TE TROUBLE
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Ralston...I did not have rads, hopefully someone will come along who has, but it sounds like a burn to me. Is the skin hot to the touch? That is another sign of infection.
Tatina: Now that is a good one! PTTED!! me too!
Shaeg45: You are still outputting a lot. If they pull the drain, guess where the fluid goes? It stays cooped up and surrounds your TE and then you have to *hope* your body absorbs it. As was the case for many of us here (myself, Fluff and momof3 included), it turned into TE Trouble for us. Some of us simply produce more fluid in reaction to the TE foreign body and the trauma of surgery. For me, if I do too much (like, working out hard on the elliptical even tho I'm not using my arms), the activity makes me produce more fluid.So I have to watch how active I am. Which sucks b/c then I really have to watch my calories! Good luck, keep us posted.
Psalms: Continued luck over there my friend!
Bogie: I agree, sounds unusual not to have a drain with if your PS is removing scar tissue and putting in a new TE. Did you have high output lat time? Maybe you are someone who has low output?
Olgah: Hang in there!
DM13: Let us know when your TE surgery gets scheduled! And welcome to the PTTED club! (See Tatina's post above)
Lizzymack: You have been through so much alrerady, and still facing recon with your own tissue. You deserve our gold crown of the week! (I just made that up — but really, I think we should award a cyber crown for all the %$#^ we go through!)
Shout out to everyone else. hope you've having a good weekend!
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Psalms, I'm 40, I was scared too. I kept hearing I'd go into instant menopause and all these things I might go through. I'm five weeks out and I don't feel any different from before. No mood swings, no hot flashes, no drenched sheets. My labs came back for my vitamin levels and my Vitamin D is 44! My Vitamin B12 is just over 400. :-) I had a bone density scan on Thursday and will have my results from that next week. My scrip for Arimidex is ready, I need to pick that up tomorrow. So other than these pesky TEs, I feel normal.
My daughter was great in The Vagina Monologues! It was a great play and did I sure look at the subject matter completely different now that I'm going through this crap.
As soon as I have my second opinion with another PS, I will update. I kinda having second thoughts about going through the TE process, too. I hate freaking out everytime my right side gets red. I have had the phantom itching since BMX, but I'm used to it...sometimes!
Michelle0 -
ShaeG45 - drains can be days, weeks or even months. It really depends on the amount of fluid draining. Mine were 4 wks, maybe 5. But the surgeon said when fluid was 20 or less per side per day, he would pull. But, he would NOT leave more than 5 wks due to possible infection.
My TE pain has mostly subsided from the last fill, finally after 4 days. I still have that one spot at the scar line. I can actually see in the mirror, and feel with my hand, where the implant is pulling at the mastectomy scar, and that is where the horrible pain is. I am taking Norco every 6 hours to keep it under control. I'm okay.
I was worried because I had dental work on the day before my fill, by my PS had given me prophylactic antibiotics to start the day before the dental work, so...and now I am 4 days past, the anticiotics are done, and no signs of infection!!! So, I know the pain is just the stretching. Next fill is Wednesday.
I had an interesting "groping session" with two ladies at work. One who had post BMX LATFLAP about a month before my BMX with TE, and one who had non-cancer related breast enhancement. OMG both of their breasts were so soft and squishy. (Is it fair to say that?). My TE are so hard as bricks, there is no other way to describe them. Both of these ladies literally were stunned at how hard my breasts are, like rocks. The simple breast enhancement lady feels like water balloons, actually too squishy for me, and she says she is only 80% happy. The LATFlap lady feels really natural and is very happy. She went from a B cup to a full C cup, goes without a bra, has her nipple recon done but not the tatoos yet, and is very happy. Neither of their scars are obvious, but are visible if you look.
This gave me great hope. My point is, I have learned that if I 'get over' my modesty, I have great resources at my disposal. I have decided that the "grope sessions" are good for me. (My husband is a little jealous). Most importantly, I have hope that I will look and feel somewhat normal in a few more months, and that any delays are for the best.
I recommend if you have a friend who has had any kind of breast reconstruction, you agree to put modesty aside and have a grope session. Knowledge is power.
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She Chirple-Mt Te's felt and looked like frozen hamburger buns...my implants feel and look like breast in my opinion, especially with the fat grafting.
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Hello everyone,
Momof3- Thanks for the reply. I think I had that problem with the last drain coming out too soon. Because at each fill fluid would literally squirt out from that little hole. It finally stoped by the 3rd fill. But, you are correct I think removing the drain too soon started all of the CC problems, maybe.
Bogie- My PS told me that I might not have a drain prior to surgery but that once he was in there he said it needed a drain. I was very, very sore around the entire foob area even under the armpit for about 4 days. I think the longer the surgery or more work they do is what determines the need. Good Luck and I hope it goes smoothly for you!!
Tatina- I love the new term! PTTED!! I think we all suffer from it! But, I do hope your scratch gets better.
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Renn- I think you're right about it causing trouble. Also, I was wondering if I do too much, too. Not exercise but, work, cooking & cleaning daily. Not to mention it takes an hour to do my hair. But, life does not stop just becasue I have surgery.
SheChirple- 5 weeks? Dag!! It looks like I'll have mine that long, too. Oh, there's no shame when it comes to reconstruction!! I think it's good that you had a couple friends that let you 'grope'. Hope your spot gets better!
Thanks all and I will let you know what happens Wed.
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specialk, i would love it if you could explain the stretching exercises. thank you.
vicky
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SheChirple - finally figured out what my problem was/is. I've flipped my TE somehow so when I went in for my fill he filled the left one from the top as usual and then filled the right one from the bottom...LOL I guess the burning was from the turning. No idea how I did this....maybe from driving?!? Who knows. Just 2 more fills for me though...I am so excited.
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mrochon: What are your current thoughts re: recon? Are you thinking DIEP? LAT?
SheChirple, thanks for chiming in. You are right, seeing others' finished products really does help. TE's are hard and there's no way around it. But as so many others here have said, once you get past exchange, you feel immediate relief!
Shae...yes, we have to live our lives, activity is part of that and not being active has its own drawbacks. I find it a fine line. I can walk and hike, no prob. But fast-peddle on the elliptical and it's fluid-buildup city.
Specialk: How are you?
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Hi all - I was out of town at a funeral and did not post so I am WAAYYY behind! I am doing well, but sore from running around in the airport, on and off planes, etc. I do feel good and am having no problems regarding the surgery, but it wore me out! There was a very emotional component to this trip because this was a longtime friend, and a BC sister, but also the physical part of the travel kicked my a$$!
ren - what is up with the pinhole? I am coming to your house and sewing/gluing/spackling it closed - whatever it takes!
tatina - wow! Time flies - can believe you are ready for the squishies! You are going to be so happy.
mrochon - I bet the play was awesome, and congrats on being back to working out. That is my next phase - getting back in shape is my new goal. And getting to wear an underwire bra.
shechirple - the groping thing made me laugh - I have been groped by curious friends and other BC ladies and I have groped my gyn nurse because she had BMX with implants! It is all good! For all waiting for exchange - you will not believe the difference! It is fantastic - I was overfilled in terms of my TE and PS put in a larger implant on the left by 25cc's and same size as filled on the right - they are still very squishy. I love them.
vicky - was I talking about massage of the implants or PT for LE - sorry! Refresh my memory because I can't find my post.
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olgah - how are you doing? How is the redness? I am fine, just tired.
cruth - I had a lot of tightness around the TE (at that time I only had the right one, left had already been removed) after each chemo. It felt like a vise from all directions but it would ease up, then come back with the next tx. I had a lot of problems with fluid retention, but if you are taking steroids they can actually cause fluid retention along with the chemo. If the chemo is causing the tightness it will dissipate after chemo is finished.
psalms - you might be having some vascularity on the surface of the skin where it is thin. When the skin is put down over the muscle it forms new blood connections to the muscle - sometimes you have a collection of small veins in one spot and it looks more red on the surface. Just a possibility.
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Thanks special k and Michelle. I am still monitoring it,I will check in tomorrow with the PS. I so wanted to get to the stage of squishes! Don't really understand it all...why? Is my question
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Specialk: Welcome home. I'm so sorry about your friend. And a sistah too. Very sad all around. Take care of yourself and rest up. No probs flying so soon after surgery? Do you preventative wrap?
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ren - Thanks! Yes, the funeral was tough. She had BC 13 years ago, had treatment, and some good years and then was dx'ed with uterine CA a year or so before my BC dx. We talked often during my treatment, tried to support each other, and then she was dx'ed with mets less than a year ago. I am still stunned that she is gone. No problem flying, I wore sleeves/gauntlets on both arms - I have LE on the right but surprisingly it seems that with exchange my arm is better. I am wondering if my TE's were squeezing the lymph system in that arm. My LE started during chemo but well after my axillary node surgery.
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Dear SpecialK - I'm so sorry to hear about your friend....... really sorry.....
Yes, time flies with my upcoming squishees. And speaking about "flies" I am nervous about flying. My husband and dog are representing the U.S. World Team in a dog sport and the April championships are in Italy (where my family is from). Looking forward to the getaway but not forward to the TSA portion of it all. Hoping my doctor's letter will let me slide through without too much hassle on the way back home.
How is everyone else doing today?
Take care,
T
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tatina - love Italy! We went for 10 days in '09 - want to go back! I have flown twice - once with a port and TE's and once with a port and implants. When I flew with the TE's I notified the TSA at the first checkpoint and had my cards in my hand for both port and TE. No problem - they put me through the "naked" scanner, and I had a pat down of my shoulders only. This time I didn't say anything about my port, and I was less concerned about being separated from my possessions because my DH was with me. Same thing - just went through the scanner, no pat down - piece of cake.
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I am not good at all. PS said he never seen in his life what happened to me. Today, because of blood supplies to the skin( not enough and skin can die) he removed another 100 ml out. So I am now like I was before the last op-eration. After operation and new TE expanding 3 times ( 150 totally), it started lookind like a triangle shape with eyllow spot underneath. It looks like it wants to open ther, which can happen , then I end up with emergency operation. So he wants to remove this skin by himself, if it does not improve and offered me to do FLAP instead. I don't want it at all, it hurts , and it is a big operation. I probably choose to be flat, but I did go through all that since september 1!
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It is not enough skin even for siza A... How could yhis happen? Why? Is it because I had 3 operations?
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olgah - I am so sorry you are still having such problems. Unfortunately, it is sometimes a case of bad luck - nothing that was done, or anything you did either. Flap surgery is an option but you are correct - it is a big surgery. You would need to give it some serious thought. I know that several ladies who posted on this thread eventually elected to go flat due to continuing problems. Does your PS think you could do that for a while and then address recon of some type later after the problems have cleared up?
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I could do that... but it would be 2 operations instead of one... what about bad luck? it is all my life...
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Olgah, sorry to hear you are still having trouble.
Sorry about your friend, SpecialK.
I had my first post-surgical fill today (50 ccs). Glad to be back on track!
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SpecialK - I'm very sorry abuot your friend. Is she the one you told me about (not the one that lives here)?
Olgah, very sorry to hear about your situation. I had only one fill when my TE was taken out last July. Then in February, in the operating room, that TE that had been replaced just three months before was aspirated because of problems. I was flat all over again. It is very hard emotionally to deal with. You want so badly to move on and keep coming up against road blocks.
The Vagina Monologues was very good. A couple of the stories I really connected with. It really brings it home how different women really are from men.
I made breakfast for 10 people on Saturday. They came out in droves. Most were hungover, lol, but that didn't stop them from eating 'home' cooked food. They were very happy which made me happy!
Still waiting for my referral for a second opinion. Called my doctor's office AGAIN this morning.
Michelle
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olgah - I know what you mean about the bad luck - I have had a lot, mixed with some very good luck too, it is disheartening though, isn't it?
dll - woot on your fill!
all - thanks for the thoughts about my friend, Diane. She was a gem to be sure!
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Psalms: did you have rads? Just wondering. Something else to remember is the PS will try most anything to avoid trying to drain fluid from the TE site b/c 90% of the time, even with a laproscopic-type attempt, the TE is punctured. Just be careful and don't let it fester. You have every right to be frustrated and asking "Why?" It is a very valid question. I hope you got some answers from the PS today.
Tatina: PTTED!!!!!! I think we all have suffered from that but never put it together as you have! One should automatically have access to valium when dxd w/bc! It should be the second thing that happens after the biopsy!
Renassus: I used to give out cyber capes to women who had a difficult week on chemo! I am sure, so very sure, CROWNS are in order! Speaking of which, chemo also ruined a crown I had! Good times!
Dixiemine: how do you not squeeze that adorable little dog?!?! So cute.
Olgah: speaking of cute dogs..!
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mrochon - yes, she was the friend I told you about. Her husband and mine were flight crew together overseas more than 25 years ago. We were fortunate to be stationed with them again when her daughters were in high school and my kids were in kindergarten and 1st grade - so they babysat. So devastating to see them now as young women grieving for their mother. They were brave and gracious - she would have been proud of them.
Glad you could cook for the hungovers! Even though my son is a good cook he loves "mom" cooked food! Would have loved to see the play too!
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Hi All. I had my bandages removed today and 2 stitches removed. Found out he put lots of alloderm in on the right side and had some "left over" and put it in on the left. He said the right side skin is so thin he had trouble injecting the fat graft where tOhe dimple is. I am sure I will be lubing up on triple antibiotic later (PTID-Post tramatic implant disorder)
To top everything off my grandpa dies yesterday. He was in Florida (winter birds) and has very explicited instructions about cremation and burial. My grandma is trying to honor them, but my cousins and uncle and even my mom are throwing a fit and want him brought back to Ohio. It is a mess and my grandma is getting pissed off and I feel so bad for her.
Olgah-I am sorry.
SpecialK-sorry about your friend.
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chick - PTID - I feel ya! Prior to that we had PTTED (Post Traumatic Tissue Expander Disorder). I am sorry about your Grandpa, and sorry that Grandma is being challenged in carrying out his wishes. It is always complicated, even if things are spelled out.
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Olgah - I am so sorry to hear about your visit with the doctor. Last week, my plastic surgeon said that once the breast surgeon takes out the "tissue" for a MX or BMX, it's the plastic surgeon's job to put us back together again. And when we use tissue expanders, some of us women have a very hard time with it, because we are asking blood supply to go around this foreign object to keep our tissue healthy. Now, I understand why some women choose the other types of reconstruction. But the one thing he told me was that we do have different options for reconstruction if one doesn't turn out the way we had hoped.
DLL66 - Yeah, on the fill.
Mrochon - Glad you had a fun weekend. Let us know when you have your 2nd opinion appointment.
Renn - How are things on your end?
SpecialK - After my BMX I never got TE cards. The only TE card I have is from my replacement surgery. The doc's office said the letter would be good enough -- but I will probably bring my 1 TE card and surgery reports with me! Yes, I love Italy and can't wait to be there.......
Chick - Sorry to hear about your grandfather. Take care of yourself......
Lizzy - where did you get that cat picture....too funny!
Night everyone,
T
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Lizzymac-no I have not had Rads,however I don't have an appt until Thursday at 3. Still monitoring,no change,but I have a feeling this TE will not make it another 6 months are so. I was scheduled to get the TE that had to be removed on April 23 along with a hysterectomy....
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Tatina, I understand... but I am so scared of FLAP operation... I already had 4, and mastectomy was not piece of cake, either...I read on the forum , operations usually are 12-14 hours , stay in hospital for 5 days...I just don't want it...
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