DIEP 2011

Sherryc

gardengumby thanks I am going to ask my PS about that at my next visit

SAMayoFL

Betsy!!!  No!!!  How are you feeling today?  I am so worried about you.  Please let us know how you are doing.

Sending up prayers for a speedy recovery!

Susan

SAMayoFL

Hmh23, you are only two days ahead of me.  Are you nervous?  I am not giving myself time to even think about it.  If you could see all the running around, cleaning, scrubbing, shredding, filing, mowing, etc. I have been doing you would laugh at me.  I have been on this crazy tear for at least 6 weeks.  When I finally get to surgery I am going to need the rest!!  My surgery is scheduled in Charleston, SC.  I had a right mastectomy in September with no reconstruction and am scheduled for a left mastectomy with bilateral reconstruction.  Where is your surgery and what are you having done?

ShellyAnn, I ended up scheduling my surgery in Charleston, SC although I live in Panama City, FL.  When I was researching my surgical options I wasn't able to find anyone who had used Dr. Klein.  Also, when I called M.D. Anderson they said Dr. Klein would not do a telephone consult with me and the lady on the phone, Vanessa, I believe, didn't know much about what they did during surgery, how many stages there would be, etc.  When I called Charleston, the ladies on the phone were able to tell me more than I ever wanted to know about DIEP.  About 4 - 5 days after I scheduled my surgery, I talked to two ladies that had gone to Orlando and were really ahppy with their results.  Of course, that's just my luck.  Orlando would have been far less expensive and far less stressful for me.  As I said, that's just my luck!

Susan

mamaoftwo

Congratulations to everyone who had the DIEP.  I have a radiation-related question. I had a BMX and bilateral DIEP on 1/12/11.  I then did chemo and am now starting radiation.  My stage II is being postoned until at least 6 months after I finish radiation, when the RO gives the go-ahead on it. 

I am wondering if anyone reading this has had DIEP prior to radiation?  I'm concerned about any negative changes to the breast and the relocated vein and whether scar tissue from radiation will make stage 2 unsuccessful. Anyone go through this? 

 Laura 

bdavis

Thanks ladies... Much better today... Still no pain... Lungs are seemingly behaving since my temp has been normal... I did end up with SGap and no Diep, in the end...

SAMayoFL

Hooray Betsy!!!  I am sooooo relieved to hear that.  I was worried about you.  Will you get to go home tomorrow?

Susan

Shellyann

Sam...I have heard good things about Charleston too. I just had my follow-up appointment today and they removed all 4 drains! :-) I had surgery a week ago yesterday. My radiated breast is doing great and my immediate recon side has some swelling and is slightly pink so they want to to take antibiotic just in case. I am getting around much better but have to be very careful not to overdo. Tonight my belly feels very tight. I haven't had pain meds since yesterday so I decided to take something. Otherwise I don't have much pain at all.

I am told I must keep doing my shoulder exercises and breathing in order to keep everything loose. I had frozen shoulder last year after my mastectomy and it took several months of PT to get full range of motion.

There is a great deal that you cannot do once you begin recovery from DIEP, so any prep you do now is smart. No lifting, carrying, folding laundry, dishes, reaching, pulling, etc. I just sit in my recliner and tell my family what to do- I hate that- but it must be done. ;-)

Hang in there everyone in recovery and those waiting for their day....don't stress, stay busy, get prepared mentally and physically but don't overthink it. I'm not there yet but I know that I will look back and say this was the best decision.

gardengumby

Betsy - why the change?  The SGAP instead of the DIEP?

hmh23

Susan;  I've been running around like a chicken with my head cut off as well.  I've painted and distressed a kitchen table, repainted kitchen stools and am currently making a new liner and skirting for a friend's family heirloom bassinet for her first grandchild. 

I had a left mastectomy Feb 10 and will have my right breast removed and bilateral DIEP on August 1st.  Can't wait to look down and see a cleavage!!!

I think the pace is helping me avoid even thinking about my surgery.  I have my youngest daughter coming home from her summer internship the night before surgery, then my mother is coming in Canada the day after surgery and my oldest daughter sometime the following week.  Lots of help!!!  My DH is always here for me and for that I am forever grateful. 

I've started  putting together a bag for the hospital.  Does anyone have any suggestions? 

Heather

c8ndygr1

Heather, looks like you will have lots of help. Let them baby you. You won't need to bring much to the hospital. If you go back to the posts from around July 13, alot of ladies were posting what they did or didn't need. Good luck to you. We'll be pulling for you on the 1st. Get someone to post how you are doing so we know.

daisy4ever

21 club: I was wondering how the rest of you are doing in the healing process, and how your noobs are doing, and what kinds of aches and pains you are having now that we are a month post-op.



My left arm is still hard to fully use. I believe my lymph nodes or glands are constricted and agitated. When I try to lift my arm up it pops out and it gets tight under my arm. I can actually see and feel the lymph system, or maybe it is a vein. My breast surgeon said it has happened to other patients, and I need to exercise and use the arm, and apply moist, warm compresses to it. I am going to give it another week or so, and then I may go back to see what else can be done to loosen it up. I have to wonder if a suture is holding it down.



My new boobs are softer, and more squishy in the center area of my chest. They are harder underneath where the drain lines used to be. I think most of the swelling is gone, and they are smaller than when I left the hospital.



I stopped wearing my binder a week ago.



My scars are healing. my belly has remained flat, but I have some love handles on the back and on my sides that are not so pretty. I am going to ask what can be done about them a few months from now.



I am still very happy about having the surgery for DIEP. My energy level is getting better, but I still get sleepy in the afternoon after a busy day.

c8ndygr1

Daisy, maybe your PS can send you to a PT to work out what is constricting your arm movement so it doesn't become a permanent limitation. I've been doing some arm exercises to work out the stiffness and it seems to help. 

21 Club: The noobs are softening and starting to drape better. The navel we thought was dead is almost healed and looks good, as well as one small spot on my breast that requires antibiotic ointment. The scabs on the incisions are all gone and I've been putting an intensive healing lotion on them. I still have some swelling on the abdomen and on the sides of my noobs. I don't have to wear the Spanx 24/7 anymore but I'll need it again after Stage 2 which is scheduled for Sept. 12. I'm back sleeping in the recliner nest. DH is grumbling but I sleep like a baby there. Still get tired sometimes in the late afternoon and take a short nap. I know I am still healing as I'm normally NOT a nap person. I am totally happy that I did DIEP and I love my smaller breasts even though with the fresh scars and no nipples, they are not real attractive right now. But they will be way better after Stage 2. I have no regrets.

Good to hear how you are doing at 5 wks post op, Daisy. Now let's hear from rest of the 21 Club...Suz and Lynne?

grdnslve

finally slept in our bed last night for the first time...without any meds for pain or to help sleep.  feels like a milestone.  scars are looking better all the time, although still have some stiches that don't seem to be disolving & are kind of pokey.  at 4 weeks out is this normal for everyone else??  the hard spot that is tender is still there, complete with dimple/divot.  ps hasn't called back, so wondering if he even got the message as he is so good about calling.  have had some issues with the staff before.  just am wondering if it is scar tissue or what.  should i leave it alone or massage it? 

the wedding must have been over the top for me as i sort of crashed for a couple of days & was hurting more.  just feels odd to have such a seemingly little thing push my endurance level to really need a nap.  maybe it was the  you are going to be crippled shoes.  when things have advanced to the 'shoot people into space & bring them back alive', why can't they make comfortable, yet sexy shoes for women? 

bdavis

Gardengumby... I was scheduled for stacked diep (hips and abs), but in the end they only used hips... So much less invasive. I didn't have a lot of ab fat.



Susan, yes, I was released but then this morning made a big mistake by decompressing and stepping right into shower... Too much blood movement and I fainted... Not a good thing to do with 4 drains and noobs that are trying to survive... Went to doctor and I am ok, but a bit weaker today... My drains were a little traumatized and have been on super output.

mscal02

grdnsive: I had to have my stitch cut out that did not dissolve. It left two small holes there. The place is finally closing up.

betsy ; take your time. I know that by now you are anxious to see more progress.It will happen in time.

Suz39

Hi All,

Just checking in again, and see that the 21 club is active .  I was supposed to start chemo today, but yesterday, after they put in the PICC, my oncotype dx results came back as 10.  They have decided to delay my chemo until further consultation, because it was such an unexpected result.

As for my DIEP recovery, I am feeling great.  I still have mild pain in my breast area, but nothing that I need any pain killers for.  In a way it is kind of reassuring, because I have feeling there, whether it is phantom pain or not, at least I feel like I have a boob.  My arms are also still stiff, and I do stretches 3 times a day to increase mobility.  My noob/foob has definitely shrunk since I left the hospital, and it is resembling my real boob more and more.  I am very small chested, and as much as I was hoping to go bigger, now that I won't be able to do stage 2 until after all my other treatment, I am happy that they are matching a bit better.  I also still have swelling in the belly area.  I wear spanx during the day, and nothing at night.  Lately I have been taking the spanx off earlier and earlier in the day.  However, my PT told me to wear them as much as I can stand because there is a lot of lymph nodes in the groin area, and you want to keep them draining and fluid moving through them.  Maybe that is because my belly is still swollen.  My PS has not seen me since the day after my surgery.  We will have a telephone consult tomorrow.  I also have a lot of stitches that are poking out of my incisions - not sure if I should just leave them alone.  I still have a little scab on my belly incision, but other than that, just scars, and prickly stitches.  

I am also potentially facing radiation, so will ask the PS about the impacts on my noob on Friday.  Will post again with her thoughts for mamaoftwo.

Good luck to everybody moving forward with their DIEP! 

RetiredLibby

Ladies, I have thanked you all before for all of the information you have so generously shared here with each other and with newbies to this thread. I have read all 75 pages and have written down questions for my surgeons based on what you have so kindly shared. I wanted to tell you the impact you have had through the simple act of telling your stories. I was having a conversation with the nuse navigator today about issues surrounding my 8/23 surgery. I asked about arms overhead (mine go to sleep quickly and I am slightly concerned about nerve damage). I asked about constipation and said I had some laxatives and asked about doing a little "purge" a couple days before. I then asked about Spanx or another type of compression garment and she then said, "You are absolutely the most prepared patient I have ever talked to! You are asking questions that I haven't even thought of, and they are good questions. Because you are so prepared and are asking such good questions, I have learned from you. You are helping to make this program a much better experience for women who come after you." I told her it was from all of the women who so selflessly shared their experiences here. So, ladies, thank you from me, thank you from the medical staff at my hospital (one in a large city on the east coasg), and thank you from the future patients at this breast center. You rock!

ladym13

Suz39- Great to hear from you...funny you have a phone consult tomorrow, I have my FIRST appointment with Dr. Zhong since my surgery, I did go in and see another surgeon when she was away, but this will be the first time seeing her. Funny we always seem to have appointment on the same day...lol

Just to let you know, I ALSO have all my feeling back, after my mastectomy it was really sad for me that I had lost all my feeling, the DIEP has been a miracle for me, maybe Dr. Zhong is a magician because all my feeling has come back.

I also had those little prickly stiches that didn't dissolve, just the other day I stayed in the shower longer than normal and washed them really good with soap and water and voila...they are gone.

Really hoping I can get a stage 2 date tomorrow...here's hoping

SAMayoFL

Betsy, oh no!!!!!  I hope you get your strength back day by day.  Do you have someone there with you?  I remember your DH couldn't stay the whole time and you had a friend to stay with but she works during the day.  I am sending you positive thoughts and healing prayers tonight!

I am 3 1/2 months post chemo.  I have days of feeling almost normal but then days of feeling really bad.  For the last two days I have been feeling BAD.  I feel like I did during the middle of chemo.  Last night and tonight I am running a fever of 99.5, which I know is very low grade, but it's enough to make me feel bad.  My bones, muscles, joints and everything else hurts.  I didn't have a fever today just this evening.  I finished a Zpack last week because I just had a nagging cough and have since the middle of chemo.  Somedays I am really worried that I am simply not well enough to do this surgery right now.  Please, please send positive thoughts my way that I will be well and will be OK for surgery.  We have made all kinds of plans, spent a lot of money and are all ready to travel from FL to SC.  Now that I am this far, I am having doubts.  Not about the surgery as much as whether I am well enough to go through with it.

Like Libby, you ladies are what has brought me this far.  I am so hoping that I am strong enough to be on the other side one week from today!

Susan

c8ndygr1

@Happy Libby, that was nicely said. We are all helping each other get through this. It helps to know we are not alone and that we run into some of the same experiences, be it nasty drains or stubborn stitiches. I always arrive at doctor appts armed with a laundry list of questions. They expect it from me now. Back in April, my breast surgeon's eyebrows flew up went I asked her about possible intercostobrachial nerve damage during mastectomy - how many times has she been asked THAT question by a patient? LOL

 Good luck to you on your surgery next month.

bdavis

Susan... I am still with my friend... She isn't working now that I am out of the hospital... My dh comes in Friday and then we fly home Monday.... Take care of yourself with an extra multivitamin each day... You don't want to postpone now....,right?

c8ndygr1

Susan - sending powerful healing vibes your way so that you feel better soon and will be cleared for your surgery next week. Hang in there, girl. You're so close.

mamaoftwo

I am enjoying reading all the latest posts.

Betsy - take it easy... You are lucky to only have to do an SGAP instead of DIEP, from what I understand that is an easier recovery and you don't need to deal with abdominal surgery.  You went to a great place; my mother had GAP surgery there several years ago using upper buttocks; I'm not sure if that' s IGAP or SGAP, but her recovery was very smooth and hopefully yours will be to.  

Suz39- I'm glad you're recovering well. In my experience, the binder and/or Spanx really helps keep belly swelling down.  If you learn anything about post-DIEP radiation, I would be interested.  When I had DIEP in January I assumed I wouldn't need radiation, and have never had a conversation with my plastic surgeon about it.   

treesprite

grdnslve: re: leftover stitches . . . I had a couple that had to be removed; it was a weird feeling to have a 'stubble' poking out! One had to be clipped. A nurse also found a staple that had been left in my back . . . that was weird and slightly disconcerting! She said they use staples to hold the drape in place . . creepy!   

Re: painful spot - Give that doc another call . . .sometimes they need a bit of nagging! I would leave it alone until you get a call back.

I have had a few comments about how informed I was as well . . .the doc who set up my sentinal node procedure (getting the injection) asked me if I worked in the field!

Susan - you don't have to worry . . .what will be will be and the docs will make the decision; they have strict protocols and will only proceed if they feel you are in good shape. The wisdom that has brought you to this point will prevail. I vote for lots of rest and extra vitamin C.

What is a 'ZPack'?

I have about two weeks till stage 2 . . . .my plans to lose 10 pounds pre stage 2 are fading . . oh well, not something I am going to stress about! I continue to look fabulous in clothes . . looking forward to looking fabulous in my birthday suit!

Kathy

mscal02

Sam: Positive thoughts are being sent your way.Maybe you over worked yourself trying to get things done before you have surgery. Take it easy and just rest from here on out.You have come too far to turn around now.

SAMayoFL

Today, I am finally feeling better.  Hooray!!  I have really felt rotten the last couple of days.  We found out yesterday afternoon that we are able to stay at the Hope Lodge in Charleston.  I am breathing a huge sigh of relief as doctor bills, travelling expenses, etc. were really putting a big bite into our budget.  Tomorrow is my last day of work.  We are leaving Saturday morning and hoping to see some of the sites in Charleston.  I think leaving my home, my pets and my family is going to be hard but the future waits!!  Lori, I am six days away from joining the 2hotboobs.com club.  I can't wait.  I am going to bed tonight with my relaxing music and thinking positive thoughts about how wonderful it's going to be to make a Chia pet out of my prosthesis and how wonderful it will feel to have cleavage and summetrical boobage again.  Charleston, here I come!

Susan

ladym13

good luck Susan, I'm sending you loads of positive thoughts

grdnslve

susan-  best of luck & wishing you a wonderful result.  take care.

mspradley

treesprite - I am 3 weeks post stage 2 and still have several "stubbles" that are driving me crazy!  Each scar seems to have two of these stiff stitches that won't dissolve. I've tried to gently pull on them to see if they would pull through, but they won't.  I am afraid if I clip them down to the skin that the little bumpy area of skin that surrounds the stitch/scar area won't clear up.  I'll see the PS for another follow up in 3 weeks and try not to pick at them in the meantime.

mspradley

Does anyone post DIEP or post stage 2 have any hard spots along/around their abdominal scar?  I don't remember noticing any post DIEP, but have a couple that feel like almonds under my skin above and below the abdominal scar (it was revised during stage 2).  If I hadn't had some spots in my foobs that softened after the DIEP, I'd be freaking out.