Remove or repair?

awnie1301

I had bilateral mastectomy and reconstruction right after I finished chemo and right before I started radiation. My radiated side looked great for about a year or so. Now my capsular contracture is so bad that I am in a fair bit of pain and struggle with movement of my arm. It is only the one side.

I will be seeing my PS early in the new year. She already has me signed up for a revision as she could see several months ago what direction this was heading in. Her wait list is 8-10 months so probably I will be in line for surgery sometime in the spring.

What should I do? I understand my risk of developing another contracture is very high. I just want to be comfortable again. Should I remove the one and be lopsided, remove them both or attempt another revision.

I would love any thoughts or advice on this one.

Thank you

songbird68

hi awnie, sorry you are going through this.

I didnt want to read and run so, my thoughts are has your surgeon suggested using your own tissue to create the breast mound on the radiated side? I don't think you get capsular contracture using that method. Someone correct that if I'm wrong!

I'm not suggesting from experience, only from what I have read on here. Just throwing another idea in there for you.

Take care x

Jenwith4kids

Annie, havetc you considered physical therapy to help with range of motion in your arm?

I'd try a revision, but I suppose it really boils down to how you feel about it yourself. it's a pretty personal decision.

I had radiation after BMX and before exchange surgery. my doctor used alloderm, that might help prevent capsular contraction.

I hope this helps !

awnie1301

Thank you for your replies. I have done quite a bit of physio, massage, lymph massage etc over the course of the years. I actually have much improved ROM but still very limited. I also had alloderm. I am very prone to nasty scarring so I suspect this is what has happened internally. I will keep researching and hopefully be able to go into my next appointment (Jan 4) confident with my decision

Jenwith4kids

happy to help! good luck !

marketingmama

Hi Awnie. I also developed CC on one side and am scheduled for another surgery to remove and replace (on December 8). I am about a year and a half out from my BMX. My right implant has been a problem from the start. Had an infection after first exchange and needed to start all over again with TE and replacement. After thinking I was finally done, developed CC on that same side. Seems there is not much clarity on exactly what causes CC or the precise risk of getting it again---but I'm pretty sure it's higher than most women with implants. In my case, my gut says there is a link to the infection I had originally but that's just a guess. Regardless, I'm rolling the dice on trying again with a new implant because it's not a a really big procedure and I figure I'll be back to work in about 7-10 days. If I do go on to get it again, I'll have to think seriously about either going flat or doing a flap procedure. The latter worries me because of the long recovery and complexity of flap surgery. Plus, I've already been through so many procedures, time out of work, pain, etc.

I really understand what you're going through-- I have significant tightness, pain etc. I also had PT and lymphatic drainage massage prior to all of this and I don't think there was any direct correlation in terms of the PT helping or hurting the CC.

Oh, almost forgot, did your PS suggest you try Singulair? Mine did as there are studies that show this helps CC. It didn't for me but he will probably try me on it immediately post-surgery this time around to try and prevent it.

ABeautifulSunset

hi ladies. I also developed cc on my radiated side,about a year after the original reconstruction. I am also prone to scarring. My PS advised me that he could redo it but there was a good likelihood it would happen again. Instead I opted for fat transfer (different from diep). That involved four, yes four, more tough surgeries. In the end I didn't have enough fat so he had to leave a small TE in the radiated breast, which of course got encapsulated again. I need a fifth surgery just to get that damn thing out...I dont even care if it's flat anymore, BUT i am a stage 4 sister and at the moment my ONC thinks it's unwise to have more surgeries. Surgery is hard on the body and the anesthesia inflammation can be hospitable to cancer growth. A lot of doctors won't tell you that because the evidence for that is experiential and not scientifically proven. Hope I'm not being too negative. IF I got the go ahead, I would still have that fifth surgery, so I'm not saying don't do it. Just giving you my experience to add to your bank of knowledge

Btw, I also used Singulair..... did nothing.

marketingmama

Stef, thank you so much for your perspective. And I am so very sorry for all you've had to face. Does your doc think the radiation is the cause of the CC and do you know how likely it would be for it to happen again? I have plenty of fat to do that sort of transfer but can it really make a full breast? I guess I just thought fat transfer was for minor things like rippling or divots.

I personally totally understand wanting to give up on surgery. I wonder if I'm being too stubborn and should just give up. I guess I'll cross that bridge after this next procedure.

I never in a million years expected reconstruction to be as complicated as it's been.

ABeautifulSunset

hi marketing mama, I grew upon King of Prussia and later in the Northeast.

The fat transfer I talk about is not done by a lot of doctors. I actually flew to Florida (Dr Khouri) but I hear there are good docs that do this in NY, I believe. It's a very special technique and yes, my right breast is pretty full... a B I would say. And soft and warm... made from my own body fat. If you have a lot of extra fat on your bod, you might even make a C. My left was the radiated one and it did not behave itself. Radiation is the gift that keeps on giving.

KBeee

I have CC in radiated breast and my PS said he would not touch it with a 10 foot pole. Sigh. Usually he recommends DIEP flap, but I am not a candidate for that because I am too thin. My only option is for a lat flap, but based on my reading here, I would not go for that for several years, when I no longer work in my current job (which requires strength and good range of motion). For now, I feel stuck, but since my radiated side is about 1-1.5 inches higher, I've found a sports bra helps lift my other foob, so they're not so obviously at different heights.

Hoping you get answers. Maybe a DIEP flap would work for you, but that's a big surgery with a long recovery.

marketingmama

Stef, yes, I'm not too far from KOP. DD loves to shop at KOP Mall! I saw my PS today and he's cautiously optimistic about CC not coming back. He said you could run an entire conference on the etiology of it but for sure radiation makes it more of a problem. I did not have rads so I'm lucky on that count. I'm crossing my fingers that next week's surgery will solve the CC problem. Trying to stay positive and not get ahead of myself.

KBeee, so sorry your PS won't try a new implant. If you're confident that he's right and don't think a second opinion is warranted than perhaps waiting a bit to do a flap won't be too awful. Curious, why not at least remove the capsule/implant so you're more comfortable? Wouldn't that be easier than living with CC?

I'm not a DIEP candidate because I had a tummy tuck years before my initial diagnosis. Although I love my new tummy, I find it so ironic that I paid for this surgery only a year before having a BMX. All that extra baby flab could have turned into new foobs!

KBeee

My PS does not think my skin will heal. I know the implant will need to eventually be replaced though, so I may eventually get a second opinion. I am tired of surgeries though, so I'll wait a bit on it. I do know a gal who had a GAP flap (or something like that) where they take the fat and vessels from your buttuck region. It is not as common, but she's thrilled. I actually know 2 people who had it done; both in Texas.

ABeautifulSunset

mmama- the fact that you weren't radiated makes your odds of success much higher. I wish you lots of luck on the 8th. Keep us posted.