DIEP 2015

no fun, me! Hope everything starts working out so you can begin healing again

Andrea - that would be very disappointing - I hear you re: being emotionally and mentally prepared, it has taken me a while to get there - I'm not sure how I would react if I had similar news. Hope you can stay busy and that June 15th comes quickly for you

Thinking of Melissa today, hope all went well and that we hear from you soon

I think getting up and about as often as you can helps a lot. Also use your incentive spirometer as much as you can to get the anesthesia out of your lungs. I don't like pain meds but I stood up straighter when I used then which I think helped in the long run. You will know what to do! Best wishes for a smooth recovery!

ME, it really will end up smaller. Mine was considerably smaller. I chose to do fat grafting to add to the smaller breast. I did not want the good one touched again. One with tissue loss was enough. Just food for thought. I did not want to take a chance that the second breast could end up with healing issues.I can send you a few pictures if you want. Just let me know.

Question -- I'm having range of motion issues with one shoulder.  The issues didn't start until about 10 months after my DIEP surgery and have been persistent for about 6 months now.  I've had an x-ray and ultrasound and the diagnosis is inflammation of the suprapinatus tendon and shoulder impingement.  I've been going to physio for about 5 months now and we can't seem to get it cleared up -- I seldom have pain any more (which I did have) but still have ROM issues.

Here's where the DIEP connection (?) comes in -- when my physio is working on my shoulder joint and moving my arm up and back over my head (think raising your hand straight up but lying down), I have a pulling sensation at the bottom of that breast -- almost like there is something attached that is being pulled.  I don't have the sensation other side. The only thing my physio can think of is that I have developed scar tissue in that breast that is pulling somehow, and perhaps pulling my shoulder forward slightly which is causing the impingement. 

I'm going to make an appointment to go see my PS, but thought someone might have had a similar issue and some advice re: how to resolve.

Thanks all!

It's official now! My DEIP is scheduled for June 4th. The paper my PS gave me said I can drive in 5 - 10 days or as soon as I am no longer on pain pills. Realistically how long was it before you started driving again? I'm so looking forward to getting rid of my TE after almost a year and a half but at the same time dread the thought of surgery and having my summer screwed up again. She doesn't do the lift on the opposite side at the same time. She says she gets much better results without fighting scar tissue by doing the lift a couple of months later when the flap has settled down and she is able to see what size I'll be. She did her residency at NOLA but I've never heard of this approach before. I'm guessing this surgery would include any stage 2 corrections that need to be made on the flap. Any thoughts? She'll be trying to reduce the scar tissue in my armpit from the radiation also. I'm hoping my shoulder will hurt less and have better range of motion. I did 5 weeks of PT which helped with ROM but did little for the pain. The more I use my arm the worse it gets. It feels like every time I use my peck muscles the TE sutures are pulled and hurt. My TE did rotate after surgery and is way out to the side.

Hi ladies,

Thanks to all of you for sharing your stories and experiences! I am awaiting a surgery date and wondered about the "tummy tuck" and how it may impact movement once healed. I like to dance, mainly Latin and soca dancing which involve a lot of winding of the waist, kinda like belly dancing.  I'm wondering if anyone who has had the DEIP surgery has experienced any issues with their body movement once healed.  I'm worried I wont be able to dance the same!

EveGibb, I'm 3 months out from my DIEP and have already enjoyed a belly dance session with my 7-year old daughter. My stomach feels tight when I sit at my desk too long and feels better when I'm up moving and stretching.

I am thinking of everyone who is having surgery this week, those of you healing and for everyone else anticipating their future surgery. I am at week 5, and had my last checkup at the hospital today, released until later in the year for stage 2. My appointment was with a friend who is a PA at Kaiser (my surgeon is on maternity leave) who actually assisted on my operation, which was lovely but a bit surreal. I had also forgotten to get my pathology results form my op ( I can believe I hadn't been more concerned) My friend looked these up and all was fine - only DCIS on my right boob and sentinel lymph nodes (3) all came back clear.

I am still feeling a bit tired but mostly ready to get back to normality. I do feel I need to get back exercising but my stomach feels tight and sore if I start to pick up activity. I actually think I got up too quickly the other day and pulled something in my middle (everything feels quite connected at the moment) I'm thinking of taking it a bit more easy this week - hence why my kitchen and bedroom looks like the Mary Celeste. I am finally able to sleep partly on my side, although not always. Someone asked about how much people have lost on their waist. I didn't measure but it does really feel quite a lot and my trousers do slip down quite a bit and now need a belt (if only that wasn't sore on my tum). Also - driving - I started after 3 weeks - I was advised to take only short trips at first and not to drive if I was taking strong painkillers.

Did anyone take Iron supplements after their op? I was a little anemic just after my op - but haven't been tested recently. With medical agreement I decided to start to take a supplement for a month or two as I have been feeling tired. I am not sure if this is just a symptom of what feels to be a long 18 months since my diagnosis and the after effects of chemo, rads and two surgeries.

Looking forward to reading all your updates and big hugs to anyone who is having issues.

Sarah

Hi,

I was diagnosed with the BRCA2 gene a couple of years ago, and after lots of tests and cysts, I've decided to go forward with a double prophylactic mastectomy, DIEP. The surgeon will be Dr. Bernard Lee at BIDMC Boston. Has anyone else had experience with Dr. Lee?

Also, if there are others who chose prophylactic mastectomy, I'm wondering if you waffled on it or felt scared? I've been back and forth on this for a while and even though I feel committed to the surgery now, at times I still feel nervous about whether I'll have any regrets. And I'm really nervous about what recovery will be like (pain, scarring, ability to get back to work/do my usual parenting), particularly since I'm a single mom of an 11 and 9 year old. Any insights and advice?

Thanks!

WalleGator, you and I are in a similar place. I had my 6 week checkup this week and everything is healing well as can be, though more slowly than I'd like. I, too, have an indentation at the top of my new breast from the mastectomy and I'll head back in August to have some lipo fat grafting to fill it in, and a little skin off the edge of my belly incision for a nipple. I think the new breast still looks kind of funny, round and flat, but that may get better as I continue healing. I'm going to a PS in Gainesville, FL because of his experience, and the 2 1/2 hour drive to get there is kind of a pain. I'm still sleeping on my back, trying for my side, but still hurting. I got the go ahead to resume physical activities and am starting back with yoga, very gently. I started walking 1/2 hour per day after about 3 weeks and that felt good. Still wearing compression--Jockey Tame That Tummy panties, as I'm still swelling. Overall, I can't complain.

Meded and LaStar: My first inclination was to take off both breasts just to not worry about things again. Doing chemo before surgery gave me the luxury of time to get opinions and do research. It is such a personal decision, no one can tell you what to do. For me, the PS's telling me that I didn't have enough tummy to do both and a genetic test that was negative for the BC mutations pushed me toward only doing one. If I had the mutation, it would have been easier for me to go with both. I just hope I don't now worry about the "good" breast once I'm through this. This surgery is not for the faint of heart, but everyone has a different prognosis. One doctor told me that it is mostly about managing risk. For me, I feel that my risk of getting cancer on my "good" side is lower than the risk of pain and SEs of taking it off. The doctor also told me that if in the future the anxiety is too much, insurance will cover a prophylactic mx on the other side.

Good luck as you move forward.

Time for more adjustments. Been very unhappy with my right breast. I don't like the way it acts when using my arms. My flaps were placed in the split pec muscle. Unfortunately, I lost half my flap (Ruben's Flap) due to complications with healing. Most of the right breast is injected fat from lipo and it does not behave properly. I will be having the pec muscle moved back to the chest wall in both breasts. Some additional fat grafting for symmetry, the lateral fold excised from the right breast. Also, the right breast needs to be lifted. The left hip was lipoed in a prior surgery but now he will excise the excess skin that did not shrink back to give my hips some symmetry. The right hip was used for the Ruben's flap. And finally the abdominal incision will be released, scar tissue removed, lipo the pubic area, and tighten it with the new abdominal incision. I hope this will be the last major repair and maybe get nipples by year end.

I pray everyone has a very successful initial surgery. It is amazing what can be corrected and manipulated if by chance problems arise.

Surgery will be May 27.

I will continue to follow each of your journeys and pray for you. I will update everyone later.

Hey WalleGator: I didn't go to Shands, just North Florida Regional Hospital. My PS Jason Rosenberg is affiliated with (of all things) an orthopedic clinic by there, so it is weird sitting in the waiting room with all these broken bones and aching joints. He works with another general surgeon, also not affiliated with Shands. My Tallahassee oncologist told me about him as he had other patients who were very happy with his work. Tallahassee just got the procedure last year and I wanted to go with the doctor who has done a thousand of them rather than 50. So far, so good, no complications and the surgery was only 4 1/2 hours long. Did you go to Moffitt? I got a second opinion there and wish I lived closer as it is a wonderful place with integrative medicine. My husband has a doctor there for his MDS (kind of a pre cancer blood condition).

I go back for phase 2 on August 5. It will be impossible to really match the real one with the foob. I'd asked him about lifting both but he talked me out of it because that would be pretty invasive on my good side. So, I'll still be a little saggy on both sides. I am also not sure what to do about the nipple (innie or outie?). My original goal, and it is still my goal, was 1) not to wake up with a flat incision across my chest and 2) look like I used to in clothing. [Goes without saying get rid of the cancer!] I will achieve both these goals, so I can't complain.

Feeling more like my old self every day, but it is a long road. Take care, all!