NOLA, DIEP Qs- Losing my Mind... HELP!

javamama · September 2016

I'm considering a DIEP. From NOLA. So, I have an excellent breast surgeon and an excellent plastic surgeon. Unfortunately, my PS doesn't do DIEPs. She only does P-TRAMs. With cancer taking my boob and a part of my sanity, I just don't want to lose muscle, too. So, I told my PS I couldn't see myself agreeing to have a TRAM. I'd rather go boobless or with implants. Anyway, the PS agreed to just put in a TE above the muscle during the UMX I'm having on Monday.

My main concerns were that my original surgery date was moved up by almost 2 weeks and that has made me feel unbelievably under pressure. But this is something with which I can deal. What I had the most problems wrapping my brain around was whether I was unnecessarily undergoing 2 surgeries- one for the UMX and one for the Flap/reconstruction surgery. After talking to my BS and the intake lady at NOLA, waiting to reconstruct seems to be the standard when radiation is still on the table. And radiation is still on the table in my case because the tumor keeps getting bigger and bigger every time they take it's picture. The initial Mammogram was almost half the size that the MRI showed a couple of weeks later. Anyway, I'm pretty sure that it's swollen, but that's not certain. It really could be that big.

So, now my plan is to do the UMX with my awesome BS and my PS this coming Monday. Waiting to see if radiation is really necessary and then deciding between the local DIEP dude or the team in NOLA.

But I hate that. I hate having to have two surgeries. I hate the dragging out of the process over several months were I'll be in low grade pain for most of it highlighted with punches of real bad pain after surgeries. I hate that they can't just scoop out my traitorous boob- off with its head- and pump in fat to full, sew me up and send me on my way. I hate that orgasms- yes we don't talk enough about the importance of female orgasms on the quality of life, like dudes are the only ones who get medicinal intervention to keep orgasming until they die, but women are all left out because the general feeling is that it's just not necessary- are going to be negatively impacted because I'm losing nipple sensation. I hate all of this. I don't want to be tweaked or tuned up, although that's going to happen now. I hate that my plans for going into old age with grace and dignity and wrinkles and gray hair and sagging tits PROUDLY is going to fall by the way side. I hate that it makes me feel like I've sold out in some way to get new boobs, a new tummy, a new body and not stay true to my course of embracing aging as a woman in America.

So needless to say I was a total basket case. Well, I still am. So I called my nurse navigator yesterday all in a panic. Because I thought I was undergoing two surgeries unnecessarily. My PS had agreed to the TRAM on Monday as long as the nodes they pulled looked clear- which diminishes the chances of radiation in my case. But my BS said the DIEP is different than a P-TRAM and that the DIEP dude in the area wouldn't do the DIEP if radiation was on the table. So, I called NOLA hoping for a different answer- mostly because I've read that they've done this before in NOLA. But NOLA told me that they would also delay if they know going in that radiation is possible. So I discussed getting the UMX here locally with my kickass team here and then doing the DIEP later in NOLA. They are calculating my costs are supposed to get back to me.

So, any insights into anything I've said would be so much appreciated. So.

toomuch · September 2016

javamam - Feeling rushed when making these decisions is really difficult! I was not in the same situation but was having a difficult time lining up a BS and PS at the same time and also not knowing if I would need radiation. My MO told me to have a lumpectomy even though I knew I eventually wanted a BMX and then coordinate my BMX and reconstruction. Following his advice was the best decision I could have made. During my chemo treatment I learned about NOLA and 5 months after radiation I traveled there and had a BMX and S-Gap reconstruction.

If you have DIEP reconstruction, you can will still age with grace. You may have a tighter tummy but your boobs will still sag as you age If a lumpectomy is an option now, the folks in NOLA may be able to perform a nipple sparing MX. This doesn't mean that you'll retain your nipple sensation but it may help you feel whole. I was not able to save my nipples but I have been pleasantly surprised by the sensation I still have 50-60% of my breasts.

I hope that you are confident with your decision when you have your surgery next week.

javamama · September 2016

Thanks so much for your wonderful reply, toomuch. Your name says iti all. All of this is TOO MUCH. Ha! I am slowing coming to terms with having the UMX on Monday and waiting for reconstruction so I can get what I want.

glendag · September 2016

It is so difficult to make all of these decisions. I had a unilateral mastectomy and then a year later prophylactic mastectomy and bilateral DIEP reconstruction 8 years ago. I had to wait a year also due to the radiation question - which I ended up not needing. Placing the expander is wonderful so that you can save all of that skin, I wish I had that opportunity! I found that it was a nice break to concentrate on treatment, then reconstruction. 4 years ago I ended up going to NOLA to revise my DIEP that was done at another institution with bilateral GAP surgery at NOLA. My only regret is not going to NOLA first! You will NOT regret it!! Just take one day at a time, it is a process...

javamama · September 2016

Thanks glendag!

I postponed my surgery so it's off for Monday. I feel infinitely better. NOLA is working with me and hopefully we can get some other stuff logistics worked out. They've been really good about everything. I hope they can get me in for a consult sooner rather than later.

glendag · September 2016

Nola worked with me on everything. It was very scary at the time to take the leap of faith. But they seriously have it down to a science. good luck with everything!

debiann · September 2016

Another thing to consider, which I didn't think of before having DIEP, is the loss of sensation to the stomach area. Yes, my stomach looks better, but when I husband strokes or kisses it I can't really feel it, or the feeling is prickly and strange. As you mentioned, the loss of nipples impacts your sex life, and for me, so did the tummy tuck. I'm pretty numb in the front now. I did regain some sensation in my breasts, kind of a V shaped area that includes the top of the breasts and in between the mounds. Happy for what I still have, missing what's gone.

Also, know that sometimes a small amount of muscle is taken even with a DIEP. I don't know the circumstances under which this happens, but my PS said he needed to take a postage size piece of muscle. Others have posted the same has happened to them.

I'm on the fence about how satisfied I am with the outcome. I like having breasts, I like the appearance, but I hate the numbness and I'm two years out and continue to have problems with swelling in the breasts and the belly. I'm seeing a PT for LE now. She said even though I only had two nodes removed, the surgeries (including the one to the belly) can still change the flow of the lymphatic fluid and cause problems.

glendag · September 2016

Yes! I agree with everything debiann said above. It does get better with time. Or maybe you just get accustomed to the changes? Having done the DIEP and then a few years later the GAP surgery, I think the GAP surgery was a much easier recovery and did not effect muscle in anyway. It might be something to ask NOLA about? It may depend on the size of your reconstruction.

javamama · September 2016

Thanks glendag and debiann for your wonderful responses. There is so much to consider in all of this. And I know outcomes don't always match expectations. I just think that if everything is great, then I wouldn't have cared if I felt rushed or uninformed or whatever. However, if my outcomes is less than satisfactory, I can see me kicking myself FOREVER for not slowing down and taking some time to carefully evaluate all the options, get second opinions, and generally do lots of research. Then make a decision.

Regret is a slow acting poison. And I want to do as much as I can to minimize any regrets I might have.

I don't think I will mind the numbness so much in the belly. That's never been an erogenous zone for me. Now a little lower... . lol My concern with numbness isn't sexual. But about my skin burning and me not realizing it. Or it getting frostbitten and me not knowing. It's the harm that can happen when sensation is lost that seems to be the thing that bothers me the most. But then again, with my nipples being such a hot spot, other parts of my body never really feel as good. That might change now. Stupid cancer.

debiann · September 2016

Never thought about accidently burning myself but I guess that could happen. I just did a little experiment with cold. Most of the foob area can't feel cold. On the belly, an area about the size of a dinner plate (beginning at the hairline), can't feel cold.

When you first get the new foobs it's weird whenever your chest presses on something, like a counter edge at a bank. It feels like you have a pillow on your chest. You can see you are touching the counter, but you feel the sensation under the mound, in your chest wall.

Good luck with your decision. I had lots of time to think and research about what to do during chemo and it's still a tough call to make. Every procedure has pros, cons and risks

javamama · September 2016

Yeah, I think the numbness is pretty common in procedures like this. Even elective tummy tucks and such have numbness as a result. My dad's finger is reattached and he experiences LOTS of numbness in the tip of it. He's almost burned it when grilling over an open fire. And he has to be careful with it in the winter. It's what made me think of that.

Yeah, less than a month to make ALL THE DECISIONS is just not enough time. Ugh.

HeatherHNOLA · September 2016

Hello! I am from NOLA and just had surgery 8/16/16. I had a bi lateral mastectomy with immediate DIEP reconstruction. Did you decide on your date yet? This surgery went well for me and I could not be happier with my doctors. Let me know if you need any recommendations.

Best of luck .... You will do great

javamama · September 2016

Thanks, HeatherHNOLA! I just cleared my insurance issues with them on Friday. Hopefully, we can move forward with a date now. Who were your doctors?

HeatherHNOLA · September 2016

Dr. Aimee Mackey was my oncology surgeon and Dr. Jules Walters was my plastic surgeon. BOTH have the most incredible bedside manners. My results are amazing too.

So glad your insurance went through! Yay!

javamama · September 2016

Ah, I think we are talking about different things, HeatherHNOLA. I'm going to the Center for Restorative Breast Surgery. Otherwise, I'd just use the surgeons here in the local Washington DC metro area. Many of the the people on here go the to Center specifically for their DIEPs.

I'm so glad everything went well for you!

LAstar · September 2016

Following up on GAP vs. DIEP, GAP vessels are smaller so there is a slightly higher probability of failure with GAP. I lost one of my GAP breasts to a slow flap failure due to necrosis and had to re-do with DIEP. Best wishes!

javamama · September 2016

Thanks, LAstar! I don't know why I didn't see this earlier. Probably my foggy cancer brain.

My surgery is set for October 18, 2016 in NOLA with Drs. O and W.

I want to thank everyone who has helped, weighed in, sent positive vibes, whatever. This is a journey that one should never walk alone. So... if anyone needs anything from me, please don't hesitate. Because I can't tell y'all enough how much I appreciate that y'all didn't let me walk this but myself. all of you!!!!

besa · September 2016

JAVAMAMA - I live in the dc metro area and , at the time when I looked onto it, I could not find anyone in the area (DC, MD including Baltimore, northern VA) who was doing more than around 15 GAPs/year and students (residents/ surgical fellows) often played a significant role in these surgeries.

I decided to go to The Center for Restorative Breast Surgery for my GAP surgery. The plastic surgeons there do hundreds of GAPs/ year and you have two very experienced ps working on you together which cuts down on O.R. time. In retrospect I am very happy with my decision to go to NOLA.

javamama · September 2016

besa- thank you so much for your response. I feel at peace with my decision to go to NOLA. The only thing that would prevent me is if my labs or EKG or whatever comes back and says that I can't. If for some reason I am unable to use my own tissue for reconstruction, I will go flat. I can't stand the thought of having plastic or silicon or rubber or whatever else they've come up with to simulate boobs into my body. Getting rid of cancer is me getting rid of things that don't belong in my body. I can't imagine I'd choose to put something into it that doesn't belong after removing something else that doesn't belong.

NOLA, DIEP Qs- Losing my Mind... HELP!

Comments

Categories