Wednesday, January 31, 2007

If it's broken... fix it...

posted Wednesday, 31 January 2007

Many of you have heard me talking about scheduling my next surgery for mid to late January... well, here it is, January 31... and I have just now finally scheduled my surgery. It was not an easy process: working through the options, wading through insurance issues and deciding on a course of action... but the decision is now made and I am comfortable with it.

Surgery Details:
Lattisimus Dorsi Flap
February 16, 7:30am (expected stay 2-3 days... I'm hoping to go home on Sunday)
Chester County Hospital, West Chester, PA


Backing up a little, I'll explain to you how I arrived at the decision for the Lat Flap. If you spoke with me over the past few weeks, your initial reaction might be a bit of surprise, as I was pretty far down another road a few weeks ago.

After my mastectomy (last January), my plastic surgeon placed "tissue expanders" in each breast. These expanders were like deflated balloons, which would be gradually filled with saline over time, stretching out the muscle & skin, to reconstruct the breast. In February, the incision in my left breast opened back up - basically, after 3 surgeries on this breast, the skin was so thin and wouldn't heal appropriately. The expander had to be removed. The right breast healed ok though. Over the next few months, we gradually filled the expander and, in November, I had an exchange surgery, replacing the expander with a permanent implant.

Unfortunately, the thin, tight skin that has been left on the left side is not enough to hold an expander. My only reconstruction option is to take skin from another part of my body. The most common method is a TRAM flap. This surgery takes skin, fat & muscle from your stomach... leaves the blood supply connected and tunnels the "flap" up to your breast, where it is sewn into the existing incision to reconstruct the breast. Unfortunately, side effects include risk for hernia, etc and my active lifestyle makes me reluctant to compromise my core strength. The next alternative is the LAT flap, which uses the skin & muscle from your upper back. Neither seems like a great option - the LAT seems like the lesser of two evils - and I have been reluctant to go through with it. In January, as I met with my plastic surgeon to prep for surgery, he mentioned that there was one other option that I might wish to consider.

Specialized surgeons do a procedure called DIEP or free flap reconstruction (they do not take the muscle, rather, they dissect the blood vessels and reconnect the flap into the breast via microsurgery). He referred me to a dr in PA, who, coincidentally, started his practice at Strong Memorial, in Rochester (near my childhood home). This seemed like it was meant to be, so I left feeling hopeful - perhaps this was a sign... unfortunately, this dr couldn't see me until late Feb for a consult, meaning the surgery wouldn't happen until March or later. I found another dr in Great Neck, NY and made an appt to go see him. I liked the dr and the staff and nearly decided to go with this procedure. A few things were leaving me uneasy though, particularly the unknown risk that my insurance company would only pay for 1/2 of the nearly $100k surgery, as this dr was not in the network (I might as well buy a boxter if I'm going to spend that kind of money!) Plus, I had to put a down payment on the surgery!

The insurance rule was that they will pay in-network rates to an out-of-network dr, provided that nobody else in-network does the procedure within 50 miles of me. So when I called the insurance company to find out whether anybody does this procedure near me, I was told that they can only give me a list of in-network plastic surgeons... but they could not provide an indication of who does this procedure. The list was 60 drs long! So Charlene and I spent an afternoon calling up drs offices and researching this procedure. My favorite conversation was with the nurse at a local office

• Nurse "Sure - they both do all the procedures"
• Me "Ok, well how many of the DIEP procedures have they done?"
• Nurse "Oh - they don't keep a running tally"
• Me "Ok, well if I were to come in for an appt, which dr should I see? Which has more experience?"
• Nurse "That's really irrelevant"

Irrelevant... that's right... knowing how much experience a dr has before allowing him to cut into you is totally irrelevant.

When I finally got to Dr Wingate (of course, the list was alphabetical), they told me that a new surgeon had just joined their practice. He is in-network & he has lots of experience with this procedure... excellent news! I made an appt and went in for (yet another) consult. I was a bit taken aback when he walked in (given that he is closer to my age than any dr I've ever had), but he really set my mind at ease, explaining his experience (fellowships, etc) and his passion for helping breast cancer patients with reconstruction. This means a lot because the $ is really in cosmetic surgery, where insurance doesn't pay (so prices are higher)... He asked me questions about me and really seemed to be thinking through which procedure would be best for me (as opposed to which would be best for him & his career). His feeling was that while DIEP is a great option for many women, I don't have much stomach tissue (I like him already)... and they'd have to pull my abdomen really tight to get adequate tissue. This would make recovery difficult, but would also be a challenge if I was able to get pregnant one day. Also, they would have to take the "tissue flaps" from both sides of my tummy to create one breast -- in doing so, they would have to link into a blood vessel under my arm, which, God forbid the procedure fail, would eliminate the option of a future LAT flap...basically, leaving me out of options. He left the decision up to me, and suggested that if I decided on the DIEP, I may want to go back up to the "big gun" in NY... his openness really comforted me and instilled trust that he was truly looking out for my best interests.

So, there you have it... if you are still reading, wow! I'm not sure that I would have read through that entire long story, but I guess it sometimes helps to just sit down and put it all out there... it's one of my coping mechanisms, regardless of whether or not others read through it all. Good thing I am trained on the "pyramid principle", so even if you only got through the first few paragraphs, you'd get the high level summary... :)

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