Monday, July 20, 2009

We can rebuild her, we have the technology...

For those too young to know, the post title was inspired from the 1970's TV series, “The Six-Million Dollar Man” ...though perhaps it’s offspring, “The Bionic Woman” would be more apropos in my case.

This post will be about the actual procedure I’m having and go into alot of detail. So be forewarned if you are uncomfortable about surgical stuff or bored by the whole technical side of things. (There are some links at the end if you want to see some photos)

I wanted to put a comprehensive blog entry out there with all the specifics for a few reasons: in case anyone following this is curious...or unfortunately really needs the information because they have breast cancer...and also because breaking it all down scientifically helps me to both face it and deal with it. Strangely enough it calms me to convey this information.

I'll be having a unilateral total skin-sparing mastectomy with sentinel node biopsy and immediate pedicle TRAM reconstruction. Yes, it's a big impressive name when you put it all together...it's also a big impressive surgery so I’ll divide it up into the separate parts…

TOTAL SKIN SPARING MASTECTOMY -- when this term includes the word "total" it usually refers to preservation of the nipple areola complex (NAC) and the outer skin of the entire breast. They simply take out all the interior breast tissue, all the way up to the clavicle, and leave what they call an empty envelope of skin, to be re-filled immediately during the same operation in the reconstruction phase of the surgery.

In order to access all the inner breast tissue for removal they make an incision in the inframammary fold, that crease right under the breast that really doesn’t show. It should be about 4 inches long and won’t be visible unless I lift my breast up (and at my age trust me, there’s enough droop to hide the scar!) ***I ended up going with a different incision in order to ensure the surgeon had better clearance to get clean margins, cancer-wise. The incision was on my breast to the side of my areola by my arm. It also gave the surgeon access to my lymph nodes so no seperate incision was necessary for a sentinel node biopsy.
To see if nipple/areola preservation is possible they will sample the back of my NAC by removing tissue and testing it for microscopic cancer cells right then and there while I’m on the operating table. If it’s negative for cancer cells then the NAC stays put. If there is cancer present then one of two things will happen -- depending on how pervasive the cells are they may simply remove my nipple and leave the areola (it’s technically just skin and not breast tissue)...and later I can have a new nipple created. Or, if the cancer cells are too near the areola surface, then they will make what’s called a circumareolar incision cutting around the perimeter of the areola and remove the whole NAC. What will fill in the circular hole then created will be skin from my abdomen that can later become part of what’s turned into a reconstructed nipple & areola -- as closely matching the remaining one of the unaffected breast as possible.

SENTINEL NODE BIOPSY -- A sentinel node biopsy removes the first couple of lymph nodes under the arm to test them for cancer cells. If they test positive then more are removed. It is possible to need all your lymph nodes removed. To locate the sentinel nodes they inject either a blue dye or a radioactive tracer right before the surgery (depends on doctor preference). They will make a separate incision under the arm to locate the first node(s) and remove them. The results of the sentinel lymph node biopsy is part of how they determine what stage cancer you have and how likely it is that it might have spread anywhere else in your body. IMO it is one of the most important parts of this surgery, save for removing the cancerous tumors themselves. To learn more about lymph nodes check out this link.

After all is said and done in all likelihood my entire breast will be rendered permanently numb from all the nerves being cut, tho it is possible to regain some skin sensation it is not usually quite like it was before. In terms of the nipple, it will not have sexual sensation but will react to temperature changes and maybe somewhat to touch. It is quite possible that the NAC or part of it will not survive the surgery due to lack of blood supply from all the tissue removal. This is known as necrosis (tissue death).

On to where they rebuild me…

THE PEDICLE TRAM -- The initials “TRAM” stand for Transverse Rectus Abdominus Myocutaneous. Simply put – they take a portion of muscle, fat, and tissue from the abdomen, then tunnel it all the way up under the skin beneath the chest and into the empty breast envelope from underneath – all the while the main blood supply stays attached via the pedicle.

All I can say is thank goodness for a self-activated morphine drip!

Anyway, the results for my abdomen will be like that of a significant tummy-tuck. There will be two incisions that meet at the ends, one an inch or so above my navel (which will be removed and relocated) and one just above the pubic region. Both incisions will be hip to hip, sort of like a giant ellipse. All the flesh, fat and whatnot between those two incisions will be removed except for the part used to fill the breast envelope.

In regards to the belly, I once read someone likening it to the effect of pulling down a window shade. After the pedicled flap is placed into the empty breast and the excess tissue discarded, the muscles will be sutured and the remaining abdominal skin will be pulled together taut to create a single hip-to-hip incision sutured below the bikini line. In my case, thanks to my major weight-loss, the incision will probably go about halfway around the circumference of my body. Oh, and at the end they will sew my old navel back on the new abdomen.

Eventually the long pedicle that encases the blood vessel running underneath my skin from my abdomen to my new breast will atrophy and shrivel so that the healthy vessel settles into it’s new home, but for a while I may temporarily have a bulge there until it does. I could also suffer from a hernia where the abdominal muscle is removed, which can be surgically repaired if need be. I may have to undergo physical therapy to encourage the process of other ab muscles compensating for the lost section of rectus abdominal muscle.

So, that’s the whole deal, surgical speaking.

Needless to say it again, but this is fairly massive surgery. Implants would be A LOT easier. However the benefits for me and my personal lifestyle are worth it, in my opinion. A breast created out of my own tissue will age with me, droop and fall naturally, be warm to the touch and never need to be replaced. Ostensibly if all goes well this reconstruction process is a one time only procedure…a revision is sometimes needed for final “tweaking” – however that is typically either comparatively minor surgery or even an outpatient process. Either way, unlike implants, once you’re finally done, you’re done for life. This is important because avoiding a future of repeated surgeries means minimizing risks of surgical induced blood clots...a necessary consideration with my genetic mutations. So, bigger risk/ordeal now eliminates risks in the future as I age.

My understanding is it can take months to recover fully from this, but everyone is different. I will hopefully be out of the hospital in around 7 days, depending. Because I will have a team of three doctors working on me at the same time, two plastic surgeons and 1 breast cancer surgeon, the operation will hopefully only take about 4-5 hours. Traditionally this procedure would take twice that long.

Well, okay...that’s IT, everything (and probably waaaaay more) you ever wanted to know about unilateral total skin-sparing mastectomy with sentinel node biopsy and immediate pedicle TRAM reconstruction, but were afraid to ask!

Here’s a link if you’d like to see some before and after pix I found online. None of them are nipple sparing but there’s nothing gruesome whatsoever, tho there is obviously nudity: TRAM reconstruction. And here's a general search page with many pictures -- some include graphic surgical images.

It is my hope that this info and following my saga might help others. When I make it thru and am done maybe another woman facing this same or similar daunting process will be able to learn even a little from my story...and see that in the end it will be okay. I've been HUGELY comforted by others who have shared their own tales and in gratitude this is the least I can do...to add to the collective voices.

8 comments:

Brenda said...

Great post. I agree with you, it really helps to write this stuff down. I don't know if I just missed it, but when are you having this done?

Imogen Lamport said...

Great information. I think reconstructing from your own flesh is the best and most natural way to go. All sorts of things can go wrong with implants, and that is the last thing you need.

Good luck with it!

Modest Mom said...

We're still praying for you. Thanks for sharing thei nformation because we never know who may need it.

Chuck Dilmore said...

Kayleigh,
you are not only conquering,
you are holding the door open
for those who follow you...

that they may learn.
beautiful.

you sound wonderful!

i know you will own this, win this.
because i know you!
peace~ Chuck

Mervat said...

I don't know how I would react under such circumstances though a big dark room and a heavy doona to cover my head with come to mind. You however have not only become informed yourself but you are now spreading that knowledge. What a wonderfully generous person you are. I hope all goes well, with as minimal discomfort to you. And know throughout it all we will be waiting to hear/read that you are well enough and on the road to recovery.

With all my love and best wishes to you dear K.
xxoo

PS Happy birthday to darling Meggie too.

notSupermum said...

K, would you believe that I actually watched a TV program last night about breast cancer and a doctor performed a 'skin saving mastectomy'....I saw the bit where they cut the skin off the woman's back and tunnelled it under her skin until it could be pulled up through the breast - totally amazing. I thought it best to record the program, and I've taken notes so just incase your chosen doc falls through I could fly over and have a fair bash at it myself. I'm pretty good with a sewing needle, so I'd could tidy up pretty well. :-)

Btw, I think I may be a little in love with Chuck ^^ he always leaves the most amazing comments. If I wasn't already past it I might have offered to have his babies.

Kari said...

Kayleigh, that sounds very smart for you and for your needs. But in response to your more recent post - given the near-equal odds and so many unknowns, truly it sounds like the most important thing is to select the option that will give you the most peace of mind *and* best chance of recovery.

The women I knew who had reconstructive surgery had double mastectomies, so implants *were* easier because both sides could be treated/replaced at approximately the same time, but the surgery you are planning on sounds like it would be better for preserving symmetry since it is only focused on one breast.

Lots of positive thoughts to you.

Kari said...

Kayleigh, that sounds very smart for you and for your needs. But in response to your more recent post - given the near-equal odds and so many unknowns, truly it sounds like the most important thing is to select the option that will give you the most peace of mind *and* best chance of recovery.

The women I knew who had reconstructive surgery had double mastectomies, so implants *were* easier because both sides could be treated/replaced at approximately the same time, but the surgery you are planning on sounds like it would be better for preserving symmetry since it is only focused on one breast.

Lots of positive thoughts for you.