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TE/Implant OVER pectoral Can exercise, comfortable &NO RIPPLES!

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Comments

  • magari
    magari Member Posts: 335

    Minute - Ask about highly cohesive gel implants. They are silicone, but can be cut in half and remain intact. My surgeon had samples to demonstrate this.


  • macb04
    macb04 Member Posts: 756

    MinuteAtATime, I don't think anything BUT Cohesive is available anymore because of that silicone leakage issue. At least that is one less worry.

    Good on you for going with someone who potentialally might be a better PS fit for you. Let us know and I will add this PS ( if not already on the list).

  • ClaireFraser
    ClaireFraser Member Posts: 47

    Thank you so much for posting. I have a consult with Dr. David Song next week and he is on the list for pre-pectoral, yes! My left implant has been recalled by Allergan, so I want it out. I had been thinking of going smaller anyway, so my right one will need to be replaced, as well (I never thought I would hate having bigger boobs, but they are a pain in the butt, and I have regretted it every day for nearly five years). Anyway, I hope all goes well with my exchange.

    Blessings,
    Claire

  • MinuteAtATime
    MinuteAtATime Member Posts: 67

    Thank you Macb04 and Magari--I will ask about the cohesive gel implants! Feeling cautiously optimistic.

  • macb04
    macb04 Member Posts: 756

    Well Claire, best of Luck on you upcoming exchange. Keep us in the loop.

    Hoping it all works out well MinuteAtATime. Crossing my fingers for you too.

  • Fritzmylove
    Fritzmylove Member Posts: 262

    I had my exchange this past Wednesday, and the recover has been a breeze. My PS removed my port during the procedure, and that hurts 5x more than the breast incisions! When my PS came into the pre-op room to draw all over me and talk things through one last time, we discovered that my left (non-cancerous, non-radiated side) TE had rotated a full 90*! I couldn't believe I hadn't noticed before then. It didn't cause any issues during surgery.

    I have noticed already that there is some rippling on my left side that comes and goes. Nothing I'm overly concerned about. It's crazy that my right side that had the cancer and went through all the radiation looks "better" than the left.

  • pi-xi
    pi-xi Member Posts: 177

    Fritzmylove, so does mine! 🤷🏻

  • Cpeachymom
    Cpeachymom Member Posts: 249

    minuteatatime-

    I have prepectoral saline. They’re called Ideal implants. Not really any ripples, but it does just feel like a bag of water under the skin. Looks great, feels kinda gross. That’s my good side.

    Question for the group-

    So my radiated side is hard and tight, couldn’t ripple if it wanted to. It’s been this way since I had my exchange, it hasn’t ever softened up. I went for my 6 month appointment with PS, he’s saying Cc, I’m saying no way. Question is, anybody developed Cc this quick?? It’s not painful. I really feel it looked exactly like it does now once my bruising went away. In fact I asked his PA at my 6 week if it was ever going to drop and she said no and I was so disappointed. I don’t plan on doing anything about until it becomes a problem.

    They looked ok together in clothes, not worth more surgery.

  • macb04
    macb04 Member Posts: 756

    So Cpeachymom. This is more than CC. More likely Radiation Fibrosis, possibly in conjunction with early stage CC. Capsular Contracture is an increased risk with Implant Reconstruction following Radiation. There are studies about this.

    Radiation Fibrosis can start immediately following Rads. It results from Progressive Microvascular damage due to ongoing tissue injury from a run away inflammatory process caused by Rads. It results in derangement of the microvasular circulation of the skin and fascia that was irradiated. It used to be called a Late Tissue Injury of Radiation, but is now recognized to be an ongoing process of damaged healing following Rads.

    It results in " stiffened, wood like skin" lacking in the normal suppleness and flexibility seen in healthy skin.

    The decreased blood flow and perpetual inflammation of Radiation Fibrosis increases the process of Capsular Contracture, which in many ways is a type of foreign body response to use of an implant.

    Only the following things help reverse Radiation Fibrosis by improving bloodflow to damaged tissue, thus turning off the runaway inflammatory cascade of impaired healing.:

    1.) Pentoxfylline 400mg Twice per day PLUS Vitamin E 400IU twice per day for at least a year, and possibly longer. The Pentoxfylline must be prescribed by some provider. Also a Topical Pentoxfylline 5%/Vitamin E 1% specially compounded Prescription Cream can be of tremendous utility in helping to reverse Radiation Fibrosis. I will furnish info on the research which you can take to your doctors, because unfortunately, many of them don't keep up with the relevant research.

    2) Hyperbaric Oxygen Treatment ( HBOT). This causes a HUGE improvement in blood flow to Radiation Fibrosis damaged tissues. It is even an accepted diagnosis by Medicaid. For them it is called Soft Tissue Radionecrosis. It is used, quite sucessfully for a host of Wound Care healing issues in addition to Rads Fibrosis, like poorly healing Diabetic Stasis Ulcers.

    3) Lastly, Fat Grafting brings new, undamaged cells into an area of profound hypoxia ( this hypoxia, or lack of blood flow has been shown by Doppler Blood Flow studies comparing Radiated versus nonirradiated circulation) These new cells initiate growth of healthy , nontorturous, blood flow in damaged areas. Fat Grafting is safe, and effective for Reconstruction, and is also beneficial in rehabilitating Radiation damaged skin.

    *********************************************************************************************************************

    I have written about all of these things before in this thread, after personally experiencing all of this, so please look back at some of the prior posts. Sadly, all of my doctors were clueless, and I needed to research everything and be my own advocate in pretty much everything.

    That is why I started this thread, so my unfortunate experiences could shorten the struggle for someone else.


    image

    ________________________________________________________________________________________________________________

    https://www.ncbi.nlm.nih.gov/pubmed/29687536

    https://ascopubs.org/journal/jco

    https://www.redjournal.org/action/clickThrough?id=1680&url=%2F&loc=%2Fapi%2Fhttps%2Flfm%2Fpub%2Farticle%2FidType%3Adoi%2Fid%3A10.1016%252Fj.ijrobp.2004.07.534%2Fformat%3Aabs%2FdeviceType%3Atablet%2FcheckAuth%3Apdf%2FecommInfo%3Atrue&pubId=41188197&placeholderId=1015&productId=1319


    2016 May;211(5):854-9. doi: 10.1016/j.amjsurg.2016.01.006. Epub 2016 Feb 22.

    Prophylactic use of pentoxifylline (Trental) and vitamin E to prevent capsular contracture after implant reconstruction in patients requiring adjuvant radiation.

    Cook M1, Johnson N2, Zegzula HD3, Schray M4, Glissmeyer M5, Sorenson L6.

    Author information

    1
    Oncology Clinical Research, Legacy Health, Portland, OR, USA.
    2
    Legacy Medical Group- Surgical Oncology, NW 1040 22nd Ave, Portland, OR, 97210, USA. Electronic address: [email protected].
    3
    Portland Plastic Surgery Group, Portland, OR, USA.
    4
    Legacy Medical Group- Radiation Oncology, Portland, OR, USA.
    5
    Legacy Medical Group- Surgical Oncology, NW 1040 22nd Ave, Portland, OR, 97210, USA.
    6
    Oncology Clinical Research, Legacy Health, Portland, OR, USA; Legacy Medical Group- Surgical Oncology, NW 1040 22nd Ave, Portland, OR, 97210, USA.

    Abstract

    BACKGROUND:

    The combination of pentoxifylline (Trental) and vitamin E has been reported to reverse significant consequences of radiation after mastectomy with immediate reconstruction, such as severe capsular contracture or loss of implants. We questioned whether prophylactic use could prevent these consequences.

    METHODS:

    Thirty women with implants or tissue expanders after mastectomy that underwent adjuvant radiation were treated with Trental and vitamin E for 180 days. All subjects then entered a 12-month observational phase.

    RESULTS:

    Of the 26 evaluable subjects, 3 subjects required implant revisions. One due to malposition of the nonradiated breast and 2 were due to contracture (7.7%). There were no implant losses.

    CONCLUSIONS:

    The combination of Trental and vitamin E can prevent severe contracture and implant losses allowing for immediate reconstruction with implant or tissue expander even if radiation is planned after mastectomy.

    ____________________________________________________________________________________________________________

    2018 Sep;24(5):816-819. doi: 10.1111/tbj.13044. Epub 2018 Apr 23.

    Pentoxifylline and vitamin E for treatment or prevention of radiation-induced fibrosis in patients with breast cancer.

    Kaidar-Person O1,2, Marks LB1,2, Jones EL1,2.

    Author information

    1
    Department of Radiation Oncology, University of North Carolina, Carolina, NC, USA.
    2
    UNC Lineberger Comprehensive Cancer Center, Chapel Hill, NC, USA.

    Abstract

    Radiation therapy (RT) plays an important role in the management of breast cancer. Radiation-induced fibrosis is a side effect of radiation therapy and may occur in up to 13% of the cases in patients (Radiother Oncol, 2009;90:80), fortunately usually is modest/localized and not associated with marked symptoms. However, occasionally, fibrosis can be moderate-to-severe, and cause clinically-meaningful symptoms. The current review summarizes the use of pentoxifylline and vitamin E of treatment or prevention of radiation-induced fibrosis in breast cancer patients. Even though data are limited, this regimen may reduce RT-associated toxicity.

  • Andraxo
    Andraxo Member Posts: 168

    Cpeachymom - agree with Macb04...sounds like typical radiation fibrosis, especially if it is the same as your remember it being like before and hasn't changed. I have that. 3 years out I still take Vit E, but never took Pentoxfylline....but wish I did. I hope you find some good answers/solutions!

    I'm headed for surgery again in November but have analysis paralysis for swapping out implants from textured highly cohesive gel anatomics (the ones linked to that rare lymphoma), to smooth round cohesive gel, or just going flat and removing it all including my nipples. I'm concerned about my skin on the radiated side. It is still a bit fibrotic and so freakin thin. I scheduled an appt with a behavioral health counselor next week to talk things out. This will be a first for me, but the counselor I chose has had breast cancer twice and sees many patients with breast cancer to help with life transitions. Hopefully she can facilitate something to help me through decision making. Of course, I meet with the surgeon the day prior but that's the way it panned out for appts. I just don't see that I'll ever be happy with implants. On the non-radiated side I can seriously hook my fingers around all the edges except the bottom. No fat grafting options as I don't have enough. Smooth rounds are expected to ripple more. The radiated side pocket is biggest medially against sternum so the implant will be rotated from the start (current one is now). No way to fix that because the radiated skin isn't going to stretch out more laterally. I shouldn't complain since they look great in clothes, but I still see fake, fake, fake, right under my skin. Will I be happy flat though? probably not, but I wouldn't have to deal with edges and ripples. I'm just so aware of these implants right now. Aware of them on my chest wall. Thanks for letting me vent here. - xo

  • Cpeachymom
    Cpeachymom Member Posts: 249

    macb- thanks! I have been doing vitamin E for the past year twice a day, and I did have fat grafting with my exchange. I’m hesitant to ask for or add the pentoxifylline just because I hate meds and the side effects that come with.

    I agree that it’s more likely fibrosis issues, but the skin seems to have good blood flow, and lots of spider veins. The grafting hasn’t gone necrotic that I can tell, he doesn’t think so either. I go for an ultrasound next week to get a better idea what’s going on.


  • macb04
    macb04 Member Posts: 756

    Cpeachymom, actually, spider veins indicate poor blood flow and are called torturous and only show up as an indication of derangement of normal microvascular vessel architecture.

    I know what you mean about worrying about side effects. I personally used oral and topical Pentoxfylline and Vitamin E together for several years with zero side effects. So if oral meds are of concern, a topical prescription might me of benefit.

    Show your doctor the Case Study info and a Prescription can be sent to a Compounding Pharmacy.

  • macb04
    macb04 Member Posts: 756

    Andra, even after years have gone by, all that stuff, Pentoxfylline and HBOT can still be helpful in rehabilitating diminished blood supply. It worked for me about 1.5 to 2 years after I was burnt to a crisp. I immediately developed rads fibrosis, and got zero help from the rad onco doctor, and all of the other doctors. I was tried PT for 6 months, with no improvement whatsoever.

    Then I looked up Pentoxfylline and Vitamin E on some site, talked one of my docs into prescibing it. Took about 6 months, but a fairly significant improvement in tissue suppleness, and loss of the insane tightness.

    As I told Cpeachymom, I took both oral and topical presciptions of Pentoxfylline and Vitamin E.

    Think about it, no matter what you decide in terms of implants/ versus no implants. Improved blood flow is always helpful.

  • Andraxo
    Andraxo Member Posts: 168

    Thanks macb04! I'm considering the pentoxfylline and will ask plastic surgeon about it next week since he did express concern about blood supply.. Any side effects you noticed? I don't like to take any meds, but it may help during recovery too.

    - xo

  • macb04
    macb04 Member Posts: 756

    Andra,

    No, actually no side effects at all. It was like I wasn't taking anything at all. It works by increasing the " distortability " of red blood cells so they can get into areas of torturous, restricted blood flow to improve tissue oxygenation. It's used mainstream to treat Intermittent Claudication.

    But of important note is the need to discontinue it before surgery, and probably for a couple of weeks to a month after surgery because it could potentially increase risks of bleeding.

  • macb04
    macb04 Member Posts: 756

    bump

  • wheatscapes
    wheatscapes Member Posts: 48

    Hello ladies - My first time posting here. 🙂 I am four months post BMX w/ above pec TE placement at time of surgery, nipples not spared, and two weeks post weekly Taxol. I am scheduled for my exchange surgery mid November.

    The issue I am having is side boob. There is a roll of fat that extends from my TE's to under my arm, making my arms lay away from my body when I stand. Yes, I am overweight. But I have already lost 20lbs and plan on losing at least 50lbs more. I had an exchange surgery pre-op consult (at my behest) with my PS as he didn't have me scheduled for one. He is kind of shrugging-off my side boobs, stating that they aren't part of my breast and insurance wouldn't cover them. He then said that he could extend the mastectomy incisions another 3-4 inches back and remove the fat/side boobs. He stated that lipo wouldn't have good results. He started ignoring my questions and seemed rushed.

    In the end he told me to go ahead with the exchange surgery, lose all the weight, and come back for any needed revisions after the weight loss. Problem is, I don't want two more surgeries, don't want t pay for something that should be covered by insurance, and don't want to walk around with side boobs for the next year + while I lose weight. I hate these side boobs. But, will the side boobs go away with weight loss? Do I need to add more scars to my already badly scarred foobs, or be patient while my body shrinks

    Consulted with another PS today who didn't think insurance was an issue and corroborated first PS's assertions that the only way to get rid of side boob right now is via additional excision (making scar even longer). He has a better bedside manner and wasn't dismissive of the side boob.

    I have another PS consult coming up next week - this time with a PS at an NCI. He comes highly recommended and trained at John's Hopkins. I will wait to see what he has to say about the side boob issue.

    Does anyone have any experience with side boob issue? How did you resolve it? Had I known this was going to be an issue I would have lost weight before getting cancer (joking). In my defense, the cancer made me very lethargic and depressed. I quit exercising and binged on sweets. It was so bizarre. I am used to being in excellent shape and doing triathlons. 🤷🏻♀️

    Any input/suggestions appreciated. TIA

  • macb04
    macb04 Member Posts: 756

    Hi Wheatscapes, I hadn't seen the side boob issue come up in particular, on this Prepectoral Thread. I saw it somewhere else, on the general Reconstruction Forum. I understand not wanting more surgery. It's like someone says how long can you hold your breath, how long can you live with discomfort and an unwelcome problem.

    Easy for so many doctors to blow off your issues. I have lived that experience quite a lot myself. Maybe someone will chime in with some personal experiences.

  • exercise_guru
    exercise_guru Member Posts: 333

    Its a good question. I don't have a lot to contribute about side boob. there might be lymph vessels. When I had my Mastectomy/reconstruction my sentinal node was very deep and so the BS scooped out a huge amount of tissue to get to it. My PS had to take a tuck in the skin to compensate close up the breast. He was not happy with how it looked but I much prefer it to the other side that smoothly tapers and has a underarm flabby space kind of side boobish. The left side has far less problems with lymphadema than my right so I can't say that the tuck mattered. Definitely talk to the PS that is coming in and find out what it would take to have that look better. Then post here and tell us what you learned.


  • macb04
    macb04 Member Posts: 756

    bump

  • hapa
    hapa Member Posts: 613

    People who have had radiation: does one foob sit higher than the other? Can anything be done about this? I have one sitting higher than the other and I don't know if its due to capsular contracture, normal fibrosis of the skin, or the fact that my PS put alloderm on the rads side but not the other side.

  • Andraxo
    Andraxo Member Posts: 168

    hapa - I have radiation on one side and that implants sits sideways, but not higher. It's an anatomic shaped implant and since the lateral chest wall is tight from rads the implant rotated to have the thin end to the side/laterally. It's been like that since the exchange surgery and has never changed. Both sides have alloderm. Has your always been sitting higher or did something recently change?

    My implants (textured cohesive gel anatomic) are being removed on Nov 6th. Probably change to smaller smooth rounds that are maybe 200-220cc each (at 250cc now). I wanted to go flat, but PS doesn't think he can safely remove the alloderm on the radiated side (might lose my skin and that would mean skin grafts - yikes!)....so I would still have edges and visible lines of alloderm. :( If that is the case (still having bad visible edges, which I have now) I might as well still have A-cup implants with visible edges. :) Can't have fat grafting unless I gain some weight, which I won't purposely do being ER+ cancer.

    - xo

  • macb04
    macb04 Member Posts: 756

    Good Luck Andra on your upcoming surgery. May you get a better result than you anticipate.

  • hapa
    hapa Member Posts: 613

    Andra - thanks for your reply.

    My implants were lopsided before radiation (two different sizes, no idea why my PS did that), so they have never been even. But after rads I got some capsular contracture which was released when I had my implants replaced. I currently have Allergan Inspria smooth round responsive 210cc implants. I think the right side has sat higher since my revision. That boob also looks smaller and the nipple sits higher on that side as well (I had nipple sparing BMX).

    I saw another PS today about fat grafting and if better symmetry was possible; the PS who did my last two surgeries is out on leave. He said I'm a little thin for fat grafting but he could probably do at least one round. He may have to take fat from several different areas to get enough though. He said he'd move the IMF down on the rads side and then use fat grafting to make things look more even. I'm having a hard time picturing this in my mind. Wouldn't moving the IMF down just move the mound down a bit and make the nipple look like its sitting even higher compared to the other side? Interested in your opinions here ladies, and willing to PM photos. Thanks in advance.

    Also Andra, when I was first dx'd and went to see the PS, which was yet another PS (same cancer center but he abruptly "resigned" before my surgery, the new guy I saw today is his replacement), he said everyone has enough fat for fat grafting. So I'd get a second opinion on fat grafting if you haven't already. I'm BMI~20 on a fat day and they think they can do one round on me and maybe even two.


  • willa216
    willa216 Member Posts: 162

    Hi: Wondering if you all might have some insight on pre-pec revisions due to capsular contracture.

    I have grade 4 capsular contracture with a pre-pec implant (allergan inspra) . It has happened twice - once with the original saline implant and then again after the exchange to silicone. My PS doesn't use Alloderm. I'm about 3.5 years out and the contracture just continues to get worse. It happened within about two months after surgery - both times.

    Has anybody had a pre-pec revision without Alloderm that actually worked? My original PS won't try another implant and says Alloderm has all sorts of complications. A second PS says Alloderm would help with either pre-pec or sub-pec (which I don't want to do) and that he's never had issues with Alloderm. (As an aside he says you can remove Alloderm if you have a reaction but I've read otherwise). This guy has an amazing reputation but I'm not sure I believe him. I have to do something and just cannot make a decision, esp in light of all the FDA/implant news. I get worked up thinking the contracture is a sign that the body will not tolerate any implants (but that is another story).

    Thanks for being here.

    Love.

  • macb04
    macb04 Member Posts: 756

    Hey Willa, welcome to the Prepectoral Thread. I had Alloderm used initially with a subpectoral TE when I was first chopped up for the unimx. Fast foward issues after rads, and I decided to try just Fat Grafting. The PS I chose was the only one doing it in the wilds of Seattle a few years ago.

    He decided to take out the TE, as well as the Alloderm. Let my poor, tortured Pectoral Muscle heal. Long story short, Fat Grafting only worked marginally as the PS didn't really know how to do Fat Grafting properly.

    So new PS picked to do Prepectoral Implant Reconstruction. He was better, and also still clueless. Put in an implant about 100 to 125cc too small, and left me lopsided. The only bright thing he did was use Seri Silk Mesh instead of Alloderm (Cadaver products kind of creep me out).

    So now to your question. Capsular Contracture is an increased risk for any rads patient doing implants. You don't have down if you had rads, so I don't know if that is a factor. I do know that Pentoxfylline 400mg Twice per day PLUS Vitamin E 400IU twice per day for at least a year have been shown to help. The studies specifically addressed rads related Capsular Contracture. For some odd reason, no studies have been done on Pentoxfylline and Vitamin E as Prophylaxis against Capsular Contracture when there is no history of radiotherapy. You would think that would be obvious to try, since it really helps if there has been rads.

    There is also a study using Low Level Laser Therapy (LLLT) to fix Capsular Contracture. They had excellent results. Then another study said no it didn't work. Then the article below more recently detailed sucess with LLLT.

    I guess it's still an area of conflicting research, and you will have to look into it all with an open mind.

    https://journals.sagepub.com/doi/abs/10.5992/AJCS-D-14-00036.1

    https://www.ncbi.nlm.nih.gov/pubmed/30511966

    https://www.thepmfajournal.com/education/how-i-do-it/post/how-i-do-it-postoperative-care-following-aesthetic-breast-surgery-treatment-of-capsular-contracture-with-celluma-low-level-light-therapy

  • willa216
    willa216 Member Posts: 162

    Hi: Wondering if you all might have some insight on pre-pec revisions due to capsular contracture.

    I have grade 4 capsular contracture with a pre-pec implant (allergan inspra) . It has happened twice - once with the original saline implant and then again after the exchange to silicone. My PS doesn't use Alloderm. I'm about 3.5 years out and the contracture just continues to get worse. It happened within about two months after surgery - both times.

    Has anybody had a pre-pec revision without Alloderm that actually worked? My original PS won't try another implant and says Alloderm has all sorts of complications. A second PS says Alloderm would help with either pre-pec or sub-pec (which I don't want to do) and that he's never had issues with Alloderm. (As an aside he says you can remove Alloderm if you have a reaction but I've read otherwise). This guy has an amazing reputation but I'm not sure I believe him. I have to do something and just cannot make a decision, esp in light of all the FDA/implant news. I get worked up thinking the contracture is a sign that the body will not tolerate any implants (but that is another story).

    Thanks for being here.

    Love.

  • willa216
    willa216 Member Posts: 162

    Morning all

    macb04: Thanks for all of your info! I forgot about the low level laser option (I would like to blame that on chemo). I did not have rads. I'm so interested in the vitamin e and pentoxyfylline. Thanks for the links! I'll be taking a look later today.

    I'm so sorry you've been through so much with your implant. Bleh.

    Wishing you a good day today. XX.

  • Andraxo
    Andraxo Member Posts: 168

    Thanks hapa! - I'm also BMI around 20 and had a round of fat grafting after radiation but before TEs/implants. Not much left. It's a lot of tissue trauma to take little bits from lots of places for fat that usually reabsorbs. It typically takes a few rounds to get a good result. The fat harvesting sites were more painful than any breast surgery I've had and that was even with a special device that is less traumatic that the usual method. My current surgeon would do it, but I'm just not willing to waste my fat on that (only enough for one round)) when it is also used for obtaining stem cells for other uses (such as joint injections). As an athlete, I have to think about that for the future.! :) I did see another PS surgeon for another opinion earlier this year when I was having pain and redness on one side, and he told me to gain 15-20 pounds for fat grafting. No way I'd do that as ER+ cancer. I also had nipple sparing BMX and my nipples are not symmetrical. I call them googly eyes! - they point in different directions and are both too far lateral, especially the radiated side. I'm having them removed next week with the implant change. They've been more trouble than I'd like in trying to always to conceal them, plus one gives me sharp pain if I'm not careful taking off my sports bra.

    Thanks macb04! I'm hoping for a good result :)

    - xo

  • hapa
    hapa Member Posts: 613

    Thanks for your reply Andra. I did not realize you had already done fat grafting. Makes a lot of sense! I love how that PS thinks you can just gain 15-20 lbs on command. None of my PSs have suggested such a thing. If I did that I might have a better rack but then I'd be stuck walking around with a fat face.

    My husband is giving me grief about this next revision. I don't know what his problem is but he's going to have to suck it up.