Still Uncomfortable with Implants

Hindsfeet- I wish plastic surgeons would realize that bigger is not always better- especially with recon.  It makes me so mad when I hear over and over again women who are saying they ended up too big and it's causing them pain.  Why can't they see that the trauma from MX cannot support a large implant without a risk of complications such as ours?  I will say the smaller implant + fat grafting did improve things a lot for me.  I was trying to compile a list of fat graft PS's at one time but it became impossible to "vet" them to find out the type of fat grafting they were doing, patient satisfaction, etc.  I held onto the list, though, and did have a few PS's listed for Washington.  Not sure if they take insurance or what type of FG they do, but will PM them to you.  

MIP730: I am so sorry that your still having the iron bra pain,   Its so sad that your having to go into another surgery just to get rid of the pain. I do hope that they find a solution for you.

Trina25: You are so very young, I do feel having our own tissue instead of the implants may be a way to go with immediate reconstruction and get it all done at once. Its a big surgery especially with chemo ahead. Please keep us posted. And if you decide to go the trans flap check out the micro surgery, I hear its a easier recovery. 

Kate33: I have read many of your supportive posts and appreciate them very much. It really does help knowing that it is not just us and our low pain tolerance ( like the doctors try to tell us.

I too am a person with extra large implants and I am counting the days to Dec. 10th, and praying that this severe pain will go away. I fell so scared. I have stopped my anti-estrogen pills and will resume after the surgery. I can't deal with both right now.

I wish I would have found this thread when I was searching last year, I only heard good things, and how it will make my Breast Cancer journey so much easier. 

Botty~

Did you have BMX with immediate recon with direct implants?  Waking up with a D with direct implants would seem to hurt even more.  My first PS did the same with going a cup size bigger than MY request.

Have you tried the Genie bra?  (as seen on TV )  You can get them 2 to a box for $19.99 at Target.  They are super soft and prettier than a sport bra.  Get the ones with wide band shoulder straps instead of skinny straps, especially if you think you have lymphedema in your chest. 

I have LE in chest and arm. 

Hope you get relief from you pain soon.  

TRINA - I'm sorry you have to make this decision at such a young age...

Before you decide, do some research on the new THIRD ALTERNATIVE -- Autologous Fat Transfer or Micro fat grafting. There is a way to get natural permanent breasts using your own fat and no additional incisions. This can be started as immediate reconstruction. Look at miamibreastcenter.com or look up Dr. Khouri's new book "Your Natural Breasts: A Better Way to Augment, Reconstruct and Correct Using Your Own Fat."

Botty, one can definitely get lymphedema in the breast, chest, trunk, underarm, behind the arm, or in your back. It is all the same "quadrant", along with your arm, that may be impacted by axillary node dissection or sentinel node biopsy. Even without a biopsy, during a mastectomy one loses a couple of nodes in the breast tissue up near the axilla (known as the "tail of Spence"), so this can put one at risk for LE. Also, one doesn't have to have any nodes taken to get lymphedema - there are a number of women on the LE forum who have truncal or arm LE who didn't have any nodes removed.




I have the personal view that implant reconstruction can also set one up for LE. It can block the flow of lymph fluid down the trunk because it can take up space and create restrictions to flow. The implant itself takes up space; the capsule that forms around it takes up further space; and any additional scarring from the surgery itself or capsular contracture can create further adhesions or scar tissue that doesn't allow the passage of lymph. This is just my opinion, and I really wish there were studies to compare incidents of LE for those who do implant recon and those who have no recon at all. I know that some women who have DIEP can experience some swelling in the lower part of the trunk due to the scar that runs across the lower part of the abdomen from where they take the fat/flap to make the breast tissue. Scar tissue blocks lymph flow, and one can do manual drainage exercises to move fluid to the inguinal nodes in the groin area. I had a painful expansion, implants placed that were a little too big for my shape, and then I developed capsular contracture and one implant poked through the pectoral muscle and damaged it. I developed truncal LE in the side of my chest in the underarm area and just behind. Would I have developed LE without? No way to know, but there is thought to be some hereditary connection. However, my mom had a mastectomy with no recon and never developed LE and she led a very active life with no risk preventive measures taken to avoid LE.




Anyway, back to You and the swelling you are experiencing in your breast/chest area. I urge you to check out the StepUp-SpeakOut website below, which is an excellent source of current information about LE (truncal included) and includes a search that allows you to find a qualified LE therapist in your area. When it comes to LE, early treatment most often leads to the best results in minimizing symptoms. I suggest you have a read, and if you have any questions, the women on the Lymphedema Forum here at BCO are a great help. A few of them created the StepUp site and are a wealth of information and a terrific source of support. Here's the link to site:




http://www.stepup-speakout.org/




To find a local therapist:




http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm




By the way, I don't know when you had your surgery, but I see you joined BCO this October. A lot of PS's or BS's will say that the swelling is post surgery swelling, but swelling that lasts more than a couple of weeks should be checked by a LE therapist. Better to be cautious and wrong. If anything, they could help reduce any post surgery swelling, which wouldn't be a bad thing. And the drainage exercises can be done immediately after surgery because it is not a deep massage and would not interfere with incisions or implants. When I deconstructed, I had therapy from the same day and for almost two weeks post. Very helpful.

Hey Sandra - I don't know the answer to your question, but I'm about to find out.  I have scheduled "deconstruction" surgery for January 17th.  I had the Lat Flap with an implant in Dec. 2010.  It has never quit hurting.  Plus my pec muscle spasmed so constantly, it has completely distorted the breast.  I ended up having about 8 Botox injections in my breast and armpit to temporarily paralyze the muscle and nerve to stop the ridiculous spasms.  That worked very well for stopping the spasms, which was pulling my shoulders out of whack - but didn't do anything to stop the pain, stinging, burning, aching, etc.   Like Botty, nights are especially bad for me.  It's like a full day of gravity takes its toll.  All bras hurt, and going bra-less hurts too, because clothes constantly brushing on it hurt too!  And I used to have unusually high pain tolerance!  Now it seems my whole nervous system is in over-drive.  I even had a bout with the Shingles in October!  Geez!  So, I plan to have the implant removed, scar tissue cut out, the thoracodorsal nerve cut, and a first round of fatgrafting to start to fill the void left by the implant.

I will be anxious to hear if getting the implants out gives you relief.

sandrav,

I had evil implants causing pain from the minute I woke up from surgery, then radiation, then a bad revision.  Five weeks after the bad revision surgery I didn't even have to schedule to have the implant removed -- because it extruded through my breast skin on its own.

Had to go to ER then on to a plastic surgeon to have it completely removed and left over skin tacked down over all the Rocky Mountain of scar tissue underneath.  It was a six week recovery per PS -- no swimming, no baths, no heavy lifting -- all for a short 45 minute surgery to remove.

Then two months after implant removed, I finally got help I needed when I traveled out of state to a reknowned microsurgeon in Charleston, SC, Dr. Kline, to have him remove the other implant (a/k/a boat anchor), spend several hours repairing damage from implants to pec muscles and chest wall, repairing radiation damage to skin and tissue, and remove scar chunks.  He and partner surgeon then did bilateral SGAP (free transfer of tissue/fat from my butt transferred to rebuild my breasts.) 

Big surgery, but worth it, and I personally had much relief from pain.  My right pec is still tight and my PT is still working on it.  Don't know if that will ever change because it's been like that since BMX.  All kinds of mean things happen during our mastectomies and lymph node dissections that we aren't informed about!

I'm having surgery in two weeks for Stage 2 of my SGAP surgery, and well as having a Lymph Node Transfer surgery to improve or possibly cure lymphedema I have in right chest wall and arm.

When I had to have my right implant removed urgently, it was a PITA trying to find clothes to wear to work, because my empty skin flap was tender and painful for about a month so I couldn't even "stuff" my cami.  So I went lopsided and wore either black or printed tops with jackets to hide it.  I was never able to wear a bra since BMX & immed recon w/implants because of the pain from that and then radiation.  Just about two months ago I started wearing a Genie bra, which is very soft and can be found at Target two to a box.

Good luck with your deconstruction!

Tina- I did find this study by UT MD Anderson published May 2012 that stated no difference in rate of LE between types of recon.  It said the biggest correlation was high number of nodes removed and high body mass.  Well, I had 2 nodes removed and weigh 120 lbs so I have to wonder about their so-called study!  

http://www.ncbi.nlm.nih.gov/pubmed/22544109

Kate - That is a good article, and BI4Y hired a knowledgeable person to write it, as evidenced by her LE credentials. I am impressed!! Real info so patients are fully aware of the risk for developing LE when considering implants. I wonder if the author got the 70% figure from the FDA data. I wish it broke down the stats for augmentation vs recon.

However, the MD Anderson study I would have to question. What kind of LE were they looking for (arm, chest, breast, abdomen, trunk, back), what methods did they use to test/diagnose LE (presurgery arm circumference measurements; 2% difference in size between arms; bioimpedence; perometer; water displacement; or reported symptoms by patients even when there is no measurable change in arm or other area within the at-risk quadrant of the body).

In August, several of us from the LE forum attended a LE Summit in Ohio. Carol57 summarized much of Jane Armer's presentation that addresses this issue and what is being done to remedy. Since it explains everything so clearly, I am lifting from her post of 8/18/12, 10:18pm on the topic: LE Summit in August, LE forum.

"The ALFP [American Lymphedema Framework Project] is working with its European counterpart organization to develop diagnosis and treatment standards for LE, which today are all over the place--different diagnostic criteria, different measurement methods, different approaches to treatment--and all that variation means that it's difficult to know what to expect when we go for evaluation and treatment, and it also means there's not enough pooling of evidence about what's working and what's not.  So wow to the ALFP and the European Framework for getting some standards in motion."

"What's more, Jane also told us about ALFP and the European Framework project to systematically review all the major LE studies  published (in the past ten years, I think). They are performing a quality assessment, which is needed because some studies have too few participants to be meaningful; some have such short follow-up that they're missing LE incidence after a year or less; and the studies, too, use different diagnostic criteria and different measurement methods.  All of these problems mean that it's difficult to know if one study was well designed, and even if it was, it's difficult to compare to other study results, because the study designs could be quite different."

"So...the ALFP is looking at the studies to tell us which ones are based on good science, and which ones are weak. And they are working on establishing diagnostic, measurement, and treatment standards, which I hope means that future studies will fall in line in those areas--making them more comparable, and helping to build a higher quality body of knowledge about LE."

After Jane's presentation, I posed the question of whether breast reconstruction and type (implant, autologous fat transfer, fat grafting) was also part of the data being collected going forward. It was not, but some of the participants remarked that it was a good question. I just had to put that out there, as I really do think it needs to be considered as a variable if we are trying to establish which studies are based in good science and can be considered comparable as we try to form a stronger pool of knowledge on LE. The kind of breast recon itself can murky the water. For example, DIEP usually includes nodes within the area of abdominal fat that is transferred to create a breast, whereas I don't believe GAP (flap from glute/butt) does.

SyrMom - Radiation is a known risk factor for developing LE. It damages nodes, skin and muscle in radiated area. Reputable PS's will not usually do implant recon on a radiated side because these changes will usually cause the recon to fail. Capsular contracture rate is much higher, as well as other complications. In addition to radiation, certain forms of chemo can also increase risk for LE. Doctors don't usually discuss these potential side effects of treatment (if they even know anything about LE, as doctors receive a max of 15 min - 2 hrs of education on the lymphatic system), as their primary concern is dealing with breast cancer. Still, it would be nice to know what to expect, what to look for, so one doesn't feel alone and in the dark about side effects and LE once treatment is complete.

Lalove55: I will definitely keep you posted, I am thinking that wearing a breast binder might help keep the girls in place, but I like the without anything as well. Are you waiting until after Christmas, or is it their schedule?

Kimber: You are giving me hope, I am so glad you are without pain.  I have a Christmas luncheon 11 days after surgery so I hoping to get those nasty drains out by then.

Pinkheart: Big  Hug, so sorry that you had to go through all of that. I never would have done this if I had read a thread like this one.

My PS tried the "Oh wow your the only one I have ever had this happen to, You are so senitive, like its me alone in the world feeling like this or something. I shut him down real quick ( kindly of coarse) I know he knows this is very possible

I may print out some of these stories

Tina what is the LE forum?

Thanks Tina,

I went back and started reading this thread again and OMG Some of you girls have been going through this for several years. I am so sorry!

Are any of you having to have hormone therapy too? I had to stop mine for now, I can not deal with both right now I am so worn out. I am usually a fighter too.

Makes me upset that many have had their cancer treatments interrupted due to our implant troubles.

Sandra - No hormone therapy, rads or chemo here. "Just" DCIS diagnosed on one side after a series of six biopsies on both breasts, but I opted for bilateral mast for peace of mind. Turned out to be the right decision, as two additional areas of DCIS were found in path, one in each breast. My surgery/recon was supposed to be straightforward; I was healthy and fit going in and healed quickly. I felt on top of the world, grateful to be healthy and DCIS out of body. However, expansion process was very painful, and I developed LE within three months of exchange surgery, and at six months implant poked through muscle and capsular contracture began. For me, what should have been an easy cure for BC turned into a nightmare because of implant recon. I can't imagine having gone through chemo, rads or hormone treatment as well. I know I have some PTSD from the chronic pain, but I have been feeling better as time passes. Unfortunately, the lymphedema makes it impossible to completely forget, but I am trying to move on as much as possible.

I have been taking Ibroprofen and muscle relaxsers. I feel like butter..lol So nothing gets done. I am bucking the meds too, but researching. My surgeon told me that there is a controversaies . I am going to give her a call andtalk about it. I don't want to take my pilleither

These pills force all of the estrogen out of me, can't be good and the side affects are Awful!

I had an hercetion drug drip all day yesterday.. not too bed

While I was leaving the had a drug company come in yeaturday catered by a Drug company... ummmm buttering them up maybe wit a new drug. Really concernes me.

Ronna, Wow it's been awhile since we chatted. You have been thru so much more. Prayers for continued relief of pain. Been there & always seemed to be waiting for the other shoe to drop( something else going wrong). I'm 3 1/4 years out from last surgery. Pain stopped 2 3/4 years out __THis last spring. Just stopped one day. ?????

Hello all, just a pop-in to announce a new thread---"INDIVIDUAL TO DO & REMEMBER LIST/CALLENDAR"have been trying to figuire out how to do this for months. Duh , then it was so easy. MODS MAY CHANGE FORUM, BUT SHOULD BE ABLE TO ACCESS IF IT'S IN YOUR FAVORITES.

Link to NEW THREAD :

http://community.breastcancer.org/forum/26/topic/797809?page=1#idx_3

Seasons Greetings to All,  have a blessful and blissful New Year. Sheila/sassy

Deborah--

Sorry that you are still having pain and probs with implants.



Of course everyone has a different anatomy and may have more concavity them others and it also depends on if the implants have been radiated and if they have done damage to chest wall and pec muscles and how much scar tissue you have.



Definitely get advice from a good PS but I would think that if they were planned to be surgically removed with care to fix any damage that you could be comfortable with or without wearing a prothesis after healing.



In my situation, I had severe pain from get go, then radiation to full implants then implant extruded through breast skin, trip to ER then surgically removed. So chest was very ugly looking and still had pain from damage.



Ive since started over with natural breast reconstruction using my own fat and tissue as free flaps (SGAP) and while this is another major surgery, I have had MUCH relief in pain from getting implants removed and because my very kind microsurgeon I found in Charleston SC, took a lot of time to first repair all the extensive chest wall damage before starting recon with my own tissue. BTW I am very thin and still able to have this surgery as my new PS is one of top skilled in US. (Dr Richard Kline)

So far so great! Still not at end of recon journey yet.



Hope your PS will stop ignoring you and listen to his patient. Cancer is bad enough to deal with and both recon and quality of life should be important to him.

Warm wishes for relief from pain soon and that you receive caring medical care.