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Topic: bad reconstruction results

Forum: Breast Reconstruction — Is it right for you? Discuss timing and various procedures and techniques.

Posted on: Feb 29, 2008 09:50PM, edited Feb 29, 2008 09:52PM by marta1simon

marta1simon wrote:

Has anyone out there had a bad reconstruction experience? I had stage 2 reconstruction in Dec 07 and came away awfull, I had Bi-lateral mastectomy.

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Feb 29, 2008 09:57PM Marian wrote:

Oh.. you are not alone and I am so sorry -  I too had bi-lateral and the mastectomy was a breeze compared to reconstruction (silicone implants after 7 months of expander).  I'm a bit lopsided but that I could live with it's that the ps didn't do the surgery the way we discussed in both consults - and these were the reasons I picked him after interviewing 3 others.. Not only that but I did bi-lateral, for safety reasons, but also because he explained it was easier to get a symetrical outcome if he was doing both at the same time.  Sometimes I wonder if they realize they are playing (I would use another word if allowed) around with womens lives, their sexuality their sense of self!  Don't misunderstand I am grateful that I am virtually cancer free now, but the reconstruction was a trip I just never want to repeat (or for that matter anyone else)!

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Feb 29, 2008 10:13PM marta1simon wrote:

Marian I think we had the same SOB. I had stage 4 right breast but did bi-lateral. Im glad I did because It showed changes to the breast which they said would be cancerous in a matter of time.My expirience left me with 2 totally different breasts. Thw surgeon who did the original mastectomy did a great job by only giving me a 2.5" incision, the plastics reconstruction placed the expanders in that space, I had to have the left expander removed prior to surgery do to mistakes he made, so I had to wear my husbands sock rolled up for 5 months while I went through chemo. Finally in Dec. I thought finally this is it. Ill look even, get some self esteam back. I am 52 years old married to the same man for 35 years and I could not bear to let him see me so uneven ( he said dont worry its ok ) but not to me. I felt deformed, (never mind the chemo, baldness etc.) but the 1 breast thing did a number on my head. Any way its dec. and Iam all happy that finally Im almost over this.When surgery was done and I saw what I had I went to see him. He said, it looks beautifull.

Well let me tell you about beautifull.... My left breat( which did not have cancer) he gave me a 6" incission (dont kn ow why yet) also its like a football shape and goes way under my armpit. Also it has a point where the nipple would be and when I move my arm It folds in half. My right breast has the original 2.5 " incison but he has it starting under my clevicle. It looks like some one punched it in the center because its flat, it is the size of a large orange the incision is puckered and now at the bottom of my breast. To the sob this is beautifull. Listen to the solution...Left breast ( swear he said this to me in fromt of my husband) roll up your husband sock and place it in your bra under the arm pit to force the breast over and up to match my right starting at the clavicle ( Like a ninny I tried this when I got home...all it did was raise my boob and make and indentation) my right he says he will cut the capsule causing the breast to drop. and as for the puckered scar he will cut it zig zag so it stretches like an accordian. What do you think of the?

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Feb 29, 2008 10:35PM Marian wrote:

Good God I am so sorry Marta - I know how you feel!  I have yet to let my husband see the "beautiful" breasts..  I hope you can get some piece of mind and go through a revision.. but then that is another surgery!!!  I'm sure there are good ps out there but I wish I knew where - and then your trust in doc's is distroyed too!  urrrrghh

You don't live in Arizona do ya?

Best

Marian

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Feb 29, 2008 11:07PM marta1simon wrote:

No I am in California. I went to a ps today. I have 2 other appointments next week. Bottom line he explained what could be done but that there is no way he can say it can be fixed. Wont give me false hope, all he said was that he would remove the saline and replace them with silicone(which he says feel better and look more natural) and that when he is done at least they look somewhat better. But wont give me false hope. My skin and my muscles are stretched all wrong. He said that he has to sew the skin that forms the division(cleavage) to my sternum because in the center both implant meet as one. How do I get an attorney? Will that help me? Not really only in as much as to pay for the fixing if the insurance wont pay for it. Why do they (PS) touch you if they don't know what they are doing? Isn't it bad enough that we have cancer? That we loose our own breasts? That we have to come to terms with so many different things in a short amount of time that we are overwhelmed with what life has thrown at us, and then a monkey wrench is thrown at you when a ps totally screws up a mental picture of how you thought you would look  and  turns it into one of despair, deformation and self-disgust. I cant wear any open shirts any more. Forget going into my pool. I f I don't wear a bra I'm so lopsided that it pulls and I look totally unbalanced. I'm sorry Im  rattling on but I'm so angry!!!

The worst part is I cant tell anyone, I'm embarrassed,ashamed and already see everyones eyes going to my  "breasts" when they talk to me. I wish I could figure out how to find a good female attorney who would at least sympathize with me. But then thats  never going to happen. I'm really down, I may have to consider removing them altogether. (I cant even picture that in my head )

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Mar 1, 2008 03:42AM hi5 wrote:

wow... am I glad this forum has been started.  I too had bilateral reconstruction with expanders.  I changed ps too.  The first one initially told me they could not do tram with two and that the only thing could be expanders.  I had one much higher than the other , different sizes and shapes and pointing in opposite directions.  I switched ps for the exchange but they are still not at all natural looking... the rad side has a serious crease and is smaller than the other and so on.  I then had nipples and one side is completely flat on one side.... I am not happy... they are much smaller than my real boobs were and........ 

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Mar 1, 2008 01:18PM Marian wrote:

Well if you really feel strongly about your outcome and are willing to put out more energy there is the California state board, now it takes a long time and I understand that you can do it without identifying yourself but you can help another person - I went to the ps directly we had it out and he actually agreed with me in the end.  He apologized and said he would make a real point of LISTENING to the patient from now on.  Now whether I was just appeased or not doesn't matter, I made an impact and he will change the way he does business.  He can't use me as a "problem" patient because even though I had several reasons to sue him I didn't.  If he had not changed his attitude with me I would have gone to an attorney - he may have sensed that but all in all I am hoping he DOES change his approach to the cancer patient  - to any patient!

Good luck, and I know what you mean and I have felt what you are feeling (you too hi5).. we just have to find a way to live our lives and if necessary have another surgery, but when the trust is lost it is a long road back...

Best to all!

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Mar 1, 2008 02:07PM pamfenton wrote:

I also had a hatchet job and was made to feel it was my fault for believing him when he said I would go back to being a D.  When my husband called him after my exchange, the PS said, "These women are all alike.  They want their tits back and they can't have them.  Your wife needs to see a psychiatrist". For the record, I am very upbeat and easy to please.

Now, can it be fixed?  Not without spending some serious $.  But I am going to New Orleans in April to have the wizards there take out the old and put in my own fat tissue, probably from my ass but possibly stomach.  I am sure you can find out all about them if you look here.  also go to www.breastcenter.com and look at their before and after pictures.  I live in OR so it is way out of my area and it will cost me $10,000.   It is vital that I do it becuase I am married (32 yrs ) to a boob man ,sweetest guy ever, but really affects our sex life having these monstrosities on my chest.  Do I have a spare $10, 000?  We do alright, but have 3  kids in college.  But I figure I will die at some point and my life insurance will cover what I have depleted from our retirement. It is just something I MUST do.

Dx 5/17/2005, IDC, 4cm, Stage IIb, Grade 3, 1/10 nodes, ER+/PR+, HER2-
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Mar 1, 2008 02:28PM rubytuesday wrote:

Pam, OMG...that man SHOULD NOT be working with breast cancer patients!  I'm afraid I would have had to hurt him.  I hope all goes well for you in NOLA!  Best wishes

Proud member of the TaTa Sisterhood! :)

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Mar 1, 2008 05:37PM, edited May 19, 2009 09:02PM by pamfenton

This Post was deleted by pamfenton.
Dx 5/17/2005, IDC, 4cm, Stage IIb, Grade 3, 1/10 nodes, ER+/PR+, HER2-
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Mar 1, 2008 08:33PM SLH wrote:

Hi Marta,

You can read about my recon/decon experience entitled "Failing the Torture-by-Reconstruction Test".  My foobs actually looked ok, they were just giving me muscle pain 100% of the time.  Now flat, I'm not entering the Ms. Oregon pageant, but I'm also not dealing with implants that are trying to move under my arms.

Hi again Pam,

There is another PS in Portland who also needs a swift kick in the #@*%.  I won't mention his name, but he is one of the top PSs.  He told a patient who was crying and in pain from the expander process that "Bilaterals are whiners."

I had a major panic attack last Sunday about $$$.  My husband and I went to a stupid vacation seminar, where we could get 2 free airline tickets for listening to their sales bs.  Well, it ended up sounding like a good deal, but I was still skeptical.  But my husband convinced me when he said how all our money goes to medical bills, and we really need some happy times with the kids.

It's one of the extra bummers of cancer treatment, the feeling of being a financial anchor for your family.  My husband is a very wonderful guy, but he hit my weak spot.  So we put down $4500 for Suncoast Vacations.  It was supposed to give us 2 weeks a year of discount prices for condos around the world, and a guarantee for the lowest prices for airfare.

As soon as we got home I looked them up on "Rip-off Reports" and found they were a total scam group.  I quickly cancelled the charge to our credit card, cancelled our card, and sent a letter to them voiding the contract.

Buyer beware.  If something sounds too good, it probably isn't.

sally 

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Mar 1, 2008 08:56PM Calif-Sherry wrote:

My reconstruction was so god-awful that I am still having surgeries.  I just want these things to look decent under clothes.  I took pictures of the botch job and sent them to insurance, the referring doctor and the PS.  I am now at the UC system and he's working to make them right.  One breast incision was vertical and the other horizontal!!!  One sits high like a breast uplift and the other is down lower.  GROSS.  The new PS asked me whata the other PS was thinking when he botched these up. 

My bf is very understanding; however I am soooo ashamed and embarrased over this

You give but little when you give of your possessions. It is when you give of yourself that you truly give. Sherry.....

Dx 12/13/2006, IDC, <1cm, Stage I, Grade 1, 0/4 nodes, ER+/PR+, HER2-
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Mar 1, 2008 11:10PM karen1956 wrote:

I too had a bilat with recon. My expanders were so lopisded with the bc sided way higher.  when ps did the exchange he lowered the pocket.  At first the implants looked so good and felt so soft.  After a couple months the bc side shifted downward, so after 4 months, I had a revision and ps fixed the pocket, sewed the implant to the sternun (I think) and once again they were even.  Now 7 months later, the bc side has shifted downward again.  ps nurse says I am the only radiated patient where implant did not go higher!!!  I a hve 300cc implants and to me they are too big.  The bc side looks so weird and I have two armpits!!!! I have an appt with ps in a couple weeks to talk about options.  I am thin, so I am not a candidate for most othre procedures.  I have considered deconstsructing or having the smallest implants possible put in.  In close I am okya but I cannnot wear anything fitted.  But its my naked body that I don't like. DH is very caring and he has seen me every step of the way - but I am not happy with how I look. BTW today is 2 years since bilat.  Karen

Karen in Denver, Dx 02/03/2006, ILC, stage IIIa, ER/PR+, HER2-,

Dx 2/2/2006, ILC, Stage IIIa, Grade 1, 8/12 nodes, ER+/PR+, HER2-Surgery 03/01/2006 Mastectomy (Right); Lymph Node Removal: Axillary Lymph Node Dissection (Right); Prophylactic Mastectomy (Left); Reconstruction: Tissue expander placement (Both)Chemotherapy 03/22/2006 Adriamycin, Cytoxan, TaxotereRadiation Therapy 07/27/2006 ExternalSurgery 10/19/2006 Prophylactic Ovary Removal (Both)
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Mar 2, 2008 12:34AM, edited Mar 10, 2008 08:53PM by pamfenton

This Post was deleted by pamfenton.
Dx 5/17/2005, IDC, 4cm, Stage IIb, Grade 3, 1/10 nodes, ER+/PR+, HER2-
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Mar 2, 2008 12:34AM pamfenton wrote:

MD called tonight and said my scans were in and were okay.  I guess I can live with a fiscally irresponsible son now.  So I am less cranky.

However, when I read all these stories...man I wish I had the money to bring us all together  at resort to tell our stories and have some really strong tropical drinks, and bond in person. I hate it that so many have had my s--t happen to them, but there is some good in knowing I am not alone.

SLH-I can find you some very cheap all inclusives online.  That is my specialty. Since dx, we try to go 1/yr.

Calif-Sherry...I want to tell you not to feel shame re this, and yet I know how that feels.  I don't want to over dramatise but it must be something like being branded; totally not our fault yet shameful to see.  I never put it is those words before but I feel that way also.

Pam

Dx 5/17/2005, IDC, 4cm, Stage IIb, Grade 3, 1/10 nodes, ER+/PR+, HER2-
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Mar 2, 2008 01:44AM SLH wrote:

Hi again Pam,

I was Dx 2/05 and had my bilateral in March05.  I've been on Arimidex for 2 years, but no chemo, no rads.  So when I see my onc every 6 months we don't have much to talk about.  I asked him if I should be scanned for mets, but he didn't think so.  Why were you?  I don't really understand how we know if it's come back.  Do we wait for symptoms?

I guess I'm posting this in the wrong space.  I'm supposed to be talking about recon.

sally 

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Mar 2, 2008 09:14PM pamfenton wrote:

It is controversial.  Many studies indicate that survival rate is no longer if you find a met in it's tiniest form than (by a scan of some type) when you find it secondary to symptoms.  I was chatting with a lady on this board and she was dx'd the same day I was (almost 3 yrs ago) and the same stage, etc.  Her MD ordered routine bone and C/T scan at two years out and she had mets to her vertabrae.  Very tiny.  And they are treating it with this cool new drug that she gets once a month and it seals off the mets and starves them.  That sounded smarter to me than waiting til you get symtoms (a vertabra imploding?) so I asked my MD for same scans.  Oh, forgot to say, she felt fine prior to met dx.  Anyway, mine were fine.  But I think I will ask for them every 2 yrs or so just in case.  If you go to the recurrance thread there is a lot of info there.

If you had no chemo, no rads, your disease must have been pretty small (I know, no disease is small to the woman  who has it), so you are probably okay.  I really, really recommend a book called "Cancer Made Me a Shallower Person"  It is hilarious but pretty insightful too. and the lady who wrote it had hardly any tumor, and by the end of the book had mets.  It is just a secretive, shitty disease that you never can predict.   Get the book, you will love it.  I got it from library.  If I have already recommended it to you...sorry....gool ole chemo brain.

Dx 5/17/2005, IDC, 4cm, Stage IIb, Grade 3, 1/10 nodes, ER+/PR+, HER2-
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Mar 5, 2008 11:25AM kellykelly wrote:

I am pretty unhappy with the outcome of my reconstruction.  I have two totally different size breasts and still have to wear a prosthetic so I don't look lopsided.  My p.s. said to give it time and if I am still unhappy, he'll just replace the implant with a larger one for symmetry.  I live in Canada, so everything is covered by our health care so it is not about money.  It is about having to go thru more surgery! I have had far too many surgeries in the last few years and was hoping to be done with all this.  I just find, like most of the p.s.'s in these "bad reconstruction forums" that they are so flippant and that it is no big deal.

I believe my surgeon is stalling to replace my implant so they he can bill OHIP again. They probably won't cover more surgery because of the doctor's error but will cover it if I had developed complications.  Just my thoughts.

I am suppose to see him again at the end of the month and we'll go from there. 

Kelly

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Mar 8, 2008 02:22AM hi5 wrote:

Hi kelly... a fellow canuck... where do you live...I am in bc... sounds like we have similar problems....

pam... you are getting everything redone for $10,000 in no... wow I thought it was like $70,000  . what exactly are you getting done.

It has been one year past exchange and my foobs are still as hard as a rock... is this common. 

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Mar 9, 2008 08:39PM violet wrote:

hi marta -- like Pam, I am unhappy with my silicone implant (unilateral). Ripples, lopsided, hard, feels like a baseball under my skin. This Friday I am having bilateral sgap in NYC. 

It is not costing me anything because I live in NY.

This is after 5 years of unhappiness. Don't listen if your doc says they look good. My ps and his nurse complimented my implant every time I went to see him. (btw, all, he is at MSKCC -- the head of the dept. --(Peter Cordeiro). So much for the state-of-the-art at Memorial Sloan Kettering. You don't need to settle for deformity when there is an alternative.

good luck to you.

elizabeth

Dx 9/2003, IDC, 2cm, Stage IIb, Grade 2, 1/10 nodes, ER+/PR+, HER2-
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Mar 16, 2009 05:50PM JMJ532 wrote:

Hi Violet,

Where are you having your sgap done?

 JMJ

JMJ532

Dx 12/7/2007, DCIS, 1cm, Stage 0, Grade 3, 0/2 nodes, ER-/PR-, HER2+
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Mar 16, 2009 10:38PM violet wrote:

Hi JMJ --

I had bilateral sgaps done a year ago (almost to the day). Dr. Joshua Levine did them in NYC. He's wonderful. Dr. Robert Allen assisted at my surgeries. Unfortunately, the flap on the implant side failed and had to be removed. It was a difficult time. The normal side was fine. A month later (april 08) I had a diep flap to try to create a breast on the failed side. This time it worked. I had 2 stage II surgeries to correct and adjust. Although it was a lot to go through, I am absolutely thrilled with my results. I feel like I got my body back again. I am happy to talk with you further if you need encouragement or other information. Just pm me.

 Dr. (Joshua) Levine is excellent, technically, and personally. I am happy to recommend him.

Dx 9/2003, IDC, 2cm, Stage IIb, Grade 2, 1/10 nodes, ER+/PR+, HER2-
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Mar 17, 2009 12:21AM kristifromsandiego wrote:

Any of you california girls from San Diego.  I have been told my San Diego PS is great but I am just a bit concerned with his bedside manor.  I do not have surgery till November because my PS won't do surgey till I am 6 months out from radiation, I start that tomorrow.  Anyone heard of that?  Thank you Kristi

Dx 9/15/2008, IDC, 2cm, Stage IIa, 2/18 nodes, ER+/PR+, HER2-
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Jun 2, 2010 08:43PM mint wrote:

Are you saying you went to Cordeiro and you don't like the result?  Please respond!  thanks so much!

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Jun 2, 2010 09:55PM violet wrote:

see my response to your private message, mint, And yes, that's what I'm saying. With a bullet.

Foot in mouth

Dx 9/2003, IDC, 2cm, Stage IIb, Grade 2, 1/10 nodes, ER+/PR+, HER2-
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Jun 3, 2010 07:05PM thesuiteshoppe wrote:

Pamfenton.. it's my understanding that by law, insurance companies have to pay for breast reconstruction and further procedures until YOU are happy with the results.  Any thoughts, gals?  Wouldn't this be covered by insurance?

Dx 6/22/2011, DCIS, 4cm, Stage I, Grade 2, 0/0 nodes, ER+/PR-
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Feb 23, 2012 05:53PM surfer_Kathy wrote:

  I am also unhappy with my bilateral mastectomy reconstruction results.

One breast rolls down my side when I lay down and that same breast is about 2 inches longer than the other side. I was able to save my aereolas however the left aereola is completely on the bottom facing the ground and the other is where it should be. The doctor tries to say that I always had one larger breast than the other. It is such a significant difference now where it must of been mm before! Why would I even ever consider getting nipples put on since they are lop sided? I have surgery on Monday to hopefully make corrections. I have been off work waiting to get the surgeries completed but I am thinking these surgeries could last years!!!!!!!!!!! 

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Feb 23, 2012 09:47PM violet wrote:

Kathy -- you don't have to settle. Find a better surgeon and go for it. I am waaaaaay happier having gone through extra surgeries. There are great surgeons out there.

Sending you strength and best wishes.

Elizabeth 

Dx 9/2003, IDC, 2cm, Stage IIb, Grade 2, 1/10 nodes, ER+/PR+, HER2-
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Feb 26, 2012 09:20PM bcs2011 wrote:

Kathy, I know its hard to believe right now but there are ps out there that actually know what they are doing and can fix almost anything. I have started over with expanders again after having implants and I look so so much better. I didn't want to do it but I felt so unatractive that I knew I had to. Good luck and dont give up!

Dx 2/2011, IDC, 1cm, Stage I, Grade 1, 0/3 nodes, ER+/PR+, HER2-
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Feb 27, 2012 05:30PM, edited Feb 27, 2012 05:32PM by Denise2730

I feel my PS did a lousy job and the one I went to after that basically said that I am expecting unrealistic results!  Told her I was expecting to look like all the "after" pictures in the PS's offices and she said that only the wonderful results are put in the book for patients to see. I see her again this week since it was only a couple of weeks after my exchange when I saw her.

That look a little better but they are too far under my armpits and not as round as I would like. I may have to go to Miami to get better results. My advice to anyone picking a PS. Make sure they have a lot of experience with reconstruction not just breast augmentation.

DMX 8/11/11 - TE's put in. Exchange date was December 16th. Hate them and had them redone by a different PS in June, 2012. They look so much better. Still waiting for nips & areolas.

Dx 4/29/2011, ILC, 1cm, Stage IIa, Grade 2, 1/7 nodes, ER+, HER2-
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Feb 27, 2012 05:59PM Layla2525 wrote:

OMG,this sounds scary, all this pain and suffering and I am thinking finally at the end of this yr maybe I will have a sort of 2 boobs back but the right side that had the cancer has a big dent in it on the side and I asked the PS and
BS why is that? They only said dont worry once the fills are done then the dent will fill out. I feel like a freak,half human half plastic. Got a therapist appt to talk my issues out. Cried the whole 2 1/2 days off and on in the hosp and cried every day for a wk b4 I went.

bmx w/TE on 2/13/12,exchange to Mentor high profile 600cc gel implants on 08/30/12,07/01/2013,new Natrelle 45 gel,replaced Mentors due to capsule.

Dx 12/19/2011, IDC, 1cm, Stage I, Grade 1, 0/2 nodes, ER+/PR+, HER2-

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