TE TROUBLE
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Maria - I know you and I are in similar places in which we cannot opt for the implant route. Think I saw you post on another thread about DIEP vs LD flap -- I am going with DIEP/SIEP option (hope it works) because I do not want to compromise any muscle, if possible. With the DIEP or SIEP flap surgery, the skin and fatty tissue is taken from the tummy area and, with microsurgery, attached to the breast. With the LD surgery, the part of the LD muscle is tunneled under the underarm and attached to the breast area. With the DIEP, if sufficient fatty tissue exists, the entire breast can be made, although traditional implant surgery, where the implant is above the pec muscle and under the transplanted tissue is still an option; with the LD surgery, the implant is pretty much a must.
Anyway - one danger with the DIEP is if the PS cannot find a perforator in the tissue, he may go into the ab muscle (a traditional TRAM flap surgery).... I have heard that many PSs require you to sign a release saying that if the DIEP / SIEP options do not work, that they can do the TRAM.... my new PS does not do TRAM surgeries - if the perforator is not viable, he closes up the patient with just a tummy tuck.
Also, DIEP / SIEP are generally viable on woman with BMIs as low as 20 --that is very low -- depending upon the fat distribution in the tummy area.
Beth Isreal has movies you can watch on both operations - an MX/DIEP, and an MX/DP. I learned a lot from watching them, and it definitely helped me decide on the DIEP over the LD. The DIEP is micro-surgery, but if you find a doctor with experience.....
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Ladies, those of you eating protein bars or shakes have you found ones without soy? All the ones I have found have soy.
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Chickadee- I don't think there is soy in one of the shakes I'm drinking - Atkins Advantage - 15 g protein, low carbs/sugar. I like the strawberry. One shake has 160 calories. I would like to NOT gain weight on top of everything else. My stomach now sticks out further than my chest....Anyways, I have been researching DIEP this morning and I definitely have enough fat to do it, or to lend some out to anyone else
SpecialK - your offer to go prosthetics shopping brought a tear to my eye. Thank you for your kindness - I may take you up on it. I see PS tuesday and hopefully he'll pull the drain and I can start with some light fluffy kind of stuffing...
Woke up today with an incredibly bad attitude. Angry, pissed, self pity, blah blah blah. I am going to do some work on that for the remainder of the day.....I am not usually one to wallow around for too long but this has been building up all week.
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Thanks Jane. I am trying to lose a little of the weight that I gained while on chemo (shorts aren't fitting so pretty sure jeans won't either). Looking for healthy alternatives for lunch.
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I keep losing my posts! I had typed sorry for my idiocy about the soy in the Detour bars. I had eaten them a few years ago when I was working out a lot and trying to increase my protein, and they taste fabulous - didn't check the ingredients list, shame on me!
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SpecialK - To me it's all about moderation. I have not been very good about a soy free diet. However, I do try to limit it. We eat out a lot on the weekends and it is hard to limit soy if you do that. So I try to make what I do around the house as much soy free as possible. Doesn't always work, but I try. I find it very hard to believe that it was soy that brought this cancer on me. Just my take on the whole thing.
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My PS says I will have the completely filled TE's in for about 3 months! What's up with that?
Do you think men support each other through prostate cancer like women do through breast cancer? I feel sorry for them if they don't.
When I'm having a bad day I always know I can come here for a little comfort or guidance. Thank you all and God bless you.
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chickadee - I have not been able to avoid soy either - too many things I like have it! I agree about the moderation - we have already given up so much!
chiluvr1228 - 3 months? What the heck? And no, I don't think the prostate cancer community does it same way we do! I have to say a few of my husband's co-workers (male) have been really faithful about asking him how he is doing - and these are military guys. Pretty surprising!
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Chil - My PS also waits 3 months after the TE fill to exchange to implants….I'm looking at January hopefully.
Maria - So sorry that you've lost your TEs. Guess you decided after all to remove the good side too. I can understand why you'd want to be even on both sides (even if it means being flat), and start over eventually with both. All the best to you.
p.s. Don't know why my font gets messed up when I post.
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I don't know why, but I keep losing my posts....
Just_V: My PS wanted to replace the TE with the flap surgery. He was very surprised that I wanted the good one removed too...but I decided to do that just in case I decide to never have any recon done....It's quite a relief actually. And he said I can go ahead with recon in 3 months, one year or 6 years, whatever I want! He said, the longer, the better, because the skin will get softer and softer. I need a breather, I need to heal physically and emotionally, I cried for 2 wks straight....So hopefully there won't be any complications this time...There's a lot of soreness and I have 3 drains this time, but the meds are helping. Getting a lot of rest and will continue to do so for the next 2 week.
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Miasanta - I sooo understand. I am almost wishing I just had both TE's removed. I really feel I need time to recover from the emotional side of all of this, as you mention, which I didn't really expect to be so intense. Who knows - maybe in 6 months or a year or 6 years there will just be that many more options for us. I found a little mastectomy supply store in my town, they carry bras, etc, and wigs. I will check it out this week. I'm in a smaller town so I don't expect much but they actually have a website and it looks like a good selection, surprisingly.
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Scarves! Yes, scarves are in. I just had a brainstorm that I will buy some fashionable long scarve thingies that are in style and drape them around my neck/chest.....what a good disguise that will be.
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Jane! awesome idea! and as the weather gets cooler (even here in Fla.) it'll be easier to pull it off! I actually own one of those long scarves and I've seen them at Target. xoxo
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I did the scarf thing a lot when I was trying to disguise, then it got too hot. It will be great shortly as it cools off here. I had some problems with hat and scarf combo because I am short - I felt over-accessorized! It is a great solution though!
miasanta - how are you feeling today?
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Hi,
I had my TE removed two times..first time I developed severe necrosis after my mastectomy and so the TE was removed along with much skin..Then I needed Latflap surgery to make a new breast..I went the slow route to avoid further problems ..unfortunately this time I got the MRSA virus in the hospital and had the second removed. The third did the trick. Unfortunately I decided to have my other breast removed this past April prophylactically..( the radiologist scared me into thinking I had BC once again) ..So now I have another tissue expander in ..
You know what.. it doesn;t bother me at all. I call all this reconstruction stuff..fluff. I have had ten surgeries and am still optimistic and I do put the cancer behind me..
Hugs,
Francine
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Crusader1: Wow you are amazing! You've been through it all. So good to hear your positive attitude shining through despite your setbacks.
Thanks for popping by to share your story!! Sometimes I feel like we're on our own little island over here in TE Land. Patience really is the key. When will your exchange on the latest TE be?
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PS yes scarves are good, as are sweaters or hoodies around the shoulder and tied in the front!
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Made it through the weekend taking it easy and went for a short walk today. I think my son got my mom sick (cold) when she was here helping after the surgery. Not too happy about that. SpecialK you were right about being surprised about how good I feel.
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crusader - love that you are so positive after all you have been through! I would do the same as you with the other side - who needs the anxiety, right? That is exactly why I did a BMX off the bat.
ren - us Florida girls can't do the hoodies and sweaters yet - it is too dang hot still!
chickadee - excellent on the walk and feeling good! Sorry about Mom and the cold.
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Hi,
Renasus and SpecialK..We all do get through this..Hard to believe at the time one is going thru it. But its funny my first TE bothered me as it felt sort of fake,hard etc ..this time I don't care how it feels. All I want to do is get a little more to put in my bra. I use a sport type bra with padding and it works pretty well.
Since I had necrosis with my latest tissue expander also I had to wait till it healed in order to begin fills. Fills finally began late June but they are doing it very slowly. So now I get 35 units each time. I have a small mound now. I go back this Thursday for fill 4 or 5. But the exchange will probably by the end of this year..
Nice group of ladies here.
Hugs,
Francine
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My last drain from the infected breast was removed today! Yeah! PS didn't have to remove the TE after all. Last week with all the pain I had from the infection I wanted them both OUT NOW. But I'm actually getting used to them. I still feel like I have on a too tight bra but it's not so annoying now.
Jane I am so sorry about Scooter. It's so hard to lose a beloved pet especially now when we have already lost so much.
I also had a good cry about 10 days after my DMX. I got undressed to take a pseudo shower and really saw myself for the first time. My TE's were filled minimally after the surgery so my breasts looked like a combination of a hamburger bun and that fruit called "ugly fruit".I started crying and couldn't stop for about 2 hours. Let the tears come! They are therapeutic for many people.
Although I was a D, sometimes a DD cup they had sagged tremendously in the last 20 years and I really don't miss them too much. I'm currently a large A or small B and I don't have to wear a bra or worry about trying to find a button down blouse that will actually button across the girls.
I'm still scared and angry at times but from where I was 4 weeks ago I'm doing well.
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crusader - So glad you are doing well and have a great attitude. I too am a necrosis girl - is that a weird statement. I am going low and slow with fills too - I had my second today, 25cc. I am cautiously watching the compromised skin on the prophy side. Right now I am only getting fills on that newly replaced TE to even it up with the other side. I will most likely exchange toward the end of the year as well.
chiluvr - glad you are feeling better and that you lost the drain but kept the TE, yay! - sometimes a good cry does put things in perspective! If it makes you feel any better my TE drive me nuts too but it is a means to an end, and not permanent. It is good to remind myself that the TE is there in prep for something better down the road.
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Hi,
I agree that the TE's are annoying but they do serve a purpose.
Wow someone else is getting those small fills..Special K..Interesting. Yes I too have been quite aware of compromised skin..Thank God I am through with these worries..Hopefully.
Hugs,
Francine
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crusader - I hope you are out the other side of the problem tunnel too! I am willing to take some time to reach full expansion, partly because it has been a challenging road to get to this point. Also, small fills will probably hurt less! I am doing some physical therapy and I think faster expansion would be more uncomfortable, chemo caused some wreckage in my node arm that I am trying to recover from!
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So nice to have a place where necrosis, delayed healing, incision seepage, infection, and raisin skin can all be discussed with regard to our various coconut shells and we all understand! Thank you ladies for breathing life into this thread. When I started it I just knew there were more of us out there!
I am counting the days until Dec. 1 when I get my new expander. It will fly by. Then PS is planning to give me incrimental fills too (likely 25ccs at a time). Baby steps. Except at the rate I'm going, when all is said and done I could have given birth to two babies in this 18-month time-frame I've got going on. Yikes!
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ren - I am giving birth to two babies, they will be weighed in cc's and live in my bra! I agree, it is nice to have others in our particular boat - comparing notes and learning from and supporting each other is priceless!
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Wow! Things are busy here in Necrosis-Mimosas-Ville (only thing I could think of that rhymes...)
Crusader - Thanks for your wonderful optimism & great attitude, you me reminded of of Pooh Bear's "oh stuff and fluff" and yesterday after I got my drain pulled (hooray! for little things) I marched into a little local mastectomy supply store and when the woman greeted me at the door and asked what she could help me with I told her "I need some fluff and stuff!". I walked out of there with a new bra/prosthesis, 80% paid for by my insurance. I am so glad I went in there. Because it doesn't sit flat on the skin, they told me I can wear it now, even while I'm still healing, and it certainly is comfortalbe. I felt so much better going into work last night wearing that thing. BTW, I also was in the small fill club - I did 25 cc about every other week, I was having fills starting last February up until about a month ago when things started looking bad. Can't get much slower than that but I was okay with it too. My PS told me yesterday we'll have to wait and see what my options are, too soon to tell, and mentioned possible "other surgeries" before the next expander, so I guess I will just be patient and wear my prosthesis proudly.
Chickadee - glad you're up and moving and feeling better. I have been amazed at how good I am doing physically since the surgery to remove my expander. Now that I can drive and have the drain out, even better.
Ren 12/1 will be here before you know it....all those fun holidays in between now and then. Plus - cooler weather here in FL, I hope.
Love this group.
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I just love visiting here and reading all your posts.
I am doing quite well. Had my follow-up with the PS yesterday and he's happy with the results of my flap-surgery (though I'm sure he's disappointed he's not making me some new boobs..idk). One drain was taken out, I still have two, which may be removed on Friday, at least one of them.
I'm just happy that most likely I'll be able to heal and go back to work etc. I'm sure after awhile I'll want boobs, but for now I don't really care....
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miasanta - awesome on feeling good and happy that your progress is so good! Getting some normalcy sounds like a good thing right now!
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Mia - I understand completely... I am sitting here with a boob and a boobette (no - not my co-workers!), and am happy that I am no longer oozing anything and do not need gauze (geez... I HATE the smell of it!)... but I will get the recon but I am not in a big hurry - we (DH, DS, and I) to go to San Francisco in Oct and my husband said but what about the surgery - I told him that I am done scheduling my life around the surgeries and would start scheduling the surgeries around our life....
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