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Sunday, February 19, 2012

TMI: A story about boobs

In the sake of time and waiting for a video to post with my day ZERO post (ahem...James!!), I'm moving on to present day and getting everyone ready for tomorrow. Why tomorrow, you ask? On Monday, February 20...which may be President's Day to many of you... I will be having a bilateral mastectomy and reconstruction with tissue expanders. To some that's plain english, to others, it may be Greek so here's the low down dirty scoop...

Directly from Breastcancer.org, here is the very technical definition of bilateral mastectomy:

 (by-LA-ter-ul mass-TECK-tum-ee)
Surgery that removes all of both breasts.
Whew! Thank goodness I looked that up...it's so complicated! :) Here is a better description...
Mastectomy is removal of breast tissue to treat or prevent breast cancer. “Unilateral mastectomy” is the surgical removal of one breast. “Bilateral mastectomy” is the removal of both breasts. “Prophylactic mastectomy” refers to the removal of healthy breasts to reduce a woman’s risk of developing breast cancer. Bilateral prophylactic mastectomy is the most effective means of reducing a woman’s risk; however, the benefits of such surgery depend on each woman’s individual risk. Because even the most experienced breast surgeon cannot remove all breast tissue, a small risk of developing breast cancer remains after prophylactic mastectomy. Although effective, some consider prophylactic mastectomy to be a drastic way to lower cancer risk. A woman’s decision to remove her healthy breasts is highly personal. 


So, yes, this is highly personal, but as you all know by now, I am more than willing to share in the hopes that someone, somewhere can benefit from this and to help you all understand my decisions. I really don't have to have a mastectomy at all. The tumor was excised (removed) back in July when they thought it was a cyst. They didn't get clear margins (basically they know that there were still some cancer cells in the tissue surrounding the tumor) so they would need to go in and clean it up anyway. There are several studies showing that neoadjuvant therapy (chemo prior to surgery) in TNBC (triple negative breast cancer) patients nearly removed all cancer cells going into surgery. TNBC tends to respond better to chemo because the cells grow so rapidly. Anyway, they could totally do a 'lumpectomy' or clean up the excision and call it a day. But remember back to my explanation of TNBC forever ago? Well it tends to be more aggressive and more likely to recur than other types of cancer. In all of my visits with multiple docs, no one could really give me any numbers. I realize that removing both breasts seems extreme to some, but I DON'T WANT TO DO THIS AGAIN!!! I'm almost 40 years old and I could really use a new set of boobs anyway. My sister calls my current set my 'puny runner boobs' :) I full well realize that my new set isn't going to get me beads at Mardi Gras, but the reality is that to me, boobs are superficial. I hope the new ones are nice, but if they're not, I'll accept it as battle scars and carry on. Ask me about this again when I take off the bandages... maybe I'll change my tune. I'm not doing this to get my insurance company to pay for implants...or to increase a cup size...  I'm doing this so my kids have me around as they grow. And because I can. I get to make this decision. No one else, just me. And this is my decision. Bye, bye puny runner boobs...


The surgery is pretty complicated so here's how it's going down...


My breast surgeon (the taker offer) is Dr. Marilee McGinniss at KU. She is pretty amazing. As I started this blog post, I did some research on her and found out that she actually has her first degree in music and that she is a pianist. That actually gave me a sense of confidence in her abilities. She has an incredible bedside manner and I am looking forward to seeing her tomorrow morning. :) 


My plastic surgeon is Dr. Satish Ponnuru, also at KU. I was very skeptical when I was first referred to him simply because I had never heard of him and neither had anyone else that I asked. I felt like there were a lot of names thrown around and his wasn't one of them. Dr McGinniss says she loves working with him. After one visit, however, I feel really good about Dr. Ponnuru and I am also looking forward to seeing him tomorrow morning. Let's be honest, Dr. McGinniss has a big job (or little, depending how you look at it..hehe) ahead of her, but Dr. Ponnuru's work is what we'll really see at the end. He explained to me that Dr McGinniss is VERY good at her job so she takes a lot of tissue and leaves him with very thin skin to work with. It's a good thing for me and makes his job that much more important. I hope you have your game on, Dr. P!! :)


The first part of Dr. M's job tomorrow will be to set me up for a sentinel node biopsy.  This is typically a procedure done at the time of excision, but since my tumor was removed thinking it was a benign cyst, we had to wait until now to do it.


"Sentinel node biopsy is a surgical procedure used to determine if cancer has spread beyond a primary tumor into your lymphatic system. Sentinel node biopsy is used most commonly in evaluating breast cancer and melanoma.


The sentinel nodes are the first few lymph nodes into which a tumor drains. Sentinel node biopsy involves injecting a tracer material that helps the surgeon locate the sentinel nodes during surgery. The sentinel nodes are removed and analyzed in a laboratory. If the sentinel nodes are free of cancer, then cancer isn't likely to have spread and removing additional lymph nodes is unnecessary.
If, after sentinel node biopsy, evaluation of the sentinel nodes reveals cancer, then you'll likely need additional lymph nodes removed for your doctor to determine how far the cancer has spread."
...so we don't know if the cancer spread beyond the duct and into the nodes. They will do the biopsy while I am under anesthesia to determine if there are any positive nodes. If there are, they will have to do an axillary dissection where they remove a significant number of nodes in my underarm. For the record, I am REAAAAAALLY hoping that there are no positive nodes. I have had 16 rounds of chemo working on that cancer and if it's still there, it is NOT good. 
Next, Dr. M will remove both breasts. One obviously is trying to kill me and the other has the potential. The right breast is the bad guy so that will be the first one to go. They will do the node biopsy at that time. The left one is being punished for the right one's behavior so it will also be removed in what is referred to as 'prophylactic' mastectomy. Yes, we've all heard the word 'prophylactic' before...it's preventative, it does not mean they throw a condom on it. ;) 

Expansion process
My temporary breast implant, hard as rocks!
Once the girls are removed, Dr. P will get to work putting them back on. There's a procedure called TRAM flap surgery that involves liposuction from the belly to rebuild breasts but since I don't have enough belly fat, that is not an option. I appreciate all of you who so graciously offered to donate yours :) The option I chose is tissue expanders followed by silicone implants. During surgery, Dr. P will rebuild the breasts using Alloderm. He will then insert tissue expanders to stretch the skin over several weeks, months to accommodate the future implants.  After surgery, I will go in once a week to have a 'fill' until we get to the size I'm happy with...then we schedule surgery to get my silicone implants!  For those of you wondering how big they'll be, I guess you'll just have to wait and see! 
I know I've made this all sound so nice and simple, but in all reality, it's pretty much going to suck. The surgery will take a minimum of 6 hours and quite possibly quite a bit longer. I'm scheduled to be there at 6 with surgery starting at 7:30, but I've been prepped to do some waiting to get started. Since there is no live tracking (like in a good ultra! We should have planned with ultralivenet.com to get updates... darn!), you'll have to rely on Facebook updates from my Mom and my cocoon. They've let me know that they will visit with my family every hour to give them updates.  I will be in the hospital Monday night and probably Tuesday as well. If I come home Tuesday, it will be late afternoon/evening. So... this is the last blog post until this surgery is over. Now, I'm going to go run errands and spend the day with my Mom with a nice dinner out tonight. Thank you to each and every one of you for the well wishes, the support and the friendship. I love you all!!
xoxo
Shelley aka "EE" 
*For your convenience, all colored words are links to get more information on my docs and Alloderm


       

5 comments:

  1. I've never read anything like this - thanks. So informative and couldn't be from a better perspective - you. I envy your ability to stay concise and on the point, but still keeping your personality in it. :)
    Bestest of all wishes for you tomorrow -- everybody brings their A game.

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  2. You are amazing and wonderful and so incredibly strong!!! You will be in my thoughts tomorrow. Sending strong and steady hands to everyone tomorrow!! Love ya!

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  3. So, tomorrow's the BIG day. Another stride on the trail to forever riddin yourself of that fuckin'"C." Soon you'll be strutin' around with a BIG set of knockers leading all the boys around by their noses (not that you weren't doing that already).

    Once again, you'll be there to run (and fall) with us on the trails. Now, I realize that once your back to full Shelley strength you'll be winning races again and will probably start spending all your time with the cool kids. But, we'll be glad to have you back anyway, because we miss you somethin' fierce.

    Most importantly, you'll be around for a long time to watch Annika and Josh grow up and make you proud, to have your family annoy the livin' hell out of you, and to keep all of the rest of us company as we grow old together.

    We LOVE you.

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  4. You'll be in my thoughts today Shelley! I hope your surgery goes as smoothly as possible (thanks for sharing that wonderful explanation) and your recovery is swift. Your strength and sense of humor through all of this has been so inspiring!

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  5. Hello shelly!!! My name is Jessie and I am scbeduled for my PBM with Dr. Connor and Dr. Ponnuru next month. I have some questions if you would want to talk. My email address is jswish2001@gmail.com. Thanks!!!

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