DIEP 2014

jbdayton

Lipgloss I am so sorry for the flap failure.  I was there last March.  I was devastated.  The only difference was he only made me one DIEP breast (the radiated one) because I did not have a good second set of arteries and veins.  I woke up with one DIEP breast and the TE still in my non-cancer breast.

My PS of course wanted me to do fills and implant, said he could make them look very good.  I just did not want implants for many reasons.  He said give him a couple of weeks to come up with a new plan.  He decided he could do a Ruben's flap which basically meant he would open up the side of the tummy flap and take more tissue around the hip and use the Iliac vein and artery.  The next surgery was done 3 months following the DIEP and it was successful initially.  If I had not had a healing problem all would have been great.  I did end up with a major healing issue about a week after I got home and am still healing.  Even now I would still do the same thing all over again.  An implant would not give me the same satisfaction as my two soft, warm mounds called breasts.  

I will be waiting for a few more months to finish healing from the two flap surgeries and the surprise gallbladder surgery from three weeks ago.  

I just hope you can take the time to think through all your options and not go with the easiest route unless you can live with end results.  

My prayers are with you while you make your decisions. 

Kb33

well ladies.   Today is my last day home and then I fly down to NOLA at 5am Monday.   In true last minute fashion... I will be getting there two hours prior to pre-op appointments.   Yikes.  Still have a long, long list of stuff to get done today.... The most of course is house cleaning for my perfecto it's sister who is staying with my girls while I am gone.   She has already commented on how clean the house must be... Sigh ;-(

I'm still waiting to get nervous.... Since I know I am not excited about stage 1.   Perhaps I will be excited when I am going for stage 2 ;-).   In the end... I think I'm just relieved to get this going so I am closer to it hopefully being a distant memory.   But long road to get through first.

Scheduled two calls for work during my layovers and offered to get a few kids set up in a gymnastic class before my surgery.   Difficult to hear last night that other people took over the tasks and told me to concentrate on healing instead.  I think I am most nervous to be doing nothing.   I work 16 hour shifts and run my girls the rest of the time and sleep like 2-3 hours a day.   Never turned on the tv in bedroom in 5 years and have read a newspaper, watched tv show or even time to search internet for current events in years.   Worried about how I will handle all this down time

Thnx to everyone who has let me read and do a little sharing over the past few months.   Has really helped me mentally prepare for the road ahead and stay ok with my decision to do the DIEP instead of implants.   Let's just hope it all works out.  ;-).  And then I might really be able to participate in the conversation after next week.  

GeorgieGirlKC

Good morning! Catching up with all the posts from the week. Hope everyone has been enjoying a nice fall weekend. The weather here has been perfect, Low humidity and mild temperatures. Heaven!

Pzercher my stage 2 included a lift which I believe is called the lollipop?? They cut out and moved the nipple and areola up, made a vertical cute from the midline of the breast, under the areola, cut out some tissue and sewed it back together, creating the lift. I also got fat grafting.  I just passed my 3 week mark post stage 2 and have had some skin healing issues on the reconstructed nipple on the flap side. I went to have stitches taken out last week at my local surgeon's office. NP had to de-bride the lower part of the new nipple so now it is very flat on the bottom portion. It has been bloody since. They have me putting an antibiotic cream on the area.Thankfully the area was not infected.  The NP told me that area would not Re-granulate i.e. the skin is not going to grow back there..  It doesn't look terrible but will not have the cosmetic outcome I had hoped for...I have made an appointment with my local PS who does flaps to monitor the nipple situation because I plan to do my tattoo locally anyway. 

Debiann, my clothes size has not changed but my pants fit a little different due to new shape. I would hold off buying any bras besides what they tell you for surgery because you will have swelling!

Lipgloss so sorry about your left flap. There are no words. It sounds like they did everything to save it. I hope you have started on the path to healing and are getting lots of TLC.

Marianne welcome to the group. I think that dr.'s tend to recommend what they do. You might consider seeking out as many consults as it takes to make you feel comfortable and confident of your choice! You will see here that age isn't a factor for success. Lots of good stories on this forum for 60+ DIEPs! Good luck, it is tough to get to that final decision point of what is right for you.

MsW2012 sorry to hear you've also suffered with the sleep issues. I bought a guided meditation cd a few months ago and should dust it off and try it again.I really want to try and get to a point where I am not needing those pills anymore but know that sleep is so important too for healing. Like you, I think anxiety plays a part with the sleep consistency. I like your idea about an article. I am with Goldie, for those who agree to participate, probably would not want any  information that would indicate identity, also like the idea of sharing the article with anyone who agreed to be apart of it, prior to publishing it. What a great idea to collect pt. experiences to share with other women considering the DIEP. 

Meg2 I was off Femara for 2 weeks before stage 1 and 2 weeks after...and then 1 week before stage 2 and 1 week after. My onc was not happy about it but PS office assured me they do it all the time and they haven't had issues. I felt nervous about going off of it but also enjoyed the relief of the s/e from the Femara. Isn't it shocking of all places, a hospital, you couldn't get good (for you) food?? 

Vballmom so happy you are pleased with your results. Made me smile! Very informative post last week about how you went about coming to your decision. I agree with you, you have to investigate, ask questions and consider what is going to work for you best as far as a timeframe. I think in geographical areas where there are not any/ or not a lot of surgeons who do the DIEP women are not hearing about ALL their options. We have 2 PS in Kansas City who do the DIEP but wasn't even on my radar. My first consult was with a Dr. who did the Lat flap and implants.  He was kind and mentioned to me that we had the DIEP option in KC but he didn't do them. He also said he didn't think I had enough stomach to do it but encouraged me to go see the DIEP PS if it was something I wanted to pursue. I did and found out I'd have to wait months because of the long list of women scheduled before me. I decided to investigate outside of the state if my insurance was in network. I am glad I did although staying in state would have been ideal, I am done with stage 2 now, whereas I would have been just starting the healing process from stage 1 if I'd kept my original surgery date in KC. I was willing to travel to get 'er done so I could move on. I know my recovery was probably tougher from an endurance standpoint having my DIEP just weeks after my last radiation.  P.S. love the comment about the flat tummy!  

Goldie, the link you shared, beautifully written. Couldn't agree more with her point of view about pink washing and Oct/breast cancer awareness month and some of the things that go with it. Much better ways to create awareness, raise funds for research, etc. It makes me sick to think of the profit too that companies reap from their participation in "raising" money for research. A lot of times, very little of the purchase goes towards research. And the go without a bra day to create awareness. I'm sure well meaning, but REALLY? The picture she posts at the end of her article touched my core. Vulnerability and bravery. 

Vivian you are a trooper and an inspiration. What is NED?

Teacher glad to hear the nips are looking good and the bulge is getting better. Happy shopping!

Lemon sorry about your latest news and glad you felt comfortable to share with us. That is a heavy burden to keep inside. I hate it that you are going through this and on top of it your dr. is so causal about it all. I don't think they realize sometimes the brevity of the news they deliver with such quick off the cuff comments such as don't worry about it. Saying prayers for you and know we are all here for you. 

JMB5 so good to hear from you. I was thinking about you the other day and wondering how you were doing. Thank you for all you do to maintain our list and keep us updated. Exciting that you are approaching the end of your DIEP journey. Glad you got some answers for your shortness of breath. Sounds like you have a good physician. 

KB33 thinking about you as you start your journey this week. Hoping that you are able to fill your down time for healing with all things good and restoring for your mental and physical self. Andrea thinking about you too girl!! You two keep us posted as you can! XO

rose111

good morning, ladies,

Can anyone advise me how you knew when it was ok to begin wearing a bra again?    My PS does not have me in any  type of surgical bra or compression.    Since my surgery 11 weeks ago, I have been living in the white man style tanks that I read about on this post.   They are very comfy and have worked to great until I went back to work last week.    I have an area of skin that had Rads and is not healed yet, so I have not wanted to wear a bra, but things have changed now that I am wearing real clothes in public!    I see the PS again in 2 weeks so will also ask him, but I get most of my best advice from you all.     Thanks and best wishes to all with up coming surgeries.

Rose

LiLi-RI

Happy Sunday Ladies!

So much is going on......

Lemon- I hope you are Ok.....and I agree with Goldie....you must have a lot of Qs still for PS.

Jbdayton: Sending you lots of healing thoughts....I too am still experiencing healing issues with both breasts.

Kb33: You will get it all done....safe travels and stay in touch!

MsW2012: I think the article is such a great idea! It would have been nice to have one resource with real experiences to read before I made my decision even though reading all the posts truly helped, and I am still happy with my decision inspite of my issues.

gila4936

Hi all. I have a lot of catching up to do on reading but I wanted to catch you up on what's been going on in the past week. My Stage 2 was Friday the 29th and it all went well, but I woke up with two drains. Saturday and Sunday I mostly rested but managed to go to the 3rd birthday party for my goddaughter's sister (whom I'm also very close with). Monday my husband and I were lazy, binge watching House of Cards when a police officer knocked at the door and we found out that my mother died. 

My mom was 71, and a 22-year breast cancer survivor. She had not been ill, but for the past two months she was the primary caregiver for my grandmother, who is 96 and suffering from dementia. That had taken quite a toll on my mom, both physically and emotionally, and just a few days prior she had started the process of getting my grandma in a nursing home. On Monday morning my mom went to her room to take a nap and just didn't wake up. My grandma found her but didn't realize it was her daughter; she just thought it was the girl who takes care of her. Somehow she managed to get herself outside and yell for help. 

My husband and I live in Columbus and my mom was just about an hour away. I have one brother who lives in Pennsylvania. So my husband and I got over there and quickly got grandma in the facility that my mom had talked to. Between planning for the funeral and dealing with grandma, I was driving back and forth to Columbus to see the PS. I had an appointment Tuesday and he didn't feel comfortable taking out the drains just yet. We explained the situation and he said he'd be fine taking them out Thursday morning. He had a procedure scheduled at a surgery center and thought I could just come up there but his PA said she didn't know if the surgery center would let them do that. He said "well I'm calling them right now" and he made it happen. I am beyond thankful for how wonderful they have been. 

We had calling hours Thursday and the funeral Friday and we came home Saturday afternoon, with visits to grandma in between, which could fill up another huge post. If anyone knows of a good dementia caregiver online community, please let me know. 

And so, in the midst of all this, I haven't been able to focus on my own healing. And to add another blow, the goddaughter I mentioned above died Thursday night. She was nine months old and was born with a fatal seizure syndrome so we knew this was coming and we've been grieving for nine months already, but still...

Thanks for reading. Thanks for being here. 

ChrisInPA

Kb33 - safe travels tomorrow!  Looking forward to hearing from you when you are ready to update on your progress.  

Gila, My deepest sympathies.  What a horrific week!  So sorry for your losses.  I am not aware of any dementia caregiver support communities, but do have a friend who is taking care of a parent with dementia and I will ask her about it.  *gentle hug*

Teacher64

Gila - so sorry about all you have been through. 

MsW2012

gila4936 I am so sorry for your tremendous loss. I can't imagine. I will be praying for you and your family. I lost my closest friend just a few days before my mastectomy. It was so sudden and the timing was so awful. Somehow the two events kind of softened each other for me. Take it easy on yourself. You will be in my thoughts and prayers.

MsW2012

Thanks everyone who commented on the article idea. Yes, I will contact anyone whose posts I would like to use. I will keep you posted. -Elizabeth

Andrea623

Oh Gila, I am so sorry for the heartbreaking losses in your family. I pray your heart will be comforted.

Good luck, kb33! I'll still be your surgery sister, even though my diep didn't work out. Have a safe trip, and I wish you the very best for your surgery. You're in good hands and I know they'll take good care of you at NOLA.

Georgie, thank you for thinking of me. You always manage to have a little something for each person on this thread, and I want you to know how much it's meant to me. Hugs!

naiviv

Gila,

My deepest sympathies to you and your family. I shall be praying for all of you.

Vivian

Teacher64

kb33 - have a good trip and let the medical team do their work. Say hi to Wilbur.

vballmom

{{{Gila}}} I am so sorry. What a difficult time for you!

MEG2

Gila, I am at a loss for anything to say that will take away the pain of losing your mother and goddaughter - it seems so unfair to be dealing with BC/Treatment/Reconstruction and have to go through all this other trauma.  Please, please take care of yourself, I know you mother and goddaughter would have wanted that.  Peace to you and your family during this difficult time.

   

MEG2

Georgie, my thoughts exactly...why the hospital doesn't have more healthful options is beyond explanation.  I am going to check in with my PS to make sure I follow the correct guideline regarding taking/not taking meds prior to surgery.  Also, my Doc has never mentioned stages to me as far as the DIEP, I gleaned from reading the thread that there is a stage 1 - the major event and then stages 2 and 3 for minor fixes, touch-ups, etc...glad I learned this ahead of time rather than discovering after the fact that it's not a one-shot surgery.

Thankful to you ladies for your words and wisdom.       

pollyanna5

Hello  Everyone!  I haven't posted in about a month as life has just gotten crazy.  I had my 6 week check Aug 1, interviewed for a job, was hired, started working and then into back-to-school and activities with the 5 kids.  It's just been a woosh since then!  I've been following along with people as I can here, but when I go to post at night when I'm reading, I usually just go to bed!

I had my 6 week checkup, and the PS was pleased with how things have settled, although the right breast has what looks like rim(for lack of a better word) on the cleavage on the bottom.  I don't like it, but it's a wait and see what will happen with it.   My size is smaller then he would have liked to have done, but only so much of my tissue was usuable from 4 c-sections.  I'm just happy to have a chest most days, althugh I am not used to smaller breasts (going from a GG to a full C, and now I'm a full B/small C?)  yet!.  I am a bit concerned when I lose my last 30 lbs that I will be left with nothing.  He mentioned implants if that happens, but I don't really want to do that.  So hopefully they don't shrink too much!

I am booked for my nipples in September of next year.  He is booked until then.  I was hoping sooner, but it's Ontario, so long waits for non-emergency procedures are the norm.  He does the nipples in the office, and sends you to the tattoo artist afterwards (I think).  He will also re-evulate the breasts then, to see what if, anything needs to be done.

I am still having periodic belly swelling.  I will be fine, and them whammo, swollen belly  It's weird.  So, I am still having to pull out the binder periodically.  

I was hoping to start excercing more, but no time!  I started back to work, and it's been busy.  It was sooner then I would have liked to return, but I needed to, and it was a great opportunuity working with a non-profit where i work in between the kids at school (9:30-3)!  

Also, now that things are all done.  I'm having a hard time wrapping my brain around all of this.  It happened so FAST, from reduction in March, cancer in April, surgery June 10, recovery, clear pathology July 2 but LCIS found in other breast, etc.  Also, a lady at church has a young niece with a ductal cancer that has gone invasive, so I've been doing a lot of that could have been me, if it hadn't been found (she's good so far, but chemo-mastectomy-radiation, yikes!).  I kind of have had to take a bit of a mental break from being a breast cancer survivor.   I even have had a bit of a hard time with that, as I "only" had DCIS (albeit widespread).  

I'm all over the place, sorry about that!  Juts wanted to touchbase, and reconnect.  I am looking forward to getting nipples, and getting more normal looknig breasts.  But, I have to wait the year , which is okay, I guess. 

THank you to all of you.  You have helped me through this process, and it's a good place to come to discuss it!

One weird thing is I'm having the odd shooting pain in the armpits, or even just paint at times.  Wondering if it is the lymph nodes (I just had the sentinal done on each side)?  And the odd shooting paid in the reconstructed breasts? It feels like nerves, but I thought I didn't have any left?  Very strange. 

Kat-ski

I am so ready to get Stage 2a going.  I have had to change the game plan again.  I have an appointment with a PS here in town at the end of October.  I do hope to get it done before the end of the year.  But I don't know if it will happen now.  My husband is in the ICU for abdominal bruising of the the aorta.   So, it is once again one day at a time.  He is on IV meds to get his blood pressure to a certain low point then they will wean him and put him on pills.  He went in on Thursday and there is really no talk of release until he is totally stable.  Life is not being nice right now and I am trying to stay calm so he doesn't get stressed.  He is a very gentle person and goes with the flow which is just the opposite of me.  Just pray is all I can ask.  Love to all Kat

goldie4040

Gila,  I am so sorry for all the loss in you life.  Both you mom and you goddaughter where both too young.  I know how difficult it is to rest and take care of yourself, but please try.  Please keep us posted on what's going on.  You poor confused grandma.

Pollyanna, I too am disappointed in my size and shape.  I am probably getting a very tiny implant put in for stage 3.  I have heard it can make a world of difference. 

kb, good luck. Nerves are normal.  You will do great.  You should like a "get it done" kind of person.  You can do this.

LiLi-RI

I am so sorry Gila for your losses! We are here for you.

Lisa

Teacher64

Pollyanna - I went through a bout of guilt because it was "only  DCIS" too. I even considered canceling stage 2. No matter the stage or grade (I'm not diminishing anyone, their diagnosis, or treatment needs.), it is still cancer. It is a challenge for all of us and we just keep moving forward. No comparisons, just learning to live with and love the new lady we become so that we can live with joy. The person who gave me wonderful advice has been through two different surgeries and cancer treatments. She said it's not a contest, no blue ribbons and she lives with a smile. 

Kat-ski. Thinking of you and your husband.

naiviv

Katski sending prayers.

Andrea623

Kat-ski, I'm saying a prayer for you and your husband.

Marianne52

I thought I would run this by all of you. My DIEP phase one is going to be done in two surgeries. I had a Pulmonary Embolism year's ago so the PS is sending me to a vascular Dr. to tie off the perfectors which will cut my surgery time down by two hours. He doesn't want me on the table too long. I saw this Doctor five weeks ago. I have been calling the Office Mgr. several times a week to try to get a date for the Surgeries. After harrassing him for the last three days he finally told me to come in this coming Friday for the first surgery, then on Oct. 10th for the second surgery. When I asked him when I would be coming in for the EKG, bloodwork and to meet with the Anesthesiologist he told me that wasn't necessary. I am totally shocked. I would like to know what tests are done before this surgery. I appreciate any input. Thank you. Marianne

annieb4

Gila, I am so sorry for your losses. There aren't words, but I am thinking about you.

Kb33, Good Luck to you tomorrow.

Kat-ski, my prayers are with you.

Life can sure throw some bad speed bumps in the road, can't it? Sure makes you wonder how much a person is supposed to take.

LiLi-RI

Kat-ski: I am praying for you. We are all here for cyber-hugs anytime.

Marianne: Something does not make sense.....which hospital in Boston? I was at BWH. I had to go in on a separate day for blood work, CAT scan, etc.?

Lisa

annieb4

Marianne, I don't remember anyone needing an EKG, but alot of them had to have CT scans. Not all of them though. My PS has ordered a CT scan before my surgery to check the blood vessels, etc..

Marianne52

I just got a call from the vascular surgeons office. I will be going in for an EKG and bloodwork prior to him tying off perfectors. He will be doing that on 9/19. I am having the DIEP on 10/10. I will be getting more info in the mail. I think the Doctor needs to find a new office mgr. All the confusion was from him. My surgery is at MGH. I did go to BWH for a second opinion but they wanted me to have a Lat Dorsi Flap. I didn't want to go that route. Thank you for answering my questions. Marianne

ChrisInPA

pollyanna5,  I have those shooting pains as well.  My BS said that it is "phantom pain" and not very common in BMX - BUT! - it is very common in amputations (which BMX is, IMO).  He referred me to a Doc that specializes in amputations who gave me a prescription for when it keeps me up at night.  Funny thing is there is nothing leading up to it - just WHAM and it feels like you are being tazered from the inside out.  It has calmed down a lot in the last 2-3 months (I am 8 months out).  Heres hoping it stays quieted down after my Flap surgery.

Marianne, Glad you got that straightened out.  Cannot imagine them going into surgery without a blood panel and EKG.  My Doc even ordered a type and cross, which I have never had done before.  In the past, I had asked my PCP what my blood type was and he had no idea.  I have been seeing him for over 15 years and been through 3 surgeries without ever having my blood type tested.  Now I know I am A+ but it makes me a little bit nervous about this procedure and why they needed that information.  Better safe than sorry, I guess - maybe it is just the PS's protocol.  

Marianne52

pollyanna5- those pains are most likely the nerve endings from your surgery. I still have them 2 year's out from my mastectomy.

Chris in PA- how long were you in the hospital after your DIEP surgery? Was the recovery long? 

Is there anything I need to buy before surgery? 

Thanks, 

Marianne