DIEP 2013

damiana9

Mammalou- sorry about your ab incision. Hope it heals up quickly for you! I am wearing compression underwear for now also- but it's to help my hematoma.



I am feeling really frustrated. I can still not really get myself out of bed- especially since I ripped those internal stitches or whatever happened. It causes a lot of pain when I try things like getting out of bed- feels like I am ripping more stuff I am 4 weeks out and really feel like I should be better than this. Though, I bet if I didnt have the ripped stitches/hematoma I probably would be doing a lot better. My hematoma is the size of a dollar bill and as thick as a big hamburger And my boob blister doesn't know what to do. I try to keep it covered because it oozes and gets all over whatever I wear. Then I cover it and end up gettinng a heat rash from keeping it covered. Ahhhhhh! It all makes me feel like I will go insane.

The good news today is that I am getting my very first haircut since I lost my hair last September! yeah!

sbelizabeth

Thanks, girls, I'm glad to know that.  I have some inner flabby stuff on my thighs, and would be glad to have it moved to the breasts.  Nihahi, it's more than just symmetry work.  There are some fat necrosis lumps to remove, the right side to lift WAY up, and the other side to straighten out--it sort of hangs diagonally. 

Typewriter, I had a unilateral mx in April 2012, with no TE placed.  I'd had a lumpectomy the previous fall, and the nodes were found to be positive.  The plan for me was for 6 rounds of chemo, followed by a mx, followed by radiation, followed by at least 6 months of recovery from radiation, followed by DIEP.  This worked fine for me.  I just learned to live with a breast form for a few months, and when the DIEP was performed, the PS was able to cut away a lot of the radiation-damaged tissue and bring new, fresh tissue and blood supply to the "cooked" areas.  It would not be my choice to radiate a new DIEP breast. 

No baby yet.  She had a few contractions yesterday, but you know how that goes! 

Faith, after my mx and before the DIEP, there was a SPOT on my chest, above the scar, that must have been directly over a nerve that used to supply my nipple.  If I touched the SPOT (or my husby did...=)...) it was exactly like I was touching my nipple.  Alas, it's beneath the flap now.  We'll just have to pretend.

It's Friday!  And get this...I'm going out in the field to investigate a communicable disease outbreak, and for today's shoes, I'm wearing my old black Air Force low quarters.  They're thirty years old and make me look like Mary Poppins.  I love them.

Typewriterjenny

Marty-Wow! That's soon! I guess it's more of an issue if you develop LE too. I'm thinking of a vacation in Feb., so I should be fine by then I'm thinking. I was mainly concerned about clotting after the DIEP. That would be horrible-to have it take, then something happens all because I decide to take a trip. Thanks for the info!

liefie

Damiana, yayyy on that first haircut - feels good, eh? So sorry to hear about all your other issues recovering from DIEP. Not pleasant, but just take it slowly, and be very good to yourself. THIS TOO SHALL PASS! Eyes on the prize . . .

Nihahi, thanks! Having children is like a life sentence, albeit a good one most of the time - LOL!

Typewriterjenny

Liefie & SBE- Thanks so much! I did go back and read that thread. 

I guess I just wish they could have tested the nodes with my original lumpectomy, which removed almost all of my breast tissue! As I said, I have barely any breast tissue in that breast-it's mostly saline implant.

My new surgeon says she doesn't want to subject me to many surgeries, which is why the mx and lymph is done at the same time, and why my PS recommended immediate recon. My surgeon said no need for a rad onc which I thought a bit peculiar. I  met with one at the first hospital. He suggested that I was an oncotype dx candidate. All of this points to a positive outlook in my mind, but the fact remains that there are a lot of women who thought the same, only to be told their lymph test came back positive.

I think a discussion with my surgeon is in order.

Damiana- You've got this!!!! It sounds like just a minor setback, and that there is a very positive bright and shining "you" inside there who knows this. Go with that-have a great time getting your hair done, and let that light shine!

liefie

Dear Typewriter, I am one of those women who were told that the chances were remote of me having a positive node, and there it was. You are well within your rights to state your concerns to your surgeon, and see a rad onc if you want to. Plastic surgeons are not trained in rads, and for your peace of mind it would probably be wise to get a rad onc's input on this. You are the patient, it is your body, and it is your decision to make. Best wishes to you! Let us know what happens, eh?

Janet_M

Damiana - Congratulations on your first haircut! Doesn't it feel great? Were you able to have a regular shampoo?



I went to the salon this morning - not my first since treatment, so no big deal, but it was my first since DIEP. When I got there I realised I couldn't have a regular shampoo, cus I couldn't recline and lean my head back into the basin. So- I had to kneel on the chair, and lean forward to get my hair washed. Not very elegant, but sometimes vanity wins, and my sparkly roots were getting on my nerves.



Typewriter jenny - I was under the impression that they always tested nodes with a lumpectomy. Is that not the case? Its so hard getting informed and trying to get the facts straight - and even harder getting consistent answers. Hope you clear things up with your new surgeon.



By the way, I'll be flying on Monday, 5 1/2 weeks post-op. A three hour flight, and my surgeon isn't concerned.



Janet

Gotcha13

Penn and Dr. Wu IS fantastic and the rest of the team too..I had Fisher and Tanyi do their thing on me before Wu created her masterpiece. i'm 9 days post op and I feel better than expected too pain is manageable, my right breast (where the cancer was) is still holding alot of fluid and I was told yesterday by a nurse that sometimes it'll open up like a flood gate and to not be afraid at the horror i may wake up to...lol. I had to laugh. I went home with 4 drains, i'm down to 3. They're annoying but it's all good.

Every time a new nurse would come in to check the flaps she would say " OH ... This is Dr. wu isn't it !?" Everybody loved them.

My belly button though is sore, i'm doing what they've told me, the nurse said yesterday to change my soap to Lever or Dial so I did and I'll see what happens. It doesn't look horrible but the edges are starting to get sensitive and I'm trying to avoid infection (obviously) any tips on the navel?



I hope all here are well, I'm gonna go take a nap



I want to thank all who replied and again say this site is amazing! Thank you nihahi for adding me.

mammalou

Gottcha... re the belly button.. mine is very sensitive too and full of guck.  They told me yesterday to put a wet piece of guaze in there, cover it with a dry one for awhile, and when I take it out it should start cleaning it up a little bit.

My abdomen floodgates opened up last night and I woke up to soaked pads, compression garment and dripping down my leg.  I'm actually happy to get the fluid out of me.  I had the same thing with breast after lumpectomy and it went on for months.

Typewriterjenny

Ok, so I spoke to my surgeon-Dr. Chung's nurse. She is having her call me back to discuss further.  What she told me was since I am having a mastectomy, it means that the breast itself would not be radiated if it was found that the lymph nodes were positive. She said that if they were, it would most likely be axillary radiation and that it would be very localized. She advised me to discuss it further with Dr. Chung, and also to call my PS. She said the reason to call him was that he and Dr. Chung work closely together, and would have discussed my case several times by now, and that she doesn't believe that he would agree to proceed if he thought that if I needed RADS it would compromise his work. As soon as I hear back from Dr's Chung and Subbio, I'll post!

As far as my lumpectomy goes, that's a horse of a different color. After my  mammogram and ultrasound, I was told I had "architectural distortion", which was assumed to just be scar tissue or a cystic mass that could have arisen from my implant surgery in '98. I didn't fit any profile for anything more serious. So, I went to the surgeon.

Our conversation went like this;

ME-"Okay, so what do you suggest we do next?"

DR-" We can leave it alone, or we can excise the mass. But I won't be able to sleep at night if we don't excise."

ME-"Can't we just biopsy?" 

DR-"Due to the positioning, location and size, no. It wouldn't be beneficial unless we remove it."

ME-"Okay then we have to do it."

My surgeon mentioned not sleeping at night. How could IIII sleep at night letting it go????  I was trusting the professional. I later came to find out I would be getting a wire-guided localization, and it wasn't until after that painful experience that my surgery was referred to as a lumpectomy by the nurses who helped with the localization the morning of my surgery! I had thought it was a small area that would be excised. No one said lumpectomy before. Looking back, I didn't ask enough questions. I should have gotten a second opinion before any of this began. But, I didn't. I had this surgeon before and had good results and I was trusting him.

So after I awoke, he said everything went well, and (My dad was home for this from Singapore)-assured my dad that he could go back, and all would be well.  It wasn't. I wish he never would have said that to my dad. Anyway, after waiting for a week with no results, I got hostile on the phone with my surgeon's nurse. I was told that there were other patients awaiting reults with more serious cases, and I'd have to wait. That eased my mind a bit.  No news is good news right? WRONG. Later that day my surgeon called me to tell me they found cancer. WHAAAAT!????

I cried that day. The next day, I started my intensive research. I went to target and bought brand new folders and a funky binder. I researched a lot, and scheduled second opinions. Then I had the typical next step for Reading Hospital- what they refer to as a "roundtable", where you meet with the Med Onc, Rad Onc, another surgeon, and a PS. That was an absolute nightmare. Rad Onc over an hr behind schedule so I cancelled him, other surgeon didnt show until I was walking out the door and I had to hand him my pathology, and WHERE WAS THE ROUND TABLE? I was placed in a room in a gown. I came with binder and briefcase ready for a clothed discussion of my case. Later I found out the doctors do that before meeting me. But oops-in my case, the surgeons weren't there. But they proceeded with bringing me- a 32 year old scared newly diagnosed cancer patient, to sit naked with sheet in a room for hours, then 2 of them don't show. I'm sorry, but you reschedule your patient if you can't be there. That was very unprofessional and I fled to Lehigh Valley. Possibly it was the responsibility of clerical staff who slipped up, but I don't care. It was pretty bad.

Met with Dr. Chung, who asked me why they did a lumpectomy. I explained the story and she seemed upset by it. She showed me-which none of my other doctors had done-how they left maybe 2-3 inches of tissue under my nipple. I had a big hole in front of my implant.  I only hadn't noticed it on myself yet because I was still swollen from surgery. To further complicate, they hadn't done an MRI. So Dr. Chung ordered one, but said it may not be as acurate as she would like because of the surgical fluid, but that she would be able to see what she needed. And, I insisted on a second path read.

Reading Hospital path said unclear anterior margins, and that my IDC arose in DCIS. Lehigh said clear margins, no DCIS. Lehigh's take was, if I was going to have a lumpectomy, an MRI shouldve been ordered first, and lymph nodes sampled while I was under. But that wasn't done.  So now, they'll be tested at the time of mastectomy. Grrrrrrrr.........

I could have gone the radiation route to avoid surgery, but I'm dealing with a smaller breast with an old saline implant. I'd rather take the damn thing off, have the possibility of no radiation, and make it as safe as possible.  Plus, DIEP wasn't offered to me in '98. So even though the saline implant helped me a lot with the psychological issues of the cosmetic imbalance, it was never "right". I was still self conscious-when running, the right breast would bounce and the left was still. Anything with a high neck showed the left height vs the right, and though I was repeatedly told that it was hard to notice, I noticed, and to me that was most important.

Gotcha- If I wouldn't have felt comfortable at Lehigh, I may be at UPenn, but we lost a dear friend to a very invasive cancer there a few years back, and let me just say, I didn't want to revisit the memory of those experiences if I didn't have to. I'm glad you are having such a positive experience there!!

Janet- I actually bought dry shampoo for after surgery! Haven't used it yet, but I may try it out one day just to see what it's like.  It wasn't expensive. I know it won't feel as good without water, but it may be just enough to get me through if I can't get wet!

liefie

Typewriter, what a tough road you have travelled with these surgeons who did not seem to care much -  Oh my goodness! I hope you can make an informed decision so that this time you will get the outcome that YOU want. I have to run, going away for the weekend, lots to do, and here I am still posting, but I quickly wanted to respond, because from the get-go I was worried about this DIEP before rads. All the best to you, and I will catch up later.

Typewriterjenny

Thanks Liefie-have a GREAT weekend!!!!

goldie4040

Janet, the next time you are at the salon try putting the back of your feet up on the chair.  I have heard that helps a lot of people.  

Damiana, hang in there girl.  You are being forced to rest, which is what you need to do.  It will all work out fine.

typewriter, Leihigh is supposed to be one of the best places to go in PA, right?  Do you feel comfortable with the way they are handling everything now? If you have DCIS with clear margin, then there will be no rads.  My doc was able to tell by looking, but couldn't promise I was clear till biopsy was back.  

What the heck is going on?  My son is making me crazy today too, and I just want to slap him one.  I have other REALLY important things to worry about.

Went for another laser facial today with my two bff's, and it was fun. I started these facials one week before my dx, and you are supposed to have them monthly. The difference in my skin is noticable.  Less lines, better texture, bags under eyes much better, neck a little tighter, and this is while I have had a bmx, and been under a lot of stress.  One of my friends has had a dramatic difference in her skin.  Her dental hygenist even said something to her the other day, and our family doc (we both use same guy) walked in, did a double take, and said she looked very refreshed...lol.  Okay, so these facials do not hurt, you are minorly pink for about an hour, and then you just start looking better.  It's no facelift, but it sure helps lift the spirits when other s..t is going wrong. I know this isn't a beauty forum, and I wouldn't have started these while I had BC except I had paid in advance.  I think they are probably best for women in their 40's who are just starting to show some age, and want to stop the clock a bit.  Somebody my age, it just makes you look a little fresher. But, for you gals that are at the end of your battle, and want to feel a little bit better, I would try one to see if you like it. Non-invasive, no downtime.  I swear. 

Typewriterjenny

Inside the nucleus of the "architectural distortion" was .7cm spot of IDC. The path report from Reading (pronounced redding) stated that the margins were not clear, and that it was "arising out of DCIS", meaning they got a .7cm spot out, but some may have been left in there, and, there was pre-cancer in there ta-boot! Lehigh's report found clear margins-still saw the .7CM IDC, but NO surrounding DCIS. I know how subjective this can be, but it's so frustrating.

MRI showed 1 mildly enlarged node, but it was post-op when I was still fluid-filled and sore. All other visible nodes looked fine. So, there is a possible concern I guess.

Lehigh is very good from all that I've researched. They have a much different approach than Reading did. I wasn't opposed to heading to Philly. It's only 1 1/2 hrs from me.  But I felt that Lehigh was just as good from my research. I didn't have a rapidly metastasising or er/pr- type of cancer...but I'm told I'm an "odd case" consistently. BRCA neg, 32 when diagnosed, excellent BP/HR/Chol/Bloodwork, a bit overweight but I belong to a CSA and eat pretty healthy-I LOVE my veggies! Apparently most young women who aare diagnosed have a faster growing cancer, or the BRCA gene mutation.

Anonymous

Jenny - your story is remarkable. I am consistently amazed that the ca was found. Is there a family history of bc, or ca of any (or many) types? I was seriously ill after birth of 2nd son (for weeks) and in the course of trying to dx me they sent me for colonoscopy. Which turned up nothing to dx my condition, but did find and remove a cancerous colon polyp. At 33 y.o. it was a huge shock. Fortunately, removing it was the only tx I needed. But I wouldn't have had a routine colonoscopy until age 50.....who knows how bad it would have been 17 years later. I wish you didn't have ca at all....but am so happy that if you had to have it it appears that it was caught early. Prayers for a negative result!

Gotcha13

Typewriterjenny I feel for you ! It makes my last few months feel like a breeze compared I'm sending you positive healing thoughts and energy right now. I know you'll make it through somehow just stay vigilant as it seems you have. When i was dx I was expecting it because of my fam history and I was brca+ but I turned it into a research project just like you ( bought the funky binder and folders and a cool pen) and read until my head hurt. There is so much info out there its overwhelming.

Can I throw two cents in, only because this was my first thought at diagnosis...i just went all in because i wanted it out of me and over...Could you just have them take them both and immediate diep recon ? You'll have a harder recovery but then you may think less about it's return? And you'll have two tatas looking the same? Just sayin.



Thanks for the tip and I really hope everything starts moving in the right direction for you

Anonymous

Dvygrl - how are you today? Thinking of you a lot.

Gotcha13

This can get confusing on the mobile version here sometimes. I thank u mammalou for the belly button tip. When was your surgery? Because i'll be sleeping on plastic until the gates open ! Lol. I want the fluid out too asap. Its still pretty stiff under my arm so I guess it'll be a while. How about this burning feeling in my cleavage area, it itches too and it's much like the burning I had on my shoulderblades after my node biopsy. I put a warm compress on it, gonna try cool compress next.

Typewriterjenny

Bailey- No family history of bc, but my moms many sisters have fibroids and have had benign cysts. I am glad that they found that polyp!! I truly believe things happen for a reason. My family and friend Jeff, who is a cancer researcher in Seattle, feel it may not even be cancer. They seem to feel that it just seems so unlikely. Apparently you can't always definitively tell, but there are certain abnormalities that point to it being cancer, and we of course want to err on the side of caution. I can't entertain that possibility. So, I'm sticking with Lehighs path. I'd love to talk to the pathologists. I still may try to figure out how...



Gotcha- I have considered it. However given the facts, no family history etc, and my right breast and ovaries are in good shape- they've been scrutinized, I feel that I'd like to keep it. I really enjoy the sensation I have on that side, and lost it on the left side a long time ago. I don't want to lose it on the right side unnecessarily. Also, I don't have children, and am praying that I may still be able to have one of my own. Breast feeding would still be possible I'm told at this point on the right side. if you're doing the math, after tamoxifen id be 38, but my folicles are healthy, and I'm taking prenatal vitamins to keep them that way. also, I've read about people going off of tamoxifen to get pregnant. not that i want to do that, but apparently its an option as long as a close eye is kept. Yes, I've been to the reproductive specialist as well. (Don't get me started on how i feel the reproductive specialist industry preys on women at their most vulnerable time. I've never been followed up on so much in my life about anything, and this was to harvest my eggs at a total cost of 25k!!!!) My ps feels he can match the right pretty well. I'm a 38c/d. I had that discussion with my surgeon after reviewing the mri and ultrasound with her, and she feels even though I developed cancer in the left side, I'm not at much higher risk at all for developing it on the right side especially after having to take tamoxifen. If I had been brca+, different story!

Anonymous

Jenny - wow. Might not even be ca? Your head must spin with all this info. I think you are doing great. Information is power (or good info is anyway). I also have no family hx, BRCA neg, am (fairly) young and otherwise healthy. After thorough research I made a decision for a single mx for many of the same reasons you did, plus some others. It was a difficult decision....but I still think it was the right one for me.

faith729

Ladies does anyone know what causes necrosis? And if there are any ways to prevent it ? I had some after my initial DIEP surgery and he removed most of it during stage ll but I think I feel that same spot getting harder again. ?.

sbelizabeth

Faith, fat necrosis in the DIEP flap is a resut of less than great blood supply to that area of the flap.  I don't know that there's anything we, as patients, can do to prevent it.  I asked my PS last time if I should massage the hard spots I have now and he said don't bother, it won't help.  I think they're getting a bit smaller since my DIEP in April, but not much.  They'll be removed during Stage II, hopefully to STAY gone.

sbelizabeth

Hey, Typewriter...my brother, who, next to my husby, is my BFF, lives in Berks County.  He and his partner are remodeling a 1800's farmhouse near Fleetwood.  I love it out there--I just wish it wasn't a continent away from California!

Dvygrl, sending healing and restful thoughts your way.

Boring shoes today.  Interesting day, shoes just ho-hum.

Dyvgrl

Hi ladies. Hanging in. Stayed home today from work. Bone pain and nausea keeping me down. Took Valium, slept for a few hours, ate a bagel, took Compazine. Was gonna go for the Zofran but on the box it says "may cause headaches" I decided to skip it. Have had a migraine since treatment but that part is better. Need some food in me to keep the Ibuprofen down for the bone pain. That stuff kills my gut without food. Anyone have any ideas on how to stay on top of that? My hips and legs are really hurting. I have been taking Claritin but it doesn't seem to be helping much. I just can't imagine doing this 15 more times. And the doc says the Taxol is cumulative. Ugh!!

Anonymous

Ok...a little Friday night fun for those who have already had DIEP...stand up....close your eyes....think about your belly button...concentrate....think hard....feeeeeel where it is...keep your eyes closed....and touch it...hold your finger there and now look at your finger...did you hit where it is or where it WAS??? (Or the skin where it was anyway!) Lol....I hit where it WAS every time. (and I am not EVEN drinking) brain body connection.....what a concept.

Anonymous

Hey Dvygrl...glad to "see" you here. I was able to alternate compazine and ativan and avoid the Zofran (which my body doesn't like……but I know several pts who SWEAR by it). I learned that, for me, I had to take them as soon as they were due (every four or six hours, or whatever it was) for the four days afterward. My "bad" days were the 3rd and 4th after chemo. I also took prilosec once a day the whole time....lots of tums.



So they are starting with taxol or something else then taxol?..how often are your treatments? My "type" of bc is different than yours, so my chemo drugs are likely different than yours, and side effects can be different. If you share what you are on and how often it is likely somebody else has had the same and can share wisdom.



You and I are similar in stage, though. I was stage IIIB, grade 3 with very large tumors. I am completely cancer free now. I had chemo first (before mx) because tumors in breast and nodes were so large and wicked-fast growing. That had one advantage...I could feel the chemo working. The tumors were bullies and backed right down once faced with chemo's fists! By the time I had mx I was NED....not a trace of ca in the breast tissue or nodes....which made me confident it was no place else in my body either. It is hard, Dvygrl. Really hard. But I can tell you, two years out, I am glad I did it. I know you are searching for answers, better answers. I pray you find peace in your decisions, whatever they may be. Maybe Sunday you will feel a bit better. Try to do things you love....even if it is for a short time....do something that cares for your soul. Sounds cheesy, but it always helped me get through.

mammalou

I'm starting back on Tamoxifen after a month. Whaaaaaaaaaaaaaaaa😭😰😡😡😡😡😡 I don't wanna!

damiana9

Haircut is great! I did the same thing Goldie suggested- put my feet up on the chair and laid back for the shampoo- it worked out great!

nihahi

I dunno Bailey.....not entirely convinced here there isn't a bit of TGIF Tequila happening! I will defo give that "button location" thing a try! 

So....the great "venture into the pool, try not to drown, try not to scare little children or fragile old people with scar "flashing" has now been accomplished. I must admit, it went better than expected! I'm not a strong swimmer, but can do slow laps. The front crawl and backstroke were definitely challenging the shoulder, with the rotation movement, but the breast stroke wasn't too bad. After the required laps and rest, I put on a floatation belt and did a bunch of deep water running stuff. Felt great to be trying something more challenging for the overall body and the stupid shoulder. When I got home, I could tell I had done way more full body/arm/leg extension than I have since surgery. Didn't feel bad....I was just aware of having done that kind of movement....again...kind of satisfying!! Oh yeah....never had the "out of body" experience that some of you had, but, maybe you were standing in waist deep water???? I was always fully "in". Swelly belly didn't really happen either....interesting, cause I was sure working???? Maybe the water was more "supportive" than I thought??

Dyvgrl.....good to hear from you, I think a lot of us have been thinking of you today. SE's can be tough, but, you can also learn to "manage" some of them also.....talk to your onc about things. Tough things in life can rarely be "faced" as a whole package....you might find it helpful not to think of all the times you may have chemo, and just tackle the tx's one at a time. Small steps will still take you a long way. I hope you don't view the "day off work" as a sign of defeat....it is anything but!!!!! It just meant you needed to take a day off.

Have a great evening ladies....sbe....still on baby watch??? I'm doing flood volunteer work this weekend so won't be on much. 

jeannie, jlbloom, bluebird.....hoping to see words from you soon.

Jeannie57

I am officially a flapper! Everyone says my doc did a fantastic have been jnnt fit the block. I can't dibs both Wilbur grgvsimecgungrt