DIEP 2014

Ridley

Lipgloss -- so sorry to hear about your losing a flap --sounds like they pulled out all the stops to try and save it -- ridley

ChrisInPA

Lipgloss - My best in pursuing options!  So sorry you are dealing with this.  

LiLi-RI - Thank you.  Thought my mind was playing tricks on me.  

tlbradyful

sky78 - For me, soooo much easier than BMX/Expanders for a year. I know it is hard to believe. 

teacher - Stage 2 was evening out with a little thigh fat grafting for me and smoothing the dog ears on the end of my ab incision. I go back 9/19 for a consultation for 2b which will probably be a little more fat grafting. I had 2 flaps on my cancer side and 1 flap on my preventative side because it wasn't as concave as the cancer one. It needs a little fluffing. My cleavage doesn't match.

MEG2

Hi All ~ as I've read through some additional DIEP information I am seeing that the PS generally has you stop Tamoxifen the week prior to surgery, something to do with blood clots.  I have not had that direction from the Doc or his nurse yet, while my surgery is still 9 weeks out I am curious if this is the case.

Can you confirm your own experience for me?  Thanks  

vballmom - thanks for letting us know that diet is not restricted, I was wondering how that might play out.  I eat a mostly organic diet and the hospital menu isn't always great when you are trying to eat this way.  I did find a few things that worked when I had my MX but was there for only one day and was worried how I would eat for a whole week.  Good to know I can have my peeps bring in fresh fruit/veggies and whole grains, am hoping that will help with (or prevent) constipation.

tlbradyful

debiann - same size for me

Georgie - welcome back!!!! My son is stable and back at college. He'll be home for more tests in a couple of weeks.

Lipgloss - I am so sorry. I know they will have a solution for you. This is a long, long road we are on.

Teacher64

Marianne52 - I had my DIEP at 64 1/2 and I have a pacemaker. It's not about age.

I'm discovering how fortunate I was about my PS recommendation. My podiatrist and PCP both knew him although my PCP used a different PS for her DIEP. Because of Southwestern Med School in Dallas, there are a number of docs who do DIEP, some more adept than others. My entire team functioned as a unit for me and I am so thankful for their expertise.

vballmom

Lipgloss - I am so sorry that the flap didn't take.  It sounds like your team did everything possible to make it work.

Meg2 Regarding Tamoxifen. I am guessing that my clotting issue is related to the Tamoxifen.  I stopped it a week before, but wish I had stopped it two weeks before.  I highly recommend that if you are having a DIEP surgery that you do your own research and ask your PS ahead of time.  The risk is low, but when it happens to you, believe me it is not fun.

I had a delayed reconstruction. I had a UMX in May 2012, and after chemo and radiation, I started researching my options. The first PS wanted to do a lat flap, with a lift & an implant on the other side.  It was at this point I realized that plastic surgeons have their specialties and will offer you what they can do. After much discussion, he admitted that he was not trained in DIEP and at his age, didn't plan to be.  He told me if I wanted that, I needed to find another doctor.  It was a sobering reality to me - he never would have mentioned this procedure to me and had I not done my own research, I never would have known it existed. He came highly recommended by a friend with implants, who by the way, has constant pain.

I found three more doctors - one in my own hospital in Hartford, one at Yale, and I even went to a big-name PS in NYC.  I was hoping to use my thighs as a donor site, as I am bottom-heavy.  The NYC office was swanky - clean and beautiful.  The doctor seemed compassionate and I loved her.  They promised they would contact my insurance  company right away to get things moving, as they don't take any insurance but help patients push for an out of network exception.  When I called to check in a couple weeks later, they had not contacted my insurance company, but the assistant told me that they would not until I lost 26 pounds.  The doctor asked me to try to lose weight, but never indicated that this was a condition.  I dropped 8 and then plateaued and got very depressed about the whole thing.  I am not small, but I am certainly not obese.  The more I thought about it, the more uncomfortable I got with the idea of travel (it would be a 2 hour train ride and needing to find accommodations for hubby in the city).  How would I follow up? What if something went wrong?

I went back to my own hospital - the once new surgeon there had now been there for a year.  My own BS & MO who knew nothing about him were now raving about his brilliance and talent. Good enough for me. I'm never going to be a bikini model anyway.  I booked my DIEP surgery.   He looked at my belly and told me I was tall and quite lean, and he would be able to give me breasts about 75% of the size of my previous ones.  More than happy with that.  But what? I'm lean?  What about me needing to lose 20 pounds? What was that all about? My surgery was complicated, but when I awoke I was shocked to look down and see a near-perfect breast.  Round, warm, soft, and beautiful.  My other side is still a bit of a mess with healing skin, and I am not perfectly even, but I was told to expect this and to have patience.  I did not expect the breast where there was none to be so amazing. I cannot stop looking at it.  Silly but true.

The reason for this novel is that I want you to know that if you are thinking about having a delayed reconstruction, there are benefits that I didn't expect.  I had a year to recover from chemo.  I had my energy back and I felt healthy and strong. I had the time to research my option - both in the type of surgery I wanted and the doctors who would do it.  I chose not only my plastic surgeon, but my breast surgeon to perform the prophylactic MX.  I trusted my team, and am incredibly thankful that I am close to home, as I need a lot of follow up care. Going into the city would have been a nightmare for me.

I was at the hospital yesterday in the lab and asked for a bandaid for one of my hip drains. As I was putting it on, the technician looked at me and gasped. I thought she noticed my scar, but she didn't. She said, "Oh my God, can I have your tummy? It is so flat!!!"

Lilith08

vballmom--how wonderful it is to read your story of delayed gratification! Congratulations! It also makes me feel better about the possibility of waiting until I know what--and who--I really want.
(Might I suggest updating your list of procedures? You don't have your DIEP listed!)

pzercher

vballmom--great, thoughtful post. 

Meg: My doc had me stop Tamoxifen two weeks prior to surgery. Then my date got canceled and re-scheduled two weeks later, so I ended up being off it four weeks before surgery. She said I could start back up one week post surgery.

lipgloss: Wow. What a traumatic experience. You are one tough lady. Very glad for you that one flap made it, and so sorry the other did not. I can understand your reluctance to go through it again. Hugs to you.

MEG2

vballmom - Luv your surgery story, I am all about research. Having a team you trust and understanding options is so important!  I love my BS and MO, my PS is tops in the area, a bit arrogant but I don't mind that since he does excellent work.  Thankfully, 2 people were willing to show me the work they've had done by the same surgeon (same procedure; 1 new breast and a lift on the other) one was 2 years out from surgery and the other 10 years out.  I was so impressed with the work, both look as close to natural as can be considering what it takes to get there.  My PS has told me NOT to lose weight, but my MO wants me to drop a few pounds to be closer to my "normal" weight.  At this point I am following the PS as I want to have as much tissue available for the procedure and will follow the MO instruction once I've recovered from surgery (if necessary).  I find it so interesting the varied things we hear from different doctors.  It sounds as if you followed the path that was right for you with good results. I am so glad to hear how much you love the results, not silly at all!  I will take a moment to do a happy dance for you.  I will be leaving the hospital exactly 1 year to the day that I had my MX, my PS wanted to wait a bit longer (1 year from the end of rads) but I've already met my insurance deductible this year so from a financial standpoint it made more sense for me to do it this year and he agreed.  Will also be out over a year from my last chemo treatment so I feel good about where I'm at today with recovery from treatment and am working out 4 days a week to be as prepared as possible.  

Again, the advice here is so great and I so appreciate those of you who pass it on.  

LiLi-RI

So sorry lipgloss! I will pray for another option for you.

goldie4040

I support this rant.  Well put.

http://www.huffingtonpost.com/leisha-davisonyasol/october-pinkwashing_b_4102424.html?fb_action_ids=10152675152119486&fb_action_types=og.likes&fb_source=other_multiline&action_object_map=%5B253721838085672%5D&action_type_map=%5B%22og.likes%22%5D&action_ref_map=%5B%5D

sollertia

My doctor wants me off letrozole, the Femara generic, for two weeks before and three weeks after surgery. Was told the estrogen suppressors might have a greater clotting risk.

naiviv

Lipgloss my heart goes out to you. I have been there and it took me several weeks to deal with the emotions of the loss. Although I saw PS weekly, I didn't want to hear or begin to process any plan for that breast. I also had a hard time even appreciating my successful breast.  A loss happens rarely, but it has happened to a few ladies here and they all ( as well as others) gave me great support, helped me research and then, one day.... I was ready to deal with it. 

With my DIEP I was on Tamoxifen w/ baby aspirin and Herceptin. 10 days before stopped Tamoxifen but still took baby aspirin and restarted 2 weeks later T only. Herceptin stopped 1 week prior and restarted 2 weeks later. I was prescribed 1 regular aspirin a day for 6 weeks post DIEP as well as limited caffeine. (I still take baby aspirin even though was switched to anastrazole)

With the lat flap stopped Tam and Her a week before and started  T the next day and H two weeks later.

I lost my last drain on Tuesday from the lat flap. Belly Button I think is finally infection free consulted with my  Inf dis md. He cultured it but he said it looked good. I continue to pack 2x a day but less is going in, so I hope that is a sign of healing from the inside so the outside can heal.

I have date of 10/20 to do a phase 2 to lat flap. He will work to match with DIEP, by removing flap skin and tightening / lifting and leaving enough room for fat grafting in final symmetry.  But final symmetry will probably come a few weeks later. Taking it very slow to not put any stress on skin so it heals well.  If the skin looks well, fat grafting may happen at this surgery to both and I should be finished with breasts. I have the option of some revision to belly incision, but I am hoping the hard spots and little ears go away with massage.( not looking forward to having any part of belly reopened)

Had my first bone density scan today and as of yesterday am officially 1 year NED.

Happy healing,

Vivian

Teacher64

Today was another ultrasound treatment. Med assistant said the bulge is finally beginning to soften. I will have another treatment next weekend hope it I means I can raise my arm again soon. She looked at my nipples and said they were "reducing nicely" and I can now wear real bras. Guess that means I will do some shopping tomorrow!

LiLi-RI

Teacher that is great news! It must feel so good to leave a DR's office with a smile! Have fun shopping!

Lisa

goldie4040

Lipgloss, I am so sorry.  It's hard to fathom your disappointment.  I can only imagine.  Know that we are here for you, and when you are ready you will make a decision on how you will proceed.  Naiviv has been such an inspiration to all of us, and I know she will be one to you too.  Keep us posted on how you are doing, and what we can do to help.

Teacher, I had two ultrasounds this week.  I am allowed to have a total of 8, I believe.  I think I feel a difference in the tightness and have gotten some ROM back, but my worst tightness, which is across my flaps and pecs she can't use the ultrasound on right now.  I am really hoping it can help that issue for me.

lemon68

Hi Everyone,

I am only on page 176 and figured I better post before I forget what I read, then continue on..

I had my post op today. I had posted a pic of my divot awhile back. Well they pulled that skin out and sent to pathology, he said it would be scar tissue. Today he tells me there was lobular hypoplasia in it. Pre cancer, abnormal cells what am supposed to think or feel !!!! WTF!!! And not to worry a cell got left behind he will set me up for a chat with the breast surgeon to ease my mind, I shouldn't worry, are you fricken kidding??? After all of this and I have a pre cancer cell under the skin 3 months after diep? I feel like a walking time bomb. Janet, you said it all when you said "leave me alone" no doubt. So how odd is all of this, the skin reacted to the cell is someway almost to say hey wait a minute you forgot me. My BC was on the right, this was on the left but they told me the left was littered with pre cancer, and no it never showed on a mammo or MRI, I wanted them both gone I couldn't take a chance, thank God for woman's intuition. So enough of that, I didn't tell my parents or my DH just couldn't worry anyone anymore.  In fact I haven't cried till right now. Those are such scary words to hear but it could be worse, I just want you all to tell me its no big deal. k?

Andrea thank you for your hugs when I needed them, back at you

Debiann, no no don't worry about your hair, it doesn't happen to everyone. Keep positive and know your hair is coming back, I promise.

MSW- I am feeling better, a bit up and down after today. Thanks for your caring heart.

Tbrady I am not taking tamoxifen , I chose the total hysterectomy instead. It could be part of the cause too. Either way hysteron or tamoxifen they both suck as I know you know. Thanks for sharing that I am not the only one. XO

Ridley, thanks for the biotin tip, I am going to try it. The hair falling on my arms is making me nuts, I was thinking at first it was a spider but now I know another is jumping off my head! again thanks for making me feel so not alone.

goldie, heck yes the lipo hurts like hell!! LOL .. I kept telling my DH no pain no gain. I would do more of it if insurance covered it, its painful but I am sure once the swelling is gone well worth it. I am doing okay, today was just something else, there are no more words. Hugs to you my Cinco sister, thank you. And Georgie my other sister, hugs to you too.

Teacher, He told me today the same 4 weeks 24/7 and then 2 extra weeks at night. I got some spanx for a break from the contraption, he said that was fine for a break. Both dog ears gone! Lipo on side boob and hips and he fixed the divot. I kept my nipples and they are looking pretty good. My right side (rads side) is still hard so nothing done yet, he said it might be another 6-12 months before she heals, damn rads.

I have a bad attitude tonight but it did feel good to vent a bit. thanks for always being there. I haven't been able to spend as much time here as I would like but I think of you all daily.

Love to all- Kim  

lemon68

Lipgloss, I am sorry you are having to go though this at all. I am sure they will find a solution you are happy with ((hugs))

Teacher, glad the bulge is getting better for you. Shop away and have some fun.

Georgie, wow I would love to meet all of you anytime, anywhere. XO

Teacher64

lemon - here for you. Unreal when the docs say don't worry. They drop a bomb and we deal with the fallout. 

jmb5

Hi everyone! I haven't read the board for a long time, but I have updated the surgery list. Good luck to all you September girls! Hope everyone else is healing well. I'm waiting for insurance approval to schedule my stage 3 surgery. A little fat grafting for left (radiated) breast and maybe a slight reduction or lift on the right one to get them to match better. After that it's tattoos, and I'm all done. I can't believe it!

I've been struggling a little with another health issue, and wondered what you all thought. I've been dealing with some shortness of breath, which has been happening off and on for a long time. I am starting to wonder if the radiation I had 4 years ago caused some damage. Anyone have experience with anything like this after radiation?

MsW2012

lemon, I am so sorry about your surprise pathology report. I hate surprises! Now it's that waiting game again, right? Did they get it all? Do you need to check lymph nodes again? Could it still be in the skin? Hopefully it's a definite yes, no, no! At least let it be good news, that everything is gone now. We really are soldiers. We have a road full of hazards but we can only keep moving onward.

Jmb5, I remember my rad onc telling me that my breathing could be affected by my chest wall radiatio n. Could that be it? Whatever it is I hope there is a simple remedy. If they haven't figured it out, maybe go see a pulmonary specialist? Best wishes to you on that.

On another subject, I would like to write an article about DIEP, with surgeon interviews but mostly from the patient's perspective. Please let me know if you would allow me to use any info you have posted here, with or without your real name or even your real sig-on name. I think there needs to be a source for new patients that spells out  lot more of the pros and cons, factors influencing recovery and results, etc. I have the impression that some of us are lucky and after a long road of stages and recovery we end up happy with our end result, while others end up feeling let down, when the results didn't come close to meeting our expectations. The article would have an optimistic voice overall, because that's how I roll. I believe patients are happiest when their realistic expectations come close to their actual experience.

Thanks sisters, for being here and for considering letting me share your stories.

tlbradyful

vballmom - I'm stopping my Tamoxifen today three weeks out from Sept 26 stage 2b. I'll stay off for three weeks after per my PS request to lessen chance of clots. I worry about being off. Since this is my third surgery this year, I feel like I've been off as much as I've been on. It's a weird feeling. Thank you for sharing your story vballmom. I feel like the break is necessary and remind myself of that each time I start to worry.

Lemon - I am so sorry you are having to worry about all of this. I know I didn't want to tell anyone or worry anyone, but it's too much to carry alone. We are here for you.

jmb5

I saw my primary care doctor today and told him about the shortness of breath and some other symptoms that I have had for 2 weeks that I thought was after effects of a bad cold I had... dizziness and numbness in hands when I stand up, headaches, a whooshing sound in my ear, fatigue. Those things and shortness of breath are all anemia symptoms. He looked at my records and asked if I knew what caused the anemia. I said "pregnancy" and laughed. (The only time I was anemic was during pregnancy.) He then informed me that the CBC done before and after my DIEP showed I was anemic and no one ever told me. He did an EKG, chest x-ray, CBC and some blood pressure tests. I'm guessing it's anemia, which is an easy fix. Glad he's being thorough and listened to me and didn't dismiss it. I should know the results of everything next week. 

MsW2012

jmb5 that's wonderful news. Fantastic. What a relief!

vballmom

jmb5 - I had anemia through chemo and my blood tests still show I am anemic. I received 4 units of blood in the hospital during my stay after the DIEP surgery and honestly, it made an enormous difference. I also had two transfusions while going through chemo. It is amazing the difference - when your counts are low, you are just exhausted all the time. I would have to lie down after taking a shower - I was that tired. What is the plan for you?

LiLi-RI

jmb5:  We are so lucky for our PCP, who evaluate and immediately address our concerns!

naiviv

Vballmom,

I so agree. I didn't know how exhausted I was, I was just used to functioning cause I had too. I was down to hemog 6, when I passed out and fell down a flight of stairs. No injuries, but three days in hospital with three transfusions and 2 IV venifers(iron) and I felt like a new person and I had only gone up to hemog 8. That hospitalization and subsequent followup w/ GYN because mine was due to heavy periods, is what led to my testing being done early and them finding the suspicious blip on mammo.  

Have a good weekend all

Vivian

mary625

I'm off of Femara now in preparation for September 24 Stage I.  Very nervous about it too!

goldie4040

Lemon, I wish there was some way to get you through this down period a little faster.  It will pass.  I don't blame you for being upset with your PS about the divot and the pre cancerous cells found. I find the whole thing strange.  If all your breast tissue is gone, and that was tummy fat he biopsied then where did the cells come from....?  I am no doctor, but something seems off.  Hair falling out and tickling your arms....UGH!!!!  Yes, that would make me nuts.  Maybe your hormones just need to level off, and the hair loss will slow down.  It sounds like you are starting to appreciate your diep results, right?  I am waiting to get to that place! 

JMB, good to hear from you.  I am glad you are seeing the finish line. Sorry about the anemia, but like you said, an easy fix. 

Ms, I can't imagine anybody would mind you sharing their experiences as long as you didn't use their names, unless they wanted you to.  Maybe you could pass the article by any particular person whose experience you mention in the article?