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Topic: Help...capsular contracture :(

Forum: Breast Reconstruction — Is it right for you? Discuss timing and various procedures and techniques.

Posted on: May 15, 2019 12:39PM

Nlennc wrote:

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.




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May 15, 2019 12:46PM Moderators wrote:

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


To send a Private Message to the Mods: community.breastcancer.org/mem...
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May 15, 2019 01:38PM VegGal wrote:

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

Dx 1/12/2016, DCIS, Left, <1cm, Stage 0, Grade 2, 0/3 nodes, ER+/PR-, HER2- Surgery 3/11/2016 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 6/10/2016 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 9/8/2017 Reconstruction (left): Fat grafting, Silicone implant; Reconstruction (right): Fat grafting, Silicone implant
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May 16, 2019 03:34PM Nlennc wrote:

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?

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May 16, 2019 03:36PM Nlennc wrote:

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

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May 17, 2019 07:55PM VegGal wrote:

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!

Dx 1/12/2016, DCIS, Left, <1cm, Stage 0, Grade 2, 0/3 nodes, ER+/PR-, HER2- Surgery 3/11/2016 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 6/10/2016 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 9/8/2017 Reconstruction (left): Fat grafting, Silicone implant; Reconstruction (right): Fat grafting, Silicone implant
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May 19, 2019 04:11AM - edited May 19, 2019 04:11AM by 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!

Dx 3/26/2017, IDC, Left, 2cm, Stage IIA, Grade 3, ER+/PR+, HER2- Surgery 5/10/2017 Mastectomy: Left, Right; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 7/21/2017 AC + T (Taxol) Surgery 1/25/2018 Prophylactic ovary removal Hormonal Therapy 2/17/2018 Arimidex (anastrozole) Surgery 4/9/2018 Reconstruction (right): Latissimus dorsi flap, Silicone implant Surgery 9/27/2018 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 4/3/2019 Reconstruction (left): Nipple reconstruction, Silicone implant; Reconstruction (right): Nipple reconstruction, Silicone implant
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May 19, 2019 06:37AM VegGal wrote:

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. 


Dx 1/12/2016, DCIS, Left, <1cm, Stage 0, Grade 2, 0/3 nodes, ER+/PR-, HER2- Surgery 3/11/2016 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 6/10/2016 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 9/8/2017 Reconstruction (left): Fat grafting, Silicone implant; Reconstruction (right): Fat grafting, Silicone implant
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May 19, 2019 04:48PM CBK wrote:

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!

Dx 3/26/2017, IDC, Left, 2cm, Stage IIA, Grade 3, ER+/PR+, HER2- Surgery 5/10/2017 Mastectomy: Left, Right; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 7/21/2017 AC + T (Taxol) Surgery 1/25/2018 Prophylactic ovary removal Hormonal Therapy 2/17/2018 Arimidex (anastrozole) Surgery 4/9/2018 Reconstruction (right): Latissimus dorsi flap, Silicone implant Surgery 9/27/2018 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 4/3/2019 Reconstruction (left): Nipple reconstruction, Silicone implant; Reconstruction (right): Nipple reconstruction, Silicone implant
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May 19, 2019 05:14PM VegGal wrote:

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).  


Dx 1/12/2016, DCIS, Left, <1cm, Stage 0, Grade 2, 0/3 nodes, ER+/PR-, HER2- Surgery 3/11/2016 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 6/10/2016 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 9/8/2017 Reconstruction (left): Fat grafting, Silicone implant; Reconstruction (right): Fat grafting, Silicone implant
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May 20, 2019 05:48AM CBK wrote:

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?

Dx 3/26/2017, IDC, Left, 2cm, Stage IIA, Grade 3, ER+/PR+, HER2- Surgery 5/10/2017 Mastectomy: Left, Right; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 7/21/2017 AC + T (Taxol) Surgery 1/25/2018 Prophylactic ovary removal Hormonal Therapy 2/17/2018 Arimidex (anastrozole) Surgery 4/9/2018 Reconstruction (right): Latissimus dorsi flap, Silicone implant Surgery 9/27/2018 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 4/3/2019 Reconstruction (left): Nipple reconstruction, Silicone implant; Reconstruction (right): Nipple reconstruction, Silicone implant
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May 20, 2019 12:33PM hapa wrote:

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

Dx 12/14/2017, IDC, Right, 3cm, Stage IIIA, Grade 3, ER+/PR+, HER2- (FISH) Hormonal Therapy 1/2/2018 Zoladex (goserelin) Hormonal Therapy 1/2/2018 Arimidex (anastrozole) Targeted Therapy 2/14/2018 Ibrance (palbociclib) Dx 3/20/2018, IDC, Right, 3cm, Stage IIIA, 3/18 nodes, ER+/PR+, HER2+ (FISH) Targeted Therapy 3/28/2018 Perjeta (pertuzumab) Targeted Therapy 3/28/2018 Herceptin (trastuzumab) Chemotherapy 3/28/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 8/22/2018 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Radiation Therapy 10/22/2018 Whole-breast: Lymph nodes, Chest wall
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May 20, 2019 02:52PM VegGal wrote:

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. 

Dx 1/12/2016, DCIS, Left, <1cm, Stage 0, Grade 2, 0/3 nodes, ER+/PR-, HER2- Surgery 3/11/2016 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 6/10/2016 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 9/8/2017 Reconstruction (left): Fat grafting, Silicone implant; Reconstruction (right): Fat grafting, Silicone implant
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May 23, 2019 04:07AM - edited May 23, 2019 04:18AM by 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!

Dx 3/26/2017, IDC, Left, 2cm, Stage IIA, Grade 3, ER+/PR+, HER2- Surgery 5/10/2017 Mastectomy: Left, Right; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 7/21/2017 AC + T (Taxol) Surgery 1/25/2018 Prophylactic ovary removal Hormonal Therapy 2/17/2018 Arimidex (anastrozole) Surgery 4/9/2018 Reconstruction (right): Latissimus dorsi flap, Silicone implant Surgery 9/27/2018 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 4/3/2019 Reconstruction (left): Nipple reconstruction, Silicone implant; Reconstruction (right): Nipple reconstruction, Silicone implant

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