Exchange City

 Hi Ladies!  My goodness...so many pages to read as I have been mostly lurking along.  Life got more hectic between Cub Scouts, Boy Scouts, martial arts, dental conventions, work, etc.  At least I had some fun...DH & I went to the James Taylor/Carole King concert Saturday...by the way Wippetmom...how was the concert for you too??  You went on Friday as I recall you saying.

Below is something a Scout mom emailed me she happen to read regarding MX & mandating hospital stays.  This may not apply to most of us now but maybe pass this on...

Bless everyone & always in my thoughts & prayers!!

NAE

Subject: Mastectomy law change

Please pass this one on!!!!  Thank you - Proposed Mastectomy Law Change

(written by a surgeon).

I'll never forget the look in my patients eyes when I had to tell them

they had to go home with the drains, new exercises and no breast. I

remember begging the doctors to keep these women in the hospital

longer, only to hear that they would, but their hands were tied by the

insurance companies.

So there I sat with my patient giving them the instructions they needed

to take care of themselves, knowing full well they didn't grasp half of

what I was saying, because the glazed, hopeless, frightened look spoke

louder than the quiet 'Thank you' they muttered.

A mastectomy is when a woman's breast is removed in order to remove

cancerous breast cells/tissue. If you know anyone who has had a

mastectomy, you may know that there is a lot of discomfort and pain

afterwards. Insurance companies are trying to make mastectomies an

outpatient procedure. Let's give women the chance to recover properly

in the hospital for 2 days after surgery.

This Mastectomy Bill is in Congress now. It takes 2 seconds to do this

and is very important. Please take the time and do it really quick! The

Breast Cancer Hospitalization Bill is important legislation for all

women.

Please send this to everyone in your address book. If there was ever a

time when our voices and choices should be heard, this is one of those

times. If you're receiving this, it's because I think you will take the

30 seconds to go to vote on this issue and send it on to others you

know who will do the same.

There's a bill called the Breast Cancer Patient Protection Act which

will require insurance companies to cover a minimum 48-hour hospital

stay for patients undergoing a mastectomy. It's about eliminating the

'drive-through mastectomy' where women are forced to go home just a few

hours after surgery, against the wishes of their doctor, still groggy

from anesthesia and sometimes with drainage tubes still attached.

Lifetime Television has put this bill on their web page with a petition

drive to show your support.. Last year over half the House signed on.

PLEASE! Sign the petition by clicking on the web site below.

http://community.breastcancer.org/do/redirect?url=http%253A%252F%252Fwww.mylifetime.com%252Fcommunity%252Fmy-lifetime-commitment%252Fbreast-cancer%252Fpetition%252Fbreast-cancer-petition

You will have to "copy" & "paste" the above URL into your browser .

 

This takes about 2 seconds. PLEASE PASS THIS ON to your friends.

Hi cs777. I'm new to this website and after reading about you gave me some hope. BM Dec 13 with reconstruction. . I have terrible pain in my neck, shoulder blades, upper back and underneath my right arm. The side that had the cancer. Mostly on the right side because the TE's were placed too far apart and I have 600 cc's in each one. I only want to have a c cup was a D prior. Well anyway the right side is where I'm having the most discomfort.  It is forming a pocket partially under my armpit amd it worries me that my final outcome will look like this like a freak. I switched PS because I was so upset with the way my temp. boobs look like and he wanted to put teardrop saline implants where I want high prof silicone.  On top of being spaced too far apart and too low it looks like he didn't go far enough under my left pectorial muscle so I feel like I look like a freek. It kind of looks like a fat man on the biggest looser that has breast to his sides. Yes I have put on 30lbs and I have 6 months before my exchange with the new PS. I've seen her twice the first time she said that when she was done I would beable to wear a bikini top.

Then I went back after I finished my RADS and she said to find a bra to push them together and made it sound like she might not be able to put them where I want them because they can slide in to the pockets under my arms. I'm confused, wareing an expensive bra that feels like a brace.

I was wondering if the bulge you had under your arms were the same?

Thanks and I am happy for you, Tina

Kay, you should definitely ask your PS what he is going to want you in after surgery.  As you have read they are all different.  My PS put me in a surgical bra after and told me to wear that for 2 weeks 24/7 or to wear a sports bra, I chose the sports bras...  They have a great one at JC Penney that has a zip up front so you don't have to wiggle into it.  I bought 2 different sizes and then just took one back.  I would buy the size that you are expecting to be and the size bigger... but first talk to your PS, because he might want you in something totally different or nothing at all...

Tina, I know your post was for CS but thought I'd pipe in with my opinion....  I think that you need to have faith in your new PS... she told you that you would wear a bikini top when she was done, but she isn't done, she is asking you to wear a bra because that is part of her process.  You have to remember that the TE's are not your temporary boobs, they are doing a job, they are getting your body ready for your new boobs.  Unfortunately they do not always look the best, and yes they are uncomfortable at times (for some always).  But do try to be patient and have a little faith in your PS... ask questions, yes, and if something sounds totally off, dig deeper and find out what is going on, but you have to remember, they have done this before, we haven't.  I know it's hard, but try to be patient, trust me, it's totally worth it!

vmudrow:  since Firni brought it up again, I'll comment on the TE's too.... I did kind of get used to mine.  My fills were big, usually 100-150cc's and the first 2 were very painful... but my PS waited 3 weeks in between fills, so usually by the time it was time for another fill I was feeling pretty good.  After my second fill I started going to a massage therapist (she massaged my back, shoulders, legs, arms, feet, neck, underarms, not my boobs) and when I went in for my 3rd fill there was no pain, and I kept going to massage every week until my exchange and that made such a difference to me.  I can't say that they felt normal, they were hard as rocks, but I got used to them and didn't walk around in total pain the whole time.  Now having said that, I probably just got used to some of the discomfort, but not total pain.

NAE, I'll definitely check that out... I cannot imagine going home the same day as my BMX!  That is crazy!  I actually stayed 2 nights, they gave me the option and I stayed, I was scared to death when I went home, once I got there I was fine, but it was scary leaving the safety of the hospital.

Everyone that commented on my story, sorry for getting so mushy, that wine!  But thank you, yes I am very lucky to have my DH!   Sometimes I forget just how lucky I am, it's good to have a reminder sometimes!  He is my rock, couldn't have made it through without him!

Have a great day ladies!

Paula

Well, I survived the last surgery I ever plan to have in this lifetime for my breasts.  Had nips put on (can't see them yet), more fat grafting (not sure if it took) and some lipo for the 2nd time (feel like I've been beaten up). 

Good news.  I have absolutely no regrets.  I have boobs back and they are rather nice.  I have a very loving and supportive family.  I am officially on the other side - 17 months from diagnosis.

Mary, that's great!  Congrats on finishing your last surgery!!!  Hope the results are everything that you're hoping for!!!  The nipples really are the icing on the cake!

I had an odd thing today... I took my shower and was putting lotion on my legs afterwards and looked up at the mirror and saw my boobs doing all kinds of unattractive things.  Dancing around and tightening up, just rubbing lotion on my legs....  So, here is a question for all of you that have been done for a while.... do the muscles ever just give it up and let them lay, or is this something that we have to learn to live with?  I would think that if they are stretched enough for long enough that they'd stop being so muscle-ey (not a word I know)...  any thoughts?  Also, as I was leaning over looking in the mirror (why do we do this to ourselves?!) I noticed that my left side looked bigger or hung further or something then the right side...  I've also noticed that the left side seems to be a little lower or something, when I have my pj's on with no bra and look in the mirror the left nipple is considerably lower looking...  Kind of bothering me...  getting picky I guess, but I don't want to have to wear a bra all the time to look normal, know what I mean?  They're fine in a bra, but....

anyway, if anyone has any words of wisdom....  thanks!

Paula

Morning girls,

Hope everyone had a restful sleep. 

Paula, you are indeed lucky to have a such a wonderful DH...your whole attitutde is so positive all the time... you and your lifestyle are an inspiration to me.  

Kay, do you know when your exchange date is?  I know you're getting the gummies and I"m excited for you.  Farrah on the picture board has probably the most natural foobs I've ever seen in all the pictures so far.  You're frame is very similar to hers I"m really happy you're going for them. 

My TE's for the last 14 days were almost unbearable but every day the discomfort was managed a bit better.  I feel as though I've finally come to the end of a long arduous journey but at the same time the beginning of a new natural one.  These are them and I'm going to be happy with the new girls as long as the good Lord lets me have them. 

Val and other Bra Policewomen:  Thanks for going easy on me:)  My whole life of wearing a bra was always a drag for me. I never liked how they felt or made the big girls look.  No amount of support was enough to change my '34 longs'  Since I've been out of a bra since Jan I feel liberated!  No more constricting straps or back fat!  Just nice round globes that are up there all by themselves.  Ok, I admit though there may be times when a Victoria Secret look would benefit an outfit.  I always used to have such different cleavage before...more single line between two big boobs...not perky up and rounded like how they are now.  I've had some fun yesterday trying on clothes that used to fit me so very differently! 

Becky, I"m so happy to hear your PS can do the nips under local.  I'm going to ask my PS again about that.  I can't imagine why he coudn't...I can take it!  If I have to go under again it might be a deal breaker. 

Kittycat I'm so glad your recurrence is not as extensive as was feared. You and everyone on these boards are continually in my thoughts and prayers. 

Rebecca, how are you feeling?  I hope you are up and about!

Maggie, You look like the picture of health and with your surfing story gives me hope that I will be golfing and enjoying the outdoors very soon! 

Off to pop in on Team January and see how everyone is doing.

Have a wonderfu day ladies!
Kat

Kristen -- love that adorable new picture!  (I forgot to comment so I'm throwing it in today)

Kay -- re: post surgery bras... My PS put me into a surgical bra so I woke up in recovery wearing it.  I should think most surgeons would do something like that (or I suppose you wake up wrapped in bandages like Kat -- what IS "bio-occlusive"?)  I agree with the others who suggest asking at your doctor's office.  They will know the plan

Luna- I traveled home in a normal vehicle.. LOL, Thanks for remembering (I think)..JUDY

Hi again EC...I updated my post op exchange pics on the picture forum!

Kat

Hi Tina, I soooo see my own angst from 4-6  months ago in your post, and know I am sending tons of hugs your way!!!   So first I just want to say..."Stop! Take a DEEP BREATH!  Now exhale sloooooowwwwwwly!!!"  Ok, done that??  Good.   

I'll respond to your PM too but its worth writing here publicly for everyone worried about their TEs: The issues with your TE placement are very common.  It seems impossible to believe, but it's true.  I've seen a ton of pictures and perhaps only a third of them look like they're in the "right" place and have a "decent" shape (e.g., sort of boob shaped) but the other two thirds are all over the place - too high, too low, too far under the arm, up under the armpits, too far to the middle (although that one's more rare), one too high one too low, hamburger bun shaped, triangle shaped, ledge on top, etc etc.  It's important to remember, as Facecrafter (I think) so nicely described recently,  that TEs have a job to do, which is to stretch your muscle & skin to provide room for your final implants.  What's isn't part of the TEs' job is to look or feel good, unfortunately.  That's the job of your final implant. 

Unfortunately some of the places they end up are less comfortable than others, like (partly) under the arm.  Mine (I had just one, from a uni-MX) was partly under my arm and the bulge there was uncomfortable.  It was also too high, and kind of "shelf-like" on top - I thought I could shelve a few books there the last few months to keep some reading material around!  Ha-ha!  While I'm still covered up from my exchange on MOnday, I can tell those issues are gone, thank goodness.  Other women could chime in as to how their TEs were in a wierd place but their implants turned out looking fine.  There's also a thread on BCO called something like "I love my new implants" just for women to talk about the positive - do some reading there and it'll help you breath easier.

I know from a logical point of view the question seems to be, if the tissue's being stretched in the "wrong" place then how is the implant going to sit in the right place?  Well, somehow it works.  The stretched tissue is being created, and it gives slack to where it's needed when you get the implant.  When your PS puts the final implants in, if needed she will surgically alter the "pocket" that's been created by the TE to move the implants to the more correct location, and she will then use internal suturing to keep the implants in the right place.  Such "pocket work" is very common.  The stretched tissue that's been created provides the slack to the whole area, even if it wasn't stretched in exactly the same place. Again,  I've seen lots of pics of women with wierd TE placement whose final implants look "right".

As to your specific question about the bra and so forth, each PS has a different way to handle these things, and with 600 cc in your expanders I'm not surprised she wants you in a bra for support, esp if they are "too low" right now, as you say.  The most important thing for you is to express very clearly to your PS how you want to look when you're done, like, as you said, both boobs in front looking forwards, closer together.  If possible, take pictures with you that look like what you want (from reconstructed women, not natural breasts).  PSs bring their own biases as to what "looks good" or "natural" and that doesn't always jibe with what you want, so you have to express what it is you specifically want. 

So that's a long way to reassure you Tina that its going to be ok!  In the meantime, you may feel like you want to disguise your TE-chest a bit, and some creative clothing can do that.  I wore a lot of scarves, mostly long ones - one end over one breast, wrap once around my neck, then the other end hangs over the other breast.  Someone, estepp I think, just described a couple days ago on this thread the use of mastectomy camisoles that allow for variable padding on each side to adjust the two sides to the same shape/size.  Mastectomy bras would allow the same.  Ruffled tops and jackets also disguise a lot. 

Finally, keep reading and posting here, as there's an amazing amount of experience and knowledge here and everyone will support you.  Also since you mentioned a desired cup size, I suggest you read and post on whippetmom's "Breast Implant Sizing 101" thread as the info that's there will help you understand how to get the size you want.  (Just don't mention cup sizes to her!)   And finally finally, keep posting and interacting on BCO, and after its very clear you're "one of us" and not a looky-loo, you'll be eligible to get access to a separate website with pictures that will further reassure you.

That was long...hopefully helpful to you and any other new MX'ers.  Must stop typing...surgery side is starting to tense up.    Hope everyone here's doing well!

CS

Hi Ladies...I'm new to the sight and have had MANY questions answered from this thread...so Thank You!  I wanted to know how you get into the picture forum...I would love to see what some of your results look.  I am scheduled for my Implant exchange on 6/1....Two weeks....YAYYYY!! 

Thank you MBJ...I will do that!

Deborah - I just want to express my gratitude for the all the help you have given me. Without you and the other ladies on EC I probably would not have had the courage to get my revisions done. I had them done on April 16th and I am still happy with the changes that were made. Although they are still not perfect I think they are the best they are going to be and I am OK with that. I should be putting my pictures up soon on the pic forum. I'm still on the fence regarding nipples though. I have plenty of time to ponder that decision though.

I do have a question for any of you ladies out there that have had a hyster/ooph. I am scheduled for that surgery May 25th and am getting very nervous about it. It is being done laparoscopic and I am starting to panic. How bad is the recovery? Any suggestions to help me through this next part of my journey would be greatly appreciated.

Donna

Tory. 

I'm so glad you were saved from chemo.  My onco did not want to order the OncotypeDX and insisted I do chemo.  I pushed and begged and finally she ordered it.  Then after I got my score she wanted me to go on Tamox because the test assumes Tamox.  I spoke to the Genomic Health people and they said their research was based on that because they began their research when that was the main drug.  He thought AIs would probably have a better outcome.

Since you asked...No I have chosen not to take Tamoxifen.  We all choose differently and I am not recommending what others should do.

I will tell you why I have chosen not to take Tamox and why I chose the Hysty/Ooph which you also asked about.

The Hysty/Ooph....I think I was finished with menopause by age 45..I really didn't have any symptoms except some flushing of the face after a few drinks so I'm not sure of the date but I am pretty sure I have been period free for at least 10 or 11 yrs.  I am now 55.  I have often asked docs why we spay dogs so they can avoid cancer but not people...and they always roll their eyes and say "its a big surgery".  Anyway all my docs who did not think I should have a Hysty/Ooph even if I got more polyps and had to have more D&Cs to remove them and to look and see if they were gone...all of a sudden as soon as I got BC said "sure!" when I asked again.  My gyno encouraged me to have the Davinci Robot surgery done by the ovarian cancer gyno so I could avoid another surgery if they found anything wrong.  During the Davinci, he could check the tissue and if anything was found he would be able to go ahead and sample lymph nodes and then if necessary remove them all to save me later surgeries.  Nothing was found, no lymph nodes removed....easy easy recovery.  The recovery would be just as easy with a normal laproscopic surgery for the same thing.  I think some of my friends over on Natural Girls think that I shouldn't have removed perfectly fine parts...so, I don't know if I needed them for something...but I made my decision based on not wanting any more D&Cs and not wanting to worry about a ticking time bomb  And  the big  And...if my ovaries were still producing testosterone...it could be converted to estradiol and stored in my fat thru the aromatase process.  I'm trying to rid myself of estradiol, so I went with the peace of mind and less estrogen decision.  Oh...re my estrogen....YAYYYYY!!!!!  since Oct when it was 32 ...I have gotten it down to 15.7 ..got my results yesterday.  I am doing everything I can to avoid estrogen in plastics, meats, soy, lotions, shampoos, conditioners, etc.  My new lotion is organic cold pressed coconut oil and I have switched to organic shampoos and conditioners.  Anyway, it is working... 

In answer to your question about Tamoxifen.....For me I decided this...Since my aggressiveness score on the OncotypeDX was so low and since there are other side effects that Tamox causes, I decided not to take it.  I filled the prescription, but it is still in the drawer.  Maybe there is a study that I can't find.  But, the only one I can find referenced is the one that was done a long time ago which said that Tamox caused 2 instead of 1 in a hundred to not have a recurrence within 5 yrs.  They said this improves my non recurrence by 50%.  I call it 2% non recurrence.  I also wanted the CYP2D6 test to see if I can even metabolize the stuff.  Oncologist refused to order it...said "It works for everybody".  So, I got my surgeon to order it.  I am missing one of the alleles on the CYP2D6 gene so at best I would be an intermediate metabolizer and I know I would get all the side effects 'cause I always do.  I decided against the Tamox because most of what I read refers to it helping me avoid BC in the other breast....Well I  had them lop off that perfectly good breast as well..because at the time I thought it would allow me to avoid radiation and chemo..didn't know my oncologist would recommend chemo even without lymph node involvement...For now I am choosing bioidentical progesterone cream and 30 other supplements and changing everything I eat, drink and put on my body.  My new lower estradiol number means that an AI would be silly.  I am already taking Chrysin and Melatonin which are both natural aromatase inhibitors.  I also take DIM and LE cruciferous veg somethingorother.  When tested in Oct, I had almost no progesterone (.4) which is what counteracts estrogen and causes apoptosis (cell death) of wayward cells.  If I have been estrogen dominant and without progesterone for at least 11 years...that is probably why I got ER+ BC.  Also, I had no D3.  After changing D3 brands and upping the dosage to 15,000 mg a day it is finally up to a respectable 61.  I will be doubling my progesterone.

I found a doctor in Jacksonville who is a Compounding Pharmacist, GYNO/Obstetric M.D. and an expert in Bio-Identical Hormones so I make the 6 hour round trip every few months to see him since he makes his own progesterone cream.  

Even if Tamox would cause an intermediate metabolizer's recurrence to be cut in half and I could stand the side effects (which I always get from drugs) ...that would still say my distant recurrence is 6% and my local recurrence is whatever 0% doubled is...which I think is still 0....so, for me...not recommending for anyone else...I decided to take the 6% and call it a day.  I have been researching for a year and all this other stuff I am doing and trying to figure out is a full time job.  But, so far I have chosen not to take Tamox or any AIs that are not natural. 

I'm still learning more everyday and love it when people on these amazing threads share their newest findings.  I don't know how I will know if BC comes back somewhere since the only followups I'm having are some blood tests.  Funny...my oncologist was so insistent that I do chemo, but my stats are such that scans of any kind are not warranted.  So, how would she have known if the chemo worked?  And since she doesn't test hormones, how did she know I had some that needed to be stopped?

Hope these answers helped and are not too controversial here.

Paula, thanks for your quick response. You made me feel much better and anm no longer going to call them my temporary boobs. I am going to be more proactive and make sure the communication stays open with my PS. That's why I switched PS's.

Anyway, how are you doing? Have you been bak to your Dr. since your breast started doing their own thing?  Sounds like it may be nerve connected. My right arm and shoulder kinda has a mind of it's own after I suffered recent trauma on that side and broke my shoulder. Possibly your body is just going through a release from things being cut and added. You too have been a blessing for me today; Thank you, Tina