2018 DIEP Surgery
Comments
-
and regarding deciding on DIEP immediately after mastectomy.... I wanted one and done. Go big or go home. It was offered to me from the start and I took it. I preferred a one shot interruption in my life instead of 2 smaller ones. My cousin opted for implants mostly due to being out of work but she was out for 2 weeks and I was out for 4 weeks. The 2 extra weeks was worth it for me. I didn't want to have surgery again in 10 yrs (typical for implants). Wishing I never had to have the surgery in the first place but I'm very satisfied with my results -- especially now that my scars are fading to being very light....
curious if anyone has feeling in their breast? and do you feel pressure/swelling in abdomen when you walk/run? When does that stop?
0 -
Shellybeans, I call week 3 hell week. You are so ready to get your life back but the healing seems to go slower than expected. Someone posted right after I had my surgery that they turned the corner at week 3. I was hanging on and counting the days to get to my 3rd week post-op. Nothing happened...I did not turn a corner. I didn’t turn the corner until week 5. You are right on schedule. Watch for infection...but don’t mess with the incisions. Use dial antibiotic soap when you shower. Hydrate...hydrate...hydrate and eat protein. I know you know to do those things because you are a runner, but when we are knocked off our game it’s easy to forget the small things that contribute to our healing.
You just went through a huge surgery. Feeling depressed and discouraged with the healing process is normal. Do something for yourself...meet a friend for breakfast or lunch or get a pedicure. Anything safe and doable that will lift your spirits to push through this time.
I promise you it will get better! If it didn’t no one on this discussion board would ever support or recommend DIEP Flap reconstruction. It is so worth it! Conquer hell week and look forward to how you will feel in the next two weeks!
Sending you gentle (((hugs)))💜.
Barbara
0 -
Lula, looks like you didn't need any other treatments other than hormone therapy? I think with the prospect of chemo and radiation it is hard to make the decision for a big surgery on top of all that. At least it was for me, you feel like enough already I want to be done with all of this crap. I was not in a good place to make a decision about this surgery until I got beyond all the treatments.
Rdee...let us know when you find a good PS and get the date set!
Shelly, I never had any of my incisions open. No oozing or blood at all. I don't know if that is normal or not? Maybe I was just one of the lucky ones? I hope they can get you fixed up and feeling better.
0 -
ShellyBeans, I found it helpful to slowly lie flat on a bed or the floor to help get in an upright posture. That way you’re not putting pressure on your back muscles or working against gravity. But take it slow
0 -
Shelly - Once all my drains were out ( end of week 3!). I started wearing an abdominal binder - that is the only way I was able to get up straighter! And even with that it was another 2-3 weeks before I was walking straight without concentrating on it. It was then that I also moved out of the recliner and into bed which was huge for my back!
I’m sorry you are 2nd guessing and dealing with so many issues. Give it a little more time you will be stronger before you know it!
So last night I was hurrying through a sudden rainstorm — stepped up onto a curb and didn’t get my foot up quite high enough resulting in a header into the sidewalk, well more like shoulder first. Of course it was my left side where I’m already worried about swelling and lymphedema. Ughhh I have a brush burn on my shoulder and it’s really really sore. Also 4 small brush burns on the back of my hand. Keeping them clean and covered with neosporin and bandaids! Had a regular appt today with MO and he said it looks fine and wasn’t worried - somehow that didn’t calm me! Anyways there doesn’t appear to be any new swelling in my arm but grrrr I’m so upset with myself! Gotta keep a watch for continued healing and no infection — it’s always something!0 -
Two weeks ago I had one of my implants removed due to an infection on my radiated side. Last week I was told that trying another implant had a 50% or more success rate, then my PS went to a medical conference last weekend and discussed my case with other PS and at my appointment today she said most PS would not even try another implant as it is very likely to get infected again. My only other options are staying flat or a DEIP, I am very discouraged as my out of pocket was reached in January so unless I have surgery by December I start all over, I still am paying off my medical bills for the last 2 years. Of course with 4 surgeries and an infection landing me in the hospital I have no FMLA time left. The PS that does the DEIP here is firm that I will need 12 weeks out of work. I know I am not a great healer, with 5 surgeries in the past 15 months I seem to be great at complications
. I am trying to figure out the average amount of time people need of from work. Has anyone here lost their jobs over BC and treatments/surgeries? I am so worried I will lose my job but am so unhappy with my body and a sunken in breast. To make things more stressful I don't even know if the infection is gone until I am off the antibiotics for 2 weeks so 3 weeks from now. I go back to work on Monday and will have to find out if my job will be safe if I have the DIEP. I worry because even though my supervisor is great and would never want to fire me, the people higher up are not as kind. They are a healthcare/ hospital organization who really only care about the bottom line. If I lose my job, I lose my insurance . Just when I thought I was done with breast surgeries now I am back to stressing over the right decision. 0 -
Dlpaquette, if the worst happens and you lose your job, remember you can try to negotiate for a continuation of your health benefits for a period of time. You'll also be offered COBRA coverage. While expensive, it might pencil out cheaper than what you might buy on the Exchange,when you compare out-of-pocket maximums and deductibles, and you can drop it at any time. Also, your hospital may have programs to cover or waive some expenses.
While you are determining next steps, find a place to be fitted for and buy a breast form and bra - it should be covered 100% and take one worry off your plate. I've had one for about a month (my DIEP breasts are uneven - my radiated side is slowly catching up tho) and find I can wear it securely in a non-mastectomy stretchy bra.
Fingers crossed for you
0 -
Shelley I'm where you are too really questioning if this was the right choice for me. I love my PS so this is really about me. My rads side still looks very angry and I'm scared to death for the risk of infection.. I'm literally taking it one day at the time. I feel so messed up i can't even begin to think about future stuffs.
Dipaquette I did loose my job but I negotiated for them to keep me on health insurance for several months so huge blessing there.
0 -
Dipaquette,
So sorry to read of your troubles. This cancer thing messes with our lives and is particularly disruptive for those who encounter complications. I wonder if you’re willing to pause on the reconstruction front in order to get some stability- on the health front and work front. I know getting it finished feels good but you’ve had a lot in thbpast year and a break of a year may help
0 -
Hi ladies I am now 8 weeks post op, the plan was to have the DIEP flap but do to previous radiation therapy, the plan deviated and and I had the free TRAM flap BMX also the previous radiation prevented the tissue around the flap to heal and 3 weeks ago I had to have some debriedment and a skin graft. So my recovery has been a process to say the least. I also start back to work on Tuesday, I am a little worried because I still tire easily. Now I am trying to get use to the new me and emotionally that is just as hard as the rehab. On the upside the radiation oncologist said I will not need any further radiation. But if anyone is questioning whether the DIEP Flap reconstruction is the right thing, I will gladly do it again because I truly believe it is lasting and I am looking forward to Phase 2 in a few months. I hope each one of y’alls journey is a smooth process and you all are in my prayers
0 -
Elijahgirl - It's good to read your update today. I needed to hear that.
It's been a hard few days and it's just good to hear despite complications you do not regret the decisions. Good luck going back to work.Just take it an hour at a time.
0 -
Hi Elijahgirl- It is good to hear from you. Sorry to hear you have gone through those complications. Sounds like you are through the worst of it now and on the other side. I too was concerned about getting tired out when I went back to work so I was able to work part time for a week to ease back into it and I think that helped a lot. Maybe an option if you feel it is too much.
Its funny you mentioned gettimg used to the new me emotionally. I was so focused on the surgery and all that I was suprised by the emotional aspect of having my body rearranged with part of my stomach as a breast. It felt foreign and just weird for awhile. I'm almost 7 weeks post op and it feels more and more natural and a part of me. I am also planning to do. phase 2 in a couple of months.
I will keep you in prayers for complete and quick recovery and successful phase 2. 😊
0 -
Thanks for the responses, I may have to wait a year just to keep my job. Of course this year my out of pocket had been met so the surgery would be free, of course if I lost my job any complications wouldn't. I love my job and my co-workers, so losing my job would be great breaking. I just feel like I am trapped and the are no escape routes, just dead ends. I won't let my husband see my breast, I hate looking at it myself, a year is a very long time. I really thought I would be done with surgeries by now, i was supposed to be but nothing ever goes as planned, the story of my life.
0 -
Dlpaquette, What size is your other breast? I have several prosthetic breasts that cost my insurance company $500 each. I also have some lighter ones that you can wear in a bathing suit. I have the bras, too. size 38 or maybe 40. Now that I decided on the DIEP I won't be needing them, but they are cup size "D".
0 -
Scheduled my stage 2 for November 15, the week before Thanksgiving. That will give me a few days I won't have to take time off for recovery. Looking forward to this being over. I also had a spot that looked like a large pimple on my breast and he said it was a popped stitch. He pulled it out and OMG it was like 2 inches long. Good thing I have no feeling in my breast.
0 -
Saw my PA today and they derided all of my incision wounds. Thank GOD I do not have feeling in my breast because the very small area on my abdomen - yowza it feels like the day after I had surgery! They are happy with the healing but said it could take up to another four weeks to completely heal. I'm so glad I went in - they said that the scabs and glue needed to come off because they were preventing it from healing. They seemed happy with how everything looks but to me it looks pretty scary. I don't have huge open wounds but what's there is just not pretty. I can start standing straight slowly and I'm so thankful for that. I have been pretty tearful from Friday until today so it helped me emotionally just hearing that I'm doing ok. I am a bit of a control freak so the inability to control my healing being on my schedule is testing my patience.
OCDAmy - so happy to hear about your phase 2. I'm thinking not until April or May for me - and that's fine. I want to stay as afar as I can from an OR for a little while.
0 -
Shelly, glad to hear they cleaned everything up. Hope the healing gets kick-started. I met my deductible for the year so I am going to get everything done that I can. Up next is my colonoscopy!
0 -
OCDAmy - here’s a tip on the colonoscopy. If you schedule it mid morning (10 or 11) you get to consume half of The Drink on the day before and half the morning of the procedure, instead of all in one day. My drink was pineapple flavored and not that bad. The procedure was a snap - felt fine the next day, but definitely need to be home once you start drinking
0 -
Hi all. After reading some of the posts here about your experiences I am getting increasingly nervous about my surgery. Is it really worth it? Those of you who have gone through it already are you happy with the outcome? What do your stomach and breasts look like?
0 -
esny- I am thrilled with my outcome and yes it is worth it. We all get a case of nerves right before surgery. Totally normal. Did your PS show you his before and after photos? If so, remember back to what you though when looking at them and if you were happy with what you saw. If so, just keep that image at the forefront. You got this!
0 -
Dipaquette: With all that we've been through, both physically and emotionally, we shouldn't have to concern ourselves with the prospect of losing our jobs and health insurance. I feel the same way: my husband's insurance covers only him and I have to work full time to cover our children and myself for health insurance. I only have five weeks of FMLA left in this plan year and I'm worried that I won't be able to heal in time to go back. My employer allows no modifications upon return from surgery and will not accommodate a request for part-time employment until healing is complete.
esny: I'm scared too, after reading all of the threads on DIEP surgery. I'm telling myself that the complications we've read about are the exceptions rather than the norm!
0 -
I suppose you should hear the good and the bad with this surgery since it seems everyone is so different. Mine has been mostly all good with no complications. I must heal well because with my mastectomy and the DIEP I have had no infections and my incisions have all healed well. I felt much better than I thought I would after this surgery. My doctor uses the ERAS protocol and I had a spinal block before surgery and woke up in very little pain and no upset stomach. With my first PS who did my mastectomy, I was in horrible pain and couldn't stop throwing up. I went back to work at 4 weeks post DIEP (desk job). I only had DIEP on my radiated breast and it looks good, soft and natural. Scars are healing well. My tummy is much flatter than before but still have some swelling and numbness under the belly button and my shape is still weird because the rest of the fat is still there but I am hoping stage 2 takes care of that. If you had rads, I think DIEP is the best option. I was nervous before surgery too but I am glad I did it.
0 -
Thanks for the replies ladies! I appreciate everyones input.
OCD Amy- when you say your tummy is a weird shape what do you mean? The tissue above the belly button is still there? That's what Im worried about - that the fat from above my belly button will be there while the part below my belly button will be flat.
I have a big party for my daughter in early March and I need to look ok in a dress by then!
0 -
The fat above the belly button gets pulled down so it's not as prominent. My issue is the muffin tops on my hips. My PS is planning to lip there so it should make my hips more proportionate to my tummy. Here is a side view of my tummy.
0 -
Mine looks very similar. Mine upper tummy is much flatter than it was bcs of the repair done on my abdominal muscles. I like my new belly button much better than my old one, too! My overall shape is a bit boxy but so much better than my old flabby tummy. I have a mole that was up on my ribs that was pulled down a good 4-5 inches after surgery.
The thing I like the most about DIEP breasts is that they feel, on my body, like natural breasts. They don’t feel cold inside my chest when it is cold outside and don’t feel like weights tacked on to my chest. Even if I don’t end up with a perfect shape I’ll still feel comfortable in my skin overall.
0 -
Thanks SO much OCDAmy and Lanne! Super helpful!
0 -
Esny, just chiming in with a “very happy with results, luckily no complications.” I think it’s good to hear/read about possible complications to be prepared (thank you to those who share the tough stories), but don’t assume you will have all of the complications you read about.
L.
0 -
carmstr835 I am a size D also.
I went back to work this week after 5 weeks off and I do have the best co workers ever, they are huggers. Now if HR was even a bit helpful I could figure out if my job is at risk or not if I go ahead with the surgery. My supervisor said she didn't think they would fire me and she would fight to keep me, but I know someone who worked in the hospital got fired after missing time for cancer and just because I work in a doctor's office for the same people does not make me feel any safer.
0 -
I found out that my hospital allows 6 weeks of personal leave in case your FMLA runs out, which is awesome! I have also heard of people who were 'fired' after a diagnosis of cancer, but I believe The Americans with Disabilities Act (ADA) protects such cases.
0 -
ADA does protect you BUT they usually fire you for something else so they can’t be sued. With that in mind, all communications between you, HR, your supervisor, co-workers etc needs to be in writing. Don’t trust that email communications will remain on the company server. Take screenshots and forward a copy to your personal email. My company sends an email after every HR phone contact afterward recapping the discussion. If yours does not do this and you have a phone conversation with HR/supervisor you can recap the discussion in an email saying you want to make sure you have the answer from them correct and ask them to please respond with clarification if it is not correct. Make sure to cc yourself and then screenshot/forward it to your personal email for documentation. If you go back to work and all of a sudden they are all over you for every little thing thing document, document, document.
0
