DIEP 2011

Snobird

I had a prophy on my right side and my surgeon did not see it as necessary to do sentinel node on that side as there was no cancer indication. She felt the lymphodema risk far outweighed the advantage of doing it and entirely unnecessary. On the cancer side she took seven nodes because I had already had a SNB the first time with my lumpectomy. It is your decision you know.

bdavis

I had two nodes taken during lumpectomy and tomorrow is my mastectomy... I have pre op today... I told them that no more nodes unless they found something (new cancer) while in there... So no nodes here!

IowaSue45

Am thinking of posting pic. of my ab. incision and my new breasts, anyone object. I wish I would have taken earlier pics.

Suz39

Hi All,

I am 4 weeks post Uni MX and immediate DIEP reconstruction.  I haven't been on for a while, and am just catching up.  My diagnosis changed from DCIS Stage 2 to IDC Stage IIb, Grade 3.  Apparently, there was another tumor hiding behind the DCIS, that none of the scanning (mammogram, ultrasound, vacuum core biopsy and MRI caught)  I should mention that I have very small breasts, not even an A cup, so I was pretty shocked to learn about this.  I am now all signed up for chemo, and hormone therapy, and possibly radiation (they haven't decided yet).  I thought the surgery would be the end of my journey, but it is just the beginning.  It has been a lifesaver to scan through the discussion groups and see that many of the women with the same diagnosis as me, are survivors, and are moving on in their lives.

As for my reconstruction, it has gone very well.  It is hard the first few days in the hospital, and at home, but 4 weeks out, and I feel about 90% back to normal.  Not to belabor this, but the constipation was a big deal for me.  I had two BMs in the hospital, so I thought I was home free, but when I got home, and was still taking percocet, I plugged up again.  That was a nasty 24 hours.  Also, since I had very little consultation with either of my surgeons in advance of my surgery, I will tell you what I wasn't expecting, that surprised me after the surgery.  The incision was higher than they told me it would be.  They told me it would be where my c-section scar was, but it is about 2 inches higher.  Also, my belly button was moved.  I am relatively thin, so I figured they wouldn't have to move my belly button, but I was wrong.  I'm pretty sure that my bikini wearing days are over - probably not a bad thing, all things considered.  Also, because everything is stretched as tight as a drum, my pubic hair area has stretched upwards too.  I'm hoping it settles downwards with time, otherwise I might have to get laser hair removal, because I'm not happy with the appearance of that.

Sentinal node removal was another surprise for me.  Prior to the surgery, my surgeon confirmed with me that if she could not determine the sentinal node, she would take no nodes.  However, she took 3.  During my pathology, she explained that sentinal node does not mean 1, it means several... however, I did have isolated tumors in one of them, so maybe it was a good thing.

Follow up care.  For those of you who are having immediate recon, it might be worthwhile for you to set up an appointment with a physiotherapist for 3 weeks post surgery.  I didn't call until last week, and they have a 1 month waiting list at the location nearest to me.  I have been stretching for about 1 week now, and it makes a huge difference in my mobility.

Good luck to everybody!  Let me know if you have any questions :-) 

ladym13

iowasue- Bring it on...I'd LOVE to see pics

Sherryc

Sohard-I think better yet mark in red marker where your nodes are they they are off limits.  DO NOT TAKE.

I personally am hoping for larger breast.  I do not even fill out an A cup, I am really hoping they can make me a full B when the time comes.

Sherryc

Iowa sue would love to see the pics as well.  would not offend me

Suz39 you say you are thin and had small boobs.  How big did they end up making your noobs?

RetiredLibby

Iowasue, I would also love to see the pix and would in no way be offended.

Suz39, I am so sorry to hear about the unwelcome surprise.  My breasts are DD and while there is no reason to believe it is not pure DCIS, there is a lot of territory in there for bad stuff to hide.

I'm asking for C cups with my recon.

L

Suz39

Hi Sherryc,

I also didn't fill an A cup, and I have to admit, that I am not really in-the-know when it comes to breast sizes.  The PS told me that she might be able to make a small B out of my belly.  I only had the procedure on my left breast, and she said she used all the tissue she could.  It is definitely larger than my right boob, so I would guess that it is either an A or small B.  It does have good projection, and shape.  It has shrunk a lot since the initial surgery, because of the swelling, and I am starting to see dents in it, but I am very happy with its appearance in clothing.  It is very proportional to my body.  My normal weight is 120 lbs, and I am 5'7".  I ate like crazy to try to gain weight for the surgery, and I gained 10 lbs, over 3 months.  I'm back down to 125 now, with normal eating and no exercise.

HappyLibby, I was so shocked when I found out about the IDC hiding, but the doctor told me that it happens, and I have read or heard of so many stories of the same situation.  I'm still wondering whether waiting those 3 months for DIEP was a really bad idea.  Maybe if I had been more aggressive, it would have been removed before it got so big.

Suz 

grdnslve

suz39--personally i don't think 3 months is going to make a difference.  don't beat yourself up.  these tumors grow for years before they are discovered.  pretty much the same thing happened to me.  original dx showed two small areas, but during mx a 6cm mass was discovered between them that did not show up on any of the scans.  so instead of just rads, it was chemo & rads.  you can do this.  just take care of you.

RetiredLibby

Suz39, I agree with grdnslve ... don't beat yourself up.  It was there for some time, and I don't think 3 months would've made that much difference.  Since mine is a recurrence of DCIS, I am prepared for surprises.  I was dx on June 24 (day I received path report); BMX is on August 23.  I moved it back 3 weeks from the original August 2 date so that I could have my wedding anniversary, birthday and a holiday with friends.  We have to live our lives, too. 

Hugs to you, Suz ... you can do this.  People who are survivors take the next step.  You are taking the next step.

L

Suz39

Thanks grdnslve!

NotAfraid

Suz39 

I had numerous US, MRI & mamograms in the 6 months before by surgery and they NEVER saw the third areas of cancer that was IDS.  I fought for months to get DIEP surgery and luckily my nodes were clear when they did the path and I don't have to have chemo or rads.  THe only sure thing is pathology which is why I chose to have BMX.  They can't always tell.  Don't blame yourself or the timing at all.  

Suz39

Hi Ladies,

Thanks for your support  I guess this happens frequently.  Maybe I should have gone for BMX.  One step at a time.  At the time, I too was happy for the delay because I had been planning my 40th birthday celebration in NYC with friends for a year, and didn't want to cancel it.  Also had anniversary and mother's day all in there. 

Sherryc

Suz I am 5'3" and normally weigh 111lbs so I am having to gain weight.  I am not a candidate for implants so PS wants to do both breast and reconstruct and he said he needs me to produce fat so he will have enough for both boobs.  He does not want to use an implant on my good breast to even things out. He said minimum weight gain will be 15 lbs before he will do the surgery.  So I am on a quest to gain weight.  I have gained 3 lbs so far. Luckly my weight gain is in my tummy so that will be perfect for the DIEP.  Don't beat yourself up over any of this.  They did not even think I had cancer did an MRI just to rule it out and what a suprise I got.  Have been doing mammo's for 14 years because of B9 breast disease.  Never showed on mammo's all those years.

Ondagrow

Please do Iowa... Do you have a before and after....

SAMayoFL

Hey Sue, I want to see too!!  Hurry, I am scheduled for two weeks from today.  Two weeks from right now I will finally be on the other side!

Suz, I am sorry they found more cancer but am glad they found it and can treat it.  I too am a stage 2b.  I had 4 rounds of AC every other week and 12 weekly treatments of Taxotere.  You will get through it.  I only called in sick twice from work in the five months it took for me to finish chemo.  

Sohard, the visualization of the doctor disrobing you on the morning of surgery to find a big red piece of construction paper tied to your neck cracked me up.  I don't know about you but my worst fear is them finding cancer again when they remove my second breast.  Between having ILC and being BRCA+ the odds of recurrence are not in my favor.  I hope for both of us that we are cancer free, node clear and breeze right through this surgery.

Susan

misszed

Susan FL- Wow time flies, only 2 weeks left for you...let the countdown begin. You will do great!

Rachel (Sohard) - check to see if there's anything posted as to your rights as a patient to refuse SNB...l know you will get your answers girl. Stay strong!!

 I was off for a while, just getting caught up.  I almost 6 weeks post op and back to work, the kids are back to driving me insane what with the heat and all lol. My belly swelling has gone down considerably and the Noob is getting softer.  I need to start walking more to help bring the rest of the belly down, the heat is too much for me...maybe time to join a gym **SIGH ** My scars are healing really well, l use Palmers Vit E oil daily to massage for 5 minutes, my belly scar is very low.

(TMI ALERT) Im happy to report that l did the nasty a few days ago and it was slightly uncomfortable but great all the same, DH has been way patient and l suprised him, it was a nice suprise after 6 weeks!!

Best wishes to you all and goodnight!

goldlining

Hi ladies -- I have a dumb recliner question to those on the other side. I do not own a recliner, and after the uni mx, I found the bed difficult to sleep in (too narrow, and kept sliding down on the pillows) so after a week, I smartened up and slept on the sofa using the high arms at the sides as the backrest to stay upright. DIEP is a whole nother thing and everyone praises recliners. I was passing the chair department on the way to something today and saw one that would not be an eyesore in my room, but it is a "pushback" model. It was heavenly to lie in actually, but how do I get out of it once it is reclined? Can you get enough force pulling in your legs in to collapse the footrest? Do you need a lever model? Can you comfortably push/pull the lever? I'm sure most of you just used the recliner you had, but what kind isn't going to be excruciating to get in and out of?

alexanjb

I already had a lever model recliner but I didn't use it that much. It wasn't excruciating I just preferred the bed.   I used lots of pillows including a wedge in the bed, when I need to get up I grasped the bedclothes and pulled myself up.  You will be pleasantly surprised on how well your pain is controlled with the meds.

RetiredLibby

I have an adjustable bed foundation (like a Craftmatic but not that brand name). I'm hoping that will be good enough. I have asthma, so when I have a respiratory infection, I have to sleep with the head raised. The knees and the feet also go up and down if you need them to. The only thing will be having to roll sideways-ish to get out of bed, but DH will be there. What do the experienced women think? Will the adjustable bed be good enough?



L

Sherryc

goldlining-I have the recliner like you are talking about and I can get it in an upright position just using my legs.

mscal02

Hi Ladies:I used a chaise lounge chair, the one that is made like a beach chair for a day or two, then I moved to the bed with lots of pillows. I think the wedge pillow beneath my knees, probably kept me from sliding too much. My bed is high off the floor, so I put a step stool there to climb in and out of bed. After I was told to sit in the recliner at the hospital, I slept in it the whole time. They even rolled me to my room in it when it was time to leave ICU.

c8ndygr1

I slept for two weeks in my souped-up, comfy-fied recliner 'nest'. My recliner has a side lever and I had no trouble using my arm and leg muscles getting in and out of it. I'd still be sleeping there but I didn't want my DH to feel I'd forever abandoned him and our bed.

One month ago today I was on the operating table getting my BMX with DIEP and here I am now roughly 90% back to normal. Still have some lingering fatigue, muscle stiffness, and two wounds that are just about healed. 21 Club girls, we did it! Stage 2, here we come.

sunflowerE152

I too have slept in my recliner.  I am 3.5 wks out and the only problem I am having is a pain in my groin area, below the incision where the abdominal drain was.  It has always hurt when I moved wrong, but now it is a constant ache.  Anyone have a similar pain - of course nothing is visable on the outside.

 I guess my other question is - when was everyone "pain free"?  It is not bad enough for me to take pain meds, but it is a constant ache. 

IowaSue45

Wow didn't realize the incision was so crooked

IowaSue45

Here they are, the one that is up higher is the radiated side. I will delete this in 2 days.

momtomygirls

thanks for sharing Sue!

My scar on my noob is totally different. 

you're belly button looks great.  I don't like my new one!

Sherryc

Thanks for sharig Sue

c8ndygr1

Wow, Sue - your noobs have some nice shape and volume. I doubt I'll get that much even after Stage 2. Nice. My belly incision is crooked too. My navel is still healing but it looks like it's going to be small. No room for that belly jewel (just kidding). Thanks for sharing.