Exchange City
Comments
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Jdevonm. My heart goes out to you for the additional pain and trauma you have been put thru. It's hard enough to navigate this world of BC and heal from the different treatments/ surgeries.But to be put thru what you have at the hands of a physician is unconscionable to me. I know you are probably exhausted mentally, physically, and emotionally, but keep on fighting.
Best wishes to the gals having exchange surgery this week! I'm getting excited to join the club.0 -
jdevmom: Is it possible for you to get a 2nd opinion? Sure sounds like this guy has an ego the size of Texas and the bedside manner of an ogre. Prayers for you to get satisfaction with your final results.
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Thank you all for your support. Just talking to other people that has been down this road helps a lot. Sweetandspecial, no, I can't get a 2nd opinion... He's the only Dr that is within my insurance plan that does reconstructive surgery within 3-4 hours of where I live :-( trust me when I say I've wanted nothing more than to see someone else.
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Thanks for all the kind words! I am ready to get it over with...Friday just happens to be my DH bday too so I am joking he is getting new boobs for is birthday!
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jdevonm - Your story brings tears to MY eyes. You really aren't able to switch to someone else? Hard to believe that he's the only PS available
Makes me even more grateful for my PS. He, his surgical partner (who I had to see on an emergancy basis along the way), his PA, and his whole office staff have been wonderful. There are great plastic surgeons out there who are also compassionate human beings willing to answer questions and allow the patient to have some say in this process. I'm so sorry you don't have access to one.0 -
Oh jdevonm, honey, I feel for you.
Now I'm really riled at that cocky a$$hole. He even gave you an infection, the idiot.
This is my advice: Go back for your appt and see him with the most intense friend you have and get your answers. Be firm with him, if he calls you the wrong name - stomp on his ass with the iciest tone you can muster.
Today, call the hospital and ask for a release of information form to be mailed to you. Send it back in with a request for your OR surgical report that he wrote. If they ask for a reason on the form, write "Continuing Care." You can PM me if you need any help.
Let these current implants get settled and take a break from all of this pain and suffering. Get back to work so you don't have to worry about finances. Try not to worry, get back into a fulfilling life with good balance.
Meanwhile, write up your experiences with this a$$hole. Get a lawyer or paralegal friend to edit it so that it's very very objective. Send it to the insurance company and request a different PS. Do your research so you know which ones are good. Mail them your documentation if needed.
Good luck dear one.
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2nd_time_around: So happy that your TE days are behind you! Did you find after exchange that you needed to sleep in a recliner again? I am wondering if I will need to go back to my recliner for awhile or if I will be comfortable enough to continue to sleep in my bed. After BMX I spent the first 4 weeks straight in my recliner! LOL
Sorry to hear you are feeling some pain. Hopefully the pain meds are kicking in and you can get some relief!
Let us know how your post-op appt goes tomorrow.
Jen
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Jdevmom: I'm so, so sorry your options are so damn limited. That's so unfair! Don't be afraid to vent here any time you feel a need.
Shellshine: oh my goodness I hope you're never mad at me......I think I'd run the other way if I saw you coming
. Seriously, though, you say it so well. This guy is an a$$hole and gets away with it because people don't have any other options. Sucks!0 -
Funny - my DH says the same thing! Good people never have to run away from me! ...... and I would never harm a BC sister (I would never harm anyone, really).... but it just riles me when a person with skills, education and money hurts someone he is supposed to be helping. You brave and beautiful women can alwys count on me being on your side.
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Jdevonm, I agree that you should try to fight your insurance company to get another doctor but I also know that its exhausting to have to deal with that. You shouldnt have to deal with this kind of stuff. We have enough to deal with. Healing hugs.
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Ah, Shellshine, YOU are a girl after my own fiesty heart...;) Your first post to jdevonm was exactly what I would've said/was thinking...um, & your next post--ditto...lol! OY!
jdevonm: I feel the same as lala1 & others concerning your situation. I bet that maybe there is Someone/a decent Recon. PS within a 5-6 hour range that perhaps you could consult...it's worth a HUGE TRY...even if you have to travel.
For the love of St. Patrick, what you have been through with that guy is insane! I'm so sorry...
.Thinking of ALL of you...GROUP HUG!
violet_1
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Jdevonm. I am in Kansas City. I am going to KU med center. Please send me PM so I make sure to respond if you need info on doctors here. We are only about 3 hours from there. Take care!
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Thank you all for your thoughts and feedback and I will be taking your advice! Flippym, I will PM you in the morning to get some info. We got to St Louis for my husband's visits to his heart transplant surgeon, so I had thought about going up there but I tried to get into a PS my friend recommended and they never returned my call so I took it as a sign it wasn't meant to be. KC is just as close so worth a shot!
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Mamatwinz.
This is your day
....I will be thinking of you......and wishing you wellDi
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Mamatwinz It's your day!!! Thinking of you today and hoping all goes well for you!!! Keep us posted with how you're doing once you're feeling up to it.
Hugs,
Jen0 -
Mamatwinz prayers of protection, peace and healing for you!
Blessings,
Leah0 -
MT - Please let us know how you are doing as soon as you feel well enough to write.
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Home from my follow up visit... As I was being taken back to the room, his nurse asked how I was doing. I told her Ok except for the fact one side is quite obviously bigger than the other. She looked at me and said "yeah, its even noticeable through your clothing". Then after an hour the PS came in. He basically told me he won't be doing anything more to make me symmetrical. He told me to stuff my bra on the one side to give it the "projection' I need. He also said he won't do any fat grafting like we discussed as he felt like there's enough of a 'slope' to make it look natural enough. Never mind that my MX side is now lower than the other, and the natural side with the augment comes up a lot higher. I had to sit in the waiting room for my work release, and I broke down. Luckily my husband was there with me and let me go out to the car while he waited for it for me. Haven't been able to stop crying yet. Sitting in the car trying to stop crying so my kids won't see. I guess since I have to stuff my bra, wearing a swim suit this summer is out of the question.
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Hi girls, I have my bmx a week from today and I am so scared. My newest worry is how bazaar it would be to have no feeling in my breasts at all. I didn't even realize this was going to be the case. I am not sure I am strong enough to go through this. I was dx with DCIS which is the earliest stage you can detect breast cancer. Am I crazy for doing mastectomy? I am NOT going to do rads or tamoxifen as both those things scare me at such a young age... I am 36.
I am on the verge of cancelling the bmx with reconstruction and just do checks ever 6 months but I see so many women on here who have had DCIS or IDC re-occur and then I will end up doing it later if that happens to me. I am so lost and confused.
Is there anyone out there who says "I would never go through this in your shoes"? Is it that bad? My mind is spinning like crazy and I want to throw up.
I am so thankful for the amazingly supportive women on here... blessings to you all!!
Chantel
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Chantal: Do I miss having feeling in my breasts? Yes. Do I miss my nipples? HELL YES!! Nipple sensitivity has always been a big part of sex for my husband and me, so yes,yes, yes, I do miss them. But......I'm getting used to it. And, for me, the BMX was the right thing to do. I could have gone with a lumpectomy and had a very similar low percentage chance of recurrence. But I know me. I had a scare while waiting for my lumpectomy when an MRI showed three more shadows that had to be biopsied but they couldn't get me in for 2 weeks! During those two weeks I cried and cried and cried and ended up on Ativan for anxiety. When the time came and I found out they were benign I realized I had already mourned the loss of my breasts and was prepared to do the BMX with reconstruction simply because I knew I would worry about recurrence if I still had a bunch of breast tissue.
It's a tough decision and no one can make it but you, but do be assured there is life and happiness on the other side of a BMX. It's been a big bump in the road, but the alternative for me (lifetime of worry about recurrence) was not worth it for me personally. Whatever you decide, I pray that you'll be at peace with your decision. God bless you, no one should have to deal with this at any age, much less in your mid-thirties.
(((((((hugs)))))))
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Chantel, I just turned 30 and also found my cancer very early. My general surgeon highly recommended me doing an MX, said if it were his wife he'd push for it. I could have had a lumpectomy instead, but due to issues caused by radiation I chose the mx instead. I wanted the cancer gone, and in the safest possible scenario. Radiation from lumpectomy can cause early heart attacks due to weakening the valves of the heart. Now as for losing feeling... Yes, that is kind of hard to get use to. I still have feeling around the edges of my MX side, but not in the center area. That's partially why some women don't opt for nipple reconstruction... You won't have any sensation in them. I only had a single MX, so I still have feeling in my other breast (although it took a while to regain sensation after my breast lift). If they are telling you it isn't an aggressive form of cancer, then I say do what you are comfortable with, but keep in mind it can easily spread to other areas beginning with lymph nodes, so the sooner you catch and treat it, in my opinion the better. I know its a very hard choice to make. These ladies will give u the best of all opinions :-) my prayers are with u!
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Thank you ladies (sweetand special and Jdevonm) I really appreciate any info...
jdevonm, do you have some feeling on the side that you had the mastectomy? Sounds like maybe you do. My understanding is that you would not feel any of your breast at all. Am I wrong on that? I know that my nipples are going to have no sensation and that I have already resigned myself to but my whole breast on both sides is hard to wrap my brain around.
I agree with radiation, that is exactly why I am not having it done, plus problems with the lungs and the possibilty of rads causing a whole different cancer.
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hey guys! thanks so much for the well wishes and checking on me..u guys are simply the best!
) hugs to all of you! 2nd time got your pm this am before surgery..made me teary!
so got a couple hours of sleep last night, and up at 4am to shower and be at hospital at 5:15..surgery 7:15..gave me 3 diff pre meds for nausea as they did last time along with pushing fluids and i had zer nausea. told ps i was happy to see his eyes werent bloodshot from partying last night and apparently turned around while being wheeled to OR and yelled bye, c u later to my hubby while waving my arms like an idiot..i do not remember this. must be the versed that kicked in! so last words pre versed to ps was i do not want to be any bigger than i am in my TEs and if implants do not look natural on my body, then find what does i am ok with that. so i have no memory of post conversation with ps, but we did have one apparently. hubby said that ps said my skin was very thin and tight he.did nit like how it looked..so i have the sientra anatomical round base high projection anatomicals 425cc which have same or better projection than higher volume 45s. ps told hubby they look great. i will wait to look when i shower tomirrow. in my shirt i am smaller than my TEs, but I would say I Look like a C!!!!!! and look like a larger pre mx me!! ps moved foob out of my pits n closer together! i had x2 percocet at discharge around 11ish and have been doing good since! i ammore sore on right lateral boob, but chest is soft! i will take norco with dinner and bed...i initially was bummed re 425cc, the NUMBER..but i really like how it looks in my shirt...tomorrow we'll see without shirt!! good luck to the ladies this week!!!
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So happy for all of you who had your exchange. You all seem to be doing well! Jdevonm, I said a prayer for you and am so sorry for what you are going through. It is just so unfair and makes me very angry at your PS, to say the least.
Chantel, I know everyone is different, but I have minimal numbness after my BMX and exchange surgery. I have regained almost all feeling in my nipples, but it's not the same feeling as before. I have also been regaining the feeling in my lower armpits since exchange. If you decide to do this, just know you can do it and will be supported by all these wonderful ladies. I did not have full blown cancer yet and also did not want to ever take tamoxifen. The last 5 months have been difficult at times, of course, but a piece of cake emotionally compared to my Marine son serving combat tours in Iraq and Afghanistan. I thought I might have to go to the looney bin when he was deployed.
Just putting things into perspective as far as how it was for me anyway. God bless!
Cheryl0 -
Chantel, yes I have some around the edges and up a lil ... Keep in mind u still have those muscles that go over the implant (if u are going with implants... Or are you considering flap procedure?)
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Chantel,
My BMX was in October. I have feeling in quite a few places. In fact my left scar hurts if it is rubbed. The right side incision has no feeling. If I lightly trace my finger across my skin I can feel it all the way around. The top of both breasts have more feeling than the bottom. Oddly, if I (or DH) squeezes...I don't really feel that. But I can feel some light touch. Not at all the same as having nipple sensation, but more feeling than I expected to have. Initially I had much less...probably due to swelling, cut nerves, etc. but it has gradually increased as I've been healing. I am now about 9 or 10 weeks post exchange surgery.
You have to weigh your risk and your stress level, etc. I had already had many mammogram callbacks over the years and was on my third excisional biopsy and third needle biopsy at diagnosis. Add that to a huge family history and I knew what the right choice was for me. I do not regret it. I am so sorry that you have to make this decision. Stick around. There is lots of support, knowledge and love here regardless of your decision.
Jdevonm.....
I wish we could have all gone to your appt with you!!! Hugs to you as you are healing. I hope you find a second opinion that you can trust and respect...and pray you have some peace. Some days it helped me to remember how little of "me" was removed. I actually did the math from my surgical notes....less than 1% of "me" was removed!!!! ;-) Now I am adjusting to the new me. Some days are better than others. Do whatever you need to do to help you heal, but don't let this huge bump in the road keep you from enjoying the rest of your journey...so much more to our lives than these boobs we all obsess over!! I don't even want to think about the time I've spent in front of the mirror trying to determine if they are getting more level, if they look the same, if they are too big, blah, blah, blah. My DH said I thought about boobs more than a 15 year old boy. Ha!!0 -
A few random comments:
I think it's pretty common to retain sensation around the periphery of the breast and it seems to vary from person to person how far to the center of the breast feeling returns. According to my BS, who specializes in nipple sparing surgery, more and more patients are reporting return of nipple sensation. It can take 2-3 years for it to return. However, it is more of a sensation of touch than a good feeling. For some it's an unpleasant feeling. Cheryl is one of the lucky ones to have some feeling return so quickly. Perhaps surgical techniques are improving as NSM is being perfomed more and more? It's exciting, I think!
I don't think this is a deciding factor in favor of MX over lumpectomy, but something to make note of. If a woman has lumpectomy and radiation, but later either needs MX or chooses MX for prophalactic reasons reconstruction can sometimes be complicated by that radiated skin. It can make expansion difficult and sometimes sizing choices are more limited. Just something I've read on some of the reconstruction threads....
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jvd..i have been anxious re my surgwry so going over some back posts...unless i missed or u dodnt want to say, i am friends with someone at bcbs who knows everything basically and i can talk to her. if u have ppo plan generally u can see any md in any state as long as in ppo network..the travel part sucks, but maybe just for second opinion? altho i would have been unkind to your ps..unacceptable..and u can also report him to ins co and they can review medical records and remove him from their provider network...we did that to one surgeon with bcbsnc when i worked there 15 yrs ago..OR how about a friend/family member u can stay withand see that ps? my sis got sec opinion in cleve for her spine, liked her, and stayed with fam fir surgery..about 3-4 hrs away from her home in.cinci..i think tho u may have work issues? so sorry fir this for u..hang in there..
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jdevonm - I think we all feel we are in "fight mode" through so much of this and sometimes you feel like you've got no fight left
As I read your post about today's PS visit I thought perhaps this is a blessing in disguise for you. You already know that you really don't want to continue with this surgeon. It's early for you so some changes are likely to happen. But, there seems to be agreement that things are not symmetrical. By law, your insurance company must cover surgery for reconstruction to make things symmetrical. If the only PS currently available to you to do this is refusing to do surgery perhaps this is your chance to file a grievance and get coverage to see another surgeon? I know it's probably exhausting to even think about, but since you'll likely have to wait for things to settle in anyway perhaps it's something to check out...Because nipple sparing surgery wasn't available to me locally I chose to travel 3 hours each way. It wasn't easy, especially since I had healing issues after MX, but I'm so glad I made the commitment to go for it. It seemed overwhelming just to consider it at first, but it turned out to be a great decision as I ended up with a wonderful team.
Do you have access to breast cancer navigation services within your health system? That can be a great resource and you might be able to have a patient advocate who can do some of this work for you. I worked with a navigation nurse at the beginning and she was wonderful.
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jdevonm - Oops, also wanted to urge you again to check in on the "Breast Implant Sizing 101" thread. There is lots of good info there plus Whippetmom keeps a list from all the women who have had good results with plastic surgeons who are willing to actually work with their patients.
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