. I feel OK with one, like it's weird but a "new normal" but the thought of NOTHING is far too painful for me.

AnneMarie, I'm sorry your BS was so dismissive of your wants. Make a fuss at the administrative level at the hospital. They don't have to know you're not interested in suing - but they will make sure that  Dr. Jerk hears about it LOUD AND CLEAR. And make sure they take care of it AT NO COST TO YOU. As far as when, ask your onc, and if he says you can do it sooner then go for it. I think you're right about the real reason the BS wants you to wait 6 months, he thinks you'll forget about it.

Best of luck.

Leah

GryffinSong

I'm in a similar situation, although my surgeon didn't do skin sparing. But I am terribly lumpy and hate the result. I, too, just wanted a flat, smooth chest. I expressed concerns to her several times before surgery, and both she and her nurse assured me of a good result. I can't believe how terrible I look. I'm hoping for a revision, and was certainly not going to go back to her. I've since moved across the country, so will be consulting a plastic surgeon here. I know that we're entitled to recon, so assume a revision is also an entitlement, but I don't know what kind of deductible I'll be looking at. I'm fairly furious that I'll probably have to pay thousands for a revision of what shouldn't be in the first place.

Good luck to you in getting a good, smooth result!!!

BonoboGirrl

Hey, everyone. Sorry for the delay. Thank you for your wonderful support and suggestions! Looks like I won't be doing much about the extra skin left behind for some time. I start chemo on March 5th. Just found out last week that I'm HER2+, confirmed by my oncotype DX and another independent test, and, according to my oncotype dx, I'm not ER+, like my core biopsy and mastectomy path reports indicated. 

So, guess I'll go scoot myself over to the HER2+ board now. It's been a crazy ride going from a diagnosis of ER+ DCIS to Invasive Ductile Carcinoma, Stage II, HER+. Hope the surprises are over with, not sure I can take anymore. 

 Again, thanks everyone. 

 Warm blessings!