NOLA in September?
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Wooooo ladies, you keep me hopping!! You guys are so amazing...and I'm wishing for the best recovery to those recent 'graduates'!
Stage Two candidates, Our time is approaching so quickly!
QUESTIONS - I am so assymetrical now (one side diep after failed hip, one side hip). The diep side has dropped dramatically. I don't think there's a chance that I would qualify for nipple reconstuction during phase two, as is often done. I would think I'll have to be shaped up and then wait for settling. any thoughts on that?
Also, I've looked at the 3D tattooing on timtams site. I'm really starting to lean in that direction. It seems so much easier to not wear a bra, in pics it TOTALLY looks three dimensional, and there aren't any issues with my husband having any type of preference. He wants what I want. Who does the3D work, and is there anyone here who has had it done?
Would love feedback, both pro and con...whether you've had either procedure or what your plans are to do in the future.
Carolynn
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PS....my stage one was in NOLA with Dr S, and I was given two black lace bras. They hook in the front and are more like a leisure style.
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Hi Ladies!!
Got back last night but was too brain dead to type. Just a little background for those of you who don't know my story. My son and I have Li-Fraumeni syndrome. I was tested for it in 1995 when my son was undergoing treatment for rhabdomyosarcome (muscluar cancer). Anyway, I NEVER got my results. I asked and asked and asked. They kept telling me my results were muddy. Even the one time I brought Tre back to Children's for follow up, I asked again. Still nothing.
Fast forward to this time last year. My mom is dx with breast cancer. Her surgeon hears our history and sends us to the genetic counselor. She does the whole intake with me and my mom and I tell her that I had been tested. She calls and Children's and what do you know...there are my POSITIVE results that I have never even seen! So after 13 years I get our dx. My mom tests negative. We don't test Tre as he has had a cancer that is part of the Li Fraumeni sydrome.
So, I found a local doc (no, I didn't have one before) that I actually like to see Tre and I. We have all the recommended blood work and a physcial screening. But no scans yet. The genetics counselor here recommended I go see the specialists in Seattle to come up with a screening program. I just now did that. A year later I know, but this year has really been all about the new breasts!
My big questions to her were about balancing quality of life with still being proactive with our survellience. We haven't 'lived' cancer for many, many years. When I found out about our dx last year and read all the testing they recommend, I was like NO WAY!! I do NOT want to live my life waiting for the next set of test results!!! Then about nutrition and health...especially for Tre as he will be leaving the nest soon. And finally about my CTA results.
Yesterday did go well and liked the doc, but I still don't have a plan for survellience. Our syndrome is just SO rare that they dont' have a standard protocol like they do for BRCA. She said they see about 900 cases/families a year for various disorders and only 1 or 2 Li Fraumeni cases out of that. We need to limit our radiation exposure, so she recommended MRI's of anythign that we are concerned about. A PET Scan of the body can be used a baseline, but may lead to many other surgeries and biopsies. She said a physcial exam and blood work yearly were a must have. And that if anything was out of the norm for us to be sure to have it checked out. She said there is no crying wolf with Li Fraumeni.
She did feel that I needed follow up for the growth on my adrenal gland, but my fibroids and ovarian cysts are pretty standard for most women. She did not see any reason why I need a hysterectomy! YAHOOOO!!! She also is the FIRST doctor that listened to me about hormone therapy once I need it. My question has been that I have been having a menstural cycle ever since my breast cancer dx 17 years ago. They offered me Tamoxifen back then and I refused based on all the of the side effects and being 21. I think they wouldn't have given me the actual choice in this day and age from reading on other boards...but I digress. So, hormone therapy is actually less hormones than produced by a woman naturally, so I have always failed to see how I can have had hormones for nearly 20 years but won't be able to when I am in menopause because I had ER positive cancer. SHE AGREED THAT I COULD!!! She said that cancer treatment isn't black and white but has to be designed for each individual. I was VERY happy to have someone listen and not just panic when hormones and bc are mentioned in the same sentence.
I am HUGELY into doing as much as I can naturally before I take any type of meds or have more body parts removed. She is not like that at all, so I will visit with my regular doc or even find a naturopath to answer my nutrition questions...things like Vitamin D testing and levels and healing foods. I won't go raw...LOL! But I am open to suggestions.
The did test Tre. He is like the control. If he turns up positive (which they are 99% certain he will) then they will test my dad even though his family history is not full of cancer like my mom's. And then they are recommending my mom test for BRCA since there is so much breast cancer on her side. I asked if it was posible for a person to have Li Fraumeni and BRCA and they said, extremely rare, but yes. My hubby looked at me and said, "Yep...that would be you." LOL! If he is negative then they feel like we may be dealing with a new strain of defect.
So that's where I am at. We will see our doc next month for our yearly check up. I was lucky enough to meet someone else with our disorder online and she lives in Seattle so we all went to lunch afterwards! She has had 2 cancers and 2 pre-cancers. Her dad and grandma both had 4 primary cancers. What a story. She just got her dx 2 years ago and did have a full body PET scan as a baseline. It did turn up some things, and she spent the last 10 months undergoing additonal testing with no results.
That is my fear and what I am contemplating now. What do I do? What do I follow? Since our entire body is prone to cancer, everything is suspicious. What would you do? My sister thinks I should have a baseline PET and so should Tre. I am gathering opinions and advice and would love to hear it!!! You can PM me as to not clog up the NOLA thread! Sorry this is SO long! It was a lot to process.
It is SO cool to meet the people we connect with online. Can't wait to get to meet all you ladies who are going to be in NOLA during the 2nd week! Jennifer are you ready for Magazine street?!?!?!? I am! Bring on the shopping!
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Yahoo!! FINALLY got right drain out... still have left one, but hoping it drops enough to go next week!! Plainjane64 - sounds like u have a lot of my issues!! Right breast was radiated in 2001 with my first breast cancer. Lots of rad burns below and to right side, and now almost complete bottom side of my breast is hard as a rock! S L O W L Y is getting better as I try to massage. Was some on the top too, but it is softer now. It is just a very slow process. Dr D said it could take months. Know that is not what you want to hear, but better than thinking you may lose the whole thing again, which is what I was afraid of till I had to go back to get drains put back in on 10/19 and got to talk to Dr D. Hang in there. it WILL get better!! I know it is hard to "massage" really hard areas, but what Dr. D showed me was just kinda press in and work you way out to edge (sorta pushing fluid out). Be aware - as you get the fluid out of the tissue, you may look more swollen until the newly released fluid is "reabsorbed" as it should be. And my left breast is "very" saggy, but he told me he was leaving it "underfilled" till we saw what the right side did, and we could fix it all at Stage 2, so have faith!
As for the bras? Think it may be different for everyone. I am large woman, so I got just plain white abdominal binder, and some beige leisure bras that hooked in the front, and a couple of white ones that velcroed shut in the front and had no seams whatsoever in the cup. My beige ones are 46 and 48. Think it may just depend on what he has in stock and in what size when you are there?
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Hi. I am new to this board. I've only written one other post. Pam told me about it and I'm glad she did. I was also wondering about the Tummy Tuck. I will be having one during stage 2 at NOLA in Dec. I'm wondering how painful it is and about recovery time. Has anyone here had one?
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Hi and welcome WPLD. I think I had a tummy tuck during my stage 1. It is very tender in there still (nearly 3 months out) and feels deeper than the flesh incisions, that are all fine. Just feels very tight inside there and gets a little puffy at the end of the day. Must still be healing. Anybody else?
Trisha, bless your heart girl. Good luck with your decisions on all that. I think you have a "live life" attitude and let that be your guide. Also, I totally agree with limiting radiation exposure. If you are at risk (and aren't we all now?) I would totally be careful of that. Does PET have radiation? MRI sounds like it does not (magnet I guess!).
Gin, Congrats on one drain down woman!!!
Carolynn, I think that you will have symmetrical or nearly so boobs when done. I think a lot of beautifying will happen in Stage 2! I am also different sizes, the rads side is smaller, tighter, and I can see this indentation between the two flaps on the side! I am assuming that will all be taken care of, and filled in. I will report back!
Spring.
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I must be the oddity! My rads side is bigger!!! I think Dr. S may have put a little extra there since I was concave on that side!
Hey Wpld - welcome!
Tricia - WOW. You had a HUGE day yesterday. Sounds like a LOT of information to absorb. Take your time and I know that you will come to the right decision as far as imaging and follow ups. I am with you on the hormone thing.... it always makes me nuts and soon I will have need to discuss this in depth w/my oncologist. The gyn/onc is all for hormones, but he said the ultimate decision is with my medical onc. They work in the same practice so maybe the three of us can get together and come to a mutual understanding.
GIN - BYE BYE DRAIN!!!! whhooopwhoop
Jane - glad all is going so great at work - well mostly so great! I'm sorry for the co-workers that aren't so great... aren't there always a few?
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My breast don't look the same either but I'm hoping they will fix that during stage 2. I'm eight weeks out today and the incision on my left breast isn't even healed yet.
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Trishia...............Sunshine...............so glad you found specialists.............If you even think you MIGHT want to come to a different neck of the woods just to get another point of view like DFW or Houston....you KNOW you are MORE than welcome...It's a long haul BUT nicer to find others who share your journey and maybe there are more...MD anderson have anything? It's less than 4 hrs drive from me and my bro lives there...Just a thought.....My dear ANYTHing that makes this better easier for you.....................EXCEPT for the fact that you already have the MOST valuable tool......Girfriend you got it going on...Your attitude and spirit are to be modeled. You all will be OK...You ALREADY ARE! AND OH YES, I am READY for shopping!
GIN! Congratulations! yes, I guess I am slow...waaaaah! Thus the reason to send in info...If I find it's better to wait...I'll listen to whatever...they're still FABULOUS! showed my Brazilian anesthesiologist friend the new breasts in the girls room today...Looked a bit strange when we both came out together!...oddly she invited me to go to Brazil w/ her to visit her mum and dad in sept and that's when I told her no and why not....Oh well next time! Funny, her voice reminds me of Donnatella Versace from SNL every time she speaks!
ok, more this wkend! Have a lovely fri eve ladies!
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Since many of you are looking forward to your stage II surgeries, just thought I'd throw out a bit of what I've gleaned from my experience. I was originally leaning towards no nips due to reading so much about ladies not needing bras any longer, and being concerned about having headlights on at all times. Then after meeting a NOLA grad in person who went for "just barely there", I decided that I wanted a little something---pretty much the same as what she had ended up with. I did ask my husband what he though, but just like when I was deciding between a right lumpectomy and bilateral mastectomy, he said that whatever I wanted was fine. Later on, after my "just barely theres" were very just barely there and could not be felt to the touch at all, he expressed that he didn't understand why I went so far in pursuit of restoration to original equipment but stopped short with the nipple recon. I realized that he was missing what used to be, and thus began my quest to add something to make them palpable to him once more. We've tried Radiesse injections and the subtle effect only lasted 3-4 months. Last summer, Dr. D did fat grafts under the existing nipple recon, and though initially they were just right, they didn't last. A couple of weeks ago, he completely re-did the nipple recon and added fat grafts inside the new nips. When the nipple recon is done over again, it incorporates scar tissue from the first time which adds body to the new nips. I've communicated with several other ladies are also now in search of more substantial reconstructed nipples and I offered myself as a guinea pig to see just what was possible. My husband has told me that it didn't matter to him if I had reconstruction at all because he just wanted me to live, but in getting back to life after this journey, it seems that he and I both have preferences that we weren't expressing, or didn't even realize we had. Reconstructed nipples are usually very soft and they compress under even light clothing so they really don't give you a "headlights on" effect. So, along with all of the fine sculpting you're about to receive, think and talk about what you want the final result to be when you are able to walk away from all of this and carry on with life.
Yes, I will share the recipe. Just need to find it!
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Sandy, that was very interesting, and I too have been thinking about this given my phase 2 is now 1.5 weeks away!!
I have a "real" nipple and areola on my prophylactic side, and also have a "real" areloa on the other side: so missing one nipple. So occasionally, now, I have a "one headlight" effect when the "real" one contracts. It also relaxes, though, so it's one and off, if you use the headlights analogy!
This makes me wonder what to do about the other side? Do you have any thoughts? I don't really care if they protrude or not, (would prefer not) but I do care about matching. I am wondering if this is possible in my case? Hmmm. Thoughts?
Spring.
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NORDY - my radiated side is BIGGER too!
GIN- YEAH!!! You go girl!
Sandy and Spring - I am also wondering about nipples as my stage 2 comes closer. Great info Sandy, I will definitely have a serious conversation with my DH now. Really good info. Thank you.
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Oh Yeah, Spring - I feel the same way in the tummy area. How would you know about the tummy tuck? I did ask Dr D about it before my stage 1 and he told me that the tummy tuck was not possible for stage 1 diep because the incisions made in the muscle for diep and the incisions made for the tummy tuck work against each other. So the healing would be compromised. So I am sure for that reason I did not have one. But we had different procedures.
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Spring, I'm not sure but I'd bet Dr. D knows what to do!
Melanie, I'm confused about the tummy tuck you are discussing. Are you talking about muscle (diastasis) repair?
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OMG, so you think I did not have a tummy tuck (muscle stitching) yet Mel? And this is just all normal DIEP healing? HOLY CRAP!!! That is one sore tummy!
I will ask about that in my presurgical. I think I will pass on the tummy tuck if I haven't had one yet. (I am getting surgery weary...this will be my third within a year!! I just want to be normal again...)
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Cute Holtbolt!
Eeks, I'm really confused now about the tummy 'tuck'? Mel you had DIEP so you had it? me confused!...I'm pretty sure mine was tucked?
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I could be wrong. But I dont think they ever do tummy tucks during a stage1 DIEP.
So today is my Bday : )
I took new pictures today to compare to my 5 day pictures. My right side is looking better. The Clevage Swelling & stitches looks better- but has a long way to go.
My Left side is about 2 cups sizes bigger : (
I had No Rads. The left does have Necrosis on top near the clevage & on the bottom near the outside. It sits higher then the right.
Good the necrosis is on the bigger side. i really do not want to be any smaller then my right side already is.
Bruises are darker then on day 5.
So yesterday I checked out my backside- Which is looking better then I expected...And I thought alot of stitches had disolved. I was picturing all that black stuff- black stitches like the drain stitch...Dh pointed out that it was scabs falling off not stitches absorbing! LOL
Oh well-guess I got excited for nothing. It sure is hard to see back there.
Spring- I hear you on the Normal. it takes along time to get back to normal : (
This last surgery was my 6th in 18 months. I so want to be done!
Pam
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Wow Trisha, Like Nordy said that is alot of info to absorb. Good Luck thinking it all through & deciding what you will do.
Glad you found us WPLD
Pam
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Holtbolt love the video
Spring about the tummy tuck stuff. I had the same surgery as you and I had quite a bit of tightness in the front. We didn't have much tummy fat so I think all that tightness was due to pulling down the skin to meet the lower incision once they removed the diep flap. You can check with Eve she posted something about having her stomach stitched about a year after her diep. I could be wrong but I feel that stage 1 is all about establishing viable flaps and stage 2 and 3 are about cosmetics.
Pam Happy Birthday. Mine was yesterday.
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Happy Birthday Pam!!
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HAPPY BIRTHDAY PAM!
Spring, I'm sorry babe, but I really don't think you had an actual tummy tuck. Same here, my stomach is flat and tight...but he did say he could go back later and tightn muscle if I wanted to during stage two.
Sounds like the nipple rarely creates much of a protrusion, so if that's the case, I'm probably going back on the nipple reconstruction bandwagon. Had second thoughts for about a week...
I am SOOOO looking forward to Dec. 9! My dh is coming down the night I have surgery. This will be our first alone trip without the girls in a very long time...and frankly a much needed break. I'll have him force me out walking! LOL Although I've been to NOLA on a pleasure trip, this will be his first visit. I'll have motivation to get out and take him to some of my favorite places. I think this will be good for us. (Even if Dr S does lipo me into one big bruise!)
to you all,Carolynn
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HAPPY BIRTHDAY macksix6!
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Sometimes muscle repair is done during a tummy tuck operation, but it's an additional procedure. Having DIEP flap harvest pretty much results in a tummy tuck, with the incision line at varying heights depending on the blood supply, but still skin and fat are removed, the umbilicus is cut free and replaced in the skin that has been pulled downward, and the top and bottom of the harvest area are pulled together. It's the diastasis repair that is not done during stage I because once the blood vessels are teased out of the rectus muscle, tears could result if the muscles are then pulled to center and sutured together. The tummy tuck is a horizontal incision, and the diastasis repair is vertical, repairing the division of the rectus muscles that have been stretched out from pregnancies. Spring has received the tummy tuck benefit of DIEP, and if she wanted diastasis repair, it can be done in stage II, along with having the horizontal incision lowered if possible. It does entail opening a large portion of the abdominal incision to gain access to the upper part of the muscles.
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Happy birthday, Pam and Stephanie!
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Sandy
Thanks for clearing all that tummy tuck stuff up. You are the BC DIVA source of information!
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Happy Birthday Pam and Carolynn!!!! Mine is Monday. All the cool chicks are born in November!!!
I didn't have the rectus muscle repair. I could have asked for it at Stage 2, but I didn't want to reopen my tummy incision. My stomach is flat and beautiful without it though!
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Hit enter before I was done....LOL!
Thanks for all the well wishes. I am lucky to have grown up in a household with a dad that preached 2 things...everything in moderation and 'your attitude determines your altitude'. I've been blessed to carry that with me and it's gotten me through many a rough time.
I think I am going to have the baseline PET done. They are going to want to scan the adrenal gland anyway and I am already at my maximum out of pocket for the year. MRI's are no raditation, but I am so claustrophobic. It takes me 2 valium to just be in the MRI room. I am still not decided on Tre. I'll wait to get his actual results in a couple of weeks, but I am leaning towards having a baseline for him as well. Then just the blood work and physical after that.
I may change my mind tomorrow. That seems to be the case with me...LOL!!!
Hope everyone is having a good weekend!
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Dear All,
I am jealous that Sandy is considered the BC Diva source of info! I've been away from this thread for too long, and she has answered the tummy tuck question so well, that I have nary a thing to say, but I'll think of some things just so she doesn't totally best me! To Sandy: PPLLLBBTTT!
All she said is correct. Anyone that has a DIEP has a tummy tuck - it's basically the same kind of tummy tuck you'd have just for your tummy. In my case, I noticed that after all the healing and swelling had gone down post stage 1, my stomach wasn't totally flat - like flat flat. There was a very subtle ridge running vertically down my stomach - like a little roof line - slanted away and down from the middle. I asked Dr. D. about this, and he told me I was seeing the muscle - where it had stretched apart during pregnancy, and that there's nothing you can do to get rid of it short of surgery. He said he could repair it so that it would be like it was pre-children, and that it would add only a half hour to the stage 2 procedure. He said my stomach would be "flat as a board." He'd be going in thru the same incision as he would be revising anyway, but he warned me that it could be pretty painful for a while post-op - "like a bolt of lightening has hit your abdomen" or something like that!
So I had one night to decide. All that afternoon and evening I was eyeing women's stomachs all over the Quarter and noting the one's that were really, really flat, and badgering my husband with, "Do you think I should do it?" over and over again. I imagined how great it would be to be that flat-tummied! A stomach "flat as a board"? Wow!
I had to let Dr. D. know my decision prior to surgery the next morning, so had to stay alert so I could give him permission to proceed with it. I also had 10 more questions to ask him! So, in the final moments, I decided to go for it, and he said, "You're fearless!"
Anyway, long story longer, when I woke up I expected bad pain, but it was not bad at all! Great pain control - I can't say it was any more painful that post stage 1. But it was more pain than if I hadn't had that extra procedure - otherwise stage 2 would have been a total piece of cake for me. Recovering from it, in addition to still recovering from stage 1 was hard - I have to say that it was a long time, adding the 2 stages together - to feel discomfort, and it really started to get to me. But now, 2 years out, I am soooo glad I had the extra procedure.
My understanding is that this abdominal muscle tightening won't have the same big impact on everyone - it depends, I think, on how much padding you have there after stage 1. Some ladies still have enough that the muscle is not so visible as mine was, and so there wouldn't be enough benefit to warrant the extra recovery. But for me, it was definitely worth it and definitely made a difference.
And there you have it,
Eve
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Well, Eve, my tummy isn't nearly as flat as yours even after the muscle repair, so there YOU have it. I can feel the tightness of the muscle repair still two years later, but cannot see it. My husband is losing weight, my daughter is losing weight.....I lost a few pounds last month but now I'm at a standstill despite walking three miles every morning and no longer eating meat or most animal products. I feel like I'm in for the fight of my life to lose this weight, so don't be jealous! Someday, I hope I can show Dr. D that all of the extra work he did for me was worth his time. Okay, I'm off to the treadmill---with shoes this time!
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