DIEP 2013

Jubby

Feeling very blah today.  Day 9 post surgery and I am already over wearing this girdle!  How long do you have to wear it for?  Apparently I am to wear it during the day and my surgical bandage/binder at night.  I have to undo it every time I want to pee! Boy I have taken my mobility for granted! Seeing PS on Tuesday and hopefully he says I am the world's best healer and can stop straight away.   

mrtw43

The coffee question got me wondering, I hadn't heard anything about restrictions of what to stay away from. My Dr. Talked to me about the importance of good nutrition but not about laying off the cofffee or anything else. I have been having a cup most mornings. I am no longer on anything stronger than an occasional Advil.



This leads me to my terribly important shallow question. My birthday is next week and I was planning on celebrating a cancer free body by toasting with champaign. I will be 5 weeks out by then. Can I drink? I wasn't thinking of going hog wild or anything but I was planning on having a drink or 2. I stopped drinking the moment I got the diagnosis to prepare for the surgery, i wanted to be in the best health possible but now I want to celebrate that the worst is behind me.



How long after deip before you can safely have the occasional drink?

MartyJ

mrtw43 - you can drink when you are off the narcotic pain killers.  Happy Birthday!

sweetpickle

Hey Goldie, got my dvd, thanks! :-)

christina0001

sbelizabeth, I lol'ed at your comment about the 8" heels. Blows my mind, I can barely tolerate 2" heels for a few hours at a sit-down dinner. How nice that your PS called to check on you!

lol @ Tammy!

Jeannie, I hope you are feeling better today. I hate when worries of reoccurance weigh on my mind. My mother is a 10+ year survivor and says there's no point in wasting time worrying about it. I know she is right but that doesn't make it easy to put it out of my mind. I agree with klanders, I think that people who have not had to deal with cancer, cannot understand the fear we carry with us. "elephant in the room:" perfect way to describe it. Scarring/incisions: I feel like raggedy Ann at this point, although most of the time the joy of having two breasts again outweighs it.

Tamoxifen: first round with it (between chemo and rads) I too got very depressed. Very depressed. RO gave me permission to stop for rads and that was a relief. I had a long talk with onc about it and he really wanted me to try it again after rads. So before starting it again, I started taking Effexor for a few weeks to build up in my system. When I started tami, I had no depression this time around. After about six months I tapered off of the Effexor and I have been fine, no depression (except for after DIEP surgery for the first few weeks, which is now gone). I don't know why the depression did not come back after I stopped the Effexor. But I wanted to share my story in case it helps someone. I am glad I tried one more time even though I was very fearful to. But if I had gotten depressed again like I had been, I would have definitely stopped it, no ifs ands or buts.

bailey - the waterfall sounds wonderful. What a great vacation.

Tracy getting close to that three week mark! Woo hoo!

lol @ shechirple - you rebel!!!

lahela - good luck starting tami this week. Most women do just fine with it. Think positive!

Jubby - my PS gave me an abdominal binder to wear for "at least six weeks" is what she said, just during the day. Although I left it at work so I am not wearing it this weekend. Oops! A girdle sounds rough! I hope she lets you stop it soon too. You are at a rough point in your recovery. Keep taking care of you and as hard as it is, try to keep reminding yourself that it WILL get better. And it will!

mrtw - my PS did not give me any restrictions either. It's funny how different doctors can be. When I was going through chemo, a lot of the ladies in my group here had restrictions and my doctors did not give me any. I must choose more relaxed doctors. Or, they know I'm a pain-in-the-butt patient and know to pick their battles with me. LOL Anyway I am no doctor but I really doubt that a couple of drinks will adversely effect your recovery, especially at this point in the game. Just be mindful of what meds you are taking as some meds are not safe to drink with. And that is not a shallow question! What's the point (IMO) of getting through all this cancer stuff, if we aren't going to get to enjoy life?

Well I don't know what is going on with me. I have a point in my incision under my lifted breast that has been very slow to heal. PS has not been worried about it at all and says it totally normal and okay. I cover it during the day with gauze and ointment, and there is always a little yellow drainage. At night I leave it open to air. It does not look any worse, but the last two days I've had just a little bit of blood on the gauze, and yesterday evening OMG it started to HURT, big time. Sharp stabbing pain. I had stopped the prescription painkillers but had to take one last night to sleep. Today it is still hurting but not as severe. I just hope it is normal healing pain? I see my PS on Wednesday for my 5-week check up so I will show it to her then, but it is so alarming to me when something new happens!

goldie4040

Christina, you had no side effects from the effexor? I tried cymbalta last week and one  pill made me feel bad for two days.  So that is out. 

I am glad you depression went away, and stayed away. 

Sweet. you are welcome.  Let me know if you have any questions.  DVD works best in a DVD player, some people can get it to play on their computer if they have the right program.

hrf

Most people don't understand our fear of recurrence. But it is a reality even 5 or 10 years down the line. I try not to be paranoid but every time there is a new ache or pain that lingers for a few days, I do worry.



I take Anastazole and I think it also contributes to depression even though the doctors will not acknowledge it as a se. For me the worst se form it has been hair loss which really sucks big time.



Has anyone heard from Bluebird? I wonder how she is.



My PS did not give me a binder to wear. She said once the drains are out, I should wear yoga pants which will provide sufficient support. Unfortunately even after 17 days I still have 1 drain and it is showing no signs of slowing down. Interesting how different each doctor is.



Christina, hope that pain turns out to be nothing but normal healing.



My left side is still very swollen and there is a black area towards the centre which is the area that was cold and probably not getting good blood flow. Too soon to tell if it is just a scab and very slow healing or if the area is not going to make it. It's a small area so I'm trying not to worry too much.



My kids are coming for dinner tonight. Have a good long weekend everyone.

sbelizabeth

DebDylan, I'm so sorry you're plowing through a rough patch.  Right now there are so many stressful events and decisions coming at you. My first rounds of chemo were pretty much a given, with my diagnosis, but the extra rounds after rads were my own choice, and it was a tough one.  You will make the best one for you.

It's been two years and no, I've never forgotten about recurrence.  But it's like the elephant in the living room gradually becomes a mouse in the corner.  It's still there, just more ignorable.  When I have back pain for a couple of days, or my shoulder aches weird, or (WHATEVER) my eyelashes itch or something, the mouse grows into a wart hog just to bang around the room and worry me.  But then all is well, the normal aches and pains of living fade, and the mouse is back.

We're all in your pocket as your flap heals and you process your next steps--Katy

goldie4040

Deb

Darn, overnight?  This stinks!!!! I know those antibiotics will kick in and you will be fine.  I just know it.  Keep us posted. Hugs and prayers.

Curlylocks

Deb - hope things are okay, thinking positive thoughts for you



Hrf and others....I am 8 years out if diagnosis, I don't think the fear of reoccurance ever goes away - Group Hug:)...I think it gets easier to deal with the elephant in the room as time passes.



Christina - you sound like you are doing well!



Happy Sunday to everyone



Michele

sbelizabeth

Deb, do you think a visit to your hospital's emergency department is in order this morning?  If the infection is truly spreading quickly, it might be a good idea to get a doctor's eyes on it before Tuesday.

One of my flaps developed a big blister, which opened to a big crater and took some time to fill in.  But it wasn't hot or infected-looking.

More prayers coming your way.

Marcie47

Hi deb,

You have nothing to lose if you go to emergency except maybe a few hours of your time, you have lots to gain if the IV antibiotic is a more proactive way to treat it.

Good luck, I will keep you in my prayers!!!

sbelizabeth

I'm with Marcie.  I hate going to the ED too, but it might help put your mind at ease, or if you DO need IV antibiotics, better to start sooner than later.  I'm sorry, I just don't know about the necrotic area.  I know it's not uncommom for "pieces" of the flap to lose circulation and slough, but I don't have much perspective on how often or how much of the flap.

MartyJ

Deb,

I am with Marcie & Catie - get thee to the ER (where your PS preformed your surgery).  Fast changes like that are not the usual.  There can be some necrotic tissue, but it should not be hot, red and angry.  Do you have a fever?  Early intervention will prevent flap loss.

I have been off, but reading for a few days because I was so outraged at Bluebird's doctor and staff.  So, damn angry.  There is hope for her, but she will most likely have to go to Dr. Levine & Allen in NYC or to Dr. Massey or to NOLA as they are the most skilled in repairing this kind of damage and have done it many times.

Deb - I am very hopeful you will be fine, but you need to get eyes on this ASAP.

goldie4040

See, Deb.  I am not the only one. Please go. Or, at least take that pic and send it to ps, or resident.

SheChirple

christina: I am more than 12 wks out and still have a few spots on my incision not healed.  Give it time.  Lots of time.

Deb: don't mess with possible infection!!  IV antibiotics can be done at home, if necessary.  Don't even go there yet.  Go see what this is.  I lost a foob....don't mess with it.  Better to have a week on IV ro in hospital than to lose a foob.  Just check it out.

Tracy516

Deb - praying for you!



Lazy Sunday! I feel bad laying around:( but I need it!



Have a great day!

ssla01

Deb, keep us posted. Praying that the antibiotics help quickly. I vote go to the ER too.

Kat-ski

I hope all of you ladies are enjoying this weekend.  My family considers this the end of summer camping.  I don't camp so it is just a three day weekend to enjoy.

I have a question:  I have completed all of the treatments and probably will not get reconstruction until next year.  One consulting PS suggested to get my power port out now and he could use a neck vein if needed when doing the bi-lateral DIEP.  Is this a good thing to do?  I am using warifin due to a blog clot that formed behind the port.  My front of my shoulder seems to swell at times but goes down after a nights sleep.  I have had nodes removed on both sides and just wonder about using an IV for the DIEP surgery and touch-ups.  I would appreciate any suggestions.  Kat

sbelizabeth

Hi, Aspineer, welcome!  One of our gang, Jeannie, deals with neck and foot IVs due to LE risk in both arms, so she'll be along to give you her first-hand perspective.  

My port was used when my umx was done, and I had to really fight for them to access the port and not stick a new IV in my arm.   A year later, I opted to have it removed when they did the DIEP.  I actually asked if they'd consider using it for the DIEP and was told no.  But you're in something of a different boat.  

Before making that risk/benefit decision, I'd get someone's guarantee that they would actually use the port for the DIEP if you went to the risk and bother of keeping it in, and it's your anesthesiologist who would probably make the final determination.

hrf

Deb, hope you have gone to the ER to get it looked at. Thinking about you. As far as chemo, that will ultimately be your decision. Unfortunately it is not an easy one so you have to consider the numbers and decide if it's worth it. If the cancer returned, would you be angry with yourself for not throwing everything at it. Although as you know, even with chemo there are no guarantees.



I will always have an elephant in the room. In the fall of 2004, I had my first bc...surgery, chemo, rads....everything. In January of 2009 I developed a brand new bc and had to go through everything all over again. Getting 2 different dx has really thrown me. But my situation is not the norm.

Sharon1942

Hi, aspinner.  When you are through with your port for chemo you really don't need it anymore & have to have it flushed out regularly to keep it safe from infection, etc.  You don't need it for the DIEP.  They used a regular IV for that.

Cstrong

Hello ladies,

I have been lurking here for a while, gathering all sorts of great information and feeling like I have come to know many of you.

I have not posted, because I didn't have a date for my DIEP.  Well, after waiting 6 long weeks I finally got the call.  My bilateral mastectomy with immediate DIEP is Sept 10th.  Not a lot of time to think and prepare, but that's probably a good thing.  I have been gathering things I will need during the waiting period, so it's mostly preparing my house and my family left to do.

I see my ps on Tuesday to go over some questions, and then one more week and I will be taking the "long nap".  My surgery is in London, Ontario (Canada).

Thank you to everyone who posted things to bring to the hospital, and things to have a home - it is great information and will help me immensely.

It's fantastic to see all the support you have for each other.  You are truly a great group of women!

Colleen

ssla01

Welcome Cstrong! Congratulations on your diep date. My stage 2 is Sept. 9. Not having too much time to think about it is a good thing. Glad you decided to join us.

sbelizabeth

Colleen, welcome!  And blessings as you get closer to your surgery date!  

Jeannie57

Hi, everybody! My moment of frustration has passed. I am on level ground again. Same complaints but dealing with them better. Goldie, thanks for the kind words!



Deb! I hope you have been to the hospital by now. Many of us have learned it is better to be safe than sorry in this whole "fandango," as sbel would say. I went to emergency twice after DIEP in the first few weeks; granted, for different issues. Praying for you! As for chemo, you will make the best decision you can live with. Even with cancer in three nodes, it was a gray area for me. My Oncotype was low so the benefit of chemo was thought to be negligible. In my case, those three nodes made me nervous and I decided to throw everything at this sneaky devil. I was given " chemo-lite," which was CMF. I was fortunate to have a lighter dose weekly so I didn't even lose my hair. The SE's weren't terrible. I was very, very tired and I did have six months of it. It was emotionally draining but I'm glad I did it. Radiation, on the other hand, was highly recommended to me, even with BMX, so I did that, too. I ended up with lymphedema in both arms but I'm living a good life! My situation is different than yours but I hope it helps to hear a story. Find out more info about what chemo would be offered to you and the possible side effects. It may help you with your decision. My oncologist told me that the most important thing is taking the anti-hormonals if you are estrogen positive. I am taking Tamoxifen without any problems. Let us know how you are doing!!



aspinner, welcome! I had a power port but it would have been in the way for DIEP, plus you have to get it flushed every month if you aren't using it. As Sbel said, I have experience with neck IVs! I have lymphedema (LE) in both arms so using those veins is a no-no. I met with an anesthesiology team before DIEP and we discussed what meds I would get, where IVs would go, etc. They advised trying a foot/ankle IV before I went under and then doing a neck IV in the OR. It turned out the opposite. Nobody could get the foot/ankle IV in pre-OR, so they did the neck IV then and there! It really wasn't bad. A doc has to do it. Then in the OR the drugs they gave me and the neck IV both plumped up my vessels so they were able to do the foot. At least in my case, they wanted two points of entry, neck and foot. I have been to emergency twice since DIEP and the Emergency doc had to do neck IVs both times. I was in ER because I was in agony, but the neck IV insertion was fine. Just don't think about it too much when it's happening! If you still have concerns after talking to your ps, maybe you can meet with the anesthesia team, since they are the ones doing any IVs. I saw my team at the last minute so it can be done. The sad thing for me is, one side of my neck is more accessible and now that vessel is scarred already. I refuse to worry about it.



Welcome Cstrong! Yay for a DIEP date! I think it is a miraculous surgery despite the complications that sometimes arise.



There are a lot of surgeries this week! Moviemaniac, firedragon, klanders, MapBB, Goodie, annM1020, thinking of you and wishing you good sleeps and awesome recoveries!

kuka21174923

Bluebird, I'm so sorry about what has happened to you. I will keep you in my prayers.

Deb, did you end up going to the ER? How's your wound feeling now?

Welcome to all of the newbies. This is a great support group of ladies!

Sorry this is a short post. I went to six flags with my kids today in a 105 degree weather and I just got home exhausted, hot and with a huge headache. Just want it to say hi and let you know that I'm trying to keep up with the posts, just not enough time to write😄

sheri47

Well diep surgery done not as bad as I thought praying it stays this way

Jeannie57

Deb, so glad you are taking care of yourself by calling, etc. if something doesn't feel right tomorrow, go in, though.



Sheri47, yay for you! I hope everything continues to go smoothly for you.

Cherrie

I am again many pages behind and will have to go back if I am to keep up. A couple of weeks a go I started to develop shoulder pain in both of my shoulders. The pain in the last two days has greatly increased. I have done nothing to cause an injury as in rotator cuff, but it is symptomatic of that. Has any one here gone on to get frozen shoulders? I can't take Advil as my surgery is in 2.5 weeks. I used to play tennis, but haven't since last November. I walk and ride a bike many times a week. My husband had to take off my sports bra today as the pain is that bad. I don't know what to do. I am tired of doctors, MRI's, and pain. So sorry for complaining. I usually plow through this stuff, but am damn tired of setbacks.