DIEP 2013

Damiana & SheChirple- I called my PS yesterday about the fangs. I was told that because he tries to position the incision lower, I will most likely have them there as well. So, apparently the location of the incision is the reason. But, I'm glad for the low positioning, so I too will soldier through!

Sbelizabeth- HA! I love that. Please let us know how that prank turned out! Also, I have to share this with you re: tans. I had a PS appointment last week before going to the shore for a long weekend.  When I told him I was going, I stopped myself and exclaimed, "Oh Crap! I can't get tan or I'll have really weird headlights after my surgery!" To which we both giggled, and then he told me to please just enjoy myself as much as I could. I am thankful that I feel so comfortable with my PS. There is just something so refreshing about feeling like he "gets" me even in some small way-it makes me feel like because there is a connection he will take extra-good care of me.  I know dr's are trained to do this, but nevertheless, it feels good.

RobinY- My thoughts are with you...BEST WISHES!!!*~

New info, Per my call to the PS: Apparently I will be able to shower after 24 hours, as long as I am stable.  My PS's nurse said to get one of those mesh bra and panty washing bags, and a soft string or shoelace.  She said to string the shoelace through the bag, and then hang this on my neck and put the drains in it to shower. Has anyone else heard of/done this? Sounded like a good and cheap idea!

I am having a uni-mastectomy with immediate DIEP, and was told that I will just have a circle, and not the football shape. Either would have sufficed, as the natural looking and feeling end result was the goal.

...But, a question that I have had from the beginning is, since we do not KNOW if there is lymph node involvement, as the sentinel node biopsy will not take place UNTIL my mastectomy/DIEP surgery, how can we confidantly reconstruct? What if I will need radiation and/or chemo afterwards? 

I am consistently told that "most likely" it hasn't moved into the nodes, and my new surgeon is "very confidant". I had an MRI, but it was post-lumpectomy (one of my issues with my first surgeon who I have moved on from-he never ordered one prior to my lumpectomy surgery! I was angry at myself for a while after I got my second opinion, for not requesting an MRI myself, but in my defense, at the time, I wasn't thinking "CANCER"!), and fluid remained in my breast.  So, the one enlarged node I was told, was "most likely" just post-op fluids. I just can't really take solace in that, as when I went in for my lumpectomy I was told that my "Architectural Distortion" was "most likely" benign and to "just relax". HA! 

Isn't there a way to positively test lymph nodes prior to surgery? I was told that the only way to successfully do this is surgery. And, they try to minimize the amount of surgeries one has, so they do it at the same time. And, if there were a larger concern, they may be guiding me down a different path right now.  Has anyone else thought about this, or had similar questions?

Also, has anyone taken thank you cards/small tokens of appreciation in anticipation of nice nurses? I wished I had something to give my last nurse after my lumpectomy.  She really went above and beyond for me. And of course after I left on codeine, I didn't remember her name, so I just sent a general thank you card. Does anyone have any AWESOME NURSE stories? If so, please share!

DvyGrl- Thanks for that. Good advice.

Okay, here's what happened with me...

I felt a lump in my left side.  (This breast was flat from birth on, very small nipple. The right breast developed normally, and when I turned 18, I got a saline implant in the left side). Got a mammogram then ultrasound. This was standard procedure for me, having the implant. However, they kept stopping and pointing during the ultrasound saying, "hmm, theres something...well it's most likely scar tissue, but, hmm." So, then they sent me to my surgeon. He said, and I quote, "This is what we call architectural distortion.  It is most likely just scarring, but I won't be able to sleep at night if we leave it in." To which I replied, ok, so simple needle biopsy? To which HE replied, "No, this would be minor outpatient surgery." So, we went about the business of scheduling surgery. Keep in mind-I had been flat on the left. There was hardly any breast tissue in my left breast. So, I ASSUMED-oops- that this would be a very tiny incision. He said about an inch. And, no reconstruction oprions were ever discussed. Because again, I ASSUMED this would be such a small issue that it would heal in 2 weeks, and I would look like I had prior to surgery.

I did go home the same day. I waited for 5 days until I was given a phone call telling me he found a small spot of cancer.  After 5 days of waiting. And BY PHONE. But, I did want to know-I had been calling daily after day 2... So, I went back to work the next week. I was healing nicely, but still swollen. My next appointment was referred to as a "roundtable" with all of the doctors a cancer patient may need. This blew my mind. Chemo? Radiation? Its SMALL! Its stage 1!...anddddd, there was no "Table" involved. I came prepared with a binder and notepads, dressed for a meeting. Instead I was put in a gown and made to sit in it while each doctor came to visit me. But the Radiation oncologist was running late, so I cancelled him because I was convinced I didn't want to know about radiation one week after diagnoses of stage 1. Then, the 2nd oprinion in-hospital-network surgeon was ALSO late- and I had to give him my pathology report-he hadn't even reviewed my info! As I said before, I'm prepared. It was horrible. Then, they gave me an overflowing bag of pink cancer things, which that day, I wanted to go home and start a bonfire with.  After I calmed down, I appreciated the thoughtfullness. That NIGHT, I researched Lehigh, Penn etc-and decided to set up meetings with Dr. Chubng at Lehigh. I wanted second opinions all around and a new path read. I'm glad I did.

The first hospital read my sluides as having unclear margins, and stated that my cancer was arising out of DCIS. Lehigh found no DCIS, and clear margins. They were puzzled as to why an MRI hadnt been ordered. After seeing my MRI, I almost fainted. There was a large black spot, which was my implant. Then, an ALMOST EQUALLY large black spot in front of it. Which, is a hole where my lumpectomy had occured. There is just the side-boob area and nipple point area of tissue remaining. It was ALMOST a full lumpectomy-but not quite! I just can't understand what my surgeon did. And, if such a large area was going to be removed why no reconstruction info was even mentioned.

So, then swelling went down and now I am much smaller on the left. The mastectomy will take my surgeon under an hour she said! Then, my PS will remove the old implant and proceed with the diep. After years with the saline implant, which I had no "issues" with other than loss of feeling and it not matching the right side, I can finally feel more "natural". I have copies of every report and every imaging disc, and I have poured over them extensivly. I am not a surgeon, but I don't see any "odd" spots left in my breast.  So, I am hopeful that the node indicated was just swollen....

Phew that was a lot!

Sweetpickle - most PS recommend waiting until all incisions have closed and healed - usually about 6 - 8 weeks.  If you are having incision issues, the wait will be longer.

SBElizabeth - can't wait to hear the outcome of that date.  I hope he told her early on that he is a twin.

Shechirple - glad that you got some relief from the seroma, but do call your PS to see if you need more compression and packing.  Just to protect from a repeat or infection.

My DIL just texted that the prank went just fine until my son smiled and then she started cracking up.  Oh, well--it was great for a short time!

Poor kid; this is the same son who used to work the same place as me, and one day I sneaked out to his car an put a pair of XXXXL lacy panties in his glove compartment.  I mean, you could have put a rhinocerous in these drawers.  When he found them, he said, "MOM!  What if my girlfriend had found these?  I would have been in SO MUCH TROUBLE!"  

Typewriter, I sincerely hope everything works out for you as far as radiation after DIEP surgery. In my case the PS decided to put in a TE during UMX/SNB because the status of my nodes were not known. Nothing was seen on any of my scans, and none of the docs could feel any enlarged nodes. Turned out I had one positive node, and had to get rads. Went through rads with the TE, and had DIEP 6 weeks ago. Hoping and praying for negative nodes for you.

sbelizabeth, you are a fun, crazy bunch - LOL!

Have to run. Have three loaves of Nihahi's lovely bread in the oven, will be done in another 15 minutes, and my house smells just heavenly. It's almost lunch time, and the boys are hungry . . . LOL.

Nihahi, still here, just really busy with kids and trying to work out. I would love to do the workout with with. Yesterday I did week 2 day 2. Tonight I train with trainer and tomorrow will do day 2. My new shoes are wonderful and so comfortable. After I did my running yesterday I was able to do a mile on the elliptical, so not bad. Today I woke up with no pain on my shins or knees😄. My neighbor told me this morning that my face looks thinner, so maybe all this is working!

Sbelizabeth, I love the prank story!!

Robyn, hope you're doing ok. I know how terrified you must've felt this am. I felt the same way! But you will see that soon you'll feel like a whole new person, literally!!

About swimming, my ps told me I could swim in a pool after 3 weeks. Of course no lakes or the beach. I guess again it depends on the physician.

Hi ladies......well, Robin should be nearing the midway point, if not already in the home stretch.....hope all is well.....



Just poking my head in to say "hi" to all.......



SBElizabeth, I also tried on my old suit from last year.....and started crying.....other than the fact that the new girls are bigger, so I actually have cleavage, my suit looked great on me! Even the little roundness in my abdomen my PS wants to plicate wasn't so obvious that it would be the first thing you saw......I haven't even gone in for stage 2 and I. Am. Ecstatic!!!! Love, love, LOVE these gloobs! Now I just have to work up the courage to jump in the pool with the GKs!



Mammalou.....go to the wedding......in the Wheelchair! Like Janet said, decorate with flowers......I think they would rather you came at all, than stayed at home.



Nihahi....jealous you are running....trying to preserve my knees, so those days are done....but I am walking 10-13 miles/day......that count?



Liefie, glad you are having a wonderful time with your sons! Eat some of Nihahi's bread for me, okay? Believe it or not, BREAD is tougher for me to resist than CUBAN LUNCH! (Or TimTams, for that matter!)



SheChirple....let your PS know about the dam breaking......just to be safe.



Ladies....I cannot tell you how wonderful it is to have you all here......I am so thankful for all of you, and all the experience and wisdom (and I can't forget about the humor) that you ALL so willingly share.....we may not live near each other, but we are all sisters in this together, and that's a wonderful bond.....feeling very blessed to be a part of this (well....NOT the BC part, but THIS,) because it makes my burden seem lighter to know we are traveling this road, together.



(((Hugs)))



Namaste and God bless - Jackie

Liefie,

My PS told me no surgery for 4-6 mos after rads because the radiation is still in your system and will shrink and toughen the tissue he is trying to work with. Basically, you could destroy nice clean tissue then be left with nothing to work with. No rads after surgery either, so if you need rads, must be done prior, then wait til the tissue softens, do the flap, then life goes on! He is a meticulous perfectionist, it's why I love him so I trust him completely but it is odd how they all have their own ideas and no standards...

Dyvgirl, you're so right about these confusing protocols. Sometimes I wish the docs would read here - they would understand their patients' concerns/questions so much better, and learn lots - LOL! Each to his own, I guess. I had rads with TE in place, and we waited 10 months for skin and tissue to settle before DIEP. Originally I just wanted a saline implant, and be done. My PS told me straight up that if I wanted an implant, I would have to find another PS, because rads often destroy the good work, and she was not prepared to deal with that damage afterwards. Her recommendation was TE, then chemo and rads, wait for quite a few months, and then do DIEP. That's what I did, and I'm really glad I listened to her. Decisions, decisions - so grateful to be done.

ihw, I did get a second opinion, and liked both the surgeons equally, and they both pretty much had the same approach to my surgery.  I know the diep is the way to go, and I am almost definitely going to do it, unless something big comes up.  I think it's just fear of anesthesia, and pain.  I also am so close to feeling almost normal after my bmx, I hate to give up another 3 months till feeling completely good again.  I know I will be up and around fairly quickly, it's just feeling totally exhausted again I am not looking forward to.

I have read more nightmares about implants than about diep. As a matter of fact, in all the months I have been on this site I do not believe I can remember reading about a single complete surgery failure. That says a lot.   I think the only other surgery that seems to make a lot of women unhappy is the LAT flap.  Which is really a last resort surgery. 

Kuka, I am glad you find yourself in a good place with your injuries, and your exercise.  Can't wait for you tummy surgery to happen.

I love all the bathing suit stories.  I want to post one too. Unfortunately, by the time I am done with my recuperation the summer will be over, but maybe I will have a lingerie story to post?  Who knows?  I have a drying rack in my laundry room where I hang the delicate laundry.  I was diagnosed on March 4th, and had done a load of bras that day morning.  I was sure my biopsy was coming back fine. Today was the first day I was able to take them off that rack and put them away.  I told myself I will wear them again!!!!! 

Yay Kimdy! Happy for you! That is a very long time to wait! Good news:)

Kimdy, good for you for hanging in there - we will all be cheering you on, that's for sure!

Goldie, don't put those bras too far away. You'll be wearing them again before you know it! As for me, I am really struggling to get used to wearing a bra again. I've worn a bra my whole life. Ever since MX last February I've worn a bra only when absolutely necessary. Now I find it hot and constricting, and the Tamoxifen hot flushes don't help either. The moment I get home, I take the bra off. At home I go braless almost all the time. Don't think I'm ever going to wear them fulltime again.

Cherrie, have not heard of this, but big hugs to you and DD, and hoping for the best outcome.

Cherrie- I have had a swollen lymphnode before that felt like a scary lump and it was absolutly nothing at all. It went away after a couple of weeks. I am so glad that they think that is all it is.

Cherrie - I have a lymph node in my my healthy right breast that is "folded over on itself" and abnormally large. They watched it every six months (with mammogram) for years. Then a couple years ago when they started doing digital mammography they felt more confident that was what it was was and decided I could go to a yearly schedule. Then after bc dx my MRI said the same thing. There were times during chemo when I would get an enlarged lymph node that would be lumpy (and scary) but they always went away. I pray this is the case for your DD.



CONGRATS on getting rid of that drain, Damiana! I was surprised to not be smaller at first, too, but now six weeks out, I am a size down and falling. And even things I wore before surgery just look better without the belly! It'll come.

Sherry- so sorry...now I have officially become a pain in your ass lol! Do take it a bit easy, though! You don't want to go into surgery WITH pain already! And so happy you have come to a peaceful place....remember that feeling and call on it!