DIEP 2014

aff

Ann - Sending prayers your way. Your great attitude is inspiring!

1toC - thanks for the tip on hydrating the day before

JerseyMom - so awesome to have such a day with your family and thanks for the tip on Dr Levine - will def call today

Anyone have a port prior to surgery? My oncology nurse (who is one of the greatest people on this planet) told me the hospital may not use the port for surgery because they may not know how to access it. I was in such disbelief that I didn't even know how to respond. All these months with this damn port and now they may not use it for my surgery!!!!! Insanity

sibrhusky127

Hi All,

I had DIEP flap surgery (both) on 4/28/14, and am doing great....but I just wondered when I can expect the tightness and swelling in the belly area to calm down (?)  Everything else seems to be going good -- incisions are healing and I have been able to walk around a bit and get my strength back.

For all those considering this surgery, I was certainly concerned, but it IS doable.  The pain medication in the hospital and at home (if you need it -- I didn't need much) works well, and the results are great.

Thanks

jbdayton

aff, my port was removed during my mastectomy.  Also it seems to me the location would be in the way during the mastectomy and DIEP procedures. 

brendarj

1toC thanks for the info and tip

lemon68

Goldie hope your tummy is feeling better today. I had some mesh put in due to scaring from my hysterectomy my right side hurts horribly and that's where they took the muscle. Any chance muscle was taken? I am having spasms in the tummy that really jolt me. I also in the last few days am very aware of the incision and I think feeling is coming back.

I am drain free!!! Yahoo... last one taken out this morning. My swelling is really bad, I feel like I have that plate of steel in tummy and a iron bra on. PS says I will feel better at 6 weeks. They upped my dosage of pain killers today and I am going to keep taking them as long as I need them and not feel bad about it.

My BS also called to let me know my pathology showed A typical Hyperplasia lobular littered though the left side. She feels in 1-2 yrs I would have been down this road again. Neither the mammo or MRI showed it. I feel so good knowing my "gut" told me what to do and I feel like I may have prolonged my life. Its so worth the pain and everything else.

Jerseymom- wonderful you got to go and enjoy yourself, even nicer you got all dolled up for it. I think we need that. I have a bright purple surgical binder on top now and it makes me feel better.

Ann- sending lots of love and prayers your way. I am sure you will meet some wonderful women there but they will be the lucky ones meeting you.

Trinity0723

I'm new to this board. Am having DIEP June 20. Kind of concerned about pain control, dog ears, post surg in hosp and home care.

I have a pretty high pain threshold due to migraines and post cancer pain all over and back issues. My pain doc just dropped my insurance so I'm really concerned about pain control now as well as after. 

I've seen/heard about dog ears and I'm wondering how often that happens and wondering how that is handled. 

Also wondering about post surgery pain control and other post surgery issues y'all have had to deal with. 

Thanks everyone,

Michelle

rose111

hi everyone,

I have missed a few days on this post , but my surgery has finally been scheduled.  I took the great advice given to me by several of you and  calmly requested any surgery date that could be scheduled and not changed again.   Coincidently, it is June20,  the same date as Trinity in the post just above this one.

I have been collecting all the tips so that I am as prepared as possible and even went shopping for maxi dresses today!

I am inspired by jersey mom and others who are up and about soon after surgery.  Thanks to all for the positive support. 

Rose

sibrhusky127

Trinity,

I was REALLY scared going into this surgery.    My surgery took 9 hours.   I woke up with a very sore throat but no nausea at all.  My body felt "hot" with pain from the fresh incisions, but the IV pain medication and pain pump (I had dilaudid). worked really well.  And if I was "still", there was not much pain at all....which allowed a kind of respite.

I found that a good nights sleep really helps you heal.    

I must one of the lucky ones.   My 4 drains came out at 1 week post op.   I am still a bit sore around the belly area, but am walking around well.   Had some numbness in the back of the arms and belly, but feeling is starting to come back.

goldie4040

the1toC, thank you!!!!  I am so happy you are having such wonderful improvement in so many areas from your surgery.  I don't know why they even let woman with implants, or expanders have radiation.  If they know you are having rads I can see them putting a expander in to save the place, but they know the implant is going to get ruined.  It makes no sense.  The more I read about rads and the damage it does to lungs, heart, skin, lymphatics, I wonder....is it a must?

Lemon, I still can't stand up straight because I am too tight, but the pain is getting better everyday.  I also have the iron plate on my tummy too.  I wasn't told any muscle was taken, so I am assuming it was a regular DIEP.  I would hope to be told the whole story.  The tightness on the top is also disconcerting.  Muscle relaxer's help that, but I only take one a day.

sibrhusky, glad you are doing so well, and happy with your results.  Everybody is different when it comes to healing, but the tummy is especially tricky.  Some people have very little swelling, and other can have swelly belly for months.  I would think moving around would make the swelling better, but most find that activity makes in worse, but you have to keep moving.  No matter what, that's for sure. 

Trinity, welcome!!!  You have been reading and making a list of fears.  I did the same thing.  Dogs ears can be fixed if you get them.  There is usually always a stage 2 to this surgery.  It is usually never as invasive as the first stage, and you address all the little things that need to be tweaked. I also have a bad back, and I have been using pain meds that the PS gave me, which help my back and the surgical pain.  I also got a walker (not something we want yet at our age), and it has helped me support my back while my tummy get's better.  I was worth every dime I paid for it.  I tried to find a used one before surgery, but they go as fast as they are posted, so when I am done with mine I know it will sell quickly, and I can recoup most of what I spent.  If you go that route, make sure you get the 4 wheel kind with the seat. I put things on it and take them from place to place in the house, and I can sit on it for a minute, or two if I get too tired.  The other ones are useless. Also, a recliner is a must, I feel.  If I am not up, I am in the recliner.  Most will agree, it was one of the more important things to have at home for recuperation.

Teacher64

Ann, stay strong.

Sibrhusky, I'm nine weeks out and still tight, but it is bearable. Walking helps.

Lemon, yeah for being drain free. It is a freedom few understand. Your "gut" may still be sore, but aren't you glad it's so smart?!

Trinity, I think we all have found that pain is generally managed well. Don't worry about dog ears. I guess mine is more "puppy" sized but will be taken care of in my stage 2. 

Rose, congrats on your date. I'm sure all will be smooth. Take care.

Today I had my first workout since DIEP. It felt good and my trainer said I came back better than I had after bmx. We are going to work on loosening up and gaining strength. He even let me use weights...ok, they were baby weights, but still weights.

lemon68

Welcome Trinity! I also had taken pain killers for migraines and my lower back so my tolerance was high. Let them know so they will be prepared to give you the proper dose. I had oral meds and the pump to push while in hospital for break though pain. I was never pain free but it was tolerable. Also ask for a Qball pump they put it in during the surgery and it drenches your tummy incision in a numbing agent. I apparently took mine out on night 2, but I have no memory of it. ( I think our trouble maker Wilbur may have done it!). I was taking Percocet 5's since home, today they changed it to Percocet 10s. I finally understand I don't need to be in pain. Ask for what you know works for you.

Dog ears.. I have one on my left side from the way I was cut. PS said today it may be some fluid but not to worry he will contour it later in Stage 2. If I wear my tummy binder it goes down a lot. I will be in compression for minimum 6 weeks. Breasts and tummy, for me I feel better with them on.

I have a double recliner and I am still sleeping sitting up in it. I do agree with Goldie it is a must have for comfort. I have a temperpedic bed and there's no way my tummy will allow me to get out of it. I am like a turtle tipped over on her shell! I sometimes go to our sectional and prop up lots of pillows, comfortable but too soft for me to get out of.

Congrats Rose on your date!! How exciting that you and Trinity will both be on the same day Good omen! I felt better knowing Goldie and Georgia were the same day as me. its also nice now to see how Goldie is doing and although we shouldn't compare I gauge myself with her.

Teacher I am so happy my gut is smart! Sometimes we just know I think God gives us so hints! Seems like you were having your surgery yesterday and your working out already! I am so impressed and hope I can follow in your footsteps.

aff

Trinity - I just came aboard here as well. I spent many days reading through all the posts from these amazing women and feel so much more prepared for my surgery which is on June 6.

goldie - you have provided so much wisdom and guidance - thank you. I am having rads after DIEP so I will keep everyone posted on the outcome. I haven't read too many women with this treatment plan so I hope to be able to answer some questions for others in the future.

jbdayton - my port is on the right side and up pretty high, my skin sparing mx will be on the left so they should be able to use it if someone knows how to access it. I have  an appointment with my BS tomorrow and plan to discuss. I hope my treatment center can access it the day before and leave the line in for my surgery.

tlbradyful

Lemon - that's exactly what it's like, a turtle! I can't get out of the bed easily either. LOVE THE RECLINER

Teacher64

I "turtled" (wonderful image, lemon) it today as I looked for a new mattress. Told DH that I cannot stand our saggy, too soft bed anymore. The girl in the store asked me if I needed assistance as I rolled over and swung my legs over to get up. Graceful it was not. Hope I provided some amusement for her!!

Teacher64

Cindyb, I didn't mean to give impression I'm working on my core because there is no way that's happening now. My trainer said that will come later. We started again on arms. Raising bar overhead pulls on the lats and that's as close to core work that I will be doing for a bit, along with squats while holding 5 lb weights and very, very modified push-ups. I did three reps of each and then he massaged a knot in my upper arm that has kept me from stretching well. I'm doing cardio every day (I rest on Sunday) because my heart needs it and working with my very cautious trainer every other day. He plans something different every session to work on different muscles. My goal is to eventually be back where I was pre-diagnosis.

optimi

I finally got a confirmation for my DIEP flap on June 11th, wohoo...looks like I am going to be sandwiched between aff and Rose/ Trinity It is very comforting to read all the posts on how well you ladies, who have walked this path before us, are recovering. Tomorrow is going to be my shopping day for maxi dresses, yoga pants, button down shirts and maybe T-shirts. We do have a recliner and I am getting the walker from my MIL. Furthermore, DH will get me a shower chair. Am I missing anything else essential I should have for post surgery stay at hospital and later at home? I think I saw one or two DIEP surgery lists in previous posts but I can't quite remember where I saw it.

Goldie and Lemon, I am so glad that you are recovering so well! I hope the tightness in abdominal area will soon be gone. I had asked my PS during my last visit whether she would be taking any muscle but she said that she is pretty sure it wouldn't be necessary.

Sibrhusky12, it sounds like you are doing great after the surgery. So happy to hear that you are recovering so well! You are lucky you were able to get all drains out within a week. I was told I would be going home with two.

Ann, I am so sorry you have to go though this. Just like you and Aff I am also going to be receiving rads after surgery. Not looking forward to it. Just like Goldie mentioned above, I am concerned about the effect rads have on heart and lungs!

Jerseymom, woohoo on your milestone!! Your family must have been so proud of you!

Teacher, I can't believe that you are working out so much already. You truly are an inspiration!

Aff, my PS told me that my port would be in the sterile area and thus they would not be able to use it for the surgery. They will however remove it during surgery which I am thankful for. It bothers me a lot.

I hope everybody continues to heal well and to my DIEP surgery sisters, Aff, Rosie and Trinity....we got this!! Soon enough we will be joining the happy and encouraging recovery threads

Dyvgrl

ladies,

Just a personal opinion I'd like to share. Everyone's journey is different and we all have to follow our gut feelings. Please do your research before agreeing to do rads. Just because doctors say you must, you really don't have to. It's your body. Do what YOU feel right. When I crunched the numbers and pushed for answers, I was basically looking at a potential 3% reduction in possible recurrence. The damage that is done however was certainly not worth it to me. It's so damaging to ther organs and parts of your body and for what? A maybe?? Here is an article on the studies that are being done that give us hope and prevention that doesn't kill the rest of our body. http://www.medicalnewstoday.com/articles/259480.p...

Like I said, we all have different journeys and always have to trust our gut. Just don't do it cuz the doc says so. Make sure it feels right for you. 

JerseyMomOf3

I would love some feedback on getting drains pulled. I am hoping, hard, to have these remaining 3 pulled today. How badly does having these pulled hurt? Should I take an additional pain med? Thanks in advance!

lahela

Jersey, it can hurt a bit, like getting a shot, but it passes really fast. I'm the biggest wimp on earth and I managed to have eight drains pulled without needing pain meds.

Teacher64

JerseyMom, having my drains pulled did not hurt at all. The first one after bmx I'd taken a pain pill because of the drive, but the drain didn't hurt. The ouch factor was elevated because of all the bumps due to road construction! The removal is a second of discomfort and gone but I can't watch. Being drain free is so liberating!

aff

Thanks for the feedback on the port everyone. I have an appointment with my BS today and my PS on Tuesday and will definitely get their feedback.

Huge step for me yesterday - 3 weeks post chemo and I went out for the first time without a bandana, scarf or hat...It was SOOOO liberating!

Optimi - thanks for the encouraging words, we definitely got this

Janet_M

Jersey & Lahela - I would argue that I'm the biggest wimp in the world! I was terrified of the idea of having my drains pulled - but it was painless.  In fact - it was one of those situations where my eyes were squeezed shut, and I was waiting for the worst, and the nurse told me that it was already done. 

AnnBR

Optimi, I was very concerned about rads affecting my heart and lungs, until my radiation oncologist assured me that Mayo will do everything possible to protect them. They use a technique (can't remember what they call it) where I will take a deep breath before I'm zapped and my heart will drop so less of it is exposed. They use a special machine that will show when my heart is 'below the line.' They determine that line from a CT scan which will be done next Tuesday when I will also be mapped. I can't explain as well as my RO did, but I was relieved to hear this. She also told us that the percent of long term effects on the heart and lungs are less than 1%, so those are great odds. I will have two areas that will need rads and one area will receive a higher dose. This is one of the reasons I decided to have the rads done at Mayo instead of closer to home. I won't have any regrets. Stage 2 won't be done for quite some time, but this is way more important. Taking it one step at a time.

For those of you who are making lists of what to take to the hospital, besides the clothing you mentioned, I took a notepad and pen, my iPad, lip balm, face wipes and my cell phone. I used a lanyard to hold my drains, but when I showered I used a long strip of gauze around my neck. That way I could toss it after my shower and my lanyard wouldn't get wet. There's other methods, but this one worked well for me.

Ann

The1toC

Ann I am so pleased they will be doing that technique for you. You will sail through this.

FYI I used a light cream called Miaderm on the radiated skin AFTER each daily treatment and showered before treatment to make sure it was off. I think it helped my fair freckled skin, it felt soothing anyway. It is calendula based and was created by RadOncs. I was able to get it from a nearby pharmacy without prescription. My RadOnc prefers Aquaphor which is good but greasy like vaseline and would have ruined my work clothes (I was working when had rads).

The1toC

Jersey my drains for the DIEP are really pain free for pulling. Dr pulled 4 and left 2 for me- i will pull the last one today. The part under my skin is exactly the same as the tube between the skin and the grenade but with some holes.

I am so looking forward to being drain free by 2pm!

The1toC

Tips for hospital: take a fold up hand fan to use if your face gets too hot. Consider a spin toothbrush and your favourite toothpaste

LiLi-RI

Hi Ladies:

I am so stressed about my upcoming surgery. All your helpful tips are so great! I am making list after list and cleaning out drawers, closets etc....The organizing actually helps with my stress levels. I am also self-employed so trying to get my business all sorted is also VERY stressful.

Ann - I used MyGirls boob cream after my radiation treatments. I purchased it on Amazon. It truly protected my breast - and the cream is light! After my final boosts, I used actual aloe vera from the plant, and I did not have any issues at all - except fatigue. You can do this!

Sending healing thoughts to all!

Lisa

tlbradyful

Doctors have a "calculator" that we do not have access to that calculates your risk reduction with specific treatments based on your exact situation. In my case, I went in with a percent in mind that the radiation must improve my risk of recurrence before I would consent to it. Unfortunately (or fortunately), radiation reduced my risk over 20% so now my risk of recurrence hangs around 10% according to the doctors. I do believe we should all know the anticipated reduction in risk of recurrence before we decide on treatment, especially radiation.

As for the heart/lung damage, they have ways to keep your organs out of the field. Most people do not have a problem. I had to hold my breath for each of the three angles they used for radiation. Just about 15-30 seconds at a time for three times per visit. My RO showed me all of the films and studies of how it moved my heart out of the field with varying degrees of inhaling. Very interesting. Don't be afraid if your doctors and you decide you require radiation. It is damaging, but my results from Dr. Massey's DIEP shows that it is totally fixable!

jmb5

It's been a busy week and I just got on here and found 10 messages from ladies who wanted to be added to the surgery list. It's all updated now. Sorry for the delay. Now I need to catch up on 5 pages of posts!!  What did I miss??

goldie4040

Drain pulling is the least of all the discomfort I have gone through with my experience with both my BMX and my DIEP. 

I had a bad night. My DH gave me the same combo of meds last night at bedtime, and for some reason I got really dizzy and nauseous.  I was semi conscious all night, and I was either hot, or cold.  At one point I thought maybe I had picked up a stomach virus (we have been out a couple of times), but I don't think so.  Still feeling weak, and tired.  Plus, I always get a bladder infection after catheter is pulled.  I forgot to ask for antibiotics in the hospital, but I got them to go home with, but I am still having symptoms.  I sent email to PS but I have not heard back yet.