TE TROUBLE
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Happy Mothers Day everyone!
LisaMarie, don't expect what I'm going through on your fill - my pain is due to pressure on the sutures along the natural fold line. This was done during my revisions to correct the mistakes DICDOC made. I don't think you have sutures along the fold line. General tightness can be expected but nothing terrible - atleast that is what I experienced prior to this. YOU'll do great! and by the way, if I haven't told you this already.... I LOVE the look of your incisions with your tattoo!!! (okay, here comes the preachy part, don't look if you don't want to hear it) NOW... put down those cigarettes young lady! Do all you can to heal you. Quiting smoking is one of the hardest things I ever did and I'm very proud of myself for doing it. YOU will continue to feel powerless if you allow yourself to give into the urge to smoke. Tell yourself over and over and over again - out loud - how much you hate it. Your brain will respond, and the cravings will get lighter.
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Momo, great no fever, great no spreading of the redness. I wonder if benedryl would help (if someone already suggested this ignore me). I'll be curious to hear what the derm and ps say. I have very, very sensitive skin. the surgical tape did a number on my skin. I'm also allergic to latex.
Fluffqueen, I'm still laughing about the gummybears!
I often toy with the idea of giving up cheese but .....wine and cheese are my two vices. The main reason I stay away from painkillers is because I'd rather have a glass of wine. Wine, cheese, cigarettes, sugar.... ugh!!!
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Green Monkey , Thanks so much I am putting the cigarettes down , I did this before so I know I can do it again. my main concern is healing and hopefully getting back to work asap , I really dont want to loose my apt and stuff ,
Happy Mothers Day everyone .. Hope everyone has a beautiful day
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Hi...I had my BMX with TE's in January and just recently found this site for BC discussion ( wish I had found this back in Jan!) Anyway, wanted to say that I too developed a red rash on my right side-has slowly crept up half of breast and couple of inches below suture line . PS put me on round of antibiotics to rule out infection-didn't help. He thinks it is Red Breast Syndrome-and that dr's really don't know the cause-but thinks it may be a host-graft reaction to the Alloderm used to give support to the TE's. Says it can wax and wane in appearance-which mine has-some days angry red and others a pinkish brown color. I too was worried about implant surgery with unhealthy looking skin. Along with that my left side has had severe pain underneath breast-so bad it takes my breath away. ( but only lasts for a few minutes) PS thinks this from Alloderm (once again!!) where it's attached to pectoral muscle. My Dh and I feel like it 's the expander hitting a nerve .Pain has not gotten better and PS cannot guarantee pain will go away with implant exchange. So long story short I am having TE's removed and for now will be breast free (which I have been so upset about but I cannot take pain anymore). This is actually my 3rd cancer-melanoma 10yrs ago,uterine ca with chemo just 3 yrs ago and now breast ca.
Also concerning Red Breast Syndrome -PS felt like it would resolve one Alloderm incorporated into my skin. Hope this helps !0 -
Happy Mothers Day to all you wonderful ladies! Hope your day is perfect! My DD and DH ran the Susan G Koman race for the cure with me yesterday. We had a great time. The foundation has gotten such a bad wrap lately, but there are so many dedicated people who understand the need to help stamp out this disease. I thought it was a great event!
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Happy Mothers Day to all the Mom's on this board! I have been unable to post. I had my surgery Tuesday and with all the meds I couldn't think straight....the pain was so much more then I anticipated. I had my Left TE taken out and a "gummi bear" put in. That was the easiest part of the surgery by far. I have virtually no pain and am so pleased with the results!! I had the TRAM for the Right side, which I lost the TE to a staph infection in November. My surgeon did an amazing job! My breast navigator was allowed in for the surgery. She said she was in "awe" of the artist my surgeon is what a perfectionist. She said she has a new respect for anyone that has gone through this surgery. I knew it would hurt and I have a very high tolerance for pain.....but it was horrible. I spent over 5 hours in recovery as my kidneys weren't working at first.....she told me the first word I uttered was "pain". I don't remember much....I did have an epidural to help with the abdominal part of the pain and a morphine pump....unbelievable what is involved. Just having to roll on my side to show the epidural site was pure torture. The next day I had a fever and the epidural came out in the middle of the night..I was on my own. I did have a pain management doctor go over my history and help manage the pain. I am on a new pain killer that seems to be working well. Getting to sitting and then not using my stomach muscles, might I add with a broken ankle, to get out of bed was undescribable! I hope to get all four drains out on Tuesday. I do want them out but know the pain involved. Two pain killers for that visit! Hope I heal in relatively quick time frame and can move on. This was a huge stepping stone I dreaded, but I did it and am pleased with the results.
Once again--thank you everyone for your caring and concern!! It means so much to me and I will be back to post in a few days. I keep falling to sleep in the middle of typing or texting....part of the journey I guess-LOL
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Here is my situation; I would appreciate any and all advice.
I am 34 years old, diagnosed in January with extensive, high grade DCIS with central comedo necrosis. The diagnosis was made after I went in for an appointment with my OBGYN to remove my IUD since my husband and I were ready to try to have a second child. Instead, we had a mastectomy in early February with direct-to-implant reconstruction that left behind multiple involved margins. The cancer surgeon's reaction made no sense and we switched to a Comprehensive Cancer Center.
Two weeks later, a second surgery cleared the margins through re-excision, the permanent implant was removed, and a tissue expander was inserted. I had two fills, the last one in early April. One day after the second fill I got a horrible flu and was very sick for a week. Approximately 10 days after the second fill I developed an infection (swelling, redness, pain). Treated with oral antibiotics for two weeks, and it seemed to respond. My scheduled surgery date to swap the implant was left on calendar for May 10.
On May 10, when they went in to do the swap, they discovered an extensive infection. I had not been symptomatic in any way (no fever, no redness; my energy had returned to normal). But it was so extensive that the PS told me he removed more than eight ounces of pus. (Yuck!) He also removed the alloderm (originally inserted in the first surgery) and could not leave anything behind. The TE was removed and now I just have a flat space. And another JP drain, I really hate those things.
Post-surgery, PS indicated it would be at least three months before he could attempt to reinsert a TE, and I presume another three months after that until he could swap for an implant. I was loopy from the surgery and the answers weren't clear. I suspect when we see him later this week that timeframe may further expand based on what I have read in this forum. During that entire timeframe, we obviously cannot try for another child. I will be 35 in October and hoped to have two children not more than three years apart; we are pushing that deadline now.
I feel like the obvious outcome is to just accept this sad looking, folded-in on itself, prune-like plane of skin for a few years while we try for a second child and hopefully breastfeed, and come back to the reconstruction in 3 or more years. But I am worried and down about living with no breast for that time period. I am worried about how it will impact my sex life; my husband is fabulous but frankly the way my breast currently looks would not be a turn on to me. I feel like this is probably the only realistic option but I don't know that I am ready to have this sad boob hanging out every time I change clothes at the gym, go swimming, etc. I am still young and generally very healthy; I have taken very good care of my body. It is hard to see this part of my otherwise very healthy, muscular, attractive body so disfigured.
Also, I am worried about the skin where the breast is folded in on itself. Is there a concern of infection/that the skin won't be healthy in the folds?
Any thoughts or experiences would be appreciated.
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Meredith, do you know yet if you will need chemo or rads? Was it a unilateral or bilateral mastectomy?
I had a hard time mentally being flat on both sides & then again on one side when I had to have an implant removed. Three years is a really long time, but only you can make that decision.
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Thanks. No chemo or radiation. Unilateral on the left side.
I am afraid if I wait and then am unable to get pregnant that I will regret it forever.
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Hi ladies,
I saw the Dermatologist and my PS and got the all clear, all systems GO from both of them, so surgery is still on for Wed. The redness seemed to be some sort of irritation/dermatitis and the steroid cream really cleared it up over the weekend. ((BIG SIGH)). I started sobbing when the Derm told me it was all good.
I've been having some pretty severe muscle spasms though. Probably stress has brought them back on. I'm not going to let them get me down though!! NO WAY!
So I'm in my "pre surgical nesting" mode. Cooking/cleaning/washing everything in sight. Please keep me in your prayers when you wake up on Wed morning. Surgery is at 8am.
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Meredith, that is a tough call. If you think you will regret the decision, then I think that is a very important factor. Glad that you won't need chemo or rads, though!
Yay, momof3! Glad your skin is clear & will definitely be sending you positive vibes on Wed.
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Bonseye - wow... I knew there was pain involved in that procedure, but had no idea the extent! You are so brave to have weathered the storm, so to speak! Please keep me posted on your recovery.
Meredith - I am a mother of two and had a very hard time conceiving (had 3 ectopic pregnancies along the way). You are faced with a very hard choice, one only you can make. Children are such a blessing and your clock is ticking... I have heard that expanders can stay in for a very long time, maybe there is a way to do both?
I went 3 months flat on one side. despite the fact that I have always taken really good care of my body, I had no idea how important my bodies shape was to me, until I was flat on one side. Of course I was able to properly stuff that side, so really no one knew but me... that was enough to really upset. I will keep you in my thoughts. Good luck and please keep us posted.
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momof3 - Yay! Will be sending nothing but positivity on Wed. a.m. It is time you join the list of success stories!
meredith - I had the same thought as DM - could you have the expander replaced and either filled or partially filled, and then leave it in place during pregnancy? My right one was in with only the surgical fill for 10 months before the first fill and by the time of exchange it had been in for 16 months. The left one was in with surgical fill after BMX, then out, then in, then out for 7 months, then in and finally filled, then exchanged!
curlyfry - good luck tomorrow - will be thinking of you!
bonseye - glad you made it through, wishing you the best, just rest - we will be here when you are feeling stronger!
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I forgot to mention... I am seeing new PS through new insurance (Kaiser) in a couple hours. I think I am nervous, as I didn't sleep last night.
I hope I like him. I wish my DH was in town to meet him too... I've had lots of pain on my torso under armpit, so afraid to be touched today.
Will let you all know the outcome
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Bonseye, oh my goodness, WHAT an ordeal! you are BRAVE! I'm cringing at your description of the pain. Do you mind telling me/us the name of your surgeon. I love hearing the praise and it would be good for other women to know as well. I think it would be great to have a post that addresses the positives and negatives of doctors in various areas.
Meredith, geez, you've been through so much. It's bizarre to me that the body could function normally with that much of an infection. I'm guessing thats due, in part, to your overall good health. As for dealing with the lack of breast, my only advice is to focus on how wonderful you feel (and expressed here) about the rest of your body and remember, this is temporary. You'll get there in time. In many ways, our cancer journey makes us more desirable - as women, we are stronger. we are couragous and this adds to our overall appeal. The other day I blindfolded my husband before sex (another side effect of 50 Shades of Grey) - it was sooooo great to not have to think about what my mounds (post BMX with TE's) looked like and he couldn't touch them because he was handcuffed
we both had a great time and I felt sexual/sexy, for the first time since before my surgery. Momo, glad you got the green light!!!enjoy your nesting and sending you positive vibes for Wednesday!
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GM - wow... living the book! I am so impressed. I want to do that too.
I have the most amazing news! I am just back from meeting with the new PS, since joining Kaiser. OMG - he is doing everything opposite my old PS and it feels good!
He says I have frozen shoulder, which I guess is bad, as he said it could be two years before I can have normal mobility... thanks to my old PS for not allowing me to really move my arm since December!
He says it looks like I do indeed have LE on my torso under armpit, which is also bad... however, I had been trying to get help in these areas for the last several months, and with a quick swipe of his hand, I am being sent to a LE specialist and a physical therapist! I could not be happier. Even though I have such a long ass way to go, it feels good knowing that I am finally moving forward with physical recovery... He also said I can sleep flat now, walk the dog and raise my arm up above my head (at least try to). He also told me I need to massage lotion over top of foob and on incision line. Oh, AND can wear light bra or sport bra - do not need surgical bra any more!
I am getting my first fill June 6th, and I am actually excited about it. Have to call and cancel my appointment with old surgeon... not looking forward to that, as for some reason I feel guilty!
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DM, I can NOT get over how slow your PS went.. were your nodes taken from both sides? if so, how many were taken from your LE side? great that youre seeing a therapist! PLEASE don't feel guilty about canceling your appointment. geez, he did you a disservice! I would put your reason in writing (but hey, I love to write/vent) and email him.
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Meredith, what a tough spot to be in! I agree that you need to have another baby before it is too late. I was so afraid my flat, yucky missing breast would be a turn off for my DH that I covered it with pretty Bras and nighties for the entire 5 1/2 months my TE was out. It may be a few months longer for you to wear pretty nighties so you can fit a baby in your time line. It will be worth it and you will appreciate the gift of a child even more. Best of luck to you!
Tomorrow, I finally get my TE replaced! So weird that I'm looking forward to having surgery! What a difference a year makes!0 -
Good luck, 1Curlyfry!
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Good luck, 1Curlyfry!
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Luck Curleyfry..
I am off to the PS this am and he wants to do a fill UGH I am so scared , it seems my left TE is more swollen than my right TE , I am praying I don't have a seroma and that all is okay , I could be imagining things , since i smoked I had it in my head that i harmed myself
I am very anxious and scared .. Thank you ladies for being such an amazing support to me 0 -
Good luck curly fry - just said a prayer for you:)
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Good luck curlyfry. Looking forward to your post-op post.
Lisamarie - I hope you are doing well and have been able to stay smoke free. I am sure you are fine, but please let us know after your APPT today. I want to hear how your fill went.
GM - all 32 nodes were removed from the LE side! What did you mean by how slow my PS went?
I am so thrilled we switched to Kaiser. They have a whole LE center!!!
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DM, HI! what I meant when I commented on how slow your PS went - to me when you said "thanks to my old PS for not allowing me to really move my arm since December!" - that is so different from what I was told. I had my BMX at the beginning of march and they had me doing excercises while I was still in the hospital - arm circles, shoulder rotation, etc. There was something else you said... oh, being told you can't walk dog, sleep flat, all that time. and finally, not getting a fill til June - 6 months after your surgery? Maybe I'm reading it wrong, or it had something to do with your cancer treatment, but that sounds a long time to wait for a fill. I'm so happy for you now that you are moving forward with your new PS and getting LE help! You sound like you have a great, positive attitude.0
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Good luck today Cirlyfry!
Lisa - If you have a seroma it isn't necessarily bad. I had one for months on my left side. It helped my skin stay pliable on that side. As your TEs are filled it will force the fluid in your pocket out. Is this your first fill? Chances are you won't feel anything. Your nerves in that are haywire from surgery. You'll do fine. Remember you can get as little as you want.
I finally had a fill yesterday! My dr actually put in 60ccs each side. I have little bumps on my chest now. One down low and off to the side, the other up high and to the middle... I'm working from home today. Chest is a little tight. I may not workout today, haven't decided yet.
My second opinion is today too!!!! Yah!!!!!!!!!!
Michelle :-)0 -
Hi everyone,
Okay, I think I'm back on track with work since we got back from Italy last week. The trip was great. For those who didn't know, we were there because my husband and our dog, Luigi, were in the World Championships. They made the podium and placed third in the world.
Just got a call that my pre-op got postponed to next Monday. Although I'm looking forward to the exchange, my stomach is in a knotted nerve bundle. Valium? Where are you?
Curlyfry - I hope you are feeling well today. Take it easy -- the discomfort will ease up in the days ahead.
Momof3 - So relieved you are okay and will have your exchange tomorrow! Yipee!
GM - I hope you are feeling better and the pain has gone away.
DM - Have your muscle spasms gone away? Great news on your new doc. Frozen shoulder? That must be so uncomfortable -- is there anything you can do right now to feel better?
Mrochon - Let us know how your 2nd opinion goes.
Special K and DLL66- How are you two doing?
Chick - When do you start your new job?
Martha - I never heard of Red Breast Syndrome before......
Lisa - hope your fill went smooth. How many cc's did they do?
Bonseye - your PS sounds amazing...... how are your pain levels right now?
Meredith - so sorry for what happened to you. How odd that your body did not react to infection when there was so much puss in there. As for the folds of skin, my skin did really well when my TE came out. The results were healthy tissue.
Renn - What's shakin'?
Take care everyone!
T
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GM - You are so right. My old PS told me to keeps arms at side and basically do nothing. I am in worse shape because of that and so glad our insurance changed. Now getting the help I have needed.
However - when TE's were installed, they were initially filled with 350cc's. I lost a TE in Jan and only just had it replaced April 17th. The plan was to wait 6 weeks for the first fill on the new TE, only because I wanted to make sure proper healing happened first.
When it is all said and done, I doubt very much to be much larger than 350. I was busty before cancer and would like to stay on the smaller side now.
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Me, too DM! I want to be on the smaller side too, now!
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lol, I want to be on the larger side! I was never proportionate. My bottom has always been about two sizes bigger than my top. Dresses always had to be wraps or I had to get the dress to fit my hips and have it altered on top or stuff my bra. It would be nice to not have to do that anymore.
Tatina congrats on your doggie win! That's awesome! What kind of doggie? Have you ever seen that movie Best In Show? Love that movie, lol!
One hour and forty five minutes and counting...
Michelle :-)
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Hi friends , funny stuff my left side is way bigger than my right .. PS informed me I never had any fluid placed at time of BMX funny cause left alwasy had a little bump. and right flat pancake .. today I did not like the needle sticks as I felt them both .. yuck then all I could handle was 40cc in each side , my right side is hurting bad all way to my wrist . PS says I am healing like a teenager. funny glad he thinks so . I am a baby ! had to come home take percocet . didnt wanna but had to was in tears hoping tomorrow is better .. next week tuesday next fill... thank u so much for all ur thoughts and cares and support ...hugs to u all xoxo
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