TEs. A Beginner's Primer
Comments
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Scottie - While I haven't found the time to read the book, LOL, I love this quote under the caption of a cat dosing: "Cats know everything there is to know about meditation." :-) I get you completely about excitement and dread at the same time. Only--I am not excited yet since I am just staring down the road.
SpecialK - Your story... I am speechless for all you've gone through. It sounds just bloody awful as my NZ would say. Have all those surgeries had much impact on your memory or anything from all the anesthesia? Do you have any mound at all from the fat injections on the bad side? Your story does give me tremendous pause--am I doing the right thing or should I just live with my uniboob and ugly scars? ugh, ugh, ugh. No wonder you know so much about this arduous process. And to have all that happen on top of finding out you had positive nodes and had to have an ALND. Not to mention getting bc in the first place. I don't talk about these things with my "normal" friends. I honestly think they think that it's a simple breast augmentation procedure and then you're almost as good as new. Going to bed now with my mind turning over and over.
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katcar - no long term issues from anesthetic, or from chemo. I have had the most trouble with back to back surgeries - I had six within ten weeks at the beginning, and then three in three months last year - it just takes me longer to get out of that bleh feeling - usually I need a week for every hour of anesthesia, but when I am back in surgery quickly that goes out the window. I am fortunate that I am not working though so I just take my time, eat well, and rest, and after a while I am back to normal. A number of these surgeries have been done with Propofol, which works great and leaves less anesthetic hangover for me. If the surgery is more involved it is not the best choice though. My left side is flat, the amount of fat graft is not for aesthetic purposes, just to strengthen the skin, so they are putting in fairly small amounts - it is usually done in increments, much as they do for rads skin. I have to wear a fairly substantial prosthetic to match my 650cc implant on the right. I have taken this experience in bite sized pieces - I was more scared initially because I was Her2+. I was well into things before I knew about the nodes, so I was past the initial period of shock and disbelief about having breast cancer. My positive node situation was unusual in that I had 20 IST in my cancer side SNB and a much larger node further up. My pre-surgical MRI never showed any issues and no suspicious nodes were palpated so it was a surprise, but by the time I had ALND I was three months from diagnosis. As a result of the ALND, and SNB on the non-cancer side (which turned out to have ADH and ALH on post-op pathology) I also have bi-lateral lymphedema. I was worried about this happening and resistant about having the ALND, but the large unseen Her2+ node made me realize, in hindsight, I would rather have LE than leave a cancerous node in place. The LE has complicated the subsequent surgeries but everyone has taken every precaution not to make that worse. At this point I am so far removed from my original diagnosis that I can compartmentalize cancer and my reconstruction problems separately, but I know that is an individual thing.
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I was off about 6 weeks for bmx. Then I worked half days for 2 weeks. I was more tired than I expected going back to work. I had about 2 1/2 weeks for exchange, and about 10 days each further small procedure that Ive had. I was not prepared for how the first few weeks after bmx I was very limited in what I was able to do- T rex arms is no exaggeration. I couldnt even lift a coffee mug for a good week. Lay out things on your counter, unscrew lids in advance, I used a rubber travel mug or paper cup for drinks... my micro is above stove, so once I was able to even lift something that high I found that even 10 second times bring the thing back to the front- so not trying to reach back into it...there are good threads and info on the surgery boards and the lumpy boards.
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SpecialK, I know you are a small woman. Where does the fat for a graft come from? Is it another surgery Orr something simple? I am sure not there yet....hsve not even scheduled exchange surgery, but am taking notes. You sure know a lot! And, do you have to be overfilled for an implant? I am at 500 cc now and am looking at 650 cc implants. Can they fit? Women get augment implants under the muscle with no skin stretching. ?
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mysunshine - yes, I am petite, but the largest fat graft was the first one and it was taken from a number of locations - two spots on the lower abdomen, upper abdomen, and both hips. This gave my PS enough fat to inject above my implants in the hollow between the clavicle and top of the implant. The second two FG were with much less fat because they were to improve skin health on my left side, not for aesthetic reasons. My lower abdomen was used for the second, and my new PS used the back part of my hips for this last one. The new PS said there is no more fat to take from the abdomen for any future fat grafting. All of these were actual surgeries with anesthetic - the last two also involved skin repair. Many PS like to overfill and either place an implant equal to the overfill, or one just slightly smaller because this allows for some drop of the implant into the pocket for a more natural look. I doubt your PS can fit a 650cc implant in a 500cc pocket - it would be pretty tight, may not give you the best aesthetic - more like a rock on your chest due to the lack of breast tissue - and is apt to cause discomfort. Augmentation generally uses much smaller implants than what you are discussing because they are adding to existing breast tissue, so the need to stretch the pectoral and skin is far less. Are you trying to stay the size you were previously or go larger?
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SpecialK -- You really have been through the wringer. I admire your attitude in spite of so many trials. To have lymphedema as well is just too much. I am not sure I would handle it as well as you have, but then maybe we adjust. At least the anesthesia has not had any lasting effects, even though you have had so many back to back surgeries. I definitely understand that the HER2+ and positive node would have been forefront in your mind. I tend to compartmentalize as well--I did not think too much about how I looked or recon while I was going through the initial stages and treatment. Are you planning to stay flat on the one side or attempt an implant again when your skin is stronger? I appreciate all that you have shared.
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katcar - I participated in a study with the USF School of Nursing shortly after chemo. This study was for determining whether mindfulness, in the form of meditation, could reduce the stress hormone cortisol. This was quantified with blood and saliva samples. The classes I attended during this trial helped reinforce that much of what happens to us is not within our control - but how we react is. I came to understand that was what I needed to focus on, and it has helped me cope with the challenges I have faced since diagnosis. I am planning to attempt recon with expander to implant again - most likely at the end of the year. I have a pretty large implant on the right that is difficult to match a prosthetic to. Most people with one flat side have a natural breast on the other side - or two flat sides, and prosthetics are manufactured with that in mind. My implant doesn't move or feel natural so finding a similar shape and size prosthetic and mastectomy bra that works is tough.
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My hat is off to you SpecialK. I did not even manage to do a full expansion. I will be lucky to recover from exchange as a size B. PS is going to try to use ultra high profile but whatever. I felt better when she said I'm already bigger than I was before. I stopped expansion due to the excessive nerve pain and I swear the girls are getting unhappy pre-surgery. They felt like a vise on my chest today. Praying that the new girls are better trained.
Scottie
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Scottie - most people feel a lot of relief right after exchange surgery despite just having had the surgery itself! I hope that is the case for you. I took a lot of warm showers in the days before exchange - it worked well to relax all of those muscles. Your surgery is coming up - wishing you the best
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Just finished last treatment and cannot imagine having to have more fills. Cannot take any shower as I have a power line in my chest and cannot get wet. Expsnders are so miserable. You are amazing Special to consider more surgery. I guess right now I am just so miserable with SE from T/C that I cannot think about anything else. I hope this all gets better. Sorry to rant, but it is how I feel. Just trying to get through each day.
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Wow, I sure do wish I had found this site and topic weeks ago. Started reading from page 1 and learned a lot but it would probably take me days to read through everything, so skipped around and decided to just post my question/concern and hope someone can help.
Had skin sparing BMX on 6/10 with tissue expanders. PS said Alloderm wasn't used because my pects were very thick. Physically, I recovered pretty well from it overall except for gosh-awful swelling under my arms which is STILL driving me crazy. TEs were filled with 200 ccs during placement and I was really glad to see a little something there after surgery. So far I've had 3 fills of 100 ccs each (on the way to ~700 ccs - - I'm a size 10/12 & wear, oh excuse me, wore a 38C bra). Initially the TEs felt like I was wearing one of those coconut shell bras with the edges digging into my ribs, but the first actually eased that feeling. The fill experience has not been too bad, just some mild discomfort the day of + next day. Nurses told me that so far there has not been any back pressure and I still have some saggy skin so I'm thinking there's plenty of room left. When I went for my first fill, I asked to see an expander because I remembered holding and examining some implants, but had not seen an expander. Was surprised that it was just a flexible sac with a magnetic port thing near the top and some tabs for stitching in place. I can't understand why they felt so hard inside of me??
Several people have commented that the TEs are digging into their underarm area and I'm having fun with that, too. ;( My TEs are widely spaced and high up on my chest and the right one seems to be filling in the top outer edge. Can't understand it. The one I saw didn't look like it had compartments within it. Wouldn't you think gravity would pull the fluid down. It's really uncomfortable and has been 3 days since last fill. I'm wondering if it's ok to try to massage it down a bit, but am afraid to injure myself or break the TE. Yikes! Has anyone else experienced this? Any suggestions?
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cheddiecat Me TEs shift when I lift things or when I pull the peck muscles the wrong way etc. . .sometimes gently pushing on the TEs helps realign them. PS told me on day after surgery that I have really tight pecks and my pecks definitely weren't happy campers about expansion. Hopefully my pecks can learn to live happily with my new foobs.
Scottie
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Scottiemom11: Thanks for the advice. Tried gentle pressure a little bit ago and did get some relief. Feels MUCH better! Was just so afraid to do it. Medical stuff scares me - - and look what I've had to go thru! Wonder if I'm caused by the arm movements at Zumba, though I was careful and didn't do all of them. Would you know if this is similar to the issue with the gummy bear implants shifting? Or is that unrelated? Was considering them for projection sake, but may need to reconsider if that's the case.
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cheddarcat not sure about the gummy bear implants. I asked PS about them and she said they are harder than the silicone ones she's putting in. I may not have understood her correctly though. As for the arm movements, I know I have a lot more pain When I try a new weight lift or machine. The muscles do not like being stretched certain ways. Another thing I hope will get better.
Scottie
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Hi again SpecialK - My doctor confirmed I am getting the FlexHD allograft during the exchange surgery, not a synthetic allograft. Any thoughts on that?
Thank you! Kat
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katcar - not specifically, but I do think that most people don't get the synthetic - I believe it is a newer product. There is more long term data available on the non-synthetics. One of the most common issues with allograft material is red breast syndrome, so that might be something to ask about. Here is some info
http://www.ncbi.nlm.nih.gov/pubmed/25695440
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Just got my marching orders for Monday's EX surgery. It's a 45 minute drive to the hospital and I have to check-in at 5:30 AM for 7:30 AM surgery. So guess I'll be leaving at 4:45 AM. DH will NOT be a happy camper but hopefully we'll get home sooner, i.e., sometime before dinner.
However this turns out I am so relieved to finally be done with the TEs.
Scottie
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Good luck Scottiemom! Let us know how it goes. I cannot wait for my exchange surgery. I keep looking at the calendar trying to make it get here quicker, "well, if I don't count next week, and if I don't count the PST week......." LOL. Its exactly like what waiting for Christmas is for a child.
Best wishes for a successful outcome.
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Best of luck, Scottie! 4:45a.m. is beastly early hour, but I am sure the day will fly past. Are you staying overnight in the hospital or do they send you home the same day? Cannot wait to hear how things go!
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SpecialK - Thank you for providing that information. I have never heard of red breast syndrome--it doesn't sound nice. I tried that article but it was not there so I will google it. I was hoping for the synthetic kind, and I am not sure why the doc changed his mind. I am nervous that insurance won't cover the allograft; in fact, I am not sure they are going to cover my recon at all since they are an international/expat insurer. I think the allograft alone is about $8,800. I am going to call my agent on Monday to see if he can get a definitive answer out of them.
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I love early surgery= can get home sooner and dont have to wait all day not eating. and being anxious
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katcar - I subbed out some other info in the above post - sorry the previous link didn't work. Yes, agree that it is important to determine what will be covered for your surgery - you wouldn't want surprises!
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katcar. . .we were told to pack a bag because PS may admit me. Hoping to go home though.
Scottie
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Scottie - Wise move--you never know, and it would be a bummer to be stuck there without a change of knickers
! Whichever way it goes, I hope you will be comfortable and able to rest.0 -
I'm watching an old Re-run of Sex and the City. Samantha just announced she has breast cancer and doesn't want to lose her breasts. Made me stop and think how lucky we all are to have the choices we have today.
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Question for those who have already had EX. How long after surgery did you have to wait before you could get in a swimming pool?
My surgery is Monday and we have Labor Day plans. I will be at a big water park for one of the days. I don't do the slides, but love the lazy river and wave pool. We rent a cabana when we go so I'll be out of the sun and I have a zip up swim shirt. Also, I'm assuming PS will use dissolveable stitches and surgical glue again (she's using the same incisions ). I was able to shower on day 2 after BMX and bathe, but not immerse after 3-4 weeks.
Scottie
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Scottiemom11: Yay - - exchange day!! Wishing you well tomorrow!
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Hi Katcar0001, I'm not sure. I had my mastectomy in February 2015. I have a breast expander placed in. In May 2015, I had the expander removed, a lift and I had the implant placed in. Also developed Red breast. In about a month, In June 2015 - I ended up with a whole in my skin where I had the implant and had it removed. The second visit to the plastic surgeon, because she didn't remove all the skin I had another home. by June 19th, I had emergency surgery to remove the implant as I was running a high fever, plus the implant was coming out I had no room. I ended up with Staph and strep infections because of this. I have to wait 3 months to decide to try it again.
Originally, I decided to get back on the horse again and try it again. I'm flat one side, and I don't mind it. I wear a genie bra as it's was recommended by my plastic surgeon until the swelling goes down on the lift breast. I have a appointment with the plastic surgeon at the end of August to schedule the hospital visit in September.
But I'm thinking of staying flat. I'm comfortable with my body. I don't mind being flat. But, I not sure. I seem to be going back and forth on my decision. Yikes!
Lee
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katcar. . .taking a change of knickers worked. Surgery went very well, I remember nothing, as opposed to BMx, and I did go home that day. Had my first post op visit today. Doing well but still on Trex or I'm in pain. The iron bra is gone.Yah! So glad to be posting on exchange city now.
Scottie
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Hello my expander friends. Home from my tissue expander placement, and I did end up staying overnight after all due to excruciating pain (and yes, I had a change of knickers). Feeling better today, and I live in a country where you can walk in and buy most drugs without a prescription, yet they don't dispense any of the good stuff for pain here! I get analgesics and a mild muscle relaxant :-(. The hard part for me will be sleep--I get sleep apnea when sleeping on my back, even propped up, as my tongue falls back into my too-narrow airway. And the muscle relaxant makes it worse. So I end up jerking awake every few seconds. Nice, eh?!
The PS put in a 250cc expander, which is pretty small so not sure why I hurt so much. But I had really tight skin with my ribs showing--absolutely no meat or excess skin at all--so maybe it's not surprising. I read somewhere else that it's the skinny rails who have the most difficulty with the expanders.
Scottiemom--Super congrats on your successful exchange surgery. I am sure you are thrilled to have those cement blocks off your chest. But I am sorry to hear you are stil in pain. I guess I had the impression that the implant surgery would not be as painful. I hope you feel better soon--it's been only a week. My doctor told me T-rex for several weeks and no driving for a month! Not sure I can do that... Also, I am an obsessive floor sweeper, so i am going to have to control myself.
And then I read your comments, Lee. OMG. I am incredibly sorry all that stuff happened to you. You've been to hell with that Red Breast syndrome as well as those "S" infections. I don't know what I would do in your case. I can see why you might back out and stay flat on one side. What caused the hole in your skin? The infections? Or it was just stretched too thin?
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