Now that my exchange surgery is over and I actually have the implants, I am getting worried about capsular contracture (always something to worry about, right??), especially on the radiated side, which always did tend to be harder.
I'm wondering whether any of you did things to try to prevent it, whether anybody did get it, what happened then--could they fix it? I'm trying to massage my foobs in hopes this will help, but I've also heard there are drugs some people take to keep it from happening. My PS didn't mention anything about that. Thanks--
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EGAL Joined: Apr 2007 Posts: 458 |
Jun 23, 2009 08:48 pm
EGAL wrote:
I am having problems with my implant on the radiated (cancer) side. I am not too sure what the symptoms of capsular contracture are, can you help answer that? Ellen EGAL 10/06 dx'd with IDC Stage 3, 10/08 brain mets
Dx 10/19/2006, IDC, 6cm+, Stage IV, Grade 3, 15/17 nodes, mets, ER-/PR-, HER2+ |
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Northstar Joined: Aug 2008 Posts: 86 |
Jun 23, 2009 09:23 pm
Northstar wrote:
From what I understand, the breast area becomes increasingly hard and painful as the contractures surround and squeeze the implant more and more. The implant is placed in a pocket created by the PS, and then fibrous tissue forms naturally around it. I think that the only time it gets to be a problem is when the fibrous tissue contracts so much that the whole area becomes hard and ball-shaped. Anyone else have any personal experience they can share on this? DX 8/15/08, ILC, 5.1 cm, Stage IIb, Grade 1, 0/2 nodes, ER+/PR+, HER2-, Oncotype DX 11.
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Deirdre1 Joined: Sep 2008 Posts: 907 |
Jun 23, 2009 10:13 pm
Deirdre1 wrote:
First (and I am at the 1 st stage) it gets tight and a bit sore, nothing you can't tolerate.. and it seems to change its navigational position (mine is starting to point up).. I didn't have radiation but I had an infection in the graft site which occurred at the same time as the exchange.. But honestly I am new at the contracture thing... |
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maryannecb Joined: Nov 2005 Posts: 2,575 |
Jun 23, 2009 10:31 pm
maryannecb wrote:
I had grade 2 contracture with my saline implant. it was firm but not painful. After the exchange to silicone...I massaged daily...and this one is good. I hope you get along well. Fists up!
Dx 9/20/2005, IDC, 6cm+, Stage IIIa, Grade 2, 2/14 nodes, ER-/PR-, HER2+ |
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Warrior517 Joined: Jun 2009 Posts: 169 |
Jun 30, 2009 07:05 pm
Warrior517 wrote:
I , sadly, had capsular contracture on my radiated side. I had my "final" silicone implants placed in March. The radiated breast did not heal all the way. I had a small scab the size of my pinkie still on the scar line. Then,one Sunday afternoon.....I got a 101 fever and felt horrible. Fell asleep for a bit and woke up w/pain in my rt breast (still not realizing what was happening..just assumed I had the flu and my breast hurt due to scar tissue) For that whole evening, I had a fever and my breast hurt so bad that I decided to take my bra off. It was at this time I realized how swollen, red and the bra had puss in it. I had to have the implant removed right away. So, now I realize that everything happens for a reason. I am now going to NOLA (New Orleans) to have Dr. Marga Massey and DellaCroce do a stacked DIEP (no muscles CUT) I am having BOTH done..no more implants..instead I will have soft squishy boobs that get bigger if I gain weight and get smaller if I do....for me, this is a blessing in disguise. I didn't see it three weeks ago, but as always...a silver lining has presented itself!!! Dx 1/11/2008, IDC, 1cm, Stage IIa, Grade 3, 2/6 nodes, ER+/PR-, HER2+ |
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Tina337 Joined: Apr 2008 Posts: 186 |
Jun 30, 2009 09:41 pm
Tina337 wrote:
Well, I think I have CC, but my plastic surgeon hasn't said as such. However, he did prescribe Accolate, which I have taken for two months. It has done nothing and the problem is continuing to worsen. Implant looks slightly distorted and dislocated. Cleavage area feels more pressure and the implant is firmer. Looks more egg shaped and cleavage becoming uneven as a result. Next appt. with PS is end of July and I'm to continue medication until then. I'm considering a 2nd opinion in the meantime. While I'm not happy with the change in appearance, the main issue is pain. I can't go on indefinitely like this. |
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AnneW Joined: Oct 2002 Posts: 2,981 |
Jun 30, 2009 10:25 pm
AnneW wrote:
How is Accolate supposed to help CC? I missed that memo. Anne 2002 IDC stage 1, grade 1, rads & AI
Dx 9/18/2007, ILC, <1cm, Stage I, Grade 1, 0/1 nodes, ER+/PR+, HER2- |
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Deirdre1 Joined: Sep 2008 Posts: 907 |
Jul 1, 2009 12:35 am
Deirdre1 wrote:
Anne: It's a new "theory" and my ps brought it up on my last visit.. Some how the ashma meds (they have prednisones and cortisones steriods etc in them) can help "break" the capsule and therefore relieve the contracture.. It's too new a theory to have much backing yet... but it is getting out there!!! |
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EGAL Joined: Apr 2007 Posts: 458 |
Jul 2, 2009 09:55 pm
EGAL wrote:
Tina, Are you stopping the Accolate? No sense in taking something that is not working~ Ellen EGAL 10/06 dx'd with IDC Stage 3, 10/08 brain mets
Dx 10/19/2006, IDC, 6cm+, Stage IV, Grade 3, 15/17 nodes, mets, ER-/PR-, HER2+ |
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Tina337 Joined: Apr 2008 Posts: 186 |
Jul 2, 2009 10:51 pm
Tina337 wrote:
Oh, please don't get me going on this . . . When I started med I scheduled 3 month follow-up appt. as indicated by PS and was told to call back after 1st month and report whether I noticed change. I did so and was told to take another month. Just called the day before yesterday to report no change again after month 2 and was told PS wants me to continue another 6 mths. What!!?? Oh, and even with my insurance, it still costs $144.80 for a 45 day supply. I raised a fuss and nurse said I could keep July appt. I am definitely getting 2nd and 3rd ops on this. I don't feel my condition is being taken seriously. I'm in pain and it's not getting better. The thing is, I know this PS performed a capsulectomy on my friend who had CC, and she had her exchange surgery a week after me. So, all the BS the dr's nurse is feeding me about the dr. not doing surgery this early isn't flying. I am so frustrated and angry. One thing, if the nurse (since the dr. won't get on the phone) would at least explain 1) why the med is being prescribed (he hasn't actually said I have CC, so why is he giving me this drug and say it may provide relief), 2) how does this drug work with CC -- can you tell right away whether it's going to work (sort of what he implied in the beginning when he prescribed); and 3) If it works as a drug taken long term and helps "break" the capsule, is that why he's suggesting continuing for another 6 mths? I ask you, why can't I just get the facts? I am a calm, rational, and intelligent woman who cares about her body and wants to know. However, I am growing weary and getting irritable. |
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Hope_M Joined: Dec 2003 Posts: 1,004 |
Jul 3, 2009 12:08 am
Hope_M wrote:
I experienced capsular contracture due to radiation fibrosis of the pectoral muscle. (How's that for a lot of syllables!) My case may be a bit different, but I could feel the tightening of the pectoral muscle. It would tighten up and then stay that way, then tighten some more and stay that way. It never released or felt better. My implant was immovable on the chest wall. It dented in along the bottom half. The actual mastectomy scar began to look gray. It was the skin becoming so thin that you could see the implant beneath it. I was at risk of extrusion. (Situation was solved by going to New Orleans and having the implant removed and replaced with a DIEP reconstruction.) I received physical therapy which included massage and ultrasound, but neither were effective in my case. Radiation fibrosis is "rare, but immediate and relentless", to quote my oncologist. Good luck, Hope M. |
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rubytuesday
Joined: May 2006 Posts: 2,770 |
Jul 3, 2009 10:32 am, edited Jul 3, 2009 10:34 AM
by rubytuesday
rubytuesday wrote:
Accolate is not a steroid, it blocks leucotrienes (sp?) and provides an anti-inflammatory response. I use singulair for asthma (which is similar to accolate) and my PS said that it may help to prevent CC. Vitamin E is also touted as helping with CC. I would do the compression exercises (of course, check with your PS) and see if the combination helps. Best wishes BTW, singulair is to be taken on an empty stomach before bed. I think it's effect is reduced by food so that may also be the case for accolate????? Proud member of the TaTa Sisterhood! :)
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EGAL Joined: Apr 2007 Posts: 458 |
Jul 3, 2009 10:39 pm
EGAL wrote:
Tina, How frustrating for you! Good luck with 2nd opinion~ Ellen EGAL 10/06 dx'd with IDC Stage 3, 10/08 brain mets
Dx 10/19/2006, IDC, 6cm+, Stage IV, Grade 3, 15/17 nodes, mets, ER-/PR-, HER2+ |
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maggie1244 Joined: Aug 2009 Posts: 2 |
Aug 31, 2009 01:57 pm
maggie1244 wrote:
I have capsular constracture. A different ps says I will have to start from scratch again and then there is no guarantee it wont happen again. Dx 3/3/2007, DCIS, <1cm, Stage I, 0/0 nodes, ER+/PR- |
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PhyllisCC Joined: Nov 2007 Posts: 383 |
Aug 31, 2009 07:43 pm
PhyllisCC wrote:
Oh, Maggie... So sorry you have to go thru this again. Especially since there is no guarantee. Hugss and Hope to you. I'm sure others who have had to deal with CC will add their experience. My best, Phyllis |
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