TEs. A Beginner's Primer
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I like that quote - a lot! I did go for a walk today. A long slooooow stroll. The willow trees are budding out and the daffodils are blooming. The birds are mating
Today will be much better.0 -
I see you have little ones. That's a lot of fun. But hard! Take care.
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Those are my granddaughters. Thank God this didn't happen when I was a young mother.
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that IS better! I do know one young Mom with 2 littles. It was found when her baby was 4 months. She's doing great though. Cancer just sucks.
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I am so grateful that I don't have babies and nobody who really, truly needs me. Cancer really sucks for anybody but for young mothers it's got to be worse than for anybody else.
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Stacie. . .I second Moonfwr's advice. I wasn't taking enough pain meds because of nausea. PS upped my meds and got me on an anti nausea med that worked. It's hard to rest or heal when you'return in pain. These boads and my table saved my sanity after BMx. I really was immobile for awhile.
Scottie
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Thank you, Scottie!
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Stacie- in glad your slow stroll helped. Hopefully your drains will cooperate. One of my drains played head games with me for 3 weeks. I hope your walks can help take your mind off of everything that's happening. My recovery from TE placement had been so much longer and more difficult than my post mastectomy recovery. I've found it difficult to get living and keep my mind focused. I've been able to do a lot less of the things I love. I keep telling myself it's only remporar
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I got my 3rd fill today. I've been going weekly for 60 cc. I'm at about the halfway mark. So far the only issues have been my skin. PS gave me moisturizing cream to try and help. I'm just glad it's not infected at this point. The one weird thing is that I have this area between my breast and the insertion point of where my last drain was. It's a a little over an inch long and feels like the drain tube is still in there. PS says he has never seen anything like it and that it feels like I've got a rope in there. He also said if he didn't know any better he'd swear a piece of the drain tube broke off. Weird! Anyway - if it doesn't clear up he's going to go after it with a scalpel. Yikes! Most days I seem to tolerate them okay - today I just wish I could take them off for 10 minutes to breat
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Ringelle, could it be truncal LE?
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Ringell, I'm guessing it's scar tissue that can form quickly. If it's firm that's what it probably is. But your doc is watching it so seems like it will be fine. Hugs. You sure are having Scenic Detours aren't you?
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I got 3 of my drains out yesterday and woke up this morning with a jiggly accumulation of fluid under my right tissue expander. I hope my body will absorb it. I got my first fill yesterday too - can't tell much of a difference. Yesterday was my first time seeing my scars.
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(((StaceySue))) I know it is hard the first time you see the scars.
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Hi everyone- I'm trying to catch up here, sorry been Mia lately. My mom had a cardiac scare and this morning my 24 had a biopsy on a very large lymph node. Crazy chaos here!
Ringelle- how is the expansion going? I saw where you said you were doing 60 a week. I wish I was going that fast but I know I have to go slow because of my skin issues. I am getting 100 in every 4 weeks. Had 120 at surgery and now 2 fills for a total of 320 so far. My next film is next Friday. Not sure how much I'll be getting overall. I know my expanders are 550s.
My chest still hurts. Not tight hurt just achy. Achy like after surgery. I find that if I wear a tight fitting sports bra, it helps and if I go with nothing I hurt a lot. Waiting for appointment with gyn onc. Plan is for oopherectomy at the same time as my exchange surgery. More fun ahead
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First, Thank you for creating this topic as a forum. I have read through most of the post and found some interesting and helpful information. I am five days away from a double mastectomy with TE. I, like many of you, am someone who feels empowered if I have knowledge of what is going on, what could or might happen and how I can best prepare for it. Like all of you I am sure, the anxiety and apprehension mounts more each day as I etch closer to surgery. There are moments when I take extreme comfort in knowing that I am not alone, that there is the unfortunate circumstance that many have come before me. There are also those moments where panic sets in. I am extremely grateful to have an early diagnosis and look forward to the future. Just ready to get this big rock out of the middle of my road. If some of you don't mind, I am interested in direct advice on the first five days including the hospital stay. I have read info about how you feel when you wake up and the first 48 hours. Just want to do my best to avoid freak out mode. Thanks in advance....all advice appreciated.
Dx: 2-12-2016 4mm IDC, pre-invasive stage 1, grade 2, ER+/PR+,HERS2+
Surgery 2/18/2016 Lumpectomy Sentinel Lymph node removal (neg) Downgrade to stage 0, DCIS High risk family history/only one of five margins clear
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Dear chapagonzo, Welcome to the community. We are so glad that you reached out and posted your story. We will be thinking of you especially over the next week as you prepare for and undergo your surgery. We are wishing you a speedy recovery. Keep us posted. The Mods
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Chapagonzo - I had a unilateral MX 8 weeks ago with TE. I had concerns about some of the problems of TEs after reading posts here and in other threads, and asked my PS about how to avoid the pain and discomfort. She said that she uses a newer version of TE - Mentor CPX4 - that is less rigid than the older style. It was just approved last year I think by the FDA. She filled only 60 ccs during surgery and I've had 2 50-cc fills since then (going slow!). I have had absolutely no discomfort or tightness since surgery. I don't feel the TE at all (although I do see it in the mirror!) and most of the time I forget it's there. I've been told that the discomfort may increase with expansion, but so far I haven't had any complaints.
I also wrote about my "good" surgical experience in the Pain thread and in the Surgery thread, if you are interested. You can just go to Search, and enter my login name (grandma3x) in the Search by Member Name box, and select the "Pain" or "Surgery-before, during, after" category/Forum threads. In the Pain thread, it's under "Choosing Anethesiologist is as important as choosing a Surgeon" and in the Surgery thread, it's under "No pain, no nausea".
I'm sure there are many others who have been through MX with little pain and discomfort and it was reassuring to me to read about these women before my surgery. I do not in any way want to discount the significant and ongoing pain felt by others, though. There are a lot of factors that contribute to outcome, but as you said, knowledge is power and preparation can sometimes make a difference. Best wishes for your surgery!
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Stacey - Yeah! 3 drains out! Sorry you've got some fluid building. My PS says he actually doesn't worry too much about the fluid - he just tries to account for it and uses it to his advantage. I was relieved since I had so much trouble with seromas after my BMX. I didn't see too much difference in my first fill but after the 2nd and 3rd I felt much more noticeable!
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BethL - sorry to hear about the chaos and scares with your mom! I wish we only had to worry about one thing at a time! My fills are going pretty well. My only issues are sleeping and waking up! LOL I can sleep when I take my pain meds and a muscle relaxer but wake up groggy. I feel like taking all that medicine just to sleep is a bit over kill but I get a better night's sleep! Waking up in the morning I feel like I have to spend an hour talking the elephant off my chest before I can even sit up! Once I'm up and going I'm pretty good for the rest of the day but I'm exhausted by 6pm. My skin is not happy about all the expansion but moisturizer from the PS is helping ALOT. Hoping that settles down a bit. I will fill again on Monday and that will take me up to 390 cc - then I will have a two week break. Kinda looking forward to a bit of a break. I've noticed the more I get filled, the achier I feel. I started PT Monday - I don't think that was a good idea. I'm going to ask to back off of that.
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Chapagonzo - I'm sorry you are going down this road. Yes - this is a pretty hefty road block. Unfortunately, my BMX and TE placement was 6 months a part. My BMX was relatively easy from a physical sense but the emotional stuff lingered for a few weeks. I was back to work in 2 1/2 weeks but wish I had taken at least 3 1/2. My TE placement was 5 weeks ago. Physically that was definitely harder. My PS explained to me that from his perspective when the TEs are placed at the time of MX, it's usually what the PS does that causes the most pain. So, I imagine, combining the two procedures is tougher but more closely related to my TE experience. I barely remember the first 48 hours after surgery. I was in the hospital over night and can't get anything that happened there straight in my head. I had a pain pump which was wonderful. I would try to use the restroom (pee accountability) and I would fall asleep and then start talking to myself! It was quite amusing. I didn't want to eat at all (except chips). The most frustrating part was not knowing how to adjust myself in bed or on my recliner. I was glad I had strengthened my core before hand. I learned to scootch pretty well. The ride home was rough - I recommend little pillows to cushion yourself. Like most recommend, stay on top of your pain meds. It will help you to rest easier and to stay more comfortable. I've learned that every surgeon does things a different way. You will probably have some sort of dressing/bra on when you wake up. As soon as you are able to see yourself, look! Get it over with. I forced myself to and it helped not thinking about it over and over. Just remember, you are not alone. Ask any questions you can think of!
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Ringelle, i have the same thing as you do with the drain lump. After that drain was pulled there was an inch long 'lump' that appeared to be tubing... looked like it, felt like it. My PS was not concerned and my PT said it was scar tissue and showed me how to massage it. That was 3 1/2 months ago and it is almost gone. No pain or redness at any time. My exchange surgery is next week and i will have drains once again. I will be curious to see if my scar tubing forms again. Out of 4 drain sites only one reacted like that.
Diane
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Ringelle - so you reminded me that the elephant on my chest had been gone over a week. I know exactly what you are talking about!! I was more than 2 months from surgery, felt OK upright but in the mornings I had to roll out and out a pillow over my chest when I did so. It's probably only been about a week or so but it's gone! Dominant do anything differemt, just stopped. Hoping it doesn't return after my fill next Friday
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fat thumbs here, sorry! Not dominant but "didn't" lo
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I sent a message to my PS about the seroma and his nurse called and asked me to come in this morning. She gave me another fill to decrease the amount of "empty space" between the expanders and my skin, and drained what she could of the seroma. She recommended I stay compressed as much as possible. I bought some nice tight undershirts because I'm tired of the compression dressings from the hospital. The shirts are tighter and provide more compression. When I took off my shirt tonight, though, the seroma was back bigger than before. It's not pretty but I'm glad I got the extra fill today and I'm feeling like I'm finally growing boobies again. It's like going through puberty LOL - when they grow they get sore.
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Chapagonzo,
I'm almost finished recovering from a double mastectomy with TEs that I had done on the 25th. My anxiety and apprehension leading up to surgery were so awful that I really didn't sleep much at all for weeks. Every time I woke up in the middle of the night I remembered I had cancer and had such a hard time getting back to sleep. I am so much happier now that the surgery is done. I don't remember much at all about being in the hospital except getting up to use the bathroom and I guess I must have started to pass out, maybe I actually did pass out but managed to back up to the bed in time that I didn't wind up on the floor. Three nurses came and after that I had a bed alarm on and every time I sat up nurses would appear out of nowhere! Make sure to ring your call light when you have to pee and don't try to walk to the bathroom alone. I'm glad the nurses were there, otherwise I might have fallen. I kept forgetting everything they told me. Nobody warned me my pee would be bright blue! It's from the dye they use to check the sentinel nodes. They kept me pretty well medicated and comfortable. When I got home I kept taking my meds the same as they gave them to me in the hospital, for about 2 days (a pain pill, then 2 hours later a valium, then 2 hours later a pain pill), then slowly tapered off on them. The pain really wasn't that bad at all compared with the fear and anxiety I'd had leading up to surgery. After the surgery, every time I woke up I remembered the surgery was over and the cancer was gone and went back to sleep. I slept about 15 hours the first day home and 12 hours a day for several days after. I think I'm still sleeping about 10 hours a night. The dressings I woke up with stayed on for almost 2 weeks, when I had some of my drains removed and had my first fill. So I couldn't see my incisions, just grey strips of material covering them, underneath a transparent dressing. Things felt lumpy and the drains were particularly annoying under my arms and made my armpits look funny. For the first 1-2 days at home every time I got up to empty my drains in the morning I felt faint, then I realized it was better to get some orange juice in me and wake up all the way before trying to stand at the sink for any period of time. After 5 days I started walking in the park every day, slowly and without swinging my arms at all. I had a friend with me the first couple days and only went a mile but I've been walking more every day and I'm up to 4 miles per day now. I can swing my arms more now. The sunshine and fresh air are working wonders for my spirits, and it's hard to look at my naked breasts but I've got 300cc in each expander now and I'm starting to get cute little breast shapes again. It's a little sore after the fills but really not bad at all, and having the drains removed was a piece of cake. I hope it goes as well for you as it did for me.
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Staceysue, Thank you for that. My BMX with TEs is on 3/30. Your story above helped me so much.
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warriorwannabe and Chapagonza, welcome. This is not an easy thing. You second think yourself a lot. That's normal. We all do. For you and other new people who may be following but and afraid to post, the only thing that is the same for ALL of us is the fact we re here. Other than that, we are all different. We work toward the same goal, but our paths may not be exactly the same. Every PS s different. Some want tight binding some don't. Some allow showers. Some don't. So make sure you ask your surgeon about restrictions and bras or bindings. Most of them have protocols They Follow FOR A VERY GOOD Reason. They see them WORK. They usually have hand out sheet or the nurses will go over them with you..
And, just as there are many different instructions, there are many different surgery recovery stories. Remember that most people do get through surgery with no problems. And most of those people never post. So more posts from people who may have had a rougher time. That's just the nature of self help forums!
I am hopeful things will go well for both of you and wish you safe surgeries and fast healing.
Bethl I'm glad you're doing better. And I hope your Mom is better too.
Stacey, keep an eye on your temp and keep checking for redness around the seroma. They usually don't cause problems but doesn't hurt to keep checking.
Grandama3x I'm glad your experience was easy. I wish more people with uncomplicated surgeries would check in. LOL
Much love to all.
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interesting TE experience today! We went to my daughters Lacrosse games this morning! Three Plus hours and I was not dressed warmly enough. I'm feeling really sore because my tensed up from being cold! Makes sense now but never crossed my mind about being an issue. I guess I'll be making sure I'm dressed warm enough from here on. Glad we are entering spring!
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Diane - thanks for the feedback. I too think it's probably scar tissue. I've been trying to massage it regularly so hopefully it will start to go away. The redness and dryness I was experiencing is finally cleaning up. I have to keep moisturizer on my skin all the time.
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Curious - do you all bruise at your fill sites? I didn't after my first one, only a little after the second. This last fill bruised slightly on my left but we had a bleeder on the right and I now have a huge bruise over the fill site.
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