Sunday, October 30, 2011

Exchange surgery is tomorrow!

My exchange surgery is tomorrow, October 31st, 2011, my 35th birthday.  I did not set out to have this surgery on my birthday, but my surgeon is so busy, this was the first date he had available.  The surgery should be less than 2 hours and I should be home sometime tomorrow.  I am really looking forward to having this step over with. It will be my last surgery under general anesthesia. 

There has been lots of blessing I have received in the last few months.  Some I know I will not remember to write about.  A support group for other people with BRCA mutations has started in the Charlotte area and I went to the first meeting.  It was really nice to talk to other women from all different walks of life that has this same issue to face.  I will definitely continue to be a part of this group. I have been telling clients throughout my whole social worker career to get involved in a support group, but never have been in one myself, so this has been a good experience for me, both personally and professionally.  Also, 2 of my close friends who either have had breast cancer or have a BRCA mutation have had their surgeries during the last few months and both are on their roads to recovery.  Praise the Lord! I have had a lot of work over the last few months which has been a great financial blessing for me and my family. I also attended an adoption conference last week and through that experience, God confirmed to me that he wants me to stay in the adoption field! I had been contemplating a career change with all of the other changes that have gone on in my life this year, but after spending that whole day listening to other adoptive parents, adoptees and agencies, I felt inspired, happy, encouraged and content.  I love having my small part in watching families come together through adoption.  It is truly one of the best pictures of how God adopts all of us into his family that I have ever seen!

So, I am anxiously awaiting tomorrow and ready to continue on with my reconstruction process! God is good! The best is yet to come!

Levacy

 

Friday, August 12, 2011

Next Phase of Reconstruction

I know it has been a while since I have posted, but there has really not been much news to post and I have been enjoying the summer home with Nathan and my girls.  It has truly been a blessing to have somewhat of a reprieve from doctor's appointments, tests and surgeries over the summer! I have still worked part time helping families adopt,but the majority of my time this summer has been making up for the distractions from the Spring and spending time with my family.  The summer started out with Nathan leading 60 people to Kenya this summer and we missed him terribly, but I enjoyed my time just with the girls.  During the summer, Nathan spoke at a few camps and the girls attended their usually day camps of Camp Thunderbird, Tennis Camp and Science Camp.  July was a month that we were away for most of it.  We went on a family vacation to Charleston with his mother, sister, brother and families. Then, one week later, we left for Surfside Beach and spent a week there with my parents, brother and his family.  We left from Surfside with Nathan and attended a Wesleyan 4th and 5th grader camp with him.  It was a great experience for the girls to see what "church camp" is like and to hear their Dad preach the gospel of Jesus Christ and see lives of kids their same age ask Jesus into their hearts. We were gone for almost 2 weeks during the last beach trip and the camp and I have confess, by day 11, I needed to get back to my home, so the girls and I left a day early to come back.  When you are gone from your home for that long, you really start to miss it! Well, that next week we also had my cousin and her daughter come stay with us for one week this summer and we also went back to Charleston last weekend to see our sweet Aunt Danielle marry her now hubby Nic! Gracie left for her first trip to the beach with a friend and her family.  She has been gone for 7 days now, having an awesome time, but I am ready to see my girl. School will start in 2 weeks and I am ready for a more normal schedule. 

As far as my reconstruction process goes, as of July 12, I have finished the "fillings" of my expanders.  This process really was not that bad. I had to go to a weekly doctor's appointment and the procedure to fill the expander was painless.  My breasts did feel a bit hard and tight for a few days after each filling, but they loosened up after a few days.  I had a follow up appointment today and my surgeon is going to schedule my exchange surgery for sometime after October 12 of this year. The reason is he wants to do nothing for 3 months from my last "filling."  The exchange surgery will be strictly exchanging my temporary expander for the permanent implant.  He will also get rid of extra skin and make sure that I look as natural, normal and nice as possible.  My good friend who had the same surgery as me had her exchange surgery in July and she said that "it was no big deal."  I actually talked to her on the phone several hours after she got out after surgery and she sounded great.  That really was encouraging to me as I move forward.

So, this summer has been a time for me to take a deep breath, relax some, enjoy my family and thank God for bringing me this far.  I do not worry about the next surgery (even though they will put me to sleep) like I did for the last two.  I think that is because this surgery is going to be my easiest thus far, and really, I have gotten used to having surgery.  I guess you can say I'm a pro (not sure I want to be a pro at this though!), but I am glad that I don't have the fear of surgery in my mind constantly as I did before.  I do look forward to the day when I can say I am ALL DONE with reconstruction! This will hopefully be by the end of the year so all of the expenses will be under one year's deductible.   Keeping my fingers crossed on that one. 

Levacy

Tuesday, June 7, 2011

reconstruction process

Since my first surgery to remove my breast and begin the reconstruction process is over, I am now focusing on continuing the reconstruction process. To be honest, I had read some about the process and knew that it would take 6 months to a year, but I really could not focus on the specifics of the process post surgery until I got past my mastectomy surgery. It was too much to wrap my mind around. So, on day 12 post surgery, when the surgeon took my drains out and gave me my first "fill" of my expanders, I went straight home to the Internet.  I found tons of information out there on various blogs and websites I had previously checked out for information, but as I was reading, I was reminded why at some point a few months ago I had to quit reading stuff about my situation on the Internet because I was getting all scared and anxious all over again!!!  So, I made a decision again not to rely on the Internet for information and just wait until I could talk to my surgeon the next week about what really is the future for me. 

This proved also to be tricky because if any of you reading has ever been to a busy surgeons office, you get the sense that they want to get in and get out of your room as quickly as possible.  So, I armed myself with a few questions in my head and attacked him with them the moment he entered the room. He was very patient and did answer all of my questions.  He confirmed with me that I will have fillings each week until I get to a desired size. He recommended around 700 cc of fluid in each expander to look normal for my body size.  Then, I have to wait 3 months and do nothing and have a final, more minor surgery to exchange the temporary expander for the permanent implant.  This surgery will be 1-2 hours, under general anesthesia, in the hospital, but you go home the same day.  He said that it is a much easier recovery-a few days even, because you are not under anesthesia as long (1-2 hours versus 5 1/2 hours) and that no tissue or muscle will be manipulated in any way, just doing the exchange through the same incision site and getting rid of any excess skin that I may have.  There will also not be any drains afterwards! Yes!! Since most of my breast is numb especially around the incision site, I probably wont have much pain or discomfort at all.  So, I confirmed with him, I am "going downhill from here" and he said "yes."  I felt tons better after that conversation because it was important for me to have accurate information about the reconstruction process and much of what I read on the Internet was inaccurate.  It was also important to me that I had crossed the most difficult part of this process, which was the mastectomy surgery.  The thought of having another surgery like that one was depressing, scary and overwhelming for me, so I am glad that this will not be the case.  Three months after my exchange surgery and if I choose to do this, I can have nipples constructed which will be in the surgeons office as a procedure and then the nipple color tattooed on. Another option that I am looking into is 3-d medical tattooing so I would not have to have the nipples constructed (comes with the benefit of not needing a bra), but just have a 3-d nipple image tattooed onto each breast.  But, I am not making any decisions about that until after my next and FINAL surgery, so I will post more on that later.   

Levacy

Feeling like myself

It has been 4 weeks since my surgery and I would say I am 98% back to normal.  Praise God! I really started feeling like myself at about 2 weeks post surgery.  After that first week of intense pain, I started to see a slow progress emerging each day.  I can now do all normal activities and my energy levels are back to normal.  I feel great both mentally and physically. I did have a few moments especially the first week of feeling a tinge of regret about my decision, but I always came back to my reasons for making the decision in the first place and they ALWAYS trumped my temporary negativeness.  As far as the way I look, at first, I felt like I looked very "mangled" since I no longer have any nipples and have a long 6-8 inch scar across both breasts, but with each passing week they look better and better.  And by that, I mean they look more normal.  Maybe I am getting used to them too. My oldest daugther wanted to see me right away and she did look surprised and a bit shocked, but after about a week, she too told me that "you are looking better Mom."  My other daugther did not even ask to look at me because a lot of this does not even register on her radar.  Nathan has been super supportive and he reassured after seeing me the first time that "you know, that really does't look that bad" which I really appreciated because he did not lie and say I looked great, but also he did not freak out at the sight of me. 

Positives that I am focusing on now are: I am back to normal within just a few weeks, No more drains!!!!, No more pain!!!!!, I am looking better with each passing week, I have had no complications, I can now manage my children, house, dogs, work and exercise like I used to. Things I do not have to do again EVER: have a pap smear, mammogram or breast MRI AND one of the unexpected blessing in all of this-I don't even have to wear a bra, EVER! Woo Hoo! I haven't had the freedom to not wear a bra since the 7th grade and let me tell you, it feels really nice! And, I can wear any type of shirt now and not have to worry about my bra strap showing.   One of my friends told me to think of all of the money I will save now that I do not have to buy tampons or bras! Ha! I guess the savings for me is true, but my girls are entering into preteen age years and I know I will found on the Tampax and bra isles again soon! Of course, the biggest blessing is I have reduced my ovarian and breast cancer risk to as close to 0 % as humanly possible. 

So, things continue to look up and for that, I am truly grateful!

Levacy

Blog has been down, but next piece of good news, the drains are out!!!!!

My blog has been down so I am going to try and "catch up" with blogging over the next few days.  So, bear with me.  But, I did want to devote an entire post to stating that at day 12 after surgery, I got my drains out!!!! I know that most of you probably have never had drains in their body, but I ca say it is one of the most uncomfortable things I have ever experienced in my life!!! To give you a little info on them, they are placed under your arm pit on the side of each breast to drain fluid from the empty breast cavity I now have.  My surgeon explained that our bodies are made up of mainly fluid, which does not have anywhere to go so when a new "spot" is created, the fluid will go there.  So, they placed these drains in during my surgery so that as I heal, the excess fluid can come out and not cause any infections or problems.  In the hospital, the nurse instructed me to "milk" them 3 times a day and to record how much I get per day and if they get below 30 cc in one day, that I could call my surgeon's office and have them removed.  My Mom took care of my drains for the first few days, but I eventually was able to take care of them myself.  The drain amounts came down each day, starting at about 160 cc in each breast.  I was really hoping on my surgeon appointment at day 12, I would be able to get them out, but since both drains were not below the 30 cc, I went into the appointment thinking there was no way.  But, to my surprise, he did take them out!!!!! And, he performed a filling of my expanders!!! I had told Nathan to not even come to this appointment since I thought all he was going to say was you look good and come back next week.  Dr. Robinson stated he did not like keeping drains in for over 2 weeks because of the risk of infection and that he was going to get rid of some of that excess space by expanding the expanders too.  He also stated that he would see me in a week and if I had some built up fluid, he could drain it off then.  I had been told that it was painful to have the drains removed, but the nurse took her time and to be completely honest, the first side did not hurt at all and the second, more sensitive side, mildly hurt for a few seconds.  And, the best thing about it, was I felt IMMEDIATE relief from having those out.  I was so pleasantly surprised and walked out of there very much encouraged! I am now able to sleep partly on my side, which is amazing too and I don't have to lug those drains around everywhere I go. So, today, was a good day and I am feeling great! Praise the Lord!

Levacy

Its been a week since my surgery

Its been a week since my mastectomy with immediate reconstruction and things are going really well.  First, the surgery was successful and I am at home recovering.  This surgery was WAY bigger of a deal than the hysterectomy and I have even joked that I am not calling the hysterectomy a surgery anymore because this was a surgery! But, I can tell each day that I am getting better. There has been some pain and a lot of discomfort with this one.  But, I am encouraged with each passing day.  I also went to my post op surgeon appointment yesterday and she thought I was doing great.  And, the pathology report came back and all test results were negative for any abnormal cells so I have previved breast cancer!!!!



To give those of you who are interested a more detailed information about the surgery, here it is: My surgery was scheduled for 11 AM on Thursday May 5th.  I had to be at the one day surgery building at CMC at 9 AM.  Nathan was in Texas working and he was set to land in Charlotte at 8 AM.  I took the girls to school on Thursday and I really felt that both girls had less anxiety about this surgery than the last one.  I guess they are getting used to Mom having surgery.  My Mom also came with me for the surgery and she ended up having to pick Nathan up at the airport while I drove myself to the hospital, because I did not want to be late.  It was a good thing, because the hospital called me at 8:30 and said that the surgeries for that morning were moving along and they were ready for me.  When I got there, they immediately took blood work and checked me in.  Within another 15 minutes I was back in pre op.  All of the nurses and other who took care of me were very nice.  My anesthesiologist friend, Richard, was also there that morning and came in to see me before surgery.  It was a good thing because my veins were not cooperating with the IV (the nurse had tried 3 times!) so he with his mastered skills had to put my IV in.  After all of the prep and a prayer with Nathan, I was being wheeled back to the OR.  I do remember coming into the OR. It looked very similar with many people buzzing around and bright lights and big machines.  Within a few moments, I was asleep.  When I woke up, I was in recovery and I felt like I had been asleep for about 5 minutes.  I could see a clock in recovery and it said 5:22.  The room was spinning around and I remember saying, "excuse me mam, but the room is spinning."  She said no problem.  Then, I was out again. The next time I woke up about 30 minutes later, the room was no longer spinning and they were bringing Nathan and my Dad back to see me. I was very groggy and I could tell it was a much slower coming out from under the anesthesia than last time. I called both my girls, who were with Mom and had a brief, but positive conversation with them.  My Dad stayed for a bit, but he soon left and Nathan stayed with me for the rest of the night.  I do not remember much about that night except they gave me a morphine pump to use and I slept a lot.  The nurse also came in every few hours to "millk" my drains.  During the night I did use the morphine pump a few times, but it would put me to sleep immediately.  When I woke in the morning, Nathan went home to shower and change and my Mom came to help me at the hospital.  I knew that I wanted to go home that day, if possible, and to do that, I would have to get up out of my bed.  Both of my surgeons came by to check on me and said that I looked good and that if I wanted to go home, I would need to use the bathroom and manage my pain.  So, I was determined that I was going to get home.  The nurse gave me some oral pain meds, which took much longer to kick in than the morphine pump, about an hour.  When I went to sit up, I was very overwhelmed by the sharp pains that I experienced in several areas around both breasts and under my arms.  It was excruciating, to say the least and I had never experienced any pain like that before.  I looked at my Mom and said I did not think I could get out of the bed and she said, "Oh yes you are!" which helped me get my determination to do just that.  It was very slow with many winces and cries out in pain, but I did make it to the bathroom and I was able to go with ease (thank the Lord!). Then, my Mom helped me sponge off and after the pain meds started to kick in I could get a little more comfortable, if I did not move! I was able to go home after lunch that day and Mom took me home.  Nathan brought the girls home from school to see me and we had a short nice visit.  It was so good to see them.  Both girls were going to go to a different friend's house to spend the night so they packed their bags and I dosed on the couch.  I was so thankful for my friends who allowed the girls to come over for a fun, safe night.  I really felt good knowing that they were being so well taken care of.  My parents and Nathan took care of me that night and evening and it went okay.  Still sharp pains every time I moved, but the pain medicine helped me sleep.  I was able to sleep on my back, but definitely not my side.  The drains had to be "milked" and calculated every 4 hours or so.  Mom helped me with this since it was just too much for Nathan.  That was okay though, he was a trooper.  Since it was Mother's Day weekend, Nathan took the girls the next day to see his mother for the rest of the weekend, which was so nice because I was able to just let my Mom take care of me and the girls did not have to see me in so much pain.  By Sunday, I took the anti-nausea patch off that they gave me in the hospital and the next pain pill I took, made me sick to my stomach, so I was not having that and decided to switch to Advil.  I really felt that Advil helped alleviate the pain, just as well as the heavy narcotic except it did not make me sleepy.  Mom suggested I take a benadryl at night to sleep, which I did and that helped me sleep some.  Over the next few days, those sharp pains subsided and really I would describe how I feel as uncomfortable and tight, not really in pain.  I have been doing all of the arm exercises they asked me to like lifting my arms over my head and stretching them, as well as, the breathing exercises to ensure I would not get pneumonia.  I also walk 3 times per day, first around the house, then Mom's pool and I am now up to walking about 10-15 minutes around the block.  I still feel tired and I take one nap per day, but overall, I feel good about my progress.  The meals and visits from friends that I have received have been amazing and have taken the stress off of me to make sure that my family and "helpers" ie Mom and Dad, are being fed too! The next things I am going to focus on now is not having any complications like infection at the incision or hurting my expanders in any way. So, I am still in process and will continue recovering at home.  Thanks to everyone who has helped me in this journey!

Levacy

Saturday, April 30, 2011

Mastectomy surgery is next week for me!

My mastectomy surgery is scheduled for May 5th, only 5 days away! I am getting a little nervous, but know that it is the right decision for me to have my breasts removed and reconstructed to reduce my 87 % lifetime chance of breast cancer down to as close to 0 % as humanly possible.  My anxious feelings are similar to the ones I had before my last surgery-will I wake up from surgery, will there be any pain or complications, when will I be back to "normal", how will this surgery negatively effect my children, husband and family and how will I be able to take care of my family, house, job etc. during my recovery? When I have these thoughts, I realize that these problems are bigger than anything I can handle on my own, so the only thing that has helped me is to pray and give over all of these fears and anxieties to God.  I know he is big enough to take care of me during this time and I am trusting and relying fully on him.

God has already given me many provisions during this process-Great surgeons with Dr. Teresa Flippo from Blumenthal Cancer Center and Dr. Robinson from CMC Cosmetic and Plastic Surgery.  They are amazing doctors and so proficient in their field.  I feel completely confident that they will take the BEST care of me.  I also have an amazing friend who just had a Bilateral Mastectomy as part of her treatment for breast cancer and she has given me a plethora of information about the surgery and recovery.  I also cant leave out my amazingly supportive husband, family and friends who have supported me every step of the way.  Without them, I do not think I could go through with this. 

What I know about the surgery so far is that it will take about 4 hours. The first two hours, Dr. Flippo will remove as much of my breast tissue as she can (there is no way to get 100 % of it).  I will keep all of skin that surrounded my breasts, but will not be able to keep my nipples.  After the breast tissue is removed, Dr. Robinson will come in and adjust (which really means lift!) my breast muscles to the appropriate spot and then insert a temporary tissue expander behind the breast muscle.  He will inflate the expander with saline as full as he can, but not too much that my incisions will not be able to heal properly.  I will have one large incision across both breasts.  I will also go home with one drain in each breast to get rid of excess fluid. I will probably have the drains for 10-14 days and then he will remove them.  During that time, I cant shower, but can take a bath.  I will also have restrictions on lifting my arms and bearing weight, but I really don't know specifics yet.  After I get my drains out, I can continue the expanding process, by going for weekly "fills" of saline into my expanders until I get to a desired size.  This seems so strange to me like I am going to fill up my car's gas tank. After the expanding process is over, I have to wait 3 months and then I will have a minor surgery to remove the temporary expanders and put in the permanent implants.  Three months after that surgery, I can have nipples reconstructed and then three months after that, I can have my nipple color tattooed on to each breast.  Still cant believe I am going to have two tattoos!

What my friend told me about the surgery is that there is very minimal pain, but a lot of pressure post surgery and then intermittent pain when moving around for a week or so.  Also, your breast area is totally numb and feels very strange.  Some of the numbness will go away with time, but I will have no feeling in either of my newly constructed breasts long term.  My friend told me that it took her about 4 weeks to adjust physically and emotionally to her "new breasts."  I am hoping that will be similar for me. 

It has been really difficult for me to find the time to write in the last two weeks with my grandmother's unexpected death, having my annual piano recital for my students, getting as much adoption work done as possible and our family just got back from our much needed family vacation to Las Vegas.  But, I plan to continue this blog during my recovery from the surgery so other and possibly my girls will be able to have this information if they face the same surgery in the future. 

Even though I am very nervous about this surgery, I know that God is going to take care of me and my family.  I wanted to end this post with a scripture verse that I have read over this week.

Casting the whole of your care [all your anxieties, all your worries, all your concerns, once and for all] on Him, for He cares for you affectionately and cares about you watchfully. 1 Peter 5:7

Placing all of my cares in God's capable hands,

Levacy

Friday, April 15, 2011

Tribute to my grandmother

I know my blog is meant to be about my journey with BRCA 1, but a significant occurrence happened in my life this week that I would be remiss for not including.  My grandmother, Betty Lou Grove Rudacille, died to this world and went to heaven to be with Jesus on Saturday April 19th.  I have had my grandmother, who I affectionately called, "Granny" in my life since birth.  She was there when I was born, she helped raise me along with my grandfather, Ronald, all throughout my childhood and she had helped me raise my two children, her great grandchildren. I am deeply saddened about this loss, but I am overjoyed for her, as she is now in the presence of her Lord and Savior, Jesus Christ, and is there with her husband, brother, sister, parents and other relatives and friends that she has been a part from for many years.  She lived a very gracious and full life for 80 years and everyone who knew her, loved her.  She was a wife, a mother, a grandmother, a great grandmother, a sister, a daughter and a friend to many.  She and her husband had a strong connection that was evident in her death.  Her husband, Ronald, suffered a heart attack on November 20, 1997, recovered to some extent and then passed away on April 12, 1998.  Granny suffered a heart myopathy on November 17, 2010, recovered to some extent and then passed away on April 9, 2011.  You cant tell me that was just a coincidence. We eulogized my grandmother this week in the same church that she and Ronald were married.  It was one of the sweetest moments of my life.  I am missing my grandmother terribly and I know I will continue to miss her.  Gracie and Sophie are missing her terribly.  They were very close to Granny and went to her house every Friday night for the last 6 years.  During these times, she would cook them dinner, play make believe games like school and office, talk about her time as a child with her sister, AB, and would always have a special movie, puzzle or game to play.  Sophie asked me one day a few years ago, "When Granny dies Mom, where will I go on Friday nights?"  I cant believe that she is gone from this world, but I hold onto the truth that God's word says in Philippians 1:21 "For to me, to live is Christ and to die is gain." When Granny got sick in November and was in the hospital, she had a ventilator for about a week and could not talk. Being the big conversationalist that she was, she quickly demanded a pen and paper so she could write down what she wanted to say. My mother kept all of these notes that Granny wrote during that time, which mounted to about 20 pages.  I read over these pages the other day and one of the first ones I remember her writing was she wrote the word "LIVE".  At the time she wrote it, I took this as she wanted to live more here on earth and that she did not want to die.  Over the last few months, I have seen a transition with my grandmother, where before I do not think she really thought much about dying, but I saw her begin to process the reality of death and she came to some peace about it.  She always knew that she was going to heaven, but I think she was torn between living longer here on earth with her family and going to heaven to be with Jesus.  I have been studying the book of Revelation this semester with my dear Biblestudy group and one thing I learned is that living in heaven is full of more life than living here on earth will ever be.  In Psalm 23, the popular Psalm says "The Lord is my Shepherd, I shall not want. He makes me lie down in green pastures and leads me beside quiet waters."  In Revelation 7:17 God is described again as a shepherd but this time it says "The Lamb who is in the midst of the throne will shepherd them and lead them to living fountains of waters."  I firmly believe with all that I am that my grandmother is more alive in death than she ever was living here on earth.  She is with her shepherd who has brought her to the living fountains of water and one day, we will be together again in heaven. 

Tuesday, March 29, 2011

UPDATE ON MY RECOVERY AND PLANS

Well, I am over two weeks out from my surgery and I am doing great.  This has really gone easier than I thought it would. All of the prayers and support has really made a difference. One other huge blessing is I have not had ANY menopause symptoms to date! I really cant believe that.  I had fully prepared my mind that I was going to experience hot flashes, irritability and other symptoms since all of my doctors told me I would immediately go into menopause and would experience symptoms within hours, days and at the most weeks of my surgery, but that has not happened. I know it could happen in the future, but for now I am encouraged that I have not had any symptoms and that maybe menopause will not be as bad as I have heard....we will see.

I have my post op appointment with Dr. Hall, my gynocological oncologist this week and I cant wait to report how well I am doing.  He is going to be super impressed! I do still  have to take it easy on lifting things.  I have violated the "nothing over 2 pounds" rule a few times because I mean, come on, a gallon of milk weighs more than that so how am I going to pour myself or my girls a glass of milk? I have taken it easy on the lifting, allowing other people to pick up things for me at the store and I have not fed or watered the dogs since my surgery.  I really like that restriction, but dont tell Nate!!! I have also had to take it slow with walking.  If I walk too fast or too long, I have some spotting.  Nothing major.  That has been a little discouraging because I LOVE to exercise and usually work out about five to seven hours per week.  I cant do any weight lifting and I have not been able to jog or take my biking class.  I am back up to walking at a moderate pace for 30 minutes at a time. Today, I took two, 30 minute walks and was fine. So, I am making progress. 

I also have felt like myself for over a week now, which encourages me greatly and helps me have a happy attitude about this whole thing. That was one of my greatest fears that I would not feel like myself and be able to be the best wife, mother, social worker, etc.  But, that has not happened and I am going to continue to think positively that it is not. 

I have also made progress this week on my breast cancer risk.  As I have said earlier, I have decided to have a bilateral, preventative mastectomy to reduce my 87 % chance of breast cancer to as close to zero percent as I can get it.  I told me surgeon two weeks ago to go ahead and schedule my surgery and that I wanted to have it as early in May of this year as possible.   The reason for this request is just the timing of my family's schedule and my work schedule. Nathan is leaving at the end of May for his mission trip to Kenya when he is taking over 60 people!!! He also has many weeks after he gets back that he will be speaking at various summer camps, so I wanted to have this surgery behind us before his summer kicks off.  Also, the girls get out for summer break on June 9th and I wanted to be fully recovered by that time to not take away from their summertime schedule. I want to keep their world as normal as possible.  My oldest daughter, who is 10 years old, has had nightmares and other sleep disturbances since 3 weeks before my first surgery.  She is still having some of them, but since he surgery, it is definitely less.  But, I am anticipating more anxiety from her as I have this second surgery.  I want these surgeries over for them too.  I do not like to see them be anxious about anything.

So, back to the surgery scheduling...I was really discouraged when I called my surgeon's office a week after I requested the surgery to be scheduled and the insurance verification nurse stated she had not even called my insurance company yet! UGH!!!!! To add to this, I asked her if it looked possible for me to have my surgery in May and she said that Dr. Robinson's schedule is all booked up for May! This was NOT what I was told at my appointment.  I was really discouraged by this and then when I asked her how long that it would take to get the verification, she said it would take another week.  My spirit just sank at that point.  Those of you that know me, know that I am a planner.  If I have a plan, I can cope with just about anything.  If I dont have a plan, then I feel lost and out of focus.  This also makes me extremely sad and down, which is hard for me because I like being a positive person. But, all I could do was wait and pray for a miracle.   After I waited for another week, I called the insurance nurse last Tuesday to ask about the insurance verification.  She told me that my insurance had approved my surgery (thank you God!) and that the surgery scheduler would call me as soon as the surgery was scheduled.  I really anticipated that it would take another week to get the surgery scheduled especially since the surgery will have two surgeons-Dr. Flippo-the breast oncologist who will remove my breasts and the Dr. Robinson who will do the reconstruction part. I also knew that the longer it took to get the surgery scheduled, the less likely I was going to get the surgery done in May. 

The next day, I had a breast MRI scheduled.  I have never had an MRI for anything so this was a new experience for me.  It was not at all painful.  You just have to lay completely still for about 20 minutes while this LOUD machine checks you out.  I was a little nervous that the MRI would show some type of abnormality. I had been reading that first breast MRIs have a higher rate of showing something abnormal.  I knew the doctor would call me personally in the afternoon to tell me my results. So, about 2 pm, my radiologist, Dr. Gromet, called me and told me that my breast MRI was completely normal! Yahoo!!!! While on the phone with him, my surgeon's office called and left a message.  I called back and was told by the surgery scheduler that my surgery was scheduled for May 5th! I literally cried on the phone to this person and thanked her over and over again.  I could not believe that my surgery was scheduled so fast and for the exact timing that I had prayed for!  After the phone conversation and those two pieces of such wonderful news, I found myself all alone in my house, even though my kids and my husband were home, but enjoying the beautiful weather outside.  I just fell to my knees and thanked God for his provisions he has sent to me.  He has provided for me all the way during this journey and I am so thankful!

So, I am preparing for the upcoming months and feel very encouraged that I am going to beat these potentionally deadly odds that have been passed down to me.  I am going to "previve" cancer and live to support others who may have this same journey. 

Levacy

Thursday, March 17, 2011

Hysterectomy/Salpingo-Oopherectomy is done and I am recovering!

Well, it has been 6 days since I have a total hysterectomy/salpingo-oopherectomy to reduce my risk of ovarian cancer and I have to say, that everything has gone better than I expected it to! Praise the Lord!

As I have written before, I was very anxious for the few days leading up to the surgery and the only thing that helped me was staying busy! It was only when I had nothing to do, that I began to think about it and get anxious. 

To those of you who are interested in a recap of my surgery and recovery, here it is.  I was so glad that I was Dr. Hall's first surgery of the day on March 11th even though Nathan and I had to be at CMC at 5:30 AM! My parents spent the night with us and took care of the girls after we left.  My parents prayed with me before I went to bed on Thursday night and when I went to kiss the girls goodbye on Friday morning, Sophie had slept with a picture of me and had written me a note to tell me she loved me.  So sweet! We made it to CMC in like 20 minutes because there was absolutely NO traffic at that time of the morning.  We checked in with 4 other patients there for various surgeries.  There was this huge waiting room we were put in with about 20 people and I thought, "this is going to take forever", but they took me back, without Nathan, within about 10 minutes.  The pre-op process went well and I had a wonderful nurse that took care of me.  After she prepped me, Nathan was allowed to come sit with me.  We were introduced to my anesthesiologist, who my friend, Richard, who is also an anesthesiologist, picked out for me and we also met my nurse anesthetist.  They were wonderful as well and took extra special care of me.  Everyone kept saying that Dr. Hall may or may not come by to see you before the surgery.  They referred to him as "the captain of the ship" because he has been a gynecological oncologist for like over 30 years and he has teams of residents and interns that work under him.  The fact that he was so experienced really made me feel at ease about having him perform my surgery.  He did come by to say hello to me before the surgery with one of his residents and after a few minutes, it was time to go.  Nathan prayed for me and I got a little teary, but after saying goodbye to Nathan, we were rolling down the hall to surgery.  I remember going into the operating room and how big it was with lots of large pieces of equipment with many different colored lights, but that is all I remember until I woke up.  The surgery took a little less than 2 hours (just like Dr. Hall had said) and he went out to tell Nathan and my mom, who had gotten there by then, that everything was fine.  Our good friend, John G., also came up to the hospital to bring Nathan a biscuit and sit with him, which was so nice.  I also had a wonderful post op nurse who took care of me and it was a good thing because I had to sit in post op for almost 4 hours due to the fact there was no rooms available for me until about 2 pm that afternoon! I slept off and on for about an hour or so in post op, but when I woke up, the nurse let Nathan and my mom come back to stand with me.  It was great to see them.  I also called the girls' school and talked to both Gracie and Sophie to reassure them that the surgery was over and that I was okay.  I really did not have any pain after the surgery, but my stomach was sore from the 5 "bullet holes" I have from the laproscopic surgery.  It is truly amazing that they can perform this surgery laproscopically instead of through a large incision in your abdomen.  It cuts the recovery time down from months to days. Nathan and my mom kept me entertained in post op, along with all of the nurses there.  One of the nurses even gave them something to eat and Nathan kept telling stories (as he is so good at) to various staff and talked to one nurse about golden retrievers and dog breeding.  Nathan and my mom both stood beside my bed for the 3 plus hours, which really did not feel much longer than about 20 minutes to me, until they moved me to a regular room.  The post op nurse was nice to go ahead and take out my catheter as well.  Once in my new room, the nurse came in and said she was very surprised to see how well I was doing.  I was alert, talking on the cell phone to a friend and was ready to get out of bed and use the bathroom.  It did take me a few hours until my bladder woke up and I could pee, but after that happened, I was ready to go home.  Dr. Hall came back to check up on me with his residents (I think he usually just sends his residents, but gave me some extra care by checking on my personally).  He confirmed with me that the surgery went perfectly and that he had already checked out my uterus, cervix, fallopian tubes and ovaries and that they all looked normal to him.  PTL!!! The hospital had already done an official pathology report on my uterus and cervix by that time, which showed everything was normal, and Dr. Hall had prepared and sent off my ovaries and Fallopian tubes for an official pathology report, which he will have back by the time of my post surgery appointment with him in a few weeks.  Even though I could have stayed one night in the hospital, Dr. Hall said that I looked so good, that if I wanted to go home, I could.  So, he sent me home.  Yeah!!!! It took a few hours for them to discharge me, but we got home about 7:30 that night and after taking a quick shower, I went straight to bed.  I did take one pain pill that night and I think it helped me sleep all night.  The next two days, I was sore, but had no pain really.  I did not take any more pain medication, but did take Advil regularly.  It was so nice to see my girls again that next day.  They each had spent the night with a friend and their families had made it a special night for them.  I have been taking it easy over the last 6 days. Nathan took care of me on Saturday and part of Sunday, but then he had to go out of town for work in Texas.  My mom and dad essentially moved in after he left and have been taking care of me all week.  Really, they did not have to take care of me too much, just mainly helping me take care of my girls.  After the first two days, I don't have any more soreness and no pain at all.  I have started to walk and I can even work some now-from my couch. Since I had a full hysterectomy, my doctors have been able to put me on a low dose estrogen patch to alleviate or minimize any menopause symptoms.  They all say that you have similar symptoms of menopause that your mother did.  My mom has been through menopause, but had very few symptoms.  She does keep her house cooler than she used to so she does not get hot at night, but really did not have any other symptoms.  Surgical menopause is different than gradual menopause and because of my age, all of the doctors told me that I could have menopause symptoms within hours or days of the surgery and at the most a few weeks. To date, I have had no symptoms of menopause, but I am still waiting for menopause to strike me.  We'll see how that goes.....

There have been so many blessings during this entire process.  The two main things I was worried about-not waking up from the surgery and the doctors already finding abnormalities in one of my female organs are no longer worries for me.  I did survive the surgery, it went perfectly without any pain or problems and none of my female organs were already affected with any abnormal cells! I also have the huge weight of possible ovarian cancer lifted off of me because I have reduced my risk down to as close to zero percent as humanly possible. An unexpected relief for me has been that I am not as anxious about my future surgery to reduce my breast cancer risk because this one has gone so well.  Some of the greatest blessings from this experience has been all of the prayer support from my closest family and friends to acquaintances within our community to people whom I have never met, but know of me through someone else.  Their prayers were heard and answered! I have also received overwehlming support from family and friends through cards, phone calls, emails, visits, flowers and food for my family that has all helped ease my recovery.  I cant say enough about what a huge blessing it was that two of my closest friends (with daughters the same age as mine) kept one of my girls for the day and night that I had the surgery.  It was such a relief to know that they were being well taken care of and having a blast at an extra special sleepover! Another huge relief has been another friend who has taken care of our dogs for the few days that Nathan has been out of town because I would not be capable of doing it right now. 

If I had to share the hardest aspects of this experience, it would be (I know this is gross, but it really was the most difficult thing for me) the bowel prep I had to endure for the 24 hours leading up to my surgery and then the restrictions of no lifting anything over 3 pounds for 6 weeks! You dont realize how much stuff weighs until you are not supposed to lift anything over 3 pounds.  I did not think about how I am going to go to the grocery store or take a bucket of water to our dogs or even lifting a gallon of milk out of the fridge.  I cant do any of that on my own. But, I have tremendous support and know that I will get through the rest of my recovery well.

I want to end today with one of my favorite scriptures about prayer because I really am the most grateful for all of the prayers that were said on my behalf and the fact that my heavenly father heard those prayers, protected and guided my through this experience and gave me a peace that he will always be there with me. 

Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus" (Philippians 4:6-7)

Thursday, March 10, 2011

Tomorrow I will officially become a previvor!

Well, tomorrow is the day that I officially become a previvor of cancer! I have a lot of mixed emotions thinking about the surgery I will undergo to get rid of all of my female organs and reduce my BRCA 1 risk of ovarian cancer down to as close to zero as humanly possible.  I am anxious about a few things-complications from the surgery, the surgeon finding cancer in my ovaries once they are removed and then not feeling like myself as I enter the world of surgical menopause. I feel like I have prepared myself as much as possible for all of this and my mind and body are ready.  Things that have helped ease my anxiety have been cards of encouragement from friends and family, phone calls, visits and words of encouragement from my husband, family and friends.  So many people have offered to help with my children and bring our family meals during my recovery! It has been amazing! The emotional support I have is overwhelming and a true blessing to me during this time in my life!

Above all, my faith in my God has been the greatest source of spiritual strength during this time for me.  I know that God will see me and my family through this circumstance! I have been relying on several scriptures this week that I want to end with today:

Psalm 27:1
 The LORD is my light and my salvation—
whom shall I fear?
The LORD is the stronghold of my life—
of whom shall I be afraid? 


Isaiah 41:10

So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.

Psalm 42:5

Why, my soul, are you downcast?
   Why so disturbed within me?
Put your hope in God,
   for I will yet praise him,
   my Savior and my God

Psalm 42:8

By day the LORD directs his love,
   at night his song is with me—
   a prayer to the God of my life.


Levacy   

Friday, March 4, 2011

1 week til Hysterectomy/oopherectomy

Weill, this time next Friday my hysterectomy/oopherectomy should be complete and I will officially be "post menopausal."  I am excited and anxious to have this surgery behind me.  I feel 100% certain that I have made the right decision about this surgery and feel really good about moving forward. I met with Dr. James Hall from the Blumenthal Cancer Center for my pre-op appointment last week.  Let me just say that I love Dr. Hall!  He is quite a character with his "harry potter" glasses and his colorful bow ties.  He has a sense about him that he seriously knows what he is doing and that everything is going to fine.  He also has a wonderful personality and takes the time to really talk to you.  He told me during my appointment last week that "He and I were going to do this little dance together and that I was going to be just fine." And, not exactly sure why, but I believe him.  Everyone who knows Dr. Hall professionally or has been one of his patients, feels the same way about him.  He answered all of my questions and confirmed that he will be removing my ovaries, fallopian tubes, uterus and cervix.  I will keep my vagina in its entirety.  I am Dr. Hall's first surgery next Friday and have to be at CMC at 5:30! I am super happy about that because I do better first thing in the morning, so I just assume everyone else does too! Dr. Hall stated that the surgery will start at 7:30 and will take 2 hours.  It will be done laproscopically and the organs will be removed through my vagina (like a baby).  He will cut my cervix from my vagina and sew me up.  He said that I will be under general anesthesia and when he comes by to check on my in the afternoon, if I am doing well, I can go home! My good friend, Richard, who is an anesthesiologist at CMC, has checked on who is going to be my anesthesiologist that day and stated that he would trust the one assigned to me to put his wife or children under, so I also feel good about that.  The only thing I was kind of surprised about was that even though this surgery should be way easier than my mastectomy surgery, I can not have a bath or swim for 6 weeks and I can not lift anything over 2 pounds for six weeks either.  There are risks of infection and hernias.  He does not want me to run or bike either.  That is seriously going to cramp my regular exercise routine, but I am grateful that it is getting warmer and I can go for as many walks as I want!

One thing I have been very anxious about was the changes I am going to undergo entering surgical menopause at my age.  I have read all of the symptoms of menopause and none of them are good, except that I will have no more periods!!!! Because I felt this way, I went ahead and saw a menopause specialist prior to my surgery.  My appointment was yesterday with Dr. McLoughlin from the REACH fertility clinic in Charlotte.  My mother came with me to this appointment.  I was not quite sure about going to the REACH clinic for my menopause appointment because all I kept thinking was that I was going to be waiting in the lobby with all of these women my age who are there trying to get pregnant and then I was going to be called back to see menopause doctor.  To keep myself from feeling too anxious about this, I really just had to smile.  I was pleasantly surprised that the menopause clinic was on a separate floor from the fertility clinic so Mom and I had the waiting room to ourselves since we arrived so early for the appointment.  I could not help but laugh a few times when we were in the waiting room and the office assistant and lab technician kept looking at my mother and asking her questions like, "Do you need to have lab work done."  Or, "The doctor will be with you in a minute."  They thought SHE was the patient since she was more of the appropriate age to be seeing a menopause doctor!

I was SUPER impressed with Dr. McLoughlin, the menopause specialist, for several reasons.  I was her first appointment for that day and when she came in to her office through the waiting room, she stopped and said to me, "You must be Levacy, my new patient today...I have already read your records."  Already, from that first encounter with her, I knew that she was going to be personable and prepared, two characteristics I admire greatly in others.  Another reason I was impressed with her was that when I went back to her office, she talked with me for over 1 1/2 hours!  I could not believe it! I was mentally exhausted after the meeting, but I felt that she told me everything I needed to know in preparation for menopause.  Among other things, she took the time to explain to me exactly what a hot flash was and what the different options I had for estrogen therapy, which range from creams, mists and pills.  She informed me of long term studies of women who have entered menopause and had hormone replacement therapy like I am going to have.  She assured me that going on a low dose estrogen supplement was going to decrease the frequency and intensity of all of my menopause symptoms and that going on estrogen only has not been proven to increase breast cancer risk! She confirmed that if I kept my uterus and cervix, I would have to go on progesterone too and that could increase my already 87% chance of breast cancer.  So, no thank you to that! She also stated that I will not be able to replace the testosterone that I am going to lose with my ovaries because the FDA has not approved testosterone for women in menopause.  There is a HUGE need for specific studies on BRCA mutation carriers and the long term effects of surgery in relation to their cancer risk and the effects of long term hormone replacement therapy.  Since these gene mutations were only identified 15 years ago and testing for them really has only been in larger numbers within the last few years, there are not that many studies.  I have never been one to join a scientific study, but I have entered a study through the University of Toronto on the effects of a decision aid on a BRCA mutation carrier's decision making process.  I hope to enter additional studies to make the science more accurate for future mutation carriers. 

In addition to all of this information that she gave me, Dr. McLoughlin also spent the time to ask me about how I came to my decision and what my concerns were.  She seemed very interested in a patient like me because she said there are just not that many of us out there.  She said she has probably seen about 20 BRCA mutation carriers like me in her practice.  Even though I feel really good about having the surgery, one thing that I am anxious about is not feeling like myself post menopause.  I am worried that I will not be able to fulfill all of my roles as a wife, mother, social worker, piano teacher, friend etc etc.  She did tell me that I will never be the exact same again, but that I would have a "new normal."  That was difficult to hear, but I am appreciative that Dr. McLoughlin was honest with me.  She told me that I need to focus on me this year and my physical and mental health.  She told me that I needed to simplify my life and things that I do not have to do, to stop doing.  That was hard advice to hear and will be even harder for someone like me to do, but I think she is right.  I also shared with Dr. McLoughlin that I have sensed some anxiety from my children about the upcoming surgery.  Nathan and I have been honest with the girls about what is going on.  I never want to lie to them and keeping something from them is lying to them in my opinion.  I have been very direct and positive about this explaining that I am having these surgeries to prevent getting cancer.  I believe that Gracie understands more what is going on than Sophie because of her age and personality. Most things just sail over Sophie's head, which is a lot like I was as a child.  Gracie internalizes things and thinks about things.  I have noticed that she has had more anxiety over this within the last week.  This make me extremely sad, but I have to keep telling myself that it could be much worse. If I wait around and get one of these cancers, then the anxiety level for me and my family would be exponentially greater and I do not want that to happen. 

I feel very grateful for the medical professionals-Dr. Hall, Dr. McLoughlin and many others that I will hopefully share about later.  I consider it one of the greatest blessings during this process so far to be under the case of doctors so skilled in their area.  I really feel that this is just one way God is taking care of me as one of his children.  Sensing God's presence and provisions during each step of this process reminds me of one of David's songs in the Bible. Psalms 139:1-11

You have searched me, LORD,
   and you know me.
2 You know when I sit and when I rise;
   you perceive my thoughts from afar.
3 You discern my going out and my lying down;
   you are familiar with all my ways.
4 Before a word is on my tongue
   you, LORD, know it completely.
5 You hem me in behind and before,
   and you lay your hand upon me.
6 Such knowledge is too wonderful for me,
   too lofty for me to attain.
 7 Where can I go from your Spirit?
   Where can I flee from your presence?
8 If I go up to the heavens, you are there;
   if I make my bed in the depths, you are there.
9 If I rise on the wings of the dawn,
   if I settle on the far side of the sea,
10 even there your hand will guide me,
   your right hand will hold me fast.
11 If I say, “Surely the darkness will hide me
   and the light become night around me.”

With God on my side, I am ready for what is ahead.

Levacy

Monday, February 28, 2011

BRCA HISTORY, RISKS, SURVEILLANCE AND PREVENTION AND HOW I MADE MY DECISION

I have had a lot of people ask me what are the history, risks and current options for surveillance and prevention for BRCA gene mutation carriers so I thought I would share this information.  The information below was the first piece of information I received with my positive tests results from myriad.  After consulting with several professionals, these options were the ones that everyone recommended that I spoke with.  I also wanted to document what the current options are so that when my girls or others read this in the future, they will see how things have changed, hopefully for the better. 

HISTORY:

BRCA1 (breast cancer 1, early onset, often pronounced /ˈbrækə/[1]) is a human tumor suppressor gene that produces a protein called breast cancer type 1 susceptibility protein. It originally stood for Berkeley, California,as the first evidence for the existence of the gene was provided by the King laboratory at UC Berkeley in 1990. The gene was later cloned in 1994 by scientists at Myriad Genetics, who continue to have a monopoly on all BRCA genetic testing.  BRCA1 is expressed in the cells of breast and other tissue, where it helps repair damaged DNA or destroy cells if DNA cannot be repaired. If BRCA1 itself is damaged, damaged DNA is not repaired properly and this increases risks for cancers.

For me, the finding of this gene mutation in the early 1990s probably saved my life from ending prematurely to breast or ovarian cancer.  It has only been in the last several years (2005 to present) that awareness about these gene mutations has been raised and women and men have begun to be tested for this mutation in higher numbers. The first commercials have been out on public television since summer of 2010 about BRCA Analysis testing through Myriad.  Various television networks have produced shows and movies about BRCA gene mutation carriers.  In September of 2010, the congress unanimously passed a bill that made the last week in September to be National Hereditary Breast and Ovarian Cancer Week (HBOC), which raised much more awareness. 


I found out that I carry the BRCA 1 gene when I was just turning 34.  Just eight short years shy of the age of the first person in my family (that I know of) passed away from breast cancer and also the age that my grandmother was diagnosed with ovarian cancer. 

RISKS:

Positive for a Deleterious Mutation: Overview

If your test result is either "Positive for a Deleterious Mutation" or "Suspected Deleterious":
  • You have a mutation or alteration in either the BRCA1 or BRCA2 gene
  • You have hereditary breast and ovarian cancer (HBOC) syndrome
  • HBOC syndrome increases the risk of various cancers, primarily breast and ovarian cancer
  • While the risk of developing these cancers is high, not everyone with HBOC syndrome will develop cancer
Your Cancer Risks

If You Have NOT Had Breast
or Ovarian Cancer:
Mutation CarrierGeneral Population
Breast cancer by age 5033%-50%2%
Breast cancer by age 7056%-87%7%
Ovarian cancer by age 7027%-44%<2%
Male breast cancer by age 706%.05%
If You HAVE Had Breast
or Ovarian Cancer:
Mutation CarrierGeneral Population
Ovarian cancer15%not available
Breast cancer after 5 years27%3.5%
Breast cancer by age 7064%11%
Other Cancer Risks:*Mutation CarrierGeneral Population
Prostate cancer by age 8020%15%
Pancreatic cancer by age 802%-4%<1%

Most of the specialists that I consulted about this stated that my personal risk most likely would mirror the other relatives in my family that also have the same gene mutation, even though this theory has not yet been 100 % proven.  Since I inherited this gene from my father and his mother's side of the family, I know that my paternal  grandmother had ovarian cancer around age 42, breast cancer at 48 and breast cancer again in the other breast at age 55.  One of her sisters, who was also a gene mutation carrier, passed away from breast cancer by the age of 42.  Her daughter had one of the first prophylactic mastectomies ever performed in the 70s, but then passed away from ovarian cancer at age 60 (diagnosed at 55).  A male cousin of mine was diagnosed with breast cancer at age 55.  So, the fact that I have relatives who have had both breast and ovarian cancer in my family and it is a very early onset beginning in the early 40s, the specialists stated to me that my risk was probably on the higher end (87 % for breast and 50% for ovarian) and that I would most likely begin to develop these cancers around age 40. 

Managing Your Risks:

Increased Surveillance
  • Monthly breast self-exams beginning between the ages of 18 and 21 and annual or semiannual clinical breast exams, beginning between the ages of 25 and 35
  • Yearly mammography and breast MRI beginning between the ages of 25 and 35 (or starting earlier, based on family history)
  • Annual or semiannual transvaginal ultrasound and CA-125 bloods tests to screen for ovarian cancer beginning between the ages of 25 and 35 (or starting earlier, based on family history)
Chemoprevention
  • Drugs such as tamoxifen or raloxifen have been shown to reduce the risk of breast cancer
  • Oral contraceptives may reduce the risk of ovarian cancer
Preventive Surgery
  • Preventive removal of the breasts (mastectomy) significantly reduces the risk of breast cancer
  • Preventive removal of the ovaries (oophorectomy) significantly reduces the risk of ovarian cancer, and also breast cancer
Proactive Cancer Management Reduces the Risks

Preventive Measures
Proactive Cancer Management Reduces the Risks
For Men
  • Regular monthly breast self-exam
  • Annual clinical breast exam
  • Talk to your doctor about mammography
  • Follow population screening guidelines for prostate cancer
A few others things to note: the ovarian screenings (transvaginal ultrasound and ca-125 blood tests) are most effective in discovering a recurring cancer, NOT an original cancer. 

It has been found that most BRCA 1 carriers when they get breast cancer, the type that they get is called triple negative breast cancer.  This subtype of breast cancer is generally diagnosed based upon the presence, or lack of estrogen in the three receptors on the cancer cells.  The most successful treatments for breast cancer target these receptors. Unfortunately, none of these receptors are found in women with triple negative breast cancer. In other words, a triple negative breast cancer diagnosis means that the offending tumor's three receptors are all estrogen receptor-negative, thus giving rise to the name "triple negative breast cancer." On a positive note, this type of breast cancer is typically responsive to chemotherapy, which is a BRCA 1 carriers only option when he or she gets triple negative cancer.  Because of its triple negative status, however, triple negative tumors generally do not respond to receptor targeted preventative treatments, such as the drugs listed above (tamoxifen and raloxifen). Depending on the stage of its diagnosis, triple negative breast cancer can be particularly aggressive, and more likely to recur than other subtypes of breast cancer.  BRCA 2 gene mutation carriers usually do not have triple negative breast cancer and therefore can take the prevention drugs listed above.   

As I have already written, after getting this information and consulting with a genetic counselor, a radiologist, a breast oncologist and a gynecological oncologist, I have decided to have both of the preventative surgeries.  The ovarian surgery was easiest to decide on because I have already been able to have two biological children and Nathan and I decided after our second child was born, that we were not going to have any more biological children.  ALL of the specialists recommended that I have an oopherectomy to remove my fallopian tubes and ovaries (Fallopian tubes too because most ovarian cancers start in the tubes since they are so close together).  NO ONE recommended that I keep them.  They based their decision on the fact that I have already had my biological children and that ovarian cancer is so hard to detect.  Most of the time once it is detected, it has already spread to other organs in the abdominal cavity, therefore, making treatment difficult or unsuccessful.  Even though the mutation that I have DOES NOT carry any additional risk for cervical or uterine cancer, I decided to also have my uterus and cervix (hysterectomy) removed at the same time because if I keep my uterus and cervix, I would have to go on an estrogen AND progesterone supplements and my breast oncologist told me that progesterone could feed more breast cancer for me.  Since BRCA 1 mutation carriers usually get triple negative breast cancer, there is no increased risk for taking an estrogen supplement.  Also, the hysterectomy/oopherectomy is an easy surgery to recover from.  It is a 2-hour, laproscopic surgery and I will spend one night in the hospital. After 1-2 weeks, I will back to normal with only a few restrictions on bathing and lifting.  On the down side, I will go straight into menopause, but more on that another time. 

So, that decision was pretty simple.  Get rid of the fallopian tubes and ovaries since I do not need them anymore and decrease my ovarian cancer risk by 96 %.  

The decision to have my breast removed was a little bit harder for me. Why? because it is major surgery, has a 4-6 week recovery time and reconstruction (which I am definitely doing) is a process and could take a year or longer.  I really had to weigh the risks of surgery with the risk of getting breast cancer.  I talked with several friends and family members who either had had breast cancer in their 30s or are diagnosed with breast cancer right now.  Every person I talked to stated that if they would have been given the option of surgery to prevent getting cancer, they would have done it in a heart beat.  Those who ended up having a mastectomy stated that it was the easiest part of cancer treatment-much easier than enduring months of chemotherapy and the insurmountable stress and strain having a diagnosis of cancer and dealing with treatment puts on you and your family. 

In the end, it was my 87 % risk for breast cancer coupled with the fact that the type of breast cancer I will most likely get (triple negative) is considered by ALL specialists to be aggressive, early onset, difficult to treat and a very high likelihood to recur, that made my decision for me.  So, I have chosen to have a prophylactic (preventative) bilateral (both breasts) mastectomy to reduce my personal risk of breast cancer by 98%. 

Thursday, February 24, 2011

WHO SHOULD BE TESTED?

I have had quite a few people ask me if they or who should be tested for the BRCA 1 or BRCA 2 gene mutation and I wanted to share the answer to this question with those of you who have asked.  You may have seen in the past 6 months commercials on televison about BRCA Analysis, which is the testing available for BRCA1 and BRCA2 through the Myriad Genetic Laboratories.  These gene mutations affect BOTH women and men and carry risks for both of them. So, ANY adult who can answer yes to at least one of the following questions should be tested:

1. Someone in your family has had breast cancer before the age of 50
2. Someone in your family, of any age, has been diagnosed with ovarian cancer
3. Multiple people in the same side of your family have been diagnosed with breast cancer
4. Any male in your family has been diagnosed with breast cancer at any age

I can answer "yes" to all four of these questions.  Even if one of these are "yes" for you, you should consider being tested.  If the person or persons in your family who have cancer are still alive, they should be tested first if they are willing, but anyone can be tested.  The information above is from a packet I received from the Myriad Genetic Labratories, the only lab in the US who processes the BRCA Analysis tests.  If you feel you should be tested, I would recommend that you call your primary care physician's office and ask about testing.  The test is a simple blood test that most doctor's offices have or definitely can get the test. It is sent off to the Myriad lab and your results come back in about 2 weeks.  The tests are not cheap since Myriad has a monopoly, but health insurances should cover part of the costs.  My insurance paid about 20% of the cost and then I have to pay $300 for the BRCA 1 single site test.  You can choose to have the full comprehensive test done for both BRCA1 and BRCA2 or do one of the two single site analysis.  The full comprehensive test costs well over 1,000, so if you knew which type of gene mutation you may have, it is best to just do that specific test.  Part of the new health care bill passed last year is supposed to ensure that anyone in the US has access to this test and access to affordable or free genetic counseling about your options for prevention.  Good websites to check out about BRCA1 and BRCA 2 testing are:  http://www.cancer.gov/cancertopics/factsheet/Risk/BRCA, http://www.bracnow.com/, http://www.mayoclinic.com/health/brca-gene-test/MY00322

If anyone has any questions about this, feel free to ask me!

Tuesday, February 22, 2011

My blog has begun!!!!

I can't really believe it, I have started to write a blog.  I never thought I would do this.  Don't get me wrong, I do follow several blogs of my friends and many blogs of some of the families I have helped adopt children, but never thought it was for me.  Those of you who know me, know that I am one busy wife, mother, social worker, piano teacher, Bible study participant and exercise queen (well, not really, but I try) and I really do not have time to add one more thing to my life!!!! I also do not claim to be a good writer. In fact, I usually let Nathan handle the penning of important thank you notes and or writing our annual Christmas letter.  Writing has never been one of my strengths, but I do think that I have developed better writing abilities through my work as an adoption social worker since over my tenure in this field, I have probably written thousands of homestudies and post adoption reports (those of you who have adopted will know what I am talking about here) so if practice makes perfect, maybe I will do okay with this.

So, what am I going to be writing about in my blog? As you can see from my title, I am writing about my journey with hereditary breast and ovarian cancer syndrome.  No, I do not have cancer.  But, because I have the BRCA 1 gene mutation, my lifetime risk for breast cancer is up to 87% and my risk of ovarian cancer is up to 50%.  Compare to that general population of women with a 10-12 % lifetime risk of breast cancer and a less than 2 % lifetime risk of ovarian cancer, my risk is pretty significant.  My grandmother, whom I inherited this gene from, had both breast and ovarian cancer in her 40s.  She had a sister who passed away from breast cancer in her early 40s.  So, this gene mutation is real, it has an early onset and as the specialists have been telling me, it is aggressive, ugly, difficult to treat, but can be preventable.  I found out about my BRCA 1 status in September of 2010 and immediately began consulting with specialists in this field, scouring the Internet for information on this issues and talking to people that God has placed in my life who have had breast or ovarian cancer, have one of these cancers now or have the same gene mutation as me.  Through all of this research, consults with various specialists and a lot of time thinking and praying, Nathan and I have decided to have risk reducing surgery to hopefully prevent these cancers from ever becoming a reality for me.  I will be having a oopherectomy/hysterectomy in March of 2011 to prevent my ovarian cancer risk and a bilateral, prophylactic mastectomy, hopefully in May of this year.  Am I scared? Yes. Am I anxious? Oh, yeah! But, I know beyond a shadow of a doubt that this is the right decision for me.  God has given me a peace about this.  I believe that he is bigger than these circumstances that I have been dealt and that he is going to see me through them ALL THE WAY!! 

Now, to the why I am writing this blog? I know a lot of women with either BRCA 1 or BRCA 2 gene mutation blog about their experiences and decisions to express their feelings and help them cope with this overwhelming challenge of choosing surgery.  They even have creative and catchy titles such as "loosing the boobs" or "When the genes don't fit" or "I'm a previvor".  Some women may also blog about this experience to help enlighten the world about this issue and all of its implications and to empower other women (and men!) about their choices if they should have to experience the same thing. Believe me, I am all about therapy, developing healthy coping mechanisms, enlightenment and empowerment because, after all, I am a social worker and these words were not only drilled into me in graduate school, but are concepts I use in my everyday field of work.  But, to me, these reasons for blogging take a backseat to my real personal reasons for blogging.  My first and foremost reason for blogging about my BRCA 1 journey is because of my faith in my Lord and Savior, Jesus Christ and my belief that regardless of my circumstances, he deserves all praise, all honor and all glory.  I firmly believe that my God is bigger than my circumstances. I learned this week in my Bible study of Revelation that if I believe that God is big enough to conquer death and save this entire world, I should believe that he is bigger than any circumstance I may find myself in. Psalms 46:1 says that "God is our refuge and strength, an ever present help in times of trouble." God has always been there with me, even before I was born, he was there and will always be.  He will see me through good times and bad times and I should "Give thanks in all circumstances" 1 Thessalonians 5:18.  I am not mad at God for allowing this to happen to me, I give him thanks for who he is in my life and anticipate each day with him as he walks beside me on my journey. 

The second reason I have decided to begin this blog is for those two precious little girls you see in my profile picture.  These are the children that God has blessed me with in my life and entrusted to me to raise, to nurture, to love, to guide, to protect, to discipline and to teach.  Part of the reason I have chosen to undergo the risk reducing surgery is for them, so that I can be there for them for as long as I can.  My girls' reality is that they have a 50 % chance of inheriting this gene mutation from me.  Now, there is no BRCA testing for children, so it will be 10 plus years before either of them find out their fate on this, but if and when one of them does find out that they are also a BRCA 1 gene mutation carrier, I want to be their biggest supporter. Going through this experience, there have been so many times that I have thought, I need to remember this piece of information or what this person told me or how I felt about this, so I can share this with my girls someday, if needed.  And, I have come to a conclusion, there is NO WAY I am going to remember all of this!  So, I am going to use this blog to record everything I possibly can for them.  This blog is for them from their mother, who loves them more than her own life and would do anything for them.