DIEP 2013

Anonymous

Hello flappers! Been reading but not posting much...and like Movie, crying my eyes out at times. I think the hardest thing to take care of during the whole fandango of cancer, especially when we experience setbacks or failures or severe side effects, is our soul. When you have wounds that won't heal they seem to go straight to the heart of you for some reason. It is one of my strongest memories from all of chemo...the port scar that wouldn't stay closed...it was several months of fighting it and dealing with it and I would cry because I just wanted to get dressed and go out the door and not have to pack and tape and worry about infection ALL THE TIME. I had a concave chest on the left so that breast was gone. And my port was in the top of my right breast so it was totally worthless too, with a huge hole in it....I felt like a science experiment. I also had a drain hole that wouldn't close and leaked a bucketful of fluid every day. It was so tiresome. So my heart goes out to each of you that are healing slowly or poorly. It seems there will be no end. But there will. You will heal...it may take a whole lot of work you hadn't bargained for, but you will heal. Hugs to each of you.



So I ran/walked 5k today! Pretty happy about that. Then DH and I decided to take a quick bike ride. We only got four miles in before it got too dark in the woods to continue! Darn these shorter and shorter days! Oh! and to add to the "brush with nature report" on the way back to the car we spooked deer on the side of the trail twice! They are loud when they are spooked. I think I saw one give me the finger but I wasn't fast enough to get a pic (loved your goat with moxie, Nihahi).



You ladies are truly the best and I am honored to "know" each of you.



Prayers for thems that need it

klanders

Hi! I'm back at the Hope Lodge in New Orleans. If it wasn't for the stage 2 liposuction I think I would be relatively pain free. But because of the lipo it hurts to sit down (unless it's a soft surface). I think my results are great. My blood pressure has been running low today - 70 over 44 right after my shower, but mostly 95 over 60. It should come back up on its own. I came out of surgery with my compression girdle and I have to wear it 24/7 for two weeks. NOLA also gave me a couple bras with holes cut out as I have nipple protectors on. I was able to keep my own nipples in stage 1. This time Dr S just made them sit better and straighter.



I'm tired and heading to bed in a few minutes. Good night.

Anonymous

Good job, Klanders! How long do you have to stay there?

Jeannie57

Good thoughts, Bailey!



I was talking with my BFF today at Starbucks. I was talking about DIEP and how there can be such awful complications. My friend looked shocked when I first told her I was having DIEP and has never been verbally supportive of it, although she has been a big help to me. I suddenly got teary and told her my body parts have been amputated and I'm trying to feel normal again. She said she understood because when she had her thyroid removed (cancer), she freaked out about having a body part removed; it was a body part she never saw so she soon wasn't thinking about it all the time. She said I have to deal with breast cancer all the time because it's so visible. This friend also has a rare, terminal lymphoma. She probably still has many years left. I just wanted to share something positive a non-bc friend has shared with me since there are so many clueless comments out there. I really appreciated it and love her so.

bak94

First I want to thank you all for sharing and answering my questions! I had my reconstruction consult today and I am not so happy:(

I also posted this on the triple neg board, so sorry for the repeat for some of you.

First of all, I need to lose 60 pounds before he will do diep, which I expected.

Next, he told me my blood supply may not be good enough because I had directed radiation to a mediasinal/im node, but he may be able to use a blood supply from under my arm, no way to know before surgery.

He also said I need to be scanned to make sure my mediastinal/im node doesn't have cancer, kinda expected that, but he told me of a case where he went to do reconstruction surgery and found cancer, well that totally sucks:(

Told me that I shoud be scanned now and then again in 6 months to make sure there are no changes and during that time I can work on getting the weight off.

So, with all this being said I still may not be able to have reconstruction because radiation may have destroyed my blood vessels to a point of no return.

This was supposed to be a positive step for me in healing my body and body image and to get thngs going, but instead I am in tears, feeling deformed, inadequate, fat, and having a tight feeling in my chest and thinking cancer is lurking in there, just a few weeks after my followup visit. My chest is always tight, always has been since surgery, but now I am completely freaking out because of the surgeon being so concerned that there is cancer there. Feeling like I am just too fat to even consider having reconstruction, what a waste of surgery because I am already so unattractive and nothing will help me look better. I have always been looking forward to reconstruction, now I feel like it just may not happen. I know on the whole scheme of things this is not the most important thing, being cancer free is, but it felt important to me.   Will I ever be comfortable with not having any breast? I just thought if I survived this FC that I would have a chance at reconstruction, now not so sure.

So sorry to be a downer, but has anybody not been able to have diep because of poor blood supply in the chest area because of radiation? He said my tummy looks fine for a donation site, just the site where it is going to might not be good.

sherry35

Bak94,

I would seek a second opinion. I was told these same things in 2009. I didn't seek a second opinion. I continued to be depressed and felt sooo bad about myself.

My oncologist retired close to 2 years ago and my new one is a younger woman. She asked why I hadn't had reconstruction as I am young. I told her my story and she hooked me up!

Don't let any of my complications scare you, they are not the norm!

Please get another opinion. It might be a tough go but it might not. One thing for sure is that it will change your life!

Good luck and keep us posted.



I would like to thank everyone for their words of encouragement and positive thoughts. I am greatful for each and every one of you. I guess I'm just a little late on the three week lull. Mine is happening now and I'm a mess.
I read everyday and take much out of your posts.
God bless you all!


Sherry

Jeannie57

bak94, what a disheartening appointment! Of course it's understandable that you want to restore what you lost with reconstruction. There is still hope you can do it! No matter what, you must believe that you have intrinsic value, purpose and are loved more than you know, reconstruction or not. There are some great encouragers here. I hope you feel comfortable being here because you are welcome.

nihahi

bak94.....A tough day for you for sure. I want to share that I had the blood vessels connected in the axilla, not in the chest, and things have gone well for me. My surgeon doesn't always use the axilla, but told me it isn't an unusual option for him either. Just depends on anatomy variables for him. It likely has taken me longer to regain ROM in my arm/shoulder than most other ladies, but I also went into the surgery with shoulder issues already. 

It sounds like your surgeon is taking care to make sure you are as "clear" from bc as possible, before beginning your recon, and that is good medical practice, I think.

Use the wait time you are now facing to become as healthy as you can....it will only help! Stay with us here on the thread...there are many wonderful, compassionate and knowledgeable women here, who will support and encourage you at every step.

mammalou

Thank you ladies for all of your support. Can't share this stuff with too many people, so I do appreciate you lending an ear! My wound is getting a little better and it is amazing to see. I'm still packing it 3 times a day and wearing that darn compression 24/7! Ugg, I'm ready to just stop. I do feel like my belly is more swollen. Is that swells belly you guys talk about? When will it go away:(.



I'm thinking I'm going to get back out there walking the weekend. I'm on my feet all day teaching so I'm pretty pooped at night, but I'm thinking I can manage a walk better now. I am 10 weeks out now! it's hard to believe that it takes this long.

nihahi

mammalou....good to hear from you. Sounds like you're doing better for sure, getting through a full day of teaching!!!! Per usual....I'm sure we are all different. My swelly belly started at about 2 months post op, and seemed to get progressively more of an issue, for about 2 months, as I became more active. About a month ago, I realized it was starting to happen less often and not get as "big". I am now almost 5 months post op, and have almost no issues with it anymore. I do still have the "iron plate", but it is definitely not as hard and nowhere near as large.

jubby....two weeks out....your swelling is probably playing all sorts of games..here today/there tomorrow!

bailey...congrats on the run/walk....your messages are awesome, compassionate and full of courage.

nihahi

klanders.....good to hear you sounding so good, get that blood pressure up though!!!!

goldie4040

bak94, I am sorry. Sounds like you had a terrible day.  First, let me tell you about a friend of mine who was told they wouldn't touch her till she lost 100 pounds.  She has lost 80 so far. There really are concerns about weight for diep, be it too thin, or two heavy. As far as the vessel in your chest being ruined from rads, there are a lot of women on here who had this surgery after rads. You need to seek a second opinion.  Also, I think if you hang in there a little while, take the time to lose the weight, and get healthy (so important for this surgery, or any surgery) there is some new hope on the horizon.  They are starting to do fat transfer without flap surgery.  It is all through lipo, but a special process.  I just finished reading a long article about a women doc at NYU who is doing it, and UCLA is doing it too.  My doc is offering to inject fat to cover implants completely, but not to make a whole breast yet.  I think there are very few facilities doing it, but that's the way it was for diep not to long ago. So, who knows.  Maybe, by the time you lose the weight, and "if" you don't have the blood vessels in your chest, you might be a candidate for this new procedure that is being talked about a lot lately. If you go back in  my post a few pages I posted a video from CBS news about the doc at NYU, and the work she is doing on a woman who lost her breast 20 years ago.

mammalou

Does swelly belly just feel like your belly is bigger and bloated? I'm hoping I'm not getting fatter!

nihahi

For me, my stomach both felt bigger and truly was bigger. I noticed it was always better in the morning, so I started to measure my waist when I got up in the morning, and after I had done more intense activity. There was always a measureable difference, sometimes up to an inch, within a few hours, sometimes more than that over an entire day, but it would always disappear overnight. That proved to me it wasn't weight gain, but true swelling. I also had increased sensitivity, almost to the point of "skin pain" when the swelling was the worst. My surgeon said it was due to several factors....and would gradually resolve without any needed intervention....he was right.

mammalou

Thanks for that description. I have that painful over sensitivity in my skin and it is much worse at the end of the day. I just looked down and ouch, my stomach is bloated! i was going to be bad and take a break from compression for the night. Maybe I shouldn't.



Also, I think my belly button might be healing from the inside out too! It is getting very small, not that I care one iota about my belly button.

nihahi

I'd recommend sticking with the compression, since you are still healing too, right? Swelling and healing can work against each other. Keeping your skin well moisturized, and doing "tapping" on your skin will also help.

For a time, I thought my belly button was going to disappear, it seemed to be getting smaller, the scar around it tighter....as the iron plate has receeded....the skin around my belly button has softened considerably, and it now looks completely normal. Bet the same will happen for you.

mammalou

The compression is back on! The last thing I need is to pop more stitches. That is interesting about the belly button. I was also wondering if it was going to disappear. I'm sure that swelling adds to that.oh, our poor bodies and all they go thru!

nihahi

yep, our bodies go through incredible stuff but eventually, we all heal. The hard part is....one BAD day, feels so often like one bad day more than we can handle. But....time passes, and bad days come less often. Heading to bed now, what the heck, who knows, I might actually get some sleep tonight! Hope everyone else does too. Love to you all.

Curlylocks

I am reading but havent posted...have been getting ready to walk 60KM in the Weekend to End Women's Cancers in Toronto, Ontario Canada - tomorrow and Sunday!  My feet are going to be one hurting unit after this but cancer is even more difficult to deal with...so I will suck it up "buttercup".  I have raised $2,800 in two months thanks to all my great support of family and friends.

Will check back in after the weekend.  Hugs to those ladies really struggling!

BTW - I am hoping to get my November surgery date nailed down today:)

Michele

MartyJ

Congratulations to all who slept last night.  I logged on this morning and saw the usual suspects were not on their computers in the middle of the night.  Yippeee!  Interestingly, they say that looking at a computer monitor at night makes it even more difficult to get to or back to sleep.

Curly - Congratualtions!  Way to go.  You will do really well.

Mama - standing on your feet all day can contribute to the swelling.  With an open healing wound, compression is your very best friend!

christina0001

Jubby I have a bulge on my left side at my tummy incision and my PS said it was a seroma, a fluid filled bubble of some sort. She says it is about 20-30 ccs of fluid. She said she could suck it out with a needle, or I could keep wearing the abdominal binder and encourage it to get reabsorbed. I chose the abdominal binder! If it's still there when I have my stage II done she said she will suck it out then. Maybe that is what you have too. I know it was alarming to me until I knew what it was.

Where are you ladies getting lipo at that makes it hurt to sit down? I am getting worried now.

Jeannie your story about your friend made me smile. Thank you. 

bak94, wow, your consult sounds completely overwhelming. That's a long list of do this, do that, maybe then we can do this, but maybe not... The best that I can compare it to is how I felt at the beginning of chemo, totally overwhelmed like it was impossible. But taking it one treatment at a time helped me mentally. I know you are really looking forward to recon but maybe for now the plan just has to be broke up in baby steps, so it is more manageable, in whatever way works for you. Maybe when you get through those first several baby steps, you will learn that you can get a DIEP, and maybe not. Getting a second opinion is a great idea, too. Frankly although I am very pleased with my results, the surgery is brutal, and implants are not a terrible second choice.

mommalou, so happy your wound is healing well!

Holy cow curlylocks you are a fundraising wonderwoman!!! That is amazing!

Hoping that all here who are healing, are comfortable, and those who are waiting, are calm.

Janet_M

Curlylocks - You GO, 'Buttercup'! Best wishes for the walk this weekend. I hope your feet don't hurt too much, every step is meaningful.  Yay for you!!

nihahi

curlylocks....that's a great thing, to walk that far in two days. I'm sure you're going to "do it" and will find a great sense of pride and companionship. Good on ya! Hope the "date" gets nailed down for you too..it's been a long wait for you.

marty...I was awake a few times last night, but didn't post, cause I didn't get out of bed. I've tried every sleep hygiene theory in the book, in several books....I either sleep or I don't sleep. I was so thrilled for about a month or two after surgery, cause I was sleeping great...even with naps!!!! I wanted to believe I had reset my "clock"...turns out....just was more exhausted from the whole recovery thing than I thought.

tgif to all you working gals. Hugs and positive vibes to those in healing mode today. ((((x)))) Have good days!

Morningsun1

TGIF, flappers

Good luck, curlylocks. I am doing a 5-mile run on Sunday, a National Ovarian Cancer Coalition fundraising event.

Have a good weekend!

hrf

Curlylocks, good for you for doing the walk. All the money goes to Princess Margaret and Dr. Tak Mak who is doing groundbreaking research. While I have never done the walk myself, I used to volunteer to help with registration and I have many friends who have participated.



I'm amazed that your doctor will give you a firm date so far in the future. It was my experience with 2 different hospitals (and different doctors) that you just have to wait for an opening and you're lucky to get 2 weeks notice. It certainly would be nice to be able to plan ahead. Maybe that's just a Toronto thing.

sbelizabeth

Bak, I had MEGA radiation to my chest, and lots of it hit where my mediastinal nodes are, since my BC was on the lower, inner side of my breast.  The RO wanted to make sure he blasted any nits that might be lurking around.  During my DIEP, the PS took a lot of time carving away radiation damaged tissue, but the blood supply was fine.  I agree with others on this board--get another opinion. 

I've always had a little bulge above my tummy scar after DIEP, and it's there again after Stage IIa.  My PS said I was pancake-flat on the operating table and that it's fluid.  I had an appointment with my lymphedema therapist (who has become a wonderful friend) and she showed me how to do manual lymphatic drainage to encourage the fluid to drain into lymph nodes in my groin.  The big issue is that lymph fluid won't cross scars, so I have to direct it out and around the 25" smile on my abdomen!

Nihani, DON'T READ ANY FURTHER.  Yesterday evening, the newspaper photographer assigned to covering my 2-year BC fandango, who has also become a friend, wanted some shots of us just doing what we do, so the three of us climbed onto mountain bikes and took off.  She was thrilled about the possibility of seeing wildlife, and really wanted to see a buzzy legless reptile.  Sure enough, we came across a HUGE one.  Karen was like a little girl on Christmas morning.  I seriously thought she was going to grab the thing by the tail.  She got right in its face to take photos, with the reptile buzzing like mad.  I'm still laughing, and I'm just happy we didn't have to drive her to the ED for antivenom. 

Happy Friday everyone!  I'm babysitting Aubrey today while her momma paints a chair--good times for everyone!

Jeannie57

What kind of lizard, Sbel? Antivenom????



Yay, "Buttercup!" You are brave, strong and courageous! Thank you for walking and for raising money!

TammyT, you, too!!!



Yes, I slept last night but I was wide awake at midnight before I went to sleep. What's up with that??

lahela

I am feeling so angry and betrayed right now and need to vent - it's kind of offtopic, so I hope nobody minds.

When I was first diagnosed, I met with my boss and resigned from my job. I was the only English teacher in a small private language school. The terms of my contract didn't include sick leave and I couldn't guarantee at that stage that I would be able to return to work full time after the summer break (I taught 12 levels from kids thru adults) so I cut myself and my boss a break by resigning so a) I could focus on getting well, and b) she had plenty of time to replace me. She asked me straight up what she could tell the parents about my leaving and I said she could say it was for medical reasons but no more than that. Well, I found out today from my son who goes to school with one of my former students that she told everyone that I have BC in the form letter she sent to all the families.

The school is just a few minutes from where I and most of the families that go there live. I see students and their parents every single time I go to the supermarket or catch a bus or just have a coffee in a local cafe. And now they all know my private business!

One thing I decided on right at the beginning of this was that I was going to do whatever it took to get well, but I would do it as quietly as possible because the one thing I don't want is to be defined by this disease. So much for that!

Grrrrr!!!!!

klanders

Hi All! On my phone (like usual) so I'm going to keep this very general. For all you future DIEP'ers - always get a second opinion. My first opinion was at University of Michigan. Three different docs there told me I was too thin for DIEP. They were only willing to do implants and they didn't want me to keep my nipples. Thanks to the encouragement and wisdom from many women on the forum boards I found the NOLA group and Dr Sullivan had no problem finding fat on me!



I fly home tomorrow. Dr Sullivan told me I am free to leave today but it was too costly to change our flights. I'm not sure I'm ready yet anyway to sit for 5 hours in a plane.



So... Lipo - I am REALLY bruised on sides of legs and low back. I think, because I am pretty thin, Dr S used a lot of different areas for lipo. I'm not bruised on rear but for some reason sitting down really hurts - I'd give anything for a cushy toilet seat! :-) Everything is swollen still but I like what I've seen so far. I slept great last night so I wasn't lurking on the boards. I'm trying to take things easy because I don't want any of my new incisions to open up!

MartyJ

lahela - While I understand your anger and frustration, now that it is done you can turn it into a positive.  No one wants their private business aired without their knowledge , but you can serve as a wonderful example.  I know that sounds trite, so I will tell you what happened to me.  When I was DX I worked in a rather public position, but was only 33 and single.  I decided that the only way I could get through everything was to be open and honest when questioned.  I knew that well meaning friends and aquaintances would talk amongst themselves, human nature.  I didn't go out of my way to scream "I have cancer and they just took my boobs".  I did work to find the humor in everything.  I patiently answered questions, even the really terrible ones "will you have a hysterectomy soon?" because I understood the woman asking really wanted to know out of concern.  Men asked questions too and I answered them trying not to take offense.  About 10 years later I got a call from a woman I had worked with thanking me for being so open and honest because by talking with her during my difficult time, I had subsequently nhelped her get through her dx and treatment.  Paid it forward and never even knew it.  Maybe you will be able to help someone, too.