DIEP 2013
Comments
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Tammy, Cherrie and Goldie, thanks for your replies.
Is there anyone out there that did have tissue expanders to help with nipple sparing and subsequent DIEP that wasn't having chemo and/or radiation in between? I would love to hear how your experience was. I kind of hate to cancel my whole procedure, but I'm having a crisis of indecision now that they have changed my surgery type.
And they are not doing a nipple delay like Angelina Jolie had which happens a few weeks before the nipple-sparing mastectomy where they elevate the nipple-areolar off the underlying breast gland, cutting off blood supply except from the surrounding skin. Then over the next few weeks they expect the remaining blood supply and the blood flow to the nipple-areola from the surrounding skin to become more robust. The expectation is that the improved blood supply makes the subsequent nipple-sparing mastectomy safer and decreases the risk of nipple necrosis and wound healing complications.
In my case, they want to expand the skin slowly with tissue expanders to put less pressure on the nipple, which they feel will result in a safer and better look. Anyone have the tissue expanders before DIEP who wasn't doing radiation or chemo in between? Thanks.
Deb
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Sbe- Oh Noes!!!! So scary that it came back and I hope it heals up quickly for you.
Sherry- Congrats on getting out and about! That made such a difference for me when I felt like a part of life again. Enjoy that bike!
I have an appoinmtent with PS on Thursday so we shall see how that goes. I spent the morning massaging my left side and took some ibruprophan so it stopped hurting. Tummy is also not as hard as it was. It is hard to show the doctor when it changes like this but I do think it is related to the superficial lymph system. At this point I just want some ideas on how to get it down so that I can function. -
Debwarrior, there is a woman I met on here on a different thread that had the same thing done they are wanting to do for you, but she ended up having implants, not diep. I am doing expanders before diep, but not to save my nipples. They are long gone. I am doing it to have a better aesthetic outcome. Also I had to gain weight, which has been a process. I would go visit the NOLA site and the PRMA site and see if you can find any info there. Those two facilities do more of the cutting edge surgeries.
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me again....I don't handle boredom well.
Tammy....would you try and "explain" the lymph massage technique?? I bet it would be super helpful for many. My PS's explanation about lymph disruption/flap surgery agreed with what you were told by your therapist.
sherry....OMG....your post has made my day!!!!! Talk about doing a complete 180!!!!! So happy for you, start slowly, but enjoy that bike!!!!!
sweetpickle....can you take measurements and photos and keep a record of what's happening to you, to give your PS/BS/whoever more info????? I agree, it's hard to convince someone if the situation keeps changing. Kind of like taking your kids to the doc when they're sick. At home....they act like they are about ready for you to call 911, when the doc sees them....they're happy and climbing all over the exam table without a care in the world....making you feel like a "crazy lady".
bailey....keep the "hat"....don't forget your appt. today!!!!
sbe....could you be reacting to the honey???? I react to crazy things....the bio oil that goldie loves....rash city for me!!!!
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Hi Goldie,
I talked to people at NOLA and PRMA and in neither place do they do the tissue expanders prior to DIEP, unless there is a compelling reason, which I don't think I have, so I'm still pretty confused.
Deb
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Debwarrior,
I would get a second opinion if you are not happy with the answer's you are getting. I don't know what else to say. Where do you live? Are there other options in your area? The women in the bigger cities have more places to go for second opinions. I am impressed the NOLA and PRMA spoke to you on the phone. Nice to know!!!! I thought you might find some info, or blogs that docs had written, but for them to actually go over this with you is impressive.
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Nihani, good thought about the honey. I wish you could handle the bio oil. My scars are basically gone in most areas. I am also wondering if SBE is harboring bacteria on her skin that might need to be addressed. There was somebody on here that went for their pre-op and they did cultures of their various oravices. Also, I "very" much hate to say this, but the first bad attack was a few days after the baby was born. SBE, were you with the baby again recently? I know it is far fetched, but I remember thinking the first time you got cellulitis that you were tired from the baby coming, and your immunities were down, now I am wondering.....
It's just that my grandbabies are germ bags, and I have had more illnesses since they came along then I care to mention.
Also, I had a friend whose kids kept getting strep over, and over again. Fianlly, the doc asked her if she had a dog. Well, yes she did. They cultured the dog, he was carrying strep.
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No worries about the bio oil, goldie. I've spent years, literally, dealing with patients and their scars, as well as my own. I know how my body "resolves" scars, and mine are actually looking pretty good, without the use of special stuff. I just tried it (bio oil) out of curiosity. Eveyone's body handles scar maturation differently. I'm thrilled for you that you are happy with your results....but unless you've done "comparative" application, you likely have no clear idea what your scars would be like if you had done things differently. Again......very happy for you that you're happy with your scar outcome.
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My goodness.....so much going on!
To ALL of you facing ongoing and NEW issues.......sending positive thoughts and prayers for you!
DIEP is not for the faint of heart, that's for sure! I have become acquainted with some of the strongest, bravest, and steel-backboned women in the world, right here, on this thread! What an amazing group!
I had post-stage 2a PS appt. yesterday......I am now cleared to exercise, except for abs....that has to wait a few more weeks. I had a rough weekend, as I was feeling sore all over, and have very tight arms due to muscle involvement in the breast lift......I admit I had a melt-down.......at that magical 3 week post-surgery point.......wondered what the hell was the point, that they would NEVER look real.....why did I keep subjecting myself to all of this????. And on.......and on.......which is why I did not post-I didn't want to be a downer. Finally got over it, and I am back in the saddle again......(((sigh))) I agree....we might not look good nekkid, but we look damn good fully dressed!!!
Jeannie, I will PM you about Saturday.......I am planning to be there, but DGS is having surgery Friday, and I am a nervous wreck!!!!!
Nihahi.....as I was clothed in the pics you posted.....I don't care.....but I agree...if you want to show your "work"......probably the best place for it is the picture forum....as that is a super-private, and safe place to share.
Have a busy day ahead......gotta run! Love you ladies! XO -
Still bored.....OMG....I'm losing it girls!!!!
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Found this link on another thread....thought it might be of interest. Sorry kuka....you still should be eating your veggies
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Hello ladies!
My PT told me about www.compressionsale.com yesterday, for less expensive compression garments. They do have lymphedivas. You can search on it.
Thinking good thoughts for you Katy. And for all of the rest of you, too! ...Julie
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Julie - sure wish they had compression girdles. Thanks for the tip!
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Hey, everyone, thanks for the prayer and encouragement. My PS consulted with the infectious disease MD who treated me last time and we have a plan. Augmentin 875 mg twice a day for 24 hours, and we regroup tomorrow morning. If the flaming land mass isn't significantly better, it's back to inpatient jail and they'll place a PICC line for IV antibiotics.
Last night was pretty wretched. High fever and every muscle in body ached. Poor Jerry...I paced around, grizzling and moaning and couldn't lie still. Hopefully tonight will be better!
Bailey, your thoughts of my lymphatic system harboring criminals might not be too far off. Everyone's stumped as to where this is coming from. We know the high doses of chemo undermined my immune system, but gosh...my last chemo was almost a year ago.
Does anyone have a vita-mix or some kind of juicer that they use for whole food juicing? I'm thinking about what great smoothies that could be made with kale, broccoli, fruit, etc.
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Katy-I use a Hurom juicer....it's a cold-press juicer......love it!
I HOPE they get this carp figured out for you.....this shirt stinks.....BIGTIME!!!
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Sbe, I hope the meds work quickly for you. Sorry this is happening again.
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SBE, sending germ chaser's your way. I bet you wake up feeling a lot better tomorrow. I guess this might be a silly question, but is the cellulitis on your cancer side?
I have a kale, mixed berry, and banana shake every morning, the base is unsweetened almond milk. I just use my regular blender. I hear the Vitamix is awesome. I have watched it demo'd at Costco.
I find it so hard to believe you have a suppressed immune system. You look so healthy, and you never stop moving. Is there a test for that, btw?
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Movie....sooooo good to hear from you!
Katy...Everything crossed here, hoping this clears up once and for all, and that you don't "end up in jail"! Have they cultured strep??? This isn't related to the flu shot you just had is it???? In other words....WTH!!!!!
bailey.....hope the second try at your PS appt went well.
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Sorry if I offended anyone with the picture question. I just want to be able to help other women, but I still haven't become very friendly with the picture forum. I will have to learn a little about it so that I can post pics.
Sbe, I can't believe you're going through that crap again! Hope they can get it under control this time without having to put you in the hospital.
Long day today, so I'm going to try and relax. Good night! -
SBE, sorry you are dealing with an infection. Hope it clears up very soon and that you don't have to go to the hospital.
Goldie, thanks for the advice about tissue expander before DIEP. It helps to know that I'm not the only one having it done that way. I'm going to meet with BS tomorrow morning to try to get some confidence in the new plan. If anyone else has had tissue expander before DIEP, I would love to hear from you. Feel free to PM me. Thanks. Best to all here,
Deb
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Gosh Kuka! I never got the impression you had offended anyone!!!! We all just have different levels of comfort re: public exposure! I know without a doubt that your intent was solely meant to help others.
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So I showered just now and saw my smile looking at me from the mirror and forgot PS said I can use stuff for my scar (s)
Maderma? Who has used!? Or is bio oil better!!? Or both?! -
Kuka- I didnt think you offended anyone either, I wanted to check out the pic forum too but could never figure it out. Let me know if you do.
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Lets see if this works
Trying to upload a picture of me...
http://s1363.photobucket.com/user/Bagpipepat/media/image_zps5d159c87.jpg.html?sort=3&o=0 -
Well.
It's official. I need more surgery.
I knew that, but now it's official. Ugh. So we will debulk the noob, remove the scar tissue and fat necrosis. Move it toward center (instead of under my arm) and redo all of the noob scar.
She also wants to redo my lift scar around my nipple, redo belly button and redo belly scar. I healed over everywhere, but scars are deep red and ropey and she thinks she can do better.
And she will lipo my tummy for contouring and my little dog ears.
I just want to cry at the thought of it. I'll be fine tomorrow and come out ready to fight....but tonight it's overwhelming to think about taking the "two steps back" of stage two. I know it won't be flat out on the ground like stage I....but I still want off this crazy ride.
I ran a 39.5 minute 5k Monday night....that is probably nothing to write home about but it is MY best time ever....I wonder how long stage II will keep me off the trail?
Send the waaaaahmbulance, please, lol. -
I was looking for a video on self manual lymphatic drainage. I found videos on the sight, but my Kindle won't let me open them. Somebody take a look and see what you think? I will look on the pc tomorrow if I get a chance.
Good night friends.
http://wn.com/lymphedema_and_self_massage -
Goodnight to you, dear bailey...Sounds like the "elephant in the room" got pretty sure of himself today, and overwhelmed you a bit. Hang in there, Wilbur's gonna deal with him while you rest, and tomorrow, the elephant will hopefully seem a wee bit smaller. You ARE an OVERCOMER!
pattysmiles....yep, I can open your photo....but can also open every photo in the "collection". Maybe not what you meant??? However, you look lovely in all of them!
The picture forum, is a separate entity from this bc.org site, but is accessed by sending a pm to a member who goes by the names of timtam and nowheregirl. Send a pm to one of the names. She will "screen" your validity, by looking back on the content and number of messages you have posted. She will then send you a pm, with further info about the picture forum. It takes time, as she doesn't always get back to you right away. You cannot access the picture forum through any other channel.
busy day here on the thread ladies....hope everyone has a good night. ((((((X))))))
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More info on the picture forum....
May 30, 2013 05:07pm nowheregirl wrote:
Hi there,
As some of you know, I am the founder/administrator of the Picture Forum where we share the information/advice/experience/pictures regarding our breast reconstruction surgery as well as the hair loss from chemo etc. It is a private online forum which I started several years ago when I was in the middle of treatment for my own BC and it is NOT part of BC.org in any way.
Obivously what we share on our forum is very personal and can be even intimate. In order to protect our privacy, our forum is password-protected and no one could even get the link without my approval. So anyone who wants to be part of us must ask me or Lilah who has been generously helping me as a forum moderator for access via PM (private message).
However it does NOT mean you will be automatically granted access just because you ask for it. Our members are entitled to know who is looking at them. They should not be seen by those who are not legit or not willing to show who they really are. Thus anyone who is very new here or has not posted much will least likely be approved. We do not have definite requirement like how many posts are needed before request because it depends what you have said in your posts. I screen every applicant and decide who should be allowed based on their posts.
Please do not call us exclusive. We do this solely because we are responsible for our member's privacy and we have to keep our forum alive for those who will follow our path. Our forum is not a photo gallery. If people were only interested in looking at the pictures and didn't post at all, our forum could die at any time. So even if your request is ignored, please do not take offense. It only means that you have been added to the waiting list. You will be given access eventually once we learn who you are from your posts.
Thank you for your understanding.
Nowheregirl (former Timtam) @ Picture Forum Administrator/Founder
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sorry...brain not turned off for the night yet....
sbe..just a thought....by any chance, did you have a port removed recently? Could there possibly be some "seeding" from an old port site going on, and affecting your flap, which would maybe be the more "vulnerable" spot on you at the moment????
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Bailey,
I watched the video. It is very well done, and I think she does a great job of explaining the gentle massage techniques.
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