DIEP 2014

Teacher, I agree!!!!

so today I am feeling very overwhelmed.  Suddenly my planning for a good time to have my surgery (I was thinking October).  Was pre- emptied by it must be next week.  I feel so unprepared... Work things, kid things, have not yet taken anytime to enjoy summer.  Perhaps this sounds selfish to those who did not have any time to make decisions... But when they told me I had dcis in one breast... They told me I had time to think about my options and choose what was best for me and when.   So, suddenly it seems that has gone away and I have to figure out how to go hundreds a miles from home for 2 weeks, drop everything at work.. Figure out childcare and finances... And give up my summer vacation which was scheduled for the week before Labor Day.   I feel like I just decided on the diep... Today the genetic testing came back and we started talking about how much this will cost me out of pocket.... And then it ended with.  R u ready for next week... Cause it has already been 60 days since DX and that is already too long...

Is it wrong to feel like I need a little control in all this... That at a minimum I want to be able to plan and schedule some things before it is all out of my hands....  I just quit smoking and am only one day 3.. And we all agreed to 4-6 weeks of no smoking.   

Sorry to complain... I think today I just feel out of control and overwhelmed and think it's just the beginning.  Which is not easy for a type a single mom of 3 very busy kids.  

I am glad that I am not alone in being indecisive. I have to get rads, so they will not do the reconstruction immediately, I will have delayed recon. So I have more time to figure it out. I read above that implants after rads usually doesn't have a good result? I am just afraid of the additional surgery, but sounds like many of you made it through okay. I am now really nervous about having no breasts for months, though. That will be difficult I am sure. 

This may sound like a silly question, but what does OTD stand for?  I didn't find it in the abbreviations list.  A couple of posters have used the term, and I can't figure out what it means.

Thank you.

It has taken me nearly 3 years to wrap my mind around the decision to have DIEP.  I would say that it's more of a decision to not put it off and face further changes in insurance and life in general, finding myself sorry in the future for further delay.  I've been generally doing okay without boobs  What is not going ok is my lymphedema, and my PS thinks she can create some channels for better lymph flow.  If not then maybe I'll have lymph node transfer.  I hope to get my arm looking better since it is exposed most of the summer.  I don't have a ot of faith in getting beautiful breasts because I have so many stretch marks on the skin of the areas that they are likely to use.  Maybe they'll look ok with the lights out.  I suppose my abdomen and hips are going to look much better.  Maybe even my thighs after the lipo.  I think my procedure is called a body lift.  

Kkb33-  Wow...I think anyone would feel completely overwhelmed.  The "advice" I would offer is to get your friends to help.  My kids' parents were great about taking the kids for an overnight, taking to/from a practice, etc.  They really stepped up and it helped.  A couple of parents pooled their money and gave us a gift card for a place that delivers meals from about 30 different restaurants.  That was great.  Focus on the things that have to get done...not the 5 million things you normally get done.  Hopefully the doc office will work with you on the finances since the date has been moved up significantly.  So sorry about your vacation...that just stinks.  Good luck with all of this and let us know how things are going!!

Ally

kb33 - No matter the surgery, it means we will be anesthetized and not in control for some time. Throw in that it is not when we expect it to be and it's a double whammy. I'm with Melissa on this one. Could you have bmx and then do DIEP in a few months? My docs did the bmx with tissue expanders first. That was really easier to "bounce" back from. It gets the cancer out and would allow you time to get family and other issues taken care of before DIEP surgery and the recovery. It does mean two surgeries. I don't know your circumstances but that schedule worked for me. It is absolutely not wrong to think of your needs, family, and your own desires. There are times when people must have immediate surgery but ask your doctor what other options you have if you feel you are not and cannot be ready for DIEP and the recovery time needed by next week. Let them know immediately so a plan can be put into place that eases your stress and concerns while keeping focus on your health and well-being. 

thnx everyone.   Was my first real difficult day yesterday.  I suppose I could have two separate surgeries.... But for me.. The vanity comes in.   I would not be able to handle this if I woke without breasts.  Unfortunately my dcis is all over my breast and almost over 5cm and they also found lcis in other area... So 4 BS have all stated.. No way to less than a MX.  So for me... Immediate reconstruction was only choice at that point.    Perhaps, I would just keep putting this off and finding things to stay in the way of scheduling surgery... So maybe the push is good.    I think I just did not like losing control so quickly.  Ha

Kb33,

I had only one breast removed, so I can't speak to what it would be like to lose both.  However, I panicked plenty over losing one.  I imagined waking up in the hospital early in the morning, alone, and feeling like the end of my world had come.  I sobbed over my soon to be lost breast, I grieved over how little time I had left with it.  Immediate reconstruction was not recommended for me, as I would have the full boat as far as treatment, including radiation.  I had talked about doing a skin sparing mastectomy with a tissue expander with the breast surgeon.  When I met with the reconstructive surgeon, he advised against it.  He was willing to do it, and to be there at my mastectomy surgery to put in the tissue expander, if that's what I wanted.  But he was concerned that my skin would be damaged during radiation, and he wouldn't be able to use it when it came time for my reconstruction.  This made sense to me, and so I went with his advice.

Here's what I found out.  Losing my breast wasn't as bad as I thought it was going to be.  Everyone on these discussion boards told me the same thing - how I imagined it would be was WAY worse than the reality.  I was scared to look at it, at first, that is true.  And I didn't have to for a while, as I was still bound up with the compression wrap.  My tumor was a whopper, 11.5 cm, and I was terrified of the surgery in the first place.  This is one long haul of a process, and sometimes I would get completely overwhelmed with everything I'd have to get through just to arrive at reconstruction.  But sometimes I was able to concentrate on what was immediately in front of me, for me that was simply to focus on what was going to get this cancer OUT of me the fastest.

What I'm getting at, and it echoes everything our BCO sisters have written - take this in small bites, focus on one thing at a time, and do things in the manner and the order that is right for you, and preserves those things that are important to you.  And please do ask for help.  The people who love you really WANT to do things for you.  Tell them what you need, and let them do it.  This will be hard for a Type A lady, I understand.  But you can do it.

Tina

Wow KB33!  I imagine getting that push was a tough one.  They pushed my surgery up a few weeks and in the end, I was relieved.  It was good to get a date to start planning around, and I am looking forward to being on the "other side" recovering.  I hope that things start to fall into place for you with the planning.  You will be a week or so ahead of me, so I will be there (virtually) holding your hand as I make my final preparations.

And TinaHoff... I had to laugh at the OTD question!  That sounds like something I would ask.

Teacher... thank you for your words of wisdom!  Early on, I had been using the speed bump analogy and thanks for reminding me.  I am leaving for a mission trip in Guatemala on Sunday, a nice distraction before the surgery, and a nice reminder of just how blessed I am.  I will try to check in with the board next week, but if my internet is not great, know that you are all in my prayers. 

ggtxs - I am a HUGE fan of guided imagery!  Belleruth and her magical friends and allies (not at weird as it sounds) got me through two surgeries. For my first ever surgery, my double lumpectomy, I was a very fragile mess. Scared, crying, and I woke up confused and anxious. After that I resolved to be better prepared and I turned to guided imagery. What a huge difference. Instead of feeling so vulnerable, I felt that my 'intelligent' body and caring staff would get me through. I especially like visualizing the examination room being filled with ' all the people who I've loved, and who loved me'. And when it gets to the part about someone 'catching my eye and nodding approval' I just felt so safe and able to move forward. I think feeling safe was the biggest lesson I got from Guided Imagery. That, and feeling less alone. 

At my hospital we were walked into the OR, and I originally felt like I was being walked down a gangplank. By the time I got to DIEP, I was fully embracing the whole process, and managed to feel like I was entering a room where something really good was going to happen. (I was still a bit nervous, but there was ativan for that). Overall the difference was amazing. 

She also does a lot of work with soldiers, and PTSD. I still turn to her for general wellness when I start to feel fragmented. You can actually go to youtube and there's a video of her conducting a session. It's about 9 minutes long and you can close your eyes and join in. 

I love the advise on these boards too. TinaHoff - your last post was fanatasitc. It should be required reading for all patients. 

Rose, I am doing wet to dry also.  It won't work till they get the scab off.  When they took mine off I didn't feel a  thing.  I even went back a week later for a bit more debridement and that didn't hurt either.  I think I am finally seeing some progress with the wound getting smaller.  It's a nuisance, but not as bad as I thought it would be.  My PS already told me he will revise my scar when it's all said and done.

The way I am doing the process is:

Remove old dressing.  I have all my supplies ready before hand. The little bowl of saline to dip the gauze in, the scissor to cut the gauze and tape.  I dip my gauze strip in the saline, lay it over the wound and gently push it in with a q-tip, then I cover it with the dry gauze.  In the shower before my wet to dry routine I use a special anti bacterial mousse soap they gave me in the hospital to clean the wound.  I do it last thing before getting out of the shower.

Hi Ladies

I have not been here for a long while but it seems that all of you in recovery are doing well.  I just wanted to clear up something that I read a couple of pages back.   

A PICC line is not a place but a thing.  It is also called a port.  I had one inserted for my chemo infusions. My port is on my chest above the breast. It is a round metal thing that was placed under the skin with an attached tube that is inserted directly into a vein. Some people have them put under the arm.  I was told that the port can be used for all kinds of things including blood draws and IVs.  If I had been given a choice I would have chosen to have it in the arm because there is a scar that will always show when I wear something a little low cut.

While most PS get a CT scan before the surgery they all do not.  I heard that one PS does not do it unless the patient has had prior problems or stomach surgeries.  He feels that he can find out everything he needs to know in the first 2 minutes after he opens the stomach.  By not ordering the Cat scan he saves money.  Under some insurance plans, patients pay higher copays for certain tests.

All of you have to right to feel however you feel. Dealing with the diagnosis, treatment concerns and reconstruction decisions  can be overwhelming.  We are all human.  Give yourself a break.  You deserve it.

I did not have a CT scan prior to surgery either. I asked my PS and he said he could see what he needed to as soon as he went in. 

Trish- how is the pain in your abdomen?

Also, to clarify, a PICC line and a port are not the same thing. A port is surgically implanted under the skin, usually near the clavicle. A PICC line is not surgically implanted and a portion of it always remains outside the body, usually in the arm. Both can be used for chemo. It is true that they can be used for blood draws as well, but a nurse must be trained in accessing ports in to use a port for blood draws. I found out during chemo that many nurses are not trained in accessing ports.

I hope that everyone is enjoying the weekend. I had a great day at a water park with my kids and my niece yesterday. Since my surgery was 6 weeks ago, I am the official bag holder. Also due to starting radiation, I have to stand in the shade with my long sleeve rash guard but the kids had an amazing time and I was so happy to be there with them. 

hi all, had all my drains removed on Friday! Felt like heaven! Doc is amazed at my healing/recovery... The difference is protein... Get all you can before during and after... I drink protein shakes, eat protein bars, meats high in protein and drink plenty of milk? He said  unless I have problems with something, that I don't need to see him for a month. 

I do have a question(nurse said it was normal). I have knots on my chest above my breasts. One side is a non issue, but the other, is a large knot and can be tender. 

Questions: 

1. any idea what the knot is and how long can I expect it to be there?

2. Doctor didn't say either way, but I've gotten a couple "shapers" from Walmart  to provide some extra Support for my mid section. It actually helps, does anybody else use these?

Hope everyone is doing well.