Exchange City
Comments
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Coyote - it wasn't the finished product on me. I was over filled for radiation. My BS and oncologist both thought that PS could even me out while waiting for exchange instead of dealing with expensive prosthesis in the mean time. PS flat out refused, with no explanation. If I had been given an explanation I would have been ok. She then told me I wasn't sick of being uneven, I was just sick of the whole process and to get over it. She said I was lucky she would even touch me after radiation. She then left me in tears and walked out on me. Nurse covered and stammered for her rudeness. Someone then told me, if you are not happy with your care awake, don't expect the best care when you are under anesthesia. Made the decision to switch. At least have some sympathy and understanding when your patients are at their most vulnerable. My self esteem really took a dive after that meeting with her. Didn't have to be that way.
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bayoubabe,
You get a few more opinions. You don't need to be talked to like that. Wouldn't you just love for her to be in your shoes for a day, or two. Then maybe she could be a better person.
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BayouBabe~
"...if you are not happy with your care awake, don't expect the best care when you are under anesthesia." That makes sense. Be calm, move on, and be thankful that you found out about her before it was too late. Sounds like a close call. Lucky you!
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CoyoteNV, that is appalling and I am glad you walked. Good luck with your new PS.
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Hi ladies,
Just an update...I know everyone is saying "give it time", don't be impatient. But, I have to say, 4 weeks out and these things are still in the same spot as they were when I got out of surgery. My PS said to try to massage one down, but was not sure it would move. One is sitting on my sternum, and is round in the center, the other is off-center, concave. That is honestly the least of my concerns, as I would think if I wanted to keep the implants it could be fix. But I hate how they feel from the heavy binding feeling to being able to feel the implant moving under my pecs when I lift, drive, sand furniture, work out, etc. Sooooo, I have scheduled an appt with a PS in Baltimore for a consult for a GAP procedure. I am kicking myself for not having done the longer drive and gone to Baltimore to begin with. I am also seeing a new MO since mine gave me a 12 month supply of tamox and said "see ya". No monitoring for SE, no blood work for liver function, nothing.
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CoyoteNV...love that quote. Very true though.
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Momof5kids, that must be so discouraging for you. When is your appointment in Boston? I hope you hear an option you feel good about taking.
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Hi Andrea623,
It is a bit annoying, but knowing that I will probably need to have more surgery to revise what I have, and now knowing there are more flap options out there than DIEP, I think I at the very least need to look into it. I am sure lots of ladies love their implants. I am just not one of them. I go to Baltimore in August, so it is several weeks out.
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hi sisters,
one week ago today i had my revision surgery, and i thought by now I would be back to normal....well after measuring my 4 incisions, I have a total of 28" inches of incisions under my steri-strips. I see my PS on Wednesday.
Each day the pain is lessening and usually use only one or two pain pills a day, the pain locations change day to day, or more often, I still am resting a lot, this surgery "took the wind out of my sails"
hugs to all
Di
tired old fart
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Please keep me informed momof5 I too HATE my implants. I hate how they feel tight and the peck thing, yup hate it. I even feel it when I drive and its been four weeks. It still hurts to lift up my arms and I am still not able to go back to work as I work with my arms in the air. I thought getting the TE out would be such a huge relief. If was somewhat a relief but I still have the HORRIBLE back ache and still pain in the chest. Im starting Rads so I will just hang tight for a few months and see what happens....
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I wonder if short-term use of some sort of muscle relaxer would help set things aright for you, Tangles, or some good massage therapy. It sounds like your body might just be wound up so tight right now from not only the exchange surgery but also your continual stress/worry/frustratin that it needs to be forced to relax. I think it would be worth the effort to try before deciding to remove the implants and go through a major flap surgery. Just a thought.
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Tangles - don't remember from your past posts if you have had physical therapy or not. If you haven't, please consider getting a referral. I have not had my exchange yet, but had horrible pain with the TE. My PT therapist did wonders to help ease my pain and mobility. I saved a few of my 30 insurance limited PT visits for after exchange as well. Definitely worth trying. I started mine during rads by the way. Couldn't do everything due to rads treatment, but still helped until I was finished with rads and could go full force.
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I did a few PT treatments with the TE mostly because I had some cording issues. I did one after the exchange and she just said that was all I needed so call if I have any problems. Maybe I will see if I can get another session. My cancer center gives one free 20 min chair massage per week and I take advantage of it. I would get one everyday if I could. I have been thinking about trying a chiropractor my back hurts so so so bad. Not sure if that would even help. I would love a full body massage, but cant lay on my chest yet. I do have a scrip for muscle relaxers and took one today, Didn't notice it helped but maybe I would need to take them for longer???
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Don't know about the muscle relaxers, never took any through this whole mess. I have a whole folder of PT exercises to do. I try to do a few each day. Did PT give you any? My neck and shoulders were bothering me. Came from holding my arms pulled in after BMX. Try and get a referral. Cording issues will be nothing like the exercises and massages I received. My PT therapist works a lot with cancer patients as well, which really helped.
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I sooo benefited from my PT, and keep up with the exercises 4X a week. Helped my back pain due to lap flap. Carefully consider any flap surgery, it is a long surgery and recovery. I still needed the TEs and eventual implants due to size and amount of skin left. Hope the implants feel better in the end. My biggest problem remains with the underarm boob, right side is decreased but left still is a big roll. Ah, the joys of reconstruction!
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Good morning my ladies I been following through most of your journey and I'm not there yet wish I was though....... I just wanted to know how many of you had TE removed do to an infection .... Had radiation? After radiation do they place TE back on ???? Is it harder to work on.... My PS said to wait for radiation to be over and will see how I heal... I don't know what to think...... Please help
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Hi Tangles,
I have an appt in Aug at Johns Hopkins. I am hoping I can get a GAP procedure done and get these things out. I know some women have great experiences with the implants. I wish I was one. If I had no other options, I would get the symmetry fixed and would probably just grin and bare the tightness, movement under my pecs etc. But knowing that there are other options, options that I have to travel several hours for, but options none the less, I feel the need to pursue. I was diagnosed at 44 and hope to have many more years with my foobs...I want them to look and feel as natural as possible.
Oh, and I had too had coording, did PT, do the exercises at home, had massages, etc. It helped a little, but never got rid of the feeling.
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I was told you had to either have implants in or TE in for radiation. Unless of course you are not going to reconstruct. They want something in there. I talked to my Rad dr today and she said its about 50/50 to how many PS do TE then Rads or Implants then rads. She said there is no right or wrong.
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From what I have heard you can have expanders in for rads, but not the implant. The rads can ruin the implant. Better to wait till you skin has healed from rads too before exchange is done.
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Buuuuu... I had no choice ... I had to remove my TE do to so many infectons!!!! This stinks!!!
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Patricia, there are women here who had rads and then had TEs which were later exchanged for implants. Hopefully they'll chime in soon.
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Tangles - Most good massage therapists can give you a "pregnancy massage" with you lying on your side instead of on your belly/chest. It's worth asking about!
Hang in there everyone!
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goldie I just talked to my radiation doc today and she said about 50% of her Rads patients have implants in before Rads. I asked which is better and she said there is NO right or wrong it is a PS preference. Back in the old school days they would NEVER do Rads before implants but times have changed, implants have changed, and Rads have improved. My PS choose implants before Rads so well see what happens.........
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Two weeks out from exchange and saw my PS today. He's putting me back on Neurontin for pain. I mentioned my concerns that lefty is larger than righty, the rads side, and he said there was barely any difference. I disagreed with him, and he said I had more tissue on the non-radiated side. Yeah, I knew that. He wants me to give it 4-5 months before deciding if I want it changed. He's also pushing for nipples, which I told him very emphatically I do not want. He says I'd feel more complete, but honestly I'm okay without them, and do not want my radiated skin messed with any more than necessary. I left feeling irritated, and like no one was really listening to me. I need some ice cream.
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Andrea, I find it interesting that people are so interested in the nipple issue. Whether you have them or getting them replaced. The perspective of "it will make you more complete" just doesn't cut it for me. I hate that we all have to go through this. I am grateful that I am cancer free. I love myself and am adapting to my different look. Boo on your PS not listening!
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Andrea and Sue--the jury is still out for me too on the nipple issue. Had my exchange 7/5/13 and at my follow-up appointment six days thereafter, my PS said something to the effect of, "put some nipples on those and they will look like real breasts." I told him that I wasn't sold on the nipple idea and that I didn't want to be "on" all the time. I have also spent the last four decades hiding my natural nipples because they always were "on" and I am rather enjoying not having to wear a heavy padded bra to conceal them any longer. PS gave me an Rx for self-adhesive nipples and said to give them a try. I got the Rx filled but they are still in the box so I think I know my answer.
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I have to admit I was large breasted, large nipples pre BMX. I can't tell you how much freedom I felt after BMX and the smaller "size" and no nips. Now after exchange, I'm about 6 weeks out, my mounds are feeling pretty natural with bounce and slope. I have very little feeling on my skin. Nipples will have no feeling so to me it's not a big deal. I'm symmetrical and enjoying how I look and feel. It's all an individual decision. Wishing everyone peace with theirs.
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Lori, I too, was "on" all the time. I like that I no longer will have to buy padded bras to hide them, and have made my mind up not to have nips done. I am fine without them. I don't like how the PS kept pushing it. Makes me feel like all he wanted was another completed "after" photo.
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My nipples were never "on" that much, but I still hate wearing a padded bra to cover them incase they are "on". I decided to go with the 3d tattoo. That way I can have the nipples and still be flat, and I don't have to wear a bra at all if I don't feel like it and I can kiss padded bras goodbye.
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Chinneymae, did you go to Vinnie for them?
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