TE TROUBLE
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Afternoon ladies, glad to hear some are doing better. I go back to the PS today at 2:50, really dreading it. I did make an appt for a second opp for 10/25 so maybe I'll get some answers then. Try to learn to live with my new chest. It's way harder than I would have thought and I still can't sleep well, I don't like the feeling of waking up realizing all over again that I'm not physically whole. Still sore from the ooph. so still moving a bit slow. Everyone I've talked to has come to the same conclusion, that the TE was way overfilled and this cause the tissue to rip and become inflammed. I don't blame my PS, we both got boob envy, just don't know why he did back off when he initially saw the red area, which was 3 wks before exchange surgery and why now he's insisting that it was an infection. I know alot of this I'm going to have to let go of, if I am to move on, but it's really hard. You guys have been a great support and I thank you from the bottom of my heart. Thinking of maybe going out to friends with BF tom, need to stop hiding from the world.
By the way, I don't know where to start as far as being fitted for a foob, any suggestions.
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survivor - Thinking of you and hoping you are feeling better. I just quickly googled mastectomy bras in the town below your avatar and what comes up is in Louisville. I don't know how far away that is from you, but I am sure any of those shops will be able to take care of you. You might also check with your insurance and see if there is a specific place they want you to be fitted. Probably a good idea to get out and be social - take your mind off of things. When I had my BMX they gave me a camisole with the drain pockets. Included with it were two stretchy cotton pillow things to use for forms. They were stuffed with a fuzzy lamb wool material. I ended up using one of those a lot because it was weightless and very comfortable. I just put it in a stretchy bra and pinned it in place so it couldn't migrate. Worked fine in the short term. I don't know if you have any of those but that could work. Another thought is the chicken cutlet things that are rubbery (is that a word?), they are just kind of heavy and need to be worn in a pocket or they will definitely fall out, take my word for it. The last thing you want is a wardrobe malfunction - thankfully mine fell out in my own kitchen! Also remember that ruffles are your friend - you can camoflauge that fact that you have nothing over there with some well placed ruffles on your shirt.
Take it easy and don't overdo it - you are post-op!
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Survivor - I actually have used a very soft sock stuffed in between the layers of a cotton shelf bra camisole. I used those camisoles a lot while my necrosis was healing because it would hold the bandages in place - after a few months my skin couldn't take tape. There is a web site someone on BCO started about this stuff and I am going to go find it right now - you might get some help there.
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survivor - its www.breastfree.org, there is info there on all sorts of options and also links to websites.0
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Yes SpecialK I do find it odd/funny that my PS is starting to ask about all of you. I think he just wants to make sure I am not getting more paranoid then I already am. The other thing he said today was something about perfection. I told him I wasn't looking for perfection, I just wanted some foobs. He said he was looking for perfection. Great.
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Survivor, I had good luck using yoga bras & yoga tanks that had removable bra cups because they have an opening to stuff whatever kind of inserts you want into them.
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Chick - interesting comment about 'perfection'. I wonder if it's a PS thing. Mine also told me way back that she's a perfectionist. While my oncologist has reminded me every time I see him, that they'll never be perfect, and not to forget that the goal is to look good in a bra…..I agree with the onc. I don't want to be disappointed with the results so I'm keeping my expectations in check. I just want to look decent with clothes on.
Dawn - hope you get out of the house and get together with some friends….good distraction/change of scenery. Glad to hear you got an appt with another PS. Re foob shopping, where I live we have a specialty store for mastectomy products and wigs/scarves. It made shopping for a prosthesis, bras, bathing suits so easy, and the owner and her staff were just wonderful. The hospitals here give surgery patients the store info and a coupon for a free post-surgery camisole. I'm in Ottawa (Canada). Prosthetics are covered by our public health insurance at 75% and my work insurance covered the balance, and covers 4 mastectomy bras per year. Pretty good deal. I hope you're able to find the same type of store and that you have similar insurance.
Jane - lucky you living in Florida! I wish. Mind you our weather here this summer and now has been great. Tomorrow's forecast is 27 celsius, which I think is in the 80"s. And we have a long weekend. Monday is our Thanksgiving…I LOVE long weekends!
Mich
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Survivor- glad to see you back here and to hear you are doing a little better. I think it is a great idea to get a second opinion at this time. Hope your appt went well this afternoon.
This is off topic but I am wondering how the ooph went? I have one in about a month and am looking for info from people who have gone through it. How uncomfortable is it and how limited are you in moving around? Any menopause symptoms? I know it is secondary to all you are dealing with right now but any suggestions are appreciated.
Ginger
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Here's where mine came from....just sayin....
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Fluff why are you all pink?
Happy Saturday all! I am sore today from that last fill, espeially on the side that hadn't been filled for a while. Ouch.
SpecialK and all Tampa friends, sorry about the Rays but YEAH for my team!!!
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I don't really feel like going back to work. I was quite enjoying being at home!
Hope everyone is feeling well (or better, at least) & is enjoying the weekend.
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Again, thanks for all the support ladies. This part really did send me for an emotional rollercoaster, but I am feeling a bit better now. Went to late movie with BF last night and it was nice getting out, was still selfconcious but you have to take baby steps.
Trinity-so glad to see you back on the threads girl. Thrilled that your doing so well. Even as bad as Mon was for me, you kept crossing my mind and what little positive energy I had left I was send it your way. Continue to heal quickly my friend.
Gamergirl-you have been on my mind since your post. As devastated as I've felt the past week I remember where you are at right now and how your dealing with it and it gives me strength. I know your new dx has thrown you and trust me I know how you have to find your own way of dealing with it in your own time, but you know your going to beat this right? You know how strong you are. Once your feeling up to it, dig your heels in and kick this MFers ass that is cancer. You are in my thoughts and prayers and even though we'ver never met, I am sending you all my love for a speedy recovery.
Ginger-the oop. went well. Have only one puncture whole at the bellybutton. They did the case laparoscopicly through a uniport (only one port site) to decrease chance of infection. Have been pretty sore up until today, but pain meds help. Able to get around pretty well,first couple of days very slowly. Main issue has been back and shoulder pain from the nitrous oxide they blow your belly up with, but all and all not to bad. Have noticed an increase in hot flashes, but again not to bad. Has been nice to have the reassurance that I've taken put another potential for cancer, though. Good luck.
Went to PS yesterday. One drain removed. Still not getting any real information from him. When I asked about prosthesis he said he wouldn't even discuss it and would not even a script for one for another 3 weeks. Also said he didn't want me to wear anything on my chest, not a sports bra, nouthing and when I asked him what I was suppost to do to cover huge defect, he said just wear big shirts, is he kidding. Has no concern whatsoever about my mental health or selfesteem. Still insists that it was an infection although all cultures/blood work are clear, I know what happened, he way overfilled and I'm not blaming him for it, it happens, and the tissue ripped from the inside, but he won't admit it. Very defensive and still won't give me any idea of a timeline for anything. Very frustrated, but like I said earlier have appt for second opp Oct 25th, hope to atleast get some answers from that guy. Going to try to get my records from the hospital next week.
Will keep you updated.
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DLL66 - How long have you been off from work and how long are your shifts? I have been off since my BMX on July 14. I was supposed to go back around Sept. 15 but my left TE sprung a leak and had to be replaced. I am scheduled to go back on October 18. I didn't have radiation or chemo. I sort of feel like a wimp for staying out so long, but I work 12-hour shifts and stand and use my arms a lot. I also have to drive over an hour each way, so it makes for a very long day for me. I have been wondering how long everyone stays out.
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Chick...I am all pink because i got a new ipad and have beenplaying with it. Took a pic using the camera and then downloaded an app called camwow. You can do all kinds of funky thinks with photos. I figured where better to but a pink picture of myself than on this site during BC awareness month! Bahaha..seriously it is coming down tomorrow as soon as I haul out my laptop.
Susvivor-i feel so badly for you. I didnt let my husband see anything for ten days. It is hard to adjust. I made a calendar with a countdown to the implant and just crossed it off a day at a time.0 -
jbennett38, I took 2 weeks off after BMX, another 2 weeks off for my first lat flap w/TE placement & 2 weeks again for the 2nd lat flap w/implants. I work full time, but my shifts are anywhere from 6-9 hours. I'm on my feet the whole time & usually don't get a break or lunch. I worked through chemo & rads, but my shifts are a lot shorter than yours, plus I do a lot of closing shifts (I am an assistant store manager). I worked my scheduled shift the day I had my port placed (& they had to knock me all the way out so they could try the other side). I also worked my scheduled shift the day my PS removed my TE in his office. It was doable for me, but I'm a little crazy like that--working has been a great distraction, although I do quite enjoy staying home instead!
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Feeling a bit about all this everyday. Still struggling, but better emotionally I think. Last night went over and had dinner with some friends and BF and I went topless for the first time in public. I just thought F it, I'm tired of feeling ashamed/embarrassed. It felt good. Hoping that big step will help me get over the mutlilated feeling I still have after the mess on Mon.
Hope all are doing well and you have a great Sunday.
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So just taking a poll, what has been the average time you ladies had to wait after TE removed from one problem or another, before you had it reinserted?
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Congrats on going topless, Dawn! You seem a little better---I hope that you are feeling better physically & emotionally.
I had my TE removed & then had implants placed 11 days later. No infection. I was given the option of trying again w/the TE or going straight to implants.
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I had mine re-insersted right away. I was leaking (hole in TE). No infection.
Congrats on going top less. I hope to be there in about 2 weeks. Just curious, how long is your hair? Mine in about 1/2" in most spots. Dying it this morning with a semi permanent...lots of gray.
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Has anyone else experienced a leaky port in their TE? My left side leaks a little after each fill, but stops after a little bit of time. Its leaked after the last three fills. I'm up to 540, goal is 800-900 and I'm paranoid this sucker is going to fail before I get to the swap point. I keep checking to see that things look "even", and they do. Someone please tell me to quit stressing!
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MTnester- that is where my PS thought my leak was, however it wasn't, I actually had a hole. We tried twice to fill me up (it was my last fill that I started to notice the problem) but each time I would deflate noticably smaller. In order to get the size I wanted I had to start all over.
I have a surgery date....11/14!
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Hair is about 1/2" long, still have alot of scalp showing but I thought WTF.
Still dealing emotionally with all that has happened in the last week. Sometimes I do okay, but end up crying all the way home after PS appts, had one today, had last drain removed. I can't figure out if it's the way I look now that bothers me so much or if it's the fact that he doesn't want to even place new TE til end of Dec and there is still no signs that there was an infection. Really struggling, but just taking it one day at a time. I know I wasn't this devistated with the initial BMX, maybe cause TE were placed, maybe because I had prepared myself. I went to sleep last Monday not even knowing that I could ever wake up with nouthing. Seeing my OB/GYN tom since I also had oop. Going to ask her to put me on something cause I'm worried that the last 6 months have caught up with me and now I don't even really want to go out of the house, or see anyone except BF.. Would really like just to crawl in the bed and come out 7 months from now.
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survivor - I had my left TE out for 6 months during chemo. I did not have an infection but I had severe skin healing issues and after 3 tries to stabilize it the TE came out. I had already waited longer to begin chemo than I would have liked but they had to wait for me to heal. I also had to wait about 6 weeks after the end of chemo to have to replacement TE put in. I am thinking that maybe you have been more emotional due to the oopherectomy, because it is messing with your hormones. Maybe a good idea to talk to OB/GYN about something to take to see if you feel better. I just started going without a wig/hat about two weeks ago. I also have about 1/2 inch of hair - not that I have done it I don't think I can put the wig back on again. I have gotten some weird looks but whatever - their problem, not mine.
All - had to go today for a urinalysis. When I had Herceptin last Thursday I saw the doc. They want to make sure I don't still have a UTI. I am supposed to go to the PS tomorrow for a fill - he put it off last time due to the infection - didn't want bacteria to travel to the TE's. I have to call the MO office to see if they saw any bacteria under the microscope before I go to the PS. They will still culture it but if they see no bacteria I will go ahead to the appt. I also have an echocardiogram tomorrow afternoon. Doing that after a fill could be problematic also...
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Survivor11- When you said topless, I thought you meant shirtless and I was like WOW; those must be some close friends. I am caught up now.
I agree that part of your emotionality might be from the ooph but you have been through so much and it is a good idea to ask for some help so you don't spiral down into depression. I have a good friend who went through bmx, chemo and radiation and she said when it was finally over she cried for weeks. She had been holding it all in for so long and being strong. Lean on all of us here and take what you need to get through.
Ginger
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Jbennett38- You are not a wimp! I had my NSBMX on 6/22 and because I am a teacher was off for the rest of the summer.I had to skip teaching summer school this year. It worked out great for getting fills but we tried to squeeze the last one in before school started and sent me into muscle spasms and pain.Have not had good sleep since June.
I felt like I should be more than ready to go back to work(no chemo or radiation for me either) so I adopted the "fake it till you make it" strategy. I teach special ed preschool which is a pretty physically demanding job and after about a month realized that I could not keep up this pace. I had to cut back to 3 days a week until after my exchange surgery and ooph. It was so hard to accept this but I finally realized that I have been through a huge life change and my body is still healing and trying to figure out what the he** these things are that are pushing against my pec muscle. Sometimes we need to listen to our bodies and not our minds.
It is such a personal decision but if you can afford to do it give yourself the time to heal.
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Dawn-i had to wait 3 months but i had an infection that we had to clear up.
Don't feel bad about needing something. When I was diagnosed, i really did not handle it well. Couldn't eat, cried at everything, lost wait, heart was beating hard and my usually normal bp was mildly high. My bff,the nurse practitioner, diagnosed panic disorder and put me on the lowest Cymbalta dose. It was a lifesaver for me.
You can't take it with tamoxifen tho. I wen off of it before startin but hot flashes were so bad the onc put me on pristiq. Hasn't done much for me so I am curently getting back off.0 -
Thanks ladies. Every piece of advise I get from you guys helps, it really does.
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SpecialK-Here's to getting a fill today!
Today I get to pretend to be a 5th grade teacher. It's a good class so I shouldn't be too worn out.
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Hi ladies...back from St. Augustine. It was wet but so much fun.
Survivor...I had to wait 6 months, and my right TE will be replaced on Nov. 30th. But I had a staph infection on that side and she is very cautious. Also...still have the lovely red patch on my torso under the left TE (good side). I think it's heading in the same direction - that the tissue just can't be pulled any further. I see the PS this Friday, and I bet she stops the fills until we figure out exactly what's wrong. ((Why is there always something wrong?!?!)) Then Tuesday (a week from today) going to 2nd opinion dermatologist, who is also a surgeon and is who my PS uses. Hopefully she can figure out what's wrong. Still no pain, no itching, just frustrating as heck everytime I look in the mirror. Good to hear that you're getting out and about.
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Survivor - I saw my PS today and he told me he won't even discuss next step/surgery for another 2 months (which will be 3 1/2 months post TE removal). He states it depends on how things heal, he still feels there is a possibility we can put another TE in. The nurse of the 2nd opinion doc I am seeing tomorrow told me over the phone if there was infection it would be 9 months before he would do another surgery. Good for me I'm in no hurry to do anything right now.
Momof3- glad you enjoyed your trip to St. A but sorry to hear about the red spot. Hope it is nothing.
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