Topic: June Reconstruction Ladies Please Join

I wasn't going to join this thread because my upcoming surgery is very minor, but I am going to NOLA for a bit of revision work on June 18th.  I get to meet Trishia, and will miss Sassie by several days.  We met there last year when she saw Dr. DellaCroce for a consult, and Sassie, I'm so glad you're going to have your surgery at last!  I can't wait until you're on the other side.  I know you've had a lot of concerns but you are going to be in the best hands!!  While I'm there, I will also have the opportunity to meet in person a woman with whom I have had a business relationship for many years.  We've become very good friends, especially over the past 18 months or so, since I was diagnosed and she tested positive for BRCA1.  She started her DIEP reconstruction on the East Coast over a year ago.  She is very unhappy with the stage I outcome, but is now expecting that Dr. D will do the amazing work on her that he did for me. Who would have thought that our ugly stage I outcomes done on opposite coasts would end up bringing us together in New Orleans????  Oh, please add her to the list as "Sandy's friend"  June 19th NOLA - fix up Stage I done elsewhere.   Thanks, Sassie!!

Hello, ladies, I've been reading this board for a while now and am finally "joining in." I just met (finally) with both my general surgeon and plastic surgeon yesterday and it looks like I'll be having a mastectomy (rt. breast only) and immediate reconstruction (TE) sometime in June, probably mid- to late month. I'm waiting on the two docs to coordinate a date and let me know.

 I have learned so much from browsing this site and want to say "THANK YOU" to all the brave women who have not only persevered through several stages of daunting psychological and physical challenges, but also shared their journeys here and in doing so, helped someone else.

 And oh yeah, I'm in Oklahoma.

Welcome Momsdaughter, Sandy's Friend and pkb143 and Xspectmiracles.  Glad you are joining us. 

Momsdaughter no surgery is too small to mention.

I love the name Xspectmiracles.  What a great handle.  Yes, May 28th is close enough Xspectmiracles.  Yes, I love tapes when the stress gets too much.  It has kept me sane.

pkb143when did you have your lumpectomy?  If you don't mind me asking if you had ductal carcinoma in situ why did they decide to do the mastectomy?

Sam1991 I have a friend who is getting the gummy bears.  She found out that no one in MI is using them at this time.  Which is unbelievable since they have been using them in Europe for about 20 years.  Anyway she went on the net and found out that Cleveland Clinic is using them so she went down to Cleveland today. (That was the closest for her)  I have not had a chance to talk to her today but from what she told me you have to be trained in how to put them in.  They are a  different animal than the rest of the implants.  It just seems like you are going through a lot of surgeries.   Had you considered going out of state to have them put in? 

Sassie62

Dx 11/2007, IDC, <1cm, Stage I, Grade 1, 0/2 nodes, ER+/PR+, HER2-

Ladies

I saw the neatest thing today.  I was in a bike shop and saw socks that said

"Save the Ta Ta's".  It had a pink ribbon and they were so cute!!

I had him order me a couple of pairs.

Sassie62

Dear PKB143

I think you made a wise decision.   I too was small breasted and the tissue was dense.  I am surprised they were able to tell so much by just a biopsy and a MRI.

(2007 the second time around) I had two mammograms in 3 months and a needle biopsy and they still couldn't tell until they did a lumpectomy that it was cancer.  It was very small and right next to the chest wall. They gave me a choice of lumpectomy and radiation and I said take it off. I didn't want radiation either.  I made the right decision because when I had the mastectomy there was cancer in another area of the breast that they hadn't detected.  I have heard this story over and over again where it is in another area that they can't detect until after the mastectomy. The surgeon who did the lumpectomy was very against the mastectomy.  When she said Radiation would get the rest.  I knew it was time to move on. So I changed surgeons and had the mastectomy.  I am happy with my decision.  It was the right one for me.

Have you found out when in June they are doing the mastectomy?

My prayers and thoughts are with you.

Hugs

Sassie62

Thank you, sassie, I really hope I made the right decision, but I'm the one who has to live with it (well, and my hubby to some degree) so I guess it'll be right one way or the other!

Yep, I've got very dense breast tissue, too. I'm glad you had the gumption to change docs! Good for you! It seems like mine are going overboard to let me make the decision, and I truly appreciate that.

 No, I haven't heard back yet on the date. I really hoped they would call yesterday and they didn't, so I'm still waiting....so tired of waiting....

Thank you for the thoughts, prayers and hugs! I appreciate it so much. I'll be thinking of you on June 4 and hoping things go well for you!

pkb143, I totally agree with your mastectomy decision. I would have decided the same thing in your situation.

What are gummy bears?

Thank you all so much for your support! I just hope I don't wimp out once the "real work" starts and I begin 10 weeks of fills and TE pain. It sounds rather daunting but I'm getting great ideas and preparation from reading here (like sleeping in recliners, getting button or zip front blouses and PJs,etc).

The women who are going through so much more than I will, like radiation and/or chemo, then surgery and/or reconstruction, are truly inspiring.  There are some strong ladies here!  "Steel Magnolias" comes to mind....

 The silver lining, or can I say, "booby prize", will be that once I'm all done, for the first time in my life I may actually have some cleavage.

**xpectmirac....I'm not sure what gummy bears are, but I think they are a new kind of silicone breast implant just coming out on the market. I think one brand they are marketed under might be Mentor, which is among the choice of implants my plastic surgeon has, so I'll be checking on that. 

Regarding gummy bears- now that they have been described (thanks Jaimieh) I wonder if my PS is using them. When we went for the surgury consult he showed us an implant with a cut in it. The silicone did not leak out. It was thick and slimy to the touch. But, I think I read earlier that only a few places in the country has them and I doubt that small Harrisonburg, VA would be one.

14 days till I fly out to New Orleans for my surgery. 

I am starting to get cold feet and second guessing my decision as it grows near.  I keep thinking should I not rock the boat and go through life flat chested sewing in pads in everything and dealing with these awful prostheses?  I am not a candidate for implants so it is the Diep or Gap or flat chested.

I so wish I was going down to NOLA with one of the women that have finished stage 1 of the Diep or Gap and was going down to do stage 2.  I need a little hand holding at this point.  I know EVERYONE that I have talked to says I couldn't be in better hands than Dr. DellaCroce but I am still getting nervous.

I just wish I had a crystal ball and I could see on the other side of surgery.  I have tightness now across the chest.  They scraped me like a turkey in both mastectomies that I had.  I had very aggressive breast surgeons.  They even scraped my muscle. The first time around it was necessary the second time around on the other side I am not so sure?

3 weeks prior I am not allowed to take anything other than a vitamin with iron until the surgery.  Of course what do I have  - but a cold.  I am going to have to call NOLA today and see what I can take if anything.  I have to go for my EKG and my blood test this week.

Ladies I will contact my friend who just got back from the Cleveland Clinic and get all the info on the gummy bears for you.  I know that they are supposed to be the safest in that if the shell ruptured the silicone is supposed to stay intact and not migrate.  I know that they have a definite shape unlike the other implants.  They are of course denser so they would be firmer to the touch.  They have been used in Europe for years.  I will try and get more details to pass on to you ladies. Yes, I agree implants in general have been improved since the 80s when they caused problems. From what I understand the remaining problem that some women have is contracture.

sassie

Sassie honey you are going to do great!!

Of course you are nervous!  It's perfectly normal to be nervous. I had to take valium on the flight down to New Orleans.  But once you step into the Center and Katie greets you with that fabulous smile of hers, and Sally takes wonderful care of you when she does your intake, you will KNOW you will be okay.

Feel free to call me if you want to chat about it.  You have my number in my emails. 

I'd like to join you June Reconstructioners.  I had bilateral mastectomies March 24, and will have TEs placed June 22.  I am not looking forward to starting recovery over again, but I have done really well this time, so I will just continue to expect the best.  I was going to wait over the summer, but I feel like my life will be on hold until I take that next step, so onward...

By the way, I had a friend give me a T shirt that says "of course these are fake, the real ones tried to kill me".  I thought it was too funny, and I look forward to wearing it - right now it just wouldn't make sense with my flat chest!

Welcome 2new1s and libby.  Glad you decided to join us. 

That shirt sounds great Libby!   2new1s I hope second time is going to be the charm for you and no more problems.  That is a great handle 2new1s.

Thanks for your kind words Trishia and PKB143.  Trishia I will take you up on the call and thank you for offering.  I don't care how many times I  go over this procedure I continually find out more about it that I didn't know. Probably won't be until after memorial weekend. 

Can't believe it I have a virus.  Just got out of bed going to go for some soy ice cream. That always makes me feel better.  Than I am starting on the chocolate frozen bananas. Maybe if I eat enough of it Dr. D will say I have enough abdomen for a large B cup rather than a Full A with the Diep.

I just got back from our Cottage in MI.  Planted a small flower and herb and vegetable garden.  I am excited about it.  I will recover from surgery there and I will enjoy going out to the garden and picking tomatoes, peppers, basil and cucumbers.  At least I have high expectations.

Hugs to everyone

Sassie

Sassie, thanks for your email today.  Leaving my company behind when we are so busy right now to go to the FORCE conference just made this week all the crazier for me. 

I was busy selling t-shirts, tanks, hats and tote bags in the exhibit hall to raise funds for FORCE, so I missed most of the lectures.  However, I did go to the Flap Reconstruction session, and it was very informative. First, Dr. X  talked about the history of flap reconstruction.  Surprisingly, she also mentioned more than once that she is not as experienced doing flaps as she would like to be.  She talked about traveling between three cities now to do reconstruction, and that left me wondering what would have happened to me if I'd been her patient when my left flap nearly died a week post-op.  There was a very short Q&A time after the lecture, and I raised my hand to ask her, but time was up and I did not have the opportunity.  Dr. DellaCroce spoke for the second half of the session, about the myths that surround how to choose your plastic surgeon.   I am going to try to get a transcript of that part, because it was really informative and I could post it here.  He showed several sets of amazing before and after photos of some of the bad reconstructions he and Dr. Sullivan have re-done, and yes, he did show my photos.  I was unable to look at them up on the big screen because I was way fatter before he did so much liposuction for me and I just can't stand to see how bad it was (and I still have a long way to go!).   A friend sitting next to me figured out that they were my photos because she recognized the watch in the photo as the one I was wearing.  It has a dark pink face, but probably not as pink as my face was when those pictures were being viewed by all in the room! 

My husband and son went to Orlando with me and I needed to spend some of my time there with them, so I only participated in the Show & Tell the second night.  That was quite an experience.  It ended up being Show & Tell & Feel because many of the women wanted to know what a DIEP or GAP breast feels like.  A couple of them asked me if I'd had nipple-sparing surgery---quite a testament to the reconstructed nipples Dr. D makes. Many of them had implants with painful capsular contraction or marked unevenness and are looking into having them replaced with tissue flaps.  What an amazing experience it is when you are talking to someone and you see their eyes light up with hope for the future.  I just cannot describe the emotions I am still feeling about that night but I have tears in my eyes just thinking about it.

It was wonderful to meet many of the ladies from FORCE with whom I've corresponded or talked to by phone.

I will definitely go back next year.   There were so many great lectures, such as "Reclaiming Your Sexuality", "Writing Your Story",  etc.  Sue Friedman and her FORCE crew left no detail unaddressed.  

Several plastic surgeons took turns hosting the Show & Tell, and were available to talk and answer questions face to face.  I found myself explaining my story many times, and was inspired to begin writing it sometime soon.  I registered a domain while I was there and hope to soon publish a web site on it so I can offer hope to more women who are not happy with their reconstruction.

Before we left for Orlando, I finally mailed letters to the CEO and medical staff director of the hospital where I had my stage I DIEP, informing them of some issues I have with the care I received there and issues with my first plastic surgeon.  The CEO called my home while we were away and spoke with my daughter, offering an apology.  I received flowers from him yesterday, along with a note.   The medical staff director called me yesterday and I have an appointment with him at the hospital on Thursday.  

I have it on good authority that the gummy bear implants are not much different than the cohesive silicone implants already in use here, and may have some disadvantages.  I was told that we are gravitating to the "warm and fuzzy" nickname for them, when the current cohesive silicone also does not leak out of the shells.  

Sassie, I have talked to many women who have stated that once they arrive in NOLA, a feeling of peace comes over them and they let go off all of the nagging doubts, questions and and concerns.  I recall waiting so long to finally get there that while Dr. D was marking me with his blue markers for surgery, I started thinking about how I was finally there and would finally be fixed.  I was so overwhelmed that I started to feel like I was going to pass out!   I forgot to tell him a couple of things that concerned me, so I wrote him a note the night before surgery and asked the nurses to give it to him, which they did.  I found myself pretty darned relaxed entering the hospital each time, and the last time I went to NOLA alone, checked myself into the hospital alone---it was less stressful than a lot of other things I do.  You are going to be just fine! 

Sandy

I am having a lat flap done on june 9th.  it has taken me 10 years to decide to do this but am going to love donating my prosthesis and bras to someone who can use it.  I am getting a little nervous about the drains-hated them after my masectomy  but am also getting very excited.  I do have a question though.  My breast is rather large D/DD,  what do you use to look even while being expanded?  My ps said some of her patients used bags of rice?  Does anyone have suggestions?

Gina