On The Other Side

In some ways, the day of my mastectomy feels like an eternity ago, and in other ways I can't even believe that I am six weeks out already. What a crazy thing life is! Overall, my recovery has gone better than I anticipated. The first couple weeks were the most difficult....lots of pain and nausea, but those days now feel like a distant memory.

 I'm so grateful to report that I have had no complications so far. Early on, parts of the skin and nipples did scab and turn black, causing me a lot of anxiety that the tissue was dying. Fortunately, that has all healed and my skin has recovered fully, with only minor discoloration. I want to say thank you to everyone that has prayed for me, encouraged me, and been there for me. It has been such a remarkable and humbling experience to have so many people supporting me. I have often been overwhelmed by it and unsure of how to let all of you know just how much I appreciate you and love you. My words seem so inadequate at expressing just how much gratitude I feel to have all of you wonderful, kind people in my life. I can't say "thank you" enough.

At six weeks out, I no longer have any restrictions and am now getting back into an exercise routine, which has helped my mood and depression tremendously. Two days ago I had my third and final fill in my tissue expanders. It is such an odd thing to have a huge needle inserted into the center of your breast, and then watch it be pumped up like a water balloon! The fills leave me in pain for a couple days, so I'm very happy to be finished with the expansion process. I am now counting down the days to getting these dang tissue expanders replaced with implants. Right now I call them my 'mannequin boobs,' because that is exactly what they are like. They feel like hard plastic, and there is no movement to them whatsoever. They also look very odd, not like boobs at all. Luckily, I knew going into this that expanders aren't made to look pretty, they are made to create a pocket. Getting them replaced with soft implants should be a big improvement in comfort and appearance. The implants I am getting are specially designed for mastectomy patients. They are not round like traditional implants, but tear drop shaped to resemble that of a natural breast. There are some spots high up in my chest that look very sunken in. This is because breast tissue goes up a lot higher than maybe it appears to. The breast tissue that was removed from the upper parts of my chest is not covered by the expanders. I'm not sure if it will be covered after getting the implants. I may need to do fat grafting to fill those spots in.

For the most part, I am adjusting to the changes in my body. The numbness hasn't been as much of a nuisance as I had originally thought it would be, and I am getting used to it. On my right side, the numbness goes all the way under my arm. That is the part that is the most annoying, because my arm is always rubbing against it. But, like I said, I am getting used to it. Even with all of the struggles, all I feel now is relief and gratitude...relief that the surgery is behind me and gratitude that my risk of breast cancer has gone from almost 90% to about 5%. What a miracle and a gift in my life! There hasn't been a day in my recovery that I haven't thought about the women in my family that have lost their lives to breast cancer. I feel forever bonded and connected with these women. They will be in my heart, always.

Below is a photo of my beautiful Grandma Marie. She passed away from breast cancer when my mom was only 7 years old, so I never had the honor of knowing her in this life. I often think of her and the amount of suffering she endured in her short life. Her cancer eventually spread throughout her body and into her bones. At the end of her life, even something as simple as taking a bath was enough to break her fragile bones. I have been told that she was a happy, carefree soul who never complained   even in the worst of times. How can I look at this courageous woman and not just be completely filled with gratitude that I had the option to prevent such a fate in my life? What would she have done if she had been given the options I have? This is why, no matter how hard this journey is, I will try to honor this woman (and the many others who have fought the same battle in my family) by expressing my gratitude for the gifts I have been given. I love you, Grandma Marie.

I have had a lot of people asking me about when my next surgery will be, so I wanted to fill everyone in on the 'game plan.' Originally, I was going to be having a salpingo-oopherectomy (removal of ovaries and fallopian tubes) in September. This has changed. After many more hours of research and discussing my options with the different specialists, I have decided to have a total hysterectomy. I will have my ovaries, fallopian tubes, uterus, and cervix all removed. This is a very personal decision, and not every woman with the BRCA mutation decides on this option. One of the main reasons I have decided on this option is that removing my uterus gives me more freedom with hormone replacement. Another major reason is that there is early research indicating that the BRCA mutation does put women at higher risk for uterine cancer and not just ovarian cancer. 

The other part of the 'game plan' that has changed is the date of my next surgery. As you can imagine, after going through such a major surgery, I haven't been very excited about jumping right into a second surgery. After discussing it with my plastic surgeon and my gynecological oncologist, it has been decided that I will do the final breast surgery and total hysterectomy at the same time. This will obviously make for a more difficult recovery, but it will be one recovery instead of two. I was so happy to find out that I could do them at the same time! The expanders have to stay in place for 3 months after the final fill. Since I just had my final fill, we are looking at the end of November to schedule these surgeries. My surgeons are in the process of coordinating a date with one another, so I don't have an official scheduled date just yet. The good news is that I have three whole months to feel good and do normal activities! I'm ecstatic about that part of it.

So, that's where I'm at. Thank you all for being there for me throughout all of it. You are wonderful! I feel incredibly blessed to be on the other side of the mastectomy and doing as well as I am. I wanted to end this post with a quote from Angelina Jolie, who also carries the BRCA mutation and elected to have a preventative mastectomy: 

"On a personal note, I do not feel any less of a woman. I feel empowered that I made a strong choice that in no way diminishes my femininity."

Thank you Angelina... my thoughts exactly :-)

Mastectomy 101 Part 3: A Body That Will Never Be The Same

I ran the Utah Spartan Beast on Saturday. If you are my Facebook or Instagram friend, you probably already know that (sorry for the picture overload, I was just very excited about it). It was such a bittersweet day for me. The experience of running that race for the second time instilled such a strong sense of accomplishment, and reminded me that I can do hard things. At the same time, the race brought on a deep sense of sadness as I thought about the changes that will be happening to my body as a result of all the surgeries I will be going through this year. I couldn't help but think of how much strength my body will lose after surgery, and the amount of time it will take to regain my fitness levels. Not only that, I thought about the parts of myself that will never be the same. That is what I want to talk about on my blog post today    the changes that happen to a woman's body after a mastectomy, hence the changes that will happen to my body.

Numbness: I don't think I ever really thought about this aspect of a mastectomy until I started researching the procedure myself. When the breast tissue is cut out, and the nipple is cored out, the nerves are all cut. This leaves the area numb for the rest of a woman's life. Some women regain some feeling in certain parts of the breast, but no one regains any type of sensual feeling. That will be forever gone for me. I don't want to go into detail on a public blog about what losing that type of sensation will mean for me in my intimate life. All I want to say about it is that it sucks and I'm sad and I'm scared. What I did want to talk about were the other aspects of the numbness that occurs.

Let me first tell you something about me....when I get a cavity filled at the dentist, I do not let them numb me. I would much rather feel pain for 20 minutes, than have my mouth numb all day. This is how much I hate that 'numb' feeling. After my surgery, I am going to have to deal with my entire chest being numb FOR THE REST OF MY LIFE. At this time I can't even fully comprehend what that will be like. This scares me more than any other part of my mastectomy. Have you ever heard of someone that loses a limb having phantom pains and itches? Well the same thing can happen with losing your breasts. I've heard many women complain of having 'boob itch' that they can't scratch. My hope is that I will be able to adjust to the numbness and get used to it, otherwise I might just go insane. The numbness also scares me, in that, I worry hugs will never feel the same again. I am a such hugger, so that fear is very real for me.

Appearance: I want to start this section off by making it clear that having a mastectomy with breast reconstruction is nothing like having a breast augmentation. I have had women online tell me how hurtful it is when someone compares what they have gone through to a breast augmentation. Although there are wonderful surgeons out there and new advances in breast reconstruction, my breasts will never look like my natural breasts, nor will they look like augmented breasts. They will be something completely different. This is because all that is left after my mastectomy is a thin layer of skin. My surgeon will have to completely reconstruct my breasts, even recreating the breast folds. I will not have any breast tissue or fat surrounding the implants after they are placed. If the implants are showing lots of rippling after my final surgery, it is possible for my surgeon to do a fat grafting procedure, where he would liposuction fat from other parts of my body and put that fat into my breasts. This can help smooth out the appearance of the implants.

In my research, I have viewed countless photos of reconstructed breasts. It has helped me to, hopefully, have a realistic idea of what my reconstructed breasts will look like. I am very confident that I have found one of the best breast reconstruction surgeons in the area, and I have seen photos of some of his patients. He does amazing work, but what I love most about this doctor is his honesty and openness with me. I had my final appointment with him Friday, and he very gently and kindly spoke with me about having realistic expectations of my reconstructed breasts. I am an optimist by nature and I am hopeful for a good cosmetic outcome, but I am also preparing myself for the possible deformities my breasts could have. I know that accepting my new breasts will be a process, but in the end, what they look like does not matter. Being here for my family does.

Pectoralis Muscles: After my mastectomy, my pectoralis muscles will be at 50% of the strength they are at now. It will be a long, hard road to gaining my strength back; but my surgeon is confident that I will be able to get back to my same level of fitness and strength again. He has performed breast reconstruction on other athletic women, who have been able to return to the same activities they did before surgery. He told me that the biggest complaint, from women who exercise, is that they can feel the expander/implant moving around under the pectoralis muscle when it is engaged. The feeling can be rather annoying, but most women do get used to it after a while. Physical activity is extremely important to me, so the thought of having my pectoralis muscles cut is quite terrifying, even with all of my surgeon's reassurances. I know that it will take a lot of patience as I try to strengthen those muscles again. My hope is to be able to run another Spartan Beast next summer.

A Long and Painful Recovery: The estimated recovery for my mastectomy is 6 weeks. After talking to other women, and watching my own mother endure it, I am anticipating that the first 2 to 3 weeks will be pure hell. The way the pain has been described to me is that it is like having an elephant sit on your chest. Sounds so fun, right? I will also have four surgical drains that are inserted through the sides of my breasts and then hang down. They will drain fluid and blood form the surgical site. They are usually removed by 2 weeks after the surgery, but the time can vary. They can only be removed when the output from them is low enough. Here is a picture demonstrating these 'fun' drains:

I will probably be sleeping propped-up, on my back for quite some time after surgery. I'm a stomach sleeper, so that's going to be a huge adjustment. I have a recliner that I plan on sleeping in during my recovery. Of everything my recovery entails, my biggest fear is actually not all of the physical pain, but my inability to do normal things. I will not even be able to lift my arms above shoulder height for two weeks. Being the independent and active person I am, I anticipate that this will be extremely hard on me. A big part of coping with my clinical depression is staying busy and staying active. Not being able to get out and do things can cause me to spiral into depression rather quickly. Even when I just get sick for a few days, it's enough to throw me into a deep depression. I'm not sure what being down this long could possibly do to me emotionally. We are trying to put a plan in place to make sure that I can stay busy in the ways that are possible, and that I get plenty of social interaction throughout my recovery. I know these things will be so crucial to getting through it. 

Emotional Loss: As my surgery is getting so close, I find myself touching my boobs A LOT. Sorry, if stating that makes anyone uncomfortable! It's not some sexual thing, I can assure you, but more like I'm saying goodbye to them, like I'm giving them a hug and saying 'thank you.' If you think about it, a woman's breasts are a big part of her life, and losing them brings on a real sense of loss and mourning. I have been thinking about being a teenager and going through puberty and being so excited that my body was changing in that way. I was becoming a woman. My breasts have gone through a lot of changes throughout my life, and I haven't always been happy with them the way that I now wish I would have. They do not define me, but they are a part of me, and losing that part of me will not be easy. These breasts fed my three beautiful children. Those are moments that I will cherish forever. I am grateful that I had the opportunity and ability to do that, and that this surgery is taking place after I had already decided that I was done having children. Not all women have that same opportunity before undergoing a mastectomy. I consider myself very lucky. 

Conclusion: This has been one of the hardest posts I've written on my blog. I am one week and one day away from surgery and I am, quite honestly, terrified. There are no doubts in my mind that I am doing what needs to be done    that I am following through with what my Heavenly Father wants me to do, but it is not easy. There will be a lot of tears shed, and hard days, but I do know that I will get through it. My Savior will carry me. I also like to believe that my Aunt Barbara, my Aunt Jean, and my Grandma Marie will be my guardian angels through my surgeries. These beautiful women lost their lives to something I now have the ability to prevent in my own life. What a miracle that is, what a gift I have been given. Beyond all the fear and sadness, there is still gratitude in my heart. Thank you all for taking the time to read and understand what I am facing. It means the world to me. I send my love to all of you. 

Mastectomy 101 Part 2: Breast Reconstruction and Expansion

Of all the procedures I will be having this year, the breast reconstruction process will be the most drawn out. As I have mentioned in previous posts, there a several different types of breast reconstruction. Some use a woman's own tissue, some use implants, and some use both. I'm only going to discuss the type of reconstruction that my surgeon and I decided on for me, but I do want to make others aware that there are many options for breast reconstruction and many factors come into play when deciding which type is best for a specific woman.

After consulting with a plastic surgeon several months ago, it was decided that my best option for reconstruction would be tissue expanders to silicone implants. I have had a lot of people ask me what tissue expanders are. I'm going to rely on YouTube once again to start my explanation off. Again, this is a very short video (2 minutes) and it gives a great explanation of tissue expanders:

Tissue expanders (like the one shown in the video) will be placed, by my plastic surgeon, right after my mastectomy. On the day of surgery, my general surgeon will go in and perform the bilateral mastectomy. Once she is finished removing all of my breast tissue, my plastic surgeon will then come in and place the tissue expander under my pectoralis muscle. A material called Alloderm, which is made from donated human tissue, will be placed under the expander and sewn to the pectoralis muscle to create a sling for the expander. Here is a visual representation of that:

My plastic surgeon will fill the expanders with a small amount of saline on the day of surgery, to start the expansion process. The skin after a mastectomy is so fragile that the expansion process will be done very slowly. The purpose of expansion is to create a pocket for an implant. After a mastectomy, there is no breast tissue to hold the implant in place, so a pocket is needed. Depending on how well my body tolerates the saline fills, I will go into my plastic surgeon's office every 1-2 weeks to have more saline added. Once the expanders are filled to the size they need to be, they must stay in place for 3-4 months. After that 3-4 month period, I will go in for what is called an exchange surgery. My plastic surgeon will take out the expanders and replace them with silicone implants. Alloderm will again be used as a sling for the implant in the same way it was used for the expanders. 

Some of my worries....

I have talked to a lot of women who have had tissue expanders, and have yet to find anyone that doesn't hate them. They are uncomfortable, hard, and tight in your chest. They often make your breasts look deformed. Many women have told me that each time they get a saline fill in their expanders, they are in pain for the following couple of days. Basically, what I'm trying to say is that the expansion process sucks and I am not at all excited for it. I'm worried about the length of time (around 6 months or more) that I will have to deal with the discomfort the expanders cause. I am also worried about the possibility of infection around the expander. Some women develop infection, at which time the expander must be removed until the area heals. Another surgery would then be performed later to place it a second time, and the whole process starts over. Are you starting to see why I described the process as 'drawn out'? 

I guess the only positive thing about expanders is the relief that comes when they are switched out for implants. Some women refer to their implants as 'squishies,' because they are so soft and comfortable compared to the expanders. I know I will be counting down the days to my exchange surgery! On a side note: I will have magnets in my boobs while the expanders are in, so that will be interesting. I've seen women post pictures of soda cans, keys, and other metal objects stuck to their breasts! You have to keep a sense of humor through all of it, right? 

Mastectomy 101 Part 1: Let's Talk About Nipples

Warning: This blog post does contain photos related to different aspects of mastectomies.

Update

 Before I write anything about my mastectomy, I must formally thank all of you that have reached out in love and support after my last blog post. Thank you for the kind words and for sending me your positive thoughts and prayers. You have strengthened me more than you will ever know. This world is really such an amazing place, with so many amazing people, and I'm so lucky to have such a great number of those amazing people in my life. Truly, thank you.

As for how I have been doing....I am continuing to attend Eating Disorders Anonymous meetings and therapy on a weekly basis. I have been very blessed to be meeting with my therapist from my time in inpatient treatment, as well as from the years of outpatient treatment following my discharge. It has been a special experience to be meeting with her on a weekly basis again. These past couple of months have been an uphill battle, but I am getting there    one day at a time. My eating disorder behaviors have been mostly under control, although I have had some slips, but the real battle is with the eating disorder thoughts. It really is shocking how powerful they can become after slipping for even just a short period of time. I know others that have struggled with an eating disorder or any other form of addiction will understand what I mean when I say that even with the behaviors under control, the addiction is still there, constantly trying to pull you back into its grips. The longer I fight, the stronger I become. Where I am today is a world away from where I was when I wrote my last blog post and I am so grateful for all the love and support along the way      from those around me, from my Savior, and from YOU     my blog readers. So, again, thank you.  

My Surgery    

My bilateral mastectomy is now only 20 days away, 20 DAYS! After the whirlwind of finding out my genetic test results and making all those difficult decisions about surgery (oh, you know, and announcing it to the world on this blog) I became somewhat emotionally detached from all of it. It's not that I haven't been thinking about it at all or talking about it, but I hadn't really started to process the reality of what I'm actually facing until recently. I want to use this blog post to process some of these feelings, as well as inform others of what is involved in a mastectomy, and maybe help erase some of the social stigma and shame surrounding this procedure. I know that I was very uninformed before being faced with it myself, and now I feel a strong desire to help others understand the process, and get comfortable with all that it entails. Chances are, you know at least one woman who has had breast cancer or has had to go through the pain of a mastectomy. Being informed will help you to be more of a support to those women. My emotions about my own surgery have been all over the place, so I hope that this post doesn't turn into a jumbled mess of thoughts. Well, I guess I'll just jump right into to it....here we go:

Below is a very short video, with a very basic explanation of the different types of mastectomies. Although it is a simple video, it answers a lot of questions that people have asked me about my surgery, so I hope you will take the time to watch it.

Since I am having a mastectomy as a preventative measure, I will be doing the nipple-sparing mastectomy. As mentioned in the video, the main advantage to this type of mastectomy is a better cosmetic outcome. I am grateful for this option, not just for the cosmetic outcome, but for the fact that when I look down after surgery, I will still see part of myself there. I believe it will lessen the feelings of loss. With that being said, the outer skin and nipple will be the only parts of my breasts that will still be 'me', and those parts will only be 'me' visually. As shown in the video, all of the breast tissue will be completely cut out to the skin, and the nipple will be cored out. As a result, my breasts will be numb for the rest of my life. What will be left behind is a very thin and fragile layer of skin. 

Necrosis

Because the skin will be so fragile, and the blood flow so weak, I will be at risk of necrosis for the first few weeks following surgery. Necrosis is the process of the tissue dying. Some women who have a nipple-sparing mastectomy still end up losing their nipples. The nipples die and turn black. Extra surgery is required at that point to remove the dead tissue. Other parts of the outer skin can become necrotic as well, and would have to be removed. Here is a photo showing nipple necrosis:

Nipple Reconstruction

Some women without nipples choose to do nipple reconstruction, while others just learn to live without nipples. I have already made the decision that if I lose my nipples, I will  be doing nipple reconstruction. The nipple is reconstructed using the patient's own skin, and once it is healed, it will be tattooed the color of a real nipple. This photo shows one way the nipple is reconstructed:

I have also learned in my research that some women choose to get a 3D nipple tattoo, instead of doing the actual reconstruction. Here is an example of that:

This photo is from the White Tiger Tattoo website (http://www.whitetigertattoo.com/medical/3dtattooing.html)

On the advice of a good friend, I have decided to blog about my mastectomy in small parts. It is all a little overwhelming for me right now, and I'm sure all the information could be overwhelming to my readers. I guess the theme of this post is: I really want to keep my nipples. That might sound a little strange and awkward, but the fear of losing them gets stronger and stronger as my surgery nears.To all of you women out there reading this    have you ever thought to be grateful for your nipples? With that question, I also have a favor to ask of you    please take a moment and be grateful for your breasts... for your nipples...for those parts of your body that maybe you don't think measure up to society's standards of beauty. Facing what I am facing has brought on a strong sense of gratitude for the way my breasts are right now, imperfections and all. I have 20 more days with these breasts, and I feel the mourning process has already begun. I regret ever feeling like my breasts weren't good enough, or that there was something about them that needed to be changed. So ladies, please hug your boobies and be grateful for them just the way they are. Hey, and while you are at it, go ahead and check yourself for lumps. Instructions here

Recovery

"Fall seven times, stand up eight."

-Japanese Proverb

This blog post is vulnerable. This blog post is scary. This blog post is necessary............

I, Alicia Brown, am in recovery from a severe eating disorder and I am struggling. I have been struggling for weeks. The thing you must understand about my eating disorder is that it morphs and changes over time. It is as if it takes on a life of its own, and when I feel I have one aspect of it completely beaten, that aspect will change into something else entirely. I have had some major stressors this past month, which triggered some different aspects of my eating disorder. Even with 13 years of recovery under my belt, I am still at risk of relapse. Today, I am stating publicly that I refuse to relapse. I refuse to let the eating disorder win. I have been at rock bottom once, and I will never be there again. 

One promise I made to myself while in treatment was that I would never lie about my eating disorder ever again, and I have kept that promise. It is this promise that has saved me from relapse many times, and it is what is saving me now. There are some wonderful people in my life who have been there for me the last few weeks (you know who you are), and who I have been able to openly share my struggles with. Although, I have taken the steps of talking to others, returning to therapy, & returning to Eating Disorders Anonymous meetings, I still feel that I have one foot in the door of recovery and one foot in my eating disorder. My eating disorder is like a very seductive, old friend. It will tell me, "You can just do this for a little while. It will help you cope with these hard things in your life. Then you can just get back on track." Like I've said on my blog before, I do see my eating disorder as a separate entity from myself, and something that continually lies to and deceives me. Remember  THIS VIDEO I posted a while back? It is such a powerful representation of what it is truly like to battle an eating disorder. 

With this blog post I am publicly stating my commitment to my recovery. I am committing to (as an amazing friend stated to me today) "get both of my feet through the door of recovery." Staying in recovery is more important to me than appearing perfect to those around me. Secrecy and shame fuel an eating disorder like nothing else can. So, today I am choosing to drowned out that secrecy and shame by admitting, very publicly, that I am struggling. It would have been nice to paint myself on this blog as some invincible, fully recovered person who no longer struggles, but that wouldn't be real and that wouldn't help anyone   including myself. The fact that I struggle does not negate all that I have accomplished in recovery, and all that I have learned. I have worried that stating my current struggles on my blog would lead others to assume that I don't believe all the things I have written, that I am a hypocrite. I can assure you that everything on this blog has come straight from my heart, and I believe every word. I hope you can see my sincerity in that. I hope you can see my sincere efforts to stay on the path of recovery, and "practice what I preach." 

I love all who come to my blog and support my efforts. I love friends and family who see me for who I am and not what I struggle with. I love my Savior, who picks me up no matter how many times I fall. I love my children, who deserve a mother who never gives up this battle. There is gratitude in my heart today for all this love in my life. I am not giving up and I am not giving in. That is my promise today.

I have never been so scared to press publish before. "Feel the fear and do it anyway," right? 

Your Questions Answered

First off, I want to thank everyone that responded to my last post with such encouragement and love. It was so scary hitting publish, and not knowing what everyone's reaction would be. You all quickly put my fears to rest. I am so grateful for the love that surrounds me from family, friends, and complete strangers. You have all lifted my spirit tremendously and I will be forever grateful for your love and kindness. Thank you.

With today's post I wanted to do a follow up and answer some questions that many have asked since my big announcement last week. I will provide more details about my surgeries and the BRCA2 mutation.

Surgery Dates

My mastectomy is scheduled for July 10th of this year. Originally we were thinking of doing it sooner, but because our insurance year begins in July it makes much more financial sense to wait and do all the procedures within the same insurance year. I also feel comfortable waiting on the procedure, as I just recently had a breast MRI and mammogram that both came back normal. If things go as planned, without complications, I will be having 3 different surgeries over a 5-6 month time period. One for the mastectomy and first part of breast reconstruction, one for the salpino-oopherectomy, and one for the final reconstruction. With breast reconstruction after a mastectomy, there can be any number of complications in which the process could take longer than anticipated, or additional surgery may be required. I am grateful that I have some time to prepare for my surgeries. My focus right now is to take very good care of myself, so that I can reduce my risk of complications as much as possible. One more added bonus of waiting until July is that I will still be able to run the Spartan Beast race in June (I have been looking forward to it ever since I ran it last year). I think it will be a great way to 'go out with a bang' before starting my surgical journey. My salpino-oopherectomy has not been scheduled as of yet. I am waiting on some additional tests that my doctor recommended. I will then be referred to a gynecological oncologist to discuss surgery time frames. It will most likely be somewhere in-between my mastectomy and final breast reconstruction. I am tentatively planning it for some time in September. The final reconstruction surgery should fall somewhere around November or December, depending on how long the expansion process takes. 

The Mastectomy

I don't know about most people, but before I started researching the BRCA2 mutation, I actually knew very little about mastectomies. Did you know there are different types? The different types of mastectomies include:  radical mastectomy, modified radical mastectomy, simple mastectomy, skin-sparing mastectomy, and subcutaneous(aka nipple-sparing) mastectomy. These different types refer to how much of the breast and surrounding tissue is removed. When a woman has breast cancer, the type of mastectomy performed usually depends on how far the cancer has spread. When a woman has a preventative mastectomy, like I am, she gets to decide how much tissue remains. After much research and meeting with my general surgeon and plastic surgeon, I have decided upon the subcutaneous mastectomy. I am grateful to have this option, as most women with cancer don't have the opportunity to choose this type of mastectomy. In a subcutaneous mastectomy, all of the breast tissue is removed, but the nipple and outer skin of the breast remain. With leaving the nipple (which is completely made up of breast tissue) there is still risk of developing breast cancer, but the risk is minimal. My general surgeon said it would only increase my risk by about 1% to keep the nipple and she feels completely comfortable with this choice. After the procedure, my risk of breast cancer will go from an almost 90% risk to around a 5% risk. I can live with that. I believe being able to keep the outer part of my breast, will help lessen the feelings of loss after the surgery. I have also tried to prepare myself for the possible complication of necrosis (tissue death). This some times happens with a subcutaneous mastectomy, and if it does, more tissue will have to be removed. I have made peace with the prospect that I may lose more tissue than I want to. 

During any type of mastectomy, the nerves in the breast are cut, leaving the woman numb along her chest and sometimes under her arms. Some women regain some feeling, but most do not. It is also possible to have phantom pains or itches, much like those experienced when a limb is amputated. The numbness and phantom pains can be some of the most difficult aspects of adjusting to life after a mastectomy. I am so grateful that I have been able to connect with other women online who have been through it, and who have helped me get an idea of what it will be like. Not only have these women openly shared their stories with me, but many have posted photos of their entire journey to help me know what to expect. I am beyond grateful to all the courageous women freely sharing themselves in an effort to help other women on the journey. They have brought me so much comfort and hope in my moments of despair. 

The Breast Reconstruction

Can I just tell you that I was completely overwhelmed, yet fascinated, when I started researching breast reconstruction? I could not believe how many different options there were. I am so impressed with the medical advances that have taken place, in order to help women feel more whole after going through a mastectomy. Here is a list of some of the procedures I researched:

• Tissue Expander to Saline/Silicone-Filled Implant
• Tempory Saline-Filled Spacer to Permanent Saline/Silicone-Filled Breast Implant
• Latissimus Dorsi Myocutaneous Flap +/- Saline/ Silicone-Filled Breast Implant
• TRAM Flap 
• Free-TRAM Flap 
• DIEP Flap 
• SIEA Flap 
• Bi-Pedicle or "Stacked" SIEA Flap
• SGAP Flap
• IGAP Flap 
• TUG Myocutaneous Flap 
•  Perforator Flap 
• TDAP Flap 
• ICP Flap 
• Brava Fat grafting

All breast reconstruction procedures can be divided into 3 categories: 1) implants, 2)the use of woman's own tissue, or 3) a combination of the two. You have to understand that I'm the type of person that might spend several days researching a pair running shoes before I commit to buying them. You can imagine the stress I have felt trying to make decisions about reconstruction and the amount of hours I have spent researching the options. I am so grateful that through my research, I found an amazing plastic surgeon here in Utah who specializes in breast reconstruction. Meeting with him put me at such ease with the process. For my body type and situation he has recommended Tissue Expander to Silicone Implant Reconstruction. On the day of my mastectomy, after the general surgeon is finished removing all of the breast tissue, the plastic surgeon will place tissue expanders under my pectoralis muscle. He will fill them with a small amount of saline at that time. Here is what a tissue expander looks like:

In the weeks following my mastectomy, I will go back into the plastic surgeon's office several times to have the expanders gradually filled with a needle and syringe. Each time the expanders are filled, I will most likely be in pain and uncomfortable in the following days. Most women tell me they HATED their expanders, so I am assuming that I will probably hate them as well. Once the expanders are filled to the right size, they are left in place for at least another 3 months to form a 'pocket' for the implant. After that 3 months, I will go in for what they call an exchange surgery. The plastic surgeon will replace the expanders with silicone implants. The pocket created by the expanders is very important, since I won't have any tissue to hold the implant in place. The doctor will also use Alloderm to create a sling for the implant. Alloderm is a tissue matrix created from donated human tissue. Not only will it aid in holding the implant in place, it will soften the appearance of the implant. I am hoping that the exchange surgery will be my final surgery, but there is a possibility that I will need revision surgeries. Breast reconstruction is a long, complicated, and scary process. I will be very grateful when it is all over with.

More About BRCA2

Many people have asked about my mom since I announced my mutation. I was careful not to talk about her in my blog post, because she is a private person and I did not feel like it was my right to share her story. For anyone that understands the mutation, it is a given that if I carry it, my mom also carries it. This mutation cannot skip generations. So, yes, my mom carries the mutation as well. I have received her permission to share that fact on my blog. She got tested shortly after I had received strong promptings to be tested. I waited for her results before I submitted my test. My mom went in for a salpino-oopherectomy and hysterectomy just over a month ago. She has recovered and is doing very well. She will also be going forward with a mastectomy in April, so please include her in your thoughts & prayers. I am so grateful that she hasn't developed cancer up to this point and that she is willing to have the surgeries, so that I will not have to fear losing her to cancer in the future. 

Just as my mom passed the mutation on to me, each of my children have a 50/50 chance of carrying the mutation as well. This was probably the hardest part of learning that I carried the mutation, knowing that I may have passed it on to my children. For men, the BRCA mutation is not that detrimental. It does put them at a slightly higher risk for certain cancers, even male breast cancer, but the risk is very small compared to the risk women face. The bigger concern for men carrying the mutation is the possibility of passing it on to their daughters. I do not know what the future will hold for my kids, and it will be their choice when they are adults whether to get tested or not, but I do know that I want to be an example of being proactive in the face of this mutation. 

There are actually two different types of BRCA mutations (BRCA1 & BRCA2). I hope that writing about my BRCA2 gene mutation brings more awareness to the risks of hereditary cancer, but at the same time I want to stress that these mutations are not common. A very small part of the population carry the BRCA1 or BRCA2 mutations. My mutation is often referred to as BRCA2/Early Onset. This is because one of the hallmarks of this mutation is the development of breast or ovarian cancers at younger ages than what is normally seen. It is also strongly suspected in families that have many cases of breast or ovarian cancer, or have women who have had breast cancer in both breasts, or women who have had both breast cancer & ovarian cancer, or in families in which men have developed breast cancer. It is when people present with these type of family histories, that a doctor will recommend genetic testing for the BRCA1 and BRCA2. 

Thanks again for all of your love and support. I hope that this post has answered some of the questions that you had after reading my first post. I plan to keep you updated on my surgeries, but I also hope to get back to writing about other topics on my blog. Please feel free to send me any other questions you might have.

Boobs, Ovaries, and Hereditary Cancer....What These 3 Things Mean For Me

This year I will be having a Bilateral Mastectomy. A surgeon will be removing my breasts and another surgeon will reconstruct them. This year I will be having a Bilateral Salpingo-Oopherectomy. A surgeon will be removing my ovaries and fallopian tubes, launching me into instant menopause at the ripe old age of 32. And yet, I am grateful   grateful that I get to have these surgeries and this option where so many women that came before me didn't have a choice.

Let me start from the beginning....there is a lot of Cancer in my family, a lot. My grandmother died of metastatic breast cancer while my mother was still a young child. Of the 7 girls in my grandmother's family, 6 had breast cancer. All four of her brothers had some form of cancer as well. I know at least one had colon cancer, but the rest I do not know the type. When I was sixteen my mom's sister died of ovarian cancer and just over two years ago my mom's other sister died of metastatic breast cancer. Another of my mom's sisters had a form of pre-breast cancer for which she had a double mastectomy to prevent falling into the same fate as that of her mother, my grandmother. I have very little information on extended family, but I do know one of my mom's cousins died at age 33 of breast cancer and another cousin has battled breast cancer several times, even after having a mastectomy.

Cancer, unfortunately, has become somewhat of a family legacy. For many years, our family has been a part of the University of Utah's hereditary cancer studies. We have lost far too many beautiful and courageous women to breast and ovarian cancer. I had the great privilege of knowing my two aunts who lost the battle, and although I never knew my grandmother I sometimes like to think of her as my guardian angel on the other side. Everything I have learned about her and the suffering she endured has led me to have great admiration and love for my mom's mom.

I have felt especially close and bonded with these women over the last few months. I like to think that they have been there for me, helping me along and guiding me through the craziness of what I just discovered. You see, in early December I submitted my DNA to Myriad Genetics to get tested for the BRCA2 gene mutation, which stands for BReast CAncer. My results came back in mid-January and they were Positive. I have known for almost three years that this mutation was in my family, and I had always known that I would get tested for it eventually. Shortly after giving birth to my 3rd child, I actually did submit my DNA on the advice of my doctor, but when they called me to authorize it I told them not to run it. I think I knew deep down that I carried the mutation and I wasn't ready to deal with it at that time. I made the decision to get tested by age 40. That was my plan.

But, as with many things in life, Heavenly Father usually has a different plan than we do. The urgency to get tested hit me in early October. I hadn't even thought about the test in a long time, but I couldn't shake the feeling that I needed to do it, and do it right away. After earnestly praying about it, several things happened in the following days that left me without a doubt in my mind that Heavenly Father wanted me to do this. If there is one thing I have learned in my life, it is to trust him   my all knowing creator. Not only did he guide me in what to do, he prepared me for my results. When they came I was overwhelmed with the peace that I felt. I really had known all along that I carried the mutation, even though I had held onto some hope that I didn't. 

So, you are all probably wondering "what does this mutation even mean?" Well, the BRCA2  is a gene that we all carry. It's main function is to repair damaged cells and suppress tumors. The mutation I carry is deleterious, meaning part of the genetic code is missing. My BRCA2 gene doesn't do what it is supposed to do, and it leaves me highly susceptible to different forms of cancer. Although I am more susceptible to many forms, the most prevalent forms are breast and ovarian cancer. With this mutation, and my family history, my lifetime risk of breast cancer is almost 90% and my risk for ovarian cancer is just under 50%. It is not really a matter of IF I will get cancer, but a matter of WHEN I will get cancer. It is like having a ticking time bomb inside your body, that you have no idea how much time is left on the clock. It could be 20 years or 20 months. I do not have the luxury of knowing how much time is on that clock. If I did it would have made my decisions much easier. What I do have is a loving Father in Heaven who has made it very clear what he wants me to do, and that is to defuse the time bomb    to have a Bilateral Mastectomy and Salpino-Oopherectomy. That is what I plan to do, for he knows the end from the beginning and I do not. 

To say the last few months have been an emotional roller coaster, would be the understatement of the century. Researching the BRCA2 mutation and all of my options has consumed most of my time. I have neglected many things in my life, with this blog being one of them. Originally I thought I would never write about my mutation and my planned surgeries. I have felt very vulnerable and alone at times. I have felt that others wouldn't understand my choices. I needed time, time to process the news and time to come to terms with it. I needed to be in-tune with what my Heavenly Father wanted for me, without worrying about the judgement of those around me. I needed time to grieve in my own way. But, I know now it is time to share my story with others, to let people in. I have also realized that all that I have learned in recovery has prepared me to cope with my upcoming surgeries, and the changes that will happen to my body. I have pondered that a lot the last few days. I have learned over the years to define my worth separately from my body, and that has definitely prepared me to lose the part of my body (my breasts) that is so often a symbol of femininity and female beauty and worth. It has also brought me to a place of enormous gratitude for my natural breasts. I am so grateful that I had the opportunity to feed and nourish my 3 beautiful children. Losing my breasts will not take away those memories, nor the bond that occurred with my children during that time. My children and my husband have been at the forefront of my mind through this whole process. Having real breasts, or my ovaries means nothing if I am not around to watch my kids graduate from high school or get married or have their own children. Being here for my family is what matters most. I am a strong woman, making a strong decision and that right there is more beautiful and more feminine than a perfect pair of breasts will ever be.