Help...capsular contracture :(

Nlennc

I had a bilateral mastectomy with immediate reconstruction with expanders a year ago, followed by smooth saline implants in Sept. Alloderm was used and the implants were placed above the muscle.

I started exercising in February and about 3 weeks ago, I noticed that my left implant felt tighter. I thought it might be related to exercising and when I brought it up with the PS at an appointment last week, I was shocked and disappointed that it was grade 2 capsular contracture. I’ve had my implants for 8 months now. I scar terribly so the thought of having a capsulectomy and restarting again with a new capsule and implant doesn’t sound. I’m afraid the contracture would recur

He prescribed a 3 month trial of Accolate(an asthma drug), and I started it 6 days ago but have noticed worsening shortness of breath and overall body muscle weakness and tingling. Has anyone else experienced this?

I contacted the PS and he said to stop taking it. I don’t know what other avenues I have still this point. I’m open to trying Singulair but he thinks that the same thing may happen because it’s the same mechanism of action as Accolate.

Anyone try Vitamin E, ultrasound, Singulair, or anything else with good results?

I really wish there was something I could do because the thought of doing nothing and it potentially getting worse is driving me nuts.

Moderators

Hi Nlennc, and welcome to Breastcancer.org,

We're so sorry to hear you're experiencing this complication, but we're really glad you've found us. You're sure to find our community a very helpful space with lots of others always willing to offer advice and support.

While you wait for some responses, you may want to check out the main Breastcancer.org site's page on Capsular Contracture, which offers some other options, including autologous reconstruction as an alternative.

We hope this helps, and that you get some answers soon!

--The Mods

VegGal

Vitamin E helped me. I was shocked, but I was able to avoid surgery. 

Nlennc

That’s fantastic news-so glad to hear Vit E worked for you! How many capsules did you take a day, and how long did you take it before you saw results? Are you still taking it?

Nlennc

Thank you - oh how I wish I qualified for a flap!

VegGal

I took 4 a day for a month or so and then decreased to 2 and now maintain on 1. It only took a couple of weeks to note a difference. 

Good luck!

CBK

VegGal

I find this fascinating. I had capsular contracture from a hematoma that formed on one side.

I corrected with surgery but still a little tighter than other side!

How does vitamin E work to accomplish this and what is the dosing?

Thanks and best of luck to both of you!

VegGal

I'm not sure how it works. My PS had scheduled me for surgery and mentioned Vit E and Singulair as possible treatments for after surgery. I decided to stop by Costco on the way home and bought a giant bottle of their Vit E. Began taking 4 caps per day and within a few weeks it was better. My PS was happily surprised as well. 

CBK

So you take a maintenance dosage now?

Did PS say to do that or are you doing on your own. Vitamin E isn’t water soluble so I suppose you could supplement too much, which why I ask what mg. are your tablets?

Thanks for sharing. I think this is amazing!

VegGal

The capsules are 400 iu each. My PS said I could take 1500-2000 iu's for a month or two and then reduce. Now I just take 1 capsule per day, which is the recommended dosage for daily use. 

In my experience, the RDA's on most vitamins are very conservative, and it would be difficult, though not impossible, to overuse the fat soluble vitamins (A, D, and E).  

CBK

Thanks ... I have them here already. I use them in a castor oil concoction I slather on my head to grow back my hair!

I’m going to ask my surgeon next month why she didn’t suggest to me? I had a hematoma that caused the contracture but thank goodness I had many other revisions so I didn’t go under the knife just for that!!

Curious did your fat grafting “hold on” well? Or did you lose a lot of the volume?

hapa

VegGal - I'm having capsular contracture as well and I'm going to get some vitamin E. Thanks for the suggestion!

VegGal

My fat grafting did hold well!  In fact, I have gained about 15 pounds in the last 18 months, and I even have a little blob on the side of one boob where the fat has "grown" along with my body. Hope to dump about 10 of those pounds. I had foot surgery in January and haven't been very active. 

CBK

Veg Girl-Wow that's great it held, most people I know complain it just fades away!

I'm with you on dumping ten... no matter how much I exercise, eating vegan now, I can't drop weight from surgical menopause.If you have a supplement for that ... please drop me a line! Ha!

Best to you on recovery and getting back to normal activity!

Nlennc

Hi Ladies,

Just wanted to update you on my progress. I've continued taking Accolate for almost a month now. I've also been taking 3-4 (400 IU) Vitamin E capsules, moving my implant around in the pocket, and I've also had two PT sessions so far by a physical therapist who works with breast cancer patients. I have seen a lot of improvement!

I don't know if it's due to everything together that I'm trying, but I will say that I have noticed a big difference after just two sessions with a physical therapist. I was thinking that I needed to move the implant around within the capsule to loosen the scar tissue, but I learned from her that it's not about moving the implant around in a circular motion; it's about pulling/tugging and holding it for at least 20-30 seconds in each direction - up, down, left, and right. She has been stretching the tissue and told me about stretching exercises to do while laying on my back on a foam roller.

When I was first diagnosed with capsular contracture, I really feared that it would harden the implant to the point of being mis-shapened and that I might have to remove the implant altogether. I really junped to the bad scenarios because I didn't see a lot of info about definitive cures. I'm so encouraged by the progress. The PT said we should only need maybe 5 sessions total. Just wanted to share this with others in case some of these strategies might be helpful to you. Thanks for all the feedback so far!

VegGal

Thanks for the input. My PS called it "walking the block." Move implant in a linear motion outward/inward/down/up and hold at the endpoints. Sounds like what your PT is doing. 

Hope you continue to improve!