Wednesday, November 27, 2013

MY Breast Reconstruction Options

I have been asked a Warning peeps...we're getting a little bit more graphic then I normally do on the blog. But I've had a few friends ask me to share more information then what I can in an email or message about my breast reconstruction options.

First off, so many people have asked me when my surgery date is...well it's Monday, December 9th. Nothing like kicking off my holiday celebrations recovering from a major surgery right? I will be having my surgery done at Huntsman Cancer Institute, which is part of the University of Utah Medical Service facilities and the best around. The two surgeons performing my surgeries (I made this plural because one surgeon starts my surgery and the other ends it) are two of the best in Utah. Dr. Neumeyer will be performing the actual mastectomy (removal of my breast tissue) and Dr. Agarwal is the Plastic Surgeon that will be doing my reconstruction and the doctor I will most likely see the most.

Second, many, many of you have asked about the reconstruction process... so the remainder of this post will address that topic.

Reconstruction Option 1: DIEP Flap sugery - Love the idea of replacing the fat from my abdomen into my breast...not like I need to keep it there. I also like the idea of having parts of me relocated so I don't have to have foriegn objects in my body. Another plus (or minus) is that the breast do get smaller with weight loss (or larger with weight gain)...unlike having implants. However, I quickly learned that I am not be able to do this because of being overweight. Who would have thought I'd have too much fat. One plus is I won't have two surgical sites (abdomen and breasts). I understand that heavy girls like me also a harder time with recovery and run the risk of complications. Another drawback to this surgery is it requires a much longer surgery almost double then that of option 2 up to about 10+ hours. Honestly I was crushed when I first learned that I didn't qualify for this reconstruction, but I am totally at peace with it now.

Reconstruction Option 2: Implants...not what I ever thought I'd need or want. But this was my plan B and at least my tata's will be relocated to where gravity won't mess with them any more. This process requires them to push my pectoral muscle away from my chest wall to create a pocket to place the implants. In order to make room then will put "implants" in place to start stretching the muscle out. I've heard people refer to this as having a charly horse in their chest...I'm hoping this is not true. The process of being expanded could take anywhere from 3-6 weeks, or possibly a bit longer depending on how my body recovers from the mastectomy. Honestly, I'm not excited about a the weeks of having expanders placed and having to drive up to Huntsman to have them "filled" over that time. But my sistahs that have gone through cancer sometimes have to suffer with the expanders much long there this because of radiation and other factors. Once I'm filled to the size I'd like to be, they will schedule a second surgery to place replace the expanders with the final IMPLANTS. This surgery is called and exchange surgery.

After both surgeries I'm told no lifting at all for 6-8 weeks. Not sure about other restrictions yet.

Let's talk Implants real quick, since I get asked this one all the time too. Saline or Silicone? Mine will be silicone implants. Next question after that is, "Isn't silicone dangerous if they leak?" Well back in the "old" days when silicone implants would leak or rupture they would leak a silicone that was the consistency of syrup. Some thought this would cause breast cancer and other auto immune issues. They were pulled from the market until tested and when they found that they were safe they were put back on the market. Now days they are much better made and are typically called "gummy bear" implants. That means when cut open then have the consistency of a gummy bear. No more leaking of silicone, etc. My plastic surgeon said they're made to last much, much longer and some even a the lifetime of the percipient.

Any I know you're all wondering and would be among those that would ask me, "No, I am not sure what size I want to end up."

Wednesday, November 20, 2013

Gambling with Cancer / BRCA1

I had a dear friend put his arm around me one day and ask me, "Are you sure you really need to do this?"

My response was calm and simple. First I realized he most likely has not visited my blog and read about what this meant for me or about how I came to conclusion that having the preventative surgery was something I was very SURE about. But I decided to break it down in man speak for him....

I simply asked him this...

If I told you the airplane you were flying out had an 87% chance of crashing...but of course there is still that 13% chance it would make it to it's destination ...would you take it? His response was, "No way!"

Now if I told you we had another airplane with a 95% chance of getting safely to it's destination, would you take it. He said, "Absolutely!" I explained that this was just what I was faced with and I liked the odds of reducing my risk of getting cancer over my lifetime to about 5%...lower then your average woman my age.

And if you've been reading my blog you know I have an approximately 87% chance of developing breast cancer, in which led me to the decision to have my prophylactic double mastectomy and reconstruction. This option allows me to strike first, have the surgery I'd have to have any way and skip the chemo and radiation.

I loved this example of "gambling with cancer" I read somewhere and saved to share here on the blog (sorry forgot where it was from). "If someone responded with a comment about there being a 13% chance I wouldn't get cancer....I asked them if they would gamble $1000 if they had an 87% chance of winning, every single person said yes. Then I asked if they would still gamble with a 13% chance of winning...they all said no. So I said, I'm not willing to gamble with an 87% risk that something bad is going to be the result. If I had an 87% chance of winning the lottery, I'd be buying a large stack of tickets, but this ain't the kind of lottery I want to win."

Thursday, November 14, 2013

BRCA1 Questions I Have Been Asked

On November 5th I decided to post this image to my Facebook status and let the world know that I am BRCA1+ (since only a small handful of close friends and family knew). What followed was....

An overwhelming out pouring of love from friends all around the WORLD! Hundreds of beautiful comments were shared with me on Facebook, and so many more private messages, emails and texts were sent to me with love, good vibes, prayers and kindness. I C-R-I-E-D and spent hours answering emails and listening to people share their story, their family history and answering questions.

In addition, each time I attend a gathering of friends, attend church or visit with long time friends I'm asked many of the same questions. I do not remember who I tell what to and certainly don't think I'm an expert, but I decided that my best form to answer those questions to many people all at once would be to post them here on the blog. I'm also hopeful that someone recently diagnosed with BRCA will find some information and comfort from what I am sharing here. 

List of Common BRCA1+ Questions:
(and some not so common)

1. When is your mastectomy surgery? 
December 9, 2013

2. What made you get tested for BRCA1? 
In 2010 my cousin was tested after her mom had been told she was BRCA1+. My cousin learned that she too was positive and they felt they needed to inform the "family" about it. Sadly they thought my father had contacted me about getting tested. Not knowing he was no longer speaking to me, my aunt and cousin learned in 2011 that I was never told about the test. So armed with their test results I asked my OB/GYN in 2012 if I should be tested and he didn't feel it was a worry for me (see number 2). It wasn't until a dear friend learned that I was considering being tested that she tracked down the contact information at Huntsman Cancer Institute for their free Genetics Counseling that I finally went up and was tested. The test required me to go through a "family risk assessment" session with a wonderful lady named Wendy (she's been one of my angels). Based on my family history she told me I qualified for the test, but she then explained to me on what that meant. Including my risk and options should I be positive. Then my blood was drawn and sent to a lab to be tested. It took about two weeks to learn my results.

3. You can't get "breast" cancer from your dad's side of the family, right? 
Wrong! BRCA1 proves that in my case especially. The BRCA1 gene that I have was passed to me from my dad and the family history on my dad's side of the family was what qualified me for the test. They did not care if it came from my mom or dad's side.

4. Why should men be tested for the BRCA gene mutation? 
Although they primarily "carry" the gene and pass it to their children it can increase their chance of getting prostate cancer by a small percentage. I wouldn't say that is a reason to be tested for a man, but in my brother's case he should be tested to find out if his daughter could be at risk. He is however waiting until his daughter is older before he is tested.

5. Is Dense or Fatty breast tissue more likely to develop cancer? 
This was a question I had no idea about, because as I've mentioned before I do not actually have cancer. However, I was curious at this question and thought I'd look it up. So according to the Susan G. Komen website it states, "Women with high breast density (as seen on a mammogram) are four to five times more likely to get breast cancer than women with low breast density."

6. Does your daughter have to be tested? And what does she think about all of this?
Yes she will need to be tested (as well as my son eventually) but she will not need to until she's about 25 years old. They do not feel it's medically necessary to have her tested until then and should she be positive they would most likely begin her mammograms early and increase to more radical screening until she's older. But since I'm positive she has a 50% chance of being positive and I am praying her results come back negative. As for what she thinks about all of this? She isn't worried about her getting cancer or being positive. But she is scared about me having this surgery. She doesn't know what I will be like and I think she's worried she'll have to help me out A LOT because her dad won't be here all the time. I assured her she won't have to help me shower or cook and clean all the time...her dad will step up (he better)!! And it is hard for her to not be able to talk to her friends about, they aren't interested and don't know she's scared and worried for me. But she does know I'm doing this so I can WATCH her grow up and become a mother and have my grand babies.

7. Am I having my hysterectomy/Oopherectomy or mastectomy surgery first?
A lot of BRCA1+ ladies choose to have the Hysterectomy/Oopherectomy first because the recovery is shorter. But because my insurance deductible and out-of-pocket limit almost triples in 2014, I decided, with my husband that having the larger, more expensive surgery in 2013 was going to work better for us. Merry Christmas to me!

8. Do I get to pick the size of my reconstructed breasts?
Of course, but other then knowing the "type" of reconstruction I'll be doing I haven't yet spoken to my Plastic Surgeon about size. We work "up" to the desired size over several weeks of doctor's visits (I'll explain more about that in another post).

9. Do they do the reconstruction later or at the same time? 
A little of both...they will do the mastectomy (remove the breast tissue) which will take the bulk of my surgery (up to 5 hours) and then that surgeon and team will leave the OR and the Plastic Surgeon and his team will come in and place temporary expanders behind my pectoral muscle and close me up. The overall surgery is expected to take 5-6 hours. I will then go through a series of weekly visits to expand (stretch out that muscle and make room) and then about 6-8 weeks later have a SECOND surgery where they will remove my expander and replace them with my implants.

10. Do I need to have Chemo and/or radiation?
No, because technically I do not yet have cancer. I sort of get to "skip the line" and go straight for the surgical option. And my friends and family that have gone through both chemo and radiation tell me they would do the very same thing to avoid going through it. I watched chemo eat away the man my father-in-law was and I would like to avoid that at all costs!

11. You are having a hysterectomy too? 
Yes and No. Many BRCA1+ patients opt for the full hysterectomy after talking it over with their OB/GYN. However, after I met with mine, we decided to only have what is called a Bilateral Salpingo Oopherectomy...aka having my both of my tubes and ovaries removed. I opted for the lesser surgery because it  resulted in less blood loss and shorter recovery. I figured after having to undergo the double mastectomy, that I probably would have had enough. I will doing this surgery on FEB 18, 2014...Happy Birthday to me!

12. Can I cast your before and after breasts for an art exhibit?
This question still makes me giggle. It was a serious offer from a local artist and although I was completely flattered, I will have had a lot people touching my breasts leading up to & following my surgery, so I passed!

13. Are you happy that you'll have perkier boobs? 
Honestly, I have to say this question annoys me a bit, but it entirely depends on the person who asks me. What most people don't understand is that I will no longer have any feeling in my breasts because they remove the nerves with the breast tissue. I will have a large "T" shaped scar running along my breast and no nipple. I've heard other BRCA1 positive peeps refer to their newly designed breasts as "Foobs" or "Frankenboobies." So honestly under my clothes I will be happy that they're pointing out, but in the shower maybe not so much. 

14. Does my insurance pay for these surgeries (specifically the reconstruction)?
Actually they do cover the cost of these surgeries including breast reconstruction. Of course I will still have my portion to pay for these surgeries and it won't be cheap. But for more detailed explanation of why insurance companies are "required" to cover these you can read more here, it tells about the Affordable Care Act.

15. Do I get to keep my nipples? 
I really do get asked this... Some BRCA patients are offered the opportunity to do what is called a "nipple sparing" mastectomy. However, I will not be able to. A lot of things affect this being an option, but lets just say that gravity has not been kind to my breasts and therefore in order to remove the breast tissue they will have to remove my nipples. So I will have what many before me have lovingly referred to as "barbie boobs." I haven't learned my nipple reconstruction options, but I have had others offer to donate theirs or we've talked about a big girls weekend in New Orleans for me to get 3D Tattooed nipples by the famous Vinny Meyers (yes really, he's famous among mastectomy patients...and YES they look 3D).

16. Do I need help decorating for the Holidays? 
 Actually no, I'm good. My kids are teenagers and can coach their dad on how to set it up. I am "that" mom who doesn't let the kids help decorate and this year it's all theirs. I actually think they are looking forward to it. I may decorate the porch and my little corner of the bedroom myself, because who doesn't love to have a Christmas Tree to aid in their recovery.

17. What is your address? 
Sadly I'm not going to post this to my blog. If you are a friend or relative that simply needs to update their contact info or send money (wink), please email me for that information. And of course if you know me, I'm not one for surprise visitors. However, I would love ANY snail mail love so you're welcome mail it to my work address at:
My Craft Channel
Attn: Lori Allred
1460 North Main, Suite 1A
Spanish Fork, UT

18. Am I Scared?
Absolutely petrified. From the moment I learned that I was BRCA1+ to this moment writing about what I've learned so far. No one fully understands what I'm experiencing except other "Previvors". And no matter how hard I try to explain the physical and emotional suffering I am experiencing, no one will appreciate the gravity of the situation. Most people have zero idea the depth and magnitude of what I am are going through unless they go through it for themselves. So I will close by sharing something a friend wrote me recently that I could not even try to express as well as she did....

"Be scared poopless. This IS scary. Cry. This will hurt. Curse. This will frustrate. Scream. This will infuriate. Ask; why me. That's OK. But remember; at the end of the day. This WILL improve your quality and length of life. Smile. This WILL enable you to attend your children's marriages. Laugh. This WILL enable you to hug grand babies. Love. This WILL enable you to deepen your love and appreciation for your husband, family and friends."
Whew...I think I got those all answered (and few tears were shed). Remember that their is a RESOURCES "tab" at the top of this blog post under the header that has helpful links to learn more about Breast Cancer, BRCA testing and information. But let me know if I missed anything. You can leave a comment below this post with any additional questions and I'll try to answer them the best I can.

Sunday, November 10, 2013

My First MRI Experience... Not So Sweet

My first MRI experience took place only a few days ago, but left me out of sorts a bit. Why had no one told me what it would be like or was I just being a big whiner about it all? So I asked on a Facebook group I am privileged to be a part of an only a few commented about the MRI and one lady mentioned after doing them for five years as part of her radical screening in place of PBM that she finally decided to get the mastectomy so she didn't have to go through the MRI once a year for the rest of her life.

So, I was told by many that the MRI machine was loud, that they would have me lay face down and my breast would be "cradled" in coils, and that I would "be the filling I a big cannoli".
Well I definitely went into the appointment with a "no big deal" attitude and I think the not knowing was what ended up being to my detriment. All I can say is looking back it "should" have not been a big deal.... But it was. Probably not the biggest deal but it made everything I am doing leading up to my surgery seem so maybe that is why I had a hard time with it.

So let me try and describe what to "expect" of you are reading this hoping to be better prepared (then me of course).

First, I was asked to change into one of the lovely hospital gowns with snaps on the shoulders and it open in the front. They would have given me hospital pants (didn't know they had those), but the girl looked at me and said they don't have any comfortable ones for me (aka big enough for me). Lucky for them my mom told me to wear my stretchy lounge pants that don't have any metal in them..score I got to keep my own bottoms on!!

Second, they led me down the hall to a room with a second smaller room MRI room inside of it and opened the big pressure release door to reveal the actual MRI machine.

But what I wasn't really prepared for was the contraption the were going to have me lay in with my breast hanging down through openings, that were not coils and they were not cradled. The breasts were fine, it was the sloping portion of the machine that went from my belly to my chests and all the pressure hit my ribs and sternum. It was uncomfortable instantly and pain started to radiate through my back. But I am pretty sure I could have handled the physical discomfort and the two attempts to insert an IV in me so they could eventually release a liquid contrast that would help them better photograph the girls... however, it was the mental part that eventually knocked me sideways.

You are asked to NOT MOVE at all or run the risk of having to start the process again. They do give you a panic button, but again warn you that if they have to stop I will have to return another day.
This is not me...but what I would have looked like had someone taken a photo.
The bed is lifted up once the patient is in position and fed into the tube feet first.
This photo doesn't show her with an IV for the contrast solution or the panic button.

Here's a side view with clothed model...still not sure if arms
up over head or down along sides would have been better.

One note worth mentioning is I do experience PANIC attacks on occasion. It seems to be when I am stuck in a situation or location that I cannot see or understand the being shoved in the Vatican with thousands of people shoulder to shoulder and not knowing how to get out (yes this really happened). I am not sure if I would call it claustrophobia or not, but the panic attack is not the funnest side affect of being in this situation.I did start to experience the onset of a panic attack but held it together and totally lost it when I got to the dressing room. I couldn't talk to my mom until we got out to the car and I'm not sure she completely understood me until I stopped crying.

So the process of having an MRI takes about 45-60 minutes from set-up to finish. The actual "hold still" is done in chunks of time that are 4, 5 and 9 minute chunks and alone would be tolerable but the longest chunk of time is at the end when you are completely stressed, tired and want out. It probably was good I was face down, I couldn't see how tight the fit was as far as being the "filling in this metal cannoli"...but I could "feel" my butt and back touch the top of the interior of the machine and kept telling myself it really wasn't that small.

In hindsight I do believe my tendency to experience panic attacks probably was what resulted in my not so fun experience. But I will tell you the next time (if there is one) I am going to request some Valium or anti-anxiety meds and the biggest MRI they have (UofU has two sizes and I am sure I was in the smaller one). Oh and I'm not going to do the "calming" music mix of Adell and Sara Barellis...I'm going full on PINK. I think louder upbeat music with a bit of rebelliousness to it would have help A LOT!

Friday, November 8, 2013

A Hug is All You Need

This past Tuesday was my visit to the plastic surgeon (PS) and the first visit Kirk could come to. Nothing is more fun then having a couple make doctors exam me while Kirk sat watching but I have a suspicion that I will learn to let that go sooner then later. The PS was very nice and went about explaining the best reconstruction options for me and then he proceeded into the potential risks of this surgery. Like any surgery the " what ifs" are pretty scary but I have faith on my side to know what I am doing will all work out. You know the popular quote, "it won't be easy but it will be with it."

I did however hope for more of a ceremony or fan fair about the process of having my breast removed and reconstructed. However the doctors acted as of they do this all the time and it was so matter-of-fact sort of experience for them. They wrapped up their well rehearsed presentation of what would and could happen, they ended with, "okay we will are you on the 9th." That was it! I shook their hands and bid them farewell until that fateful day that would forever change the way I looked at physical body and so much more. Then the nurse, Heidi, who had sat through this visit and my earlier one with the surgeon that would perform the mastectomy; walked up to me and opened her arms to embrace me in a sweet and loving hug and replied with  
"you have been so brave, but you
looked like you could use a hug."

I left with a feeling of hope, rather then despair and so love the nurse named Heidi for giving what I didn't know I needed at that time.

Monday, November 4, 2013

How Big is Your Brave? An Answer to a Prayer

I seem to have left out an important part of "story" and that is my belief that God has a plan for me. I know He is aware of me and my struggles and I know my Savior is with me always. However, that has not stopped me from doubting in myself and my decisions recently.

I have to say learning about being BRCA1 positive really has made me reflect on my relationship with my Heavenly Father a lot. I have prayed so much to know what I'm doing is the right thing FOR ME. And yesterday, Fast Sunday, was no exception to my prayers. But this time I needed to know that my decision to go forward with the mastectomy and removal of my ovaries was the right decision. I needed confirmation that he is listening to me and will answer my prayer. 

Sweet Aleisha and her new Little One Bridget
Wouldn't you know it....every testimony that was shared at church during the services seemed to be a reminder TO ME that he does answer prayers. I heard it over and over. Even later when I jumped on Facebook for a moment I saw people mentioning how their prayers were answered. But what about my answer? Well wouldn't you know it. The good Lord knew the best way to reach me, a blogger was through a friend and her blog post. The title that popped up, "Motherhood Requires Bravery" caught my eye and I clicked over from Facebook. I read, and I cried and I thanked my Heavenly Father for confirming to me that what I was doing was the RIGHT thing FOR ME and also reminding me that I am not doing this just for MYSELF. I'm doing this for my children and their children. I'm being brave so I can continue my story with my husband, extended family and sweet friends. And thank Heavens for Mama Leisha...I needed the reminder to be BRAVE.

So I decided to print me off a couple of these cute graphics I found on Pinterest and post them in places I needed to see. So how big is YOUR BRAVE?

Saturday, November 2, 2013

Meeting My Surgeons Part 1

A friend pointed out that I have not been keeping this blog very up to date because she knew I'd been to Huntsman three time this past week. Well in all honesty I wasn't sure what to write and how much detail to put on the blog. Part of me figured no one would really care and the other part after visiting Huntsman Cancer Institute three times this past week makes me feel very thankful that I am not faced with the harrowing symptoms of cancer and the treatments that follow. However, I am completely overwhelmed and think often times that at some point I will wake up and this will just be a bad dream. I actually told my last doctor that I really had hoped someone would tell me that being positive for BRCA1 is not a big deal and I could just let it ALL go and not worry about cancer any more.

Sadly that was not the case and so I pressed on and met with a couple of doctor/surgeons that will be key characters in my story.

So I met with the Surgeon that will be doing my BPM (Bilateral =  both breasts, Prophylactic = preventative, Mastectomy ...well you all know what that is). She has been doing this for 20+ years and is considered the top of her field. However, her bluntness threw me off a bit. If you know me, you know I'm very sarcastic and can joke with the best of them. But I wasn't prepared for her comments about how "giant" my breasts were. She made a few other comments about my "girth" and "surgery would take twice as long because of my large breasts." I am already a little overwhelmed by all that I'm doing, but to be told I'm BODACIOUS in size and that my size may prevent me from electing to choose the type of recontruction I'd planned on really knocked me sideways. I only broke down once to my mother while waiting for the nurse to confirm scheduling for my upcoming MRI. We did however select the day of my surgery. When is a good idea to do this sugery, turn my normal life upside down and mess up my holidays?? Well there is NOT a good day, trust me...I tried. So we are doing it DECEMBER 9th. Yep...that soon. You see i have to schedule my time, the mastectomy surgeon AND the plastic (reconstruction) surgeon all at the same time. Not to mention the hospital and all other staff...gladly I don't have to deal with the rest of that. I meet with the plastic surgeon this next Tuesday...more details to follow.

At the end of the week I met with the OB/GYN Surgeon that will be performing the surgury to remove my Ovaries. We discussed the option of having a full hysterectomy or just the ovaries, along with hormone therapy following the surgery. I REALLY liked this doctor. Granted she reminded me of a childhood friend of mine, Mel....oh and she is so young. But she was so smart and so informed. She walked into my appointment understanding my BRCA1 diagnosis and handed me a couple of handouts to read. Did I mention I liked her? Her and her resident were so kind and although they brought up my pre-existing "condition" of fatness...they didn't make me feel bad about it at all. We decided to wait until I had time to recover from my December surgery, but still plan for this surgery sooner then later. The date that we were able to get on her schedule was FEB. 18, 2014. Yep, people that means I'll be sucking up my birthday with a shorter recovery, but still a recovery all the same.

So there you have update. Already called my girlfriends and told them to start planning my "Bye Bye Boobie" party and I feel this HUGE SENSE of urgency to get Christmas all planned out and ready to go!

Watch for Part 2 this next week. The plastic surgeon is the BIG one for me...wish me luck!