What's the REAL DEAL w/Mastec & Expanders...?

[jessica]

Hi Everyone~
Just wondering if those of you who've had a mastectomy w/reconstruction using expanders & implants can share your experience & wisdom?
I have a f/u Breast MRI today & unless there's been a miraculous resolution of all the DCIS in there, I'm anticipating the "BIG" surgery before the end of the year. (I'm not beyond believing in miracles-I've been fortunate to be on the receiving end of many on this journey!)
I've been reading so many things about the surgery & conflicting info about the expanders - "not painful at all" to "very painful". Don't know who/what to believe?
I had a liver resection Dec'05 & endured that really well & healed w/o complications. The Liver remains beautifully CLEAN, but last Feb'06 we discovered a new 1cm invasive lesion in the L breast, which was removed w/an excisional biopsy, but left behind pervasive, high-grade DCIS.Since then, we've been "vigilantly watching" the DCIS, but ultimately, a mastectomy is my only option.
I'd prefer not to wait for that DCIS to turn "ugly" before pursuing the mastectomy.Since I'm all healed up from the liver, the DCIS is still stable and my deductible's met (Ugh! I hate to make a decision based on $$ & insurance, but it's just an unfortunate reality!), I'd just as well do it sooner than later. I don't want to have to make these decisions "under the gun".

I just want to know the "REAL STORY" from those who really know!

[tousled1]

Jessica,

I can't offer you any info on reconstruction with or without expanders. I can tell you that I had a bilateral mastectomy and thought I'd be in agonizing pain after the surgery. Surprisingly I had very little pain and things have healed up extremely well. I couldn't have reconstruction done at the same time as I already knew that I would have to have radiation.

[cherylynnie]

I had a tram flap reconstruction and I do know that the expander reconstruction is much less painful than the tram flap. When I look back I am not sure what I would do again. I just met a lady at chemo that had a bilateral mastectomey and got implants and she is very happy. She didn't need the tissue expander as she said that she had enough skin. I guess from a skin saving mastectomies.

I had reduction on teh other side in August and am very happy I am almost even now.

[KellyA]

Hi Jessica,

I did have immediate reconstruction after masectomy (Bi-lateral) using implants. We didn't know going in if they would be able to get the implants in or have to use expanders. It was a tight fit, but the implants went in (34B). It was painful, not horribly, but it was very tight, a little hard to take a deep breath and I got a bad backache from not being able to stand up straight for a few days- hehe- they pulled the skin up from around my ribs to make the fit. The tightness was dramatically better after 1 week and gone after 1 month. Also, this sounds crazy, but it felt like the implants were up around my chin they were so high. Never thought that I would say this, but I kept asking my doc when they were going to fall! Pretty funny, huh? They've settled in nicely now and its been about 5 months.

I do have to have radiation as sonn as I finish my chemo. I have two rounds left. There is a very high failure rate with implants and radiation. it's about 50% (That's what I have been quoted by my radiation dr. and also by my plastics guy). I didn't really have a choice- I didn't have enough skin for the flap procedure on both sides. My doc said he can fix that side if I have problems with contracture. He said that if I waited until after radiation, he might not be able to stretch the skin enough to get them in. Hopefully I'll be in the 50% that doesn't have a problem. We'll see.........

KellyA

[Esther]

The most painful part is when they fill the expanders with saline to stretch the skin. That was painful for a day or two.

With clothing the result is pleasing, and I even have cleavage in a bathing suit. Unclothed, of course, it's not the same. But it allows me to forget about it for the most part and just dress and live like i want to.

[Sheila]

I agree that the most painful part is the tissue expander being filled. There is always a chance of complications, I developed caapsular contracture around the implant, which makes it still hurt after 3 years. My friend just had hers rupture, after 1 year, saline, and can't get in to get it replaced (which is major surgery again) until December....kind of like driving around with a flat tire and no gas station! Everyone is different, just like everyone's pain tolerance...I developed mets during reconstuction so I don't know if I would chance it again. I refused to get a lift on the unaffected side, so now I am uneven...I guess I was just tired of having surgery. Never went back for nipple reconstruction either...again, just tired of it all. I do know if I ever get a whim to get the tatto...it won't be of a nipple....I have always thought of getting a tattoo of a smiley face, or a dream catcher....reminded me of my idea when I watched the show "Why I Wore Lipstick to my mastectomy last night."

[bobbiw]

Hi Jessica

I finished Taxol in May-went on Herceptin and in June had a prophylatic mastect of the right side (had mastect of left side in Oct 05) and expanders put in at that time. After the expander placement surgery (they filled to 100 and 150 ccs at time of surgery and my original mastectomy was a skin sparing surgery) I did experience pain. It felt like someone was sitting on my back and on my chest all at the same time. It was painful but not so much that I wouldnt do it again. I then began my weekly fills. They were able to put quite a bit in at each fill starting at 150 and 200 to even them. That fill was quite uncomfortable because that is a lot for the skin and muscle to take. When they fill to me it felt like I did ions ago when I breast fed my son.....felt like they were heavy with milk. After the fills it again felt like someone was sitting on my chest and my back at the same time although again this was tolerable. I am now done with the fills and have to wait 6 months for the exchange surgery.
Everyone is different in how they feel I think after the fills and some have a very little amount put in at a time which is fine too.
My expanders are tear shaped and were supposed to fill upwards. My left one tipped and it filled towards my back. I now have a nice rock hard boob right under my arm pit on that side! It is annoying but again tolerable.
When I was going through the expansion process I thought it was worse than the chemo. However, now that I am done with the process I just dont remember it being that bad and would do it again.
Good luck with your decision.
Bobbi

[Joannie]

I had a bilateral mastectomy with reconstruction immediately following. I had very little discomfort during the filling process. My plastic surgeon was very cautious about filling too quickly. We were in no hurry. The exchange process went very smoothly and I had very little pain during those surgeries. I am very pleased with the outcome and would do it again in a minute. Good luck to you.

[RobinP]

The filling of saline into the expanding implant is touch, and that was probably the most painful part of the whole process. The surgery itself hurt less. I've had my fake breast for about 3 1/2 years and it aches now and then like in cold weather, when I lift too much, drive too long, too much use of arm etc. But I did go very big to size b+ cup, perhaps that why I DO have discomfort post surgeries with activity. I also think that if you don't have a sentinel node dissection, that would make the whole area less irratated too post surgeries.

[John21]

My wife had a single masectomy and reconstruction the same day with expander. She was in a littlle pain the first couple days but surprisingly was not as bad as she thought. The doctor took his time on inflating the expander. She said is more of an uncomfortable feeling for a couple days and then it was ok. As her husband, I could care less on the result as long she is still here. The results were pretty good after watching the whole process.



Hope it helps