Bilateral Masectomy with Diep Flap

Hi. I had my bilateral mastectomy followed by immediate diep about 3 months ago. I want to say that it is important to remember that everyone handles surgery and recovery differently. I was initially so freaked out about diep because I had read some many stories about a painful, lengthy recovery. I had already been through 8 rounds of chemo over 5 months and just wanted to be done with cancer. I really almost just went with a bilateral mx and no reconstruction because of my fears of the process and how difficult it could be. Boy oh boy am I glad I pushed myself and had diep despite my fears. For me, it was no where near as bad as I had read and anything I experienced was 100% worth it.

Doctors/Needles: TRUST. You have to be able to trust your doctors. If it feels at all like you can't communicate your fears to your team, get another team. If you can trust your team, everything is so much easier. A good team wants you to be comfortable and will do whatever they need to do to reach that goal. I travelled from AZ to Illinois for treatment and surgery because I found a team I had faith and 100% trust in. They made my experience so much easier because they knew me as a patient and what I needed. About the needles...I am okay with needles myself as I have one really easy to find vein and they hit it right everytime. If I was more anxious about veins, I would definitely tell everyone taking my blood first. If they are callous about it, ask for someone else. They only take blood once pre-op and a few times post-op. Post-op, you should be on so many pain meds you won't care. If you are having a sentinel node biopsy during surgery, there is an injection before surgery that can be an little painful...but you should get lidocaine and ice instructions to follow.

Pain: I was definitely in answering lot of pain. I can't sugar coat it for you. Sorry. However, I was given access to whatever super duper heavy pain medications I needed and given a continuous pain pump. With all this, it was totally manageable. The first day after, I tried to go with less drugs and ended up asking for the heavier drug afterall. Don't be afraid to take the drugs those first few days in the hospital. They make it more comfortable for you to get up to walk and walking makes you heal faster. They removed my catheter the day after surgery and I called them when I needed to get up for the bathroom. Getting up was challenging because of all the tubes, drains, wires....don't wait until it's an emergency is all I am saying. Once they hung all my 'stuff' on the IV pole, they helped me up onto the edge of the bed and helped me 'stand'. You will be hunched for a couple weeks, but it gets better everyday. Once they helped me to the bathroom, I was able to manage by myself. Thankfully!

I had surgery on Monday and left the hospital on Friday. I could have left Thursday, but I was given the choice and decided to stay one more night. Don't let them rush you out of the hospital. You should know when you are ready. I went to a hotel after I left the hospital. The next day, my husband and son went to a local mall for a little exercise and entertainment. So, I was at the hotel most of the day by myself and I was just fine. I began my arm range of motion exercises right away and I had no trouble doing most things on my own. If you have a stock of supplies low enough to reach for fora could of weeks you will be okay. Showering was as little annoying with the drains. Wound care was absolutely tedious. I would say that the whole wound care/drain management is the most annoying part of the whole deal. However, it all gets a little better each day. At night, I would tell myself...thank God that day is done and I don't have to live that one again. It honestly gets better every single day. 3 days after I left the hospital, I walked on the hotel treadmill at 1.0 miles per hour for 20 minutes. The next day, I went and gift little faster. The next day, I was at 3 mph and hardly hunched over at all. 1 week after I left the hospital, we took my son to an indoor waterpark hotel. The boys had a great time and I relaxed on a lounge chair with a good book. By then, all my drains we're out, I was walking without much of a hunch, I was off all my pain medications, and I was thinking God that I hadn't let my fear stop me from the surgery.

I hope I answered your questions. I know how scary it is going into this surgery with so many doubts and fears. I know you feel like your support system is small, but there are so many of us here who have gone through this and odds are that anything you experience will be something we can help you through. You can do this. You are strong enough. You will be okay. You just have to keep telling yourself these things. It sucks!!! It really really sucks to be in this position at all, but you will be on the other side of it in no time at all and then you will be a resource to help someone else.

P.S. The 9 hour surgery was the best sleep I had had in over 6 months. So, there is one side benefit.

I'm also considering this surgery for this year. Thanks DizzParkMom for very encouraging info. I've already had a mastectomy last year so the other side will be nipple and skin sparing. My husband and I are not getting on well at all so I worry about how helpful he will be for my recovery. I have two young adult sons who are not particularly good around the house! I'm usually the chief cook, cleaner, shopper, organiser, you know the drill. I am concerned about infections, complications etc post surgery. Alternatives of no breasts at all (I find that hard to imagine) or the 6 month MRI/mammo & US is super stressful too! So hard to make these decisions.

Hi wings...sorry, I've been distracted this week and didn't get a chance to see your reply. I live in Phoenix and traveled to the CTCA in Zion, IL. It does seem like a long haul for treatment, but it worked out for us, so there it is. About the stairs...I told the Physical therapist who came to help me walk around that I was worried about stairs. She propped open a stairwell door and said, "well, let's see how you do." It was a piece of cake. No worse than walking. The irritating part was the wires and tubes I was chained to...they limited me to about 3 steps. I was easily climbing 2 flights of stairs at the hotel 11 days after surgery. Also, don't worry about the bathroom and hygine issues...it wasn't a problem for me and probably won't be for you. I did have to have help getting out of bed everytime because of needing to be unhooked from so many monitors. Then, it was awkward using the restoom while the nurses and techs literally have their ear to the door just incase you need help. I was worried about all that too and all the worry ended up being a waste of my energy. I think the kidney aurgery you had was more invasive eventhough itvwas laproscopic. They were actually cutting through many more layers into your abdominal cavity. In this surgery, it's much more 'on the surface'....the skin, fascia, fat...etc. There is some digging around in the muscle to get at the bloodflow, but hopefully no removal or full dissection of the muscle. Don't get me wrong, it is still one heck of a surgery, but not necessarily worse than your kidney surgery.

How did your appointments go?

Plastic surgeons almost always say working with radiated skin is awful. Two of my friends had DIEP surgery on radiated skin both look great. One friend had both sides done, she had no problems.

Maybe you want to look for another surgeon. Mine talked about the discomfort and I would have to take pain meds for awhile. Well I was scared I never had any surgery to my abdomen before, yikes. I was fine and I really got away with Tylenol most of the time. I was so happy with results including the flat tummy.

Oh by the way I still have mammograms on the foob, no kidding. The technicians can't believe it isn't real.

I had BMX with immediate DIEP on Tuesday! I feel like the pain is scary but manageable. I got off the pain pump pretty quickly because I still had some nausea which was worse than the pain. Currently on Toradol and Percocet. Which keeps my pain tolerable. I'm able to get comfortable and sleep (in between Doppler checks!)I had probably 2 IVs and 1 or 2 other blood draws prior to surgery for pre-op testing. Plus injections into my breast to locate sentinel nodes. Ask for EMLA cream, especially for all of the outpatient sticks. It helped with the sentinel node injections! Since I've been in the hospital, here's what I've had so far: they put the first IV in while I was awake. While I was under anesthesia, they put in a second IV and an arterial line. The arterial line is how they'll take blood samples from you after the surgery, but mine wasn't working. So I had just one blood draw one morning so far. They also had to start a new IV today because I was down to only one and it started leaking. I know it sounds like a lot, but it helps to have people doing it who do them all the time!

It also gets better every day. Such obvious progress is so encouraging!

Hi Wings2Fly, Sorry I didn't reply earlier, forgot to save this post to Favourites. Have you made a surgery decision yet? Or already had surgery? I agree with DizzParkMom that pain medications are much better nowadays. I'm not so concerned about pain but more concerned about how long I will really be "out of action". This is the hardest decision to make. For me elective surgery is a completely different ball game to surgery you have to have to save your life. The DIEP procedure certainly seems to lead to far less infections and complications than implants. It's just such a scary thing to contemplate the lengthy surgery and recovery.

Babs, I think what you are experiencing is normal. My DIEP was 10/19. I had what sounds like the same irritating feeling from the drains. My drains were removed 7-10 days after surgery and it felt much better afterwards. I did also have some wierd irritation from the armpit towards the back of my upper arm. It took a couple months for that to go away. How are you feeling otherwise?