Another perspective...

While preparing for surgery and the time thereafter, I purchased several books to occupy my time. Last week I finished one of them, and have decided to elaborate a little and ask a new question.

You already have breast cancer, but should you undergo genetic testing?

My response is "YES." The book I read last week was, Apron Strings: Inheriting Courage, Wisdom and Breast Cancer, by Diane Tropea Greene. In this book Diane the author discusses her families history of breast cancer. She gives great detail about her family and their struggles with the disease. It is very disheartening to read about their loss and pain due to breast cancer. Ultimately Diane and her sisters decide to be tested for the breast cancer mutations.

Why would it be beneficial to know if you have a BRCA mutation if you already have breast cancer? For Diane it answered the questions of what options to choose and when. Diane was diagnosed with breast cancer prior to making the decision about genetic testing. At the time she was given several options to choose from as to what she should do with her breasts. She decided to have a lumpectomy, but after further testing ended up having a unilateral mastectomy. Diane now had one reconstructed breast, and one natural breast. After a year of surgery, chemotherapy and doctors visits Diane revisited the idea of genetic testing. She and her three other sisters were all tested. Three of the four came back positive for the BRCA 2 mutation.

In many cases, breast cancer patients undergo surgery and treatment and can then have a little peace of mind that their cancer is gone. Unfortunately, those of us with a genetic mutation face a higher risk of reocurrence in the opposite breast, the possibility of the cancer spreading, and a higher risk of ovarian cancer. Diane had conquered what was visibly apparent, but what about the stuff that could still be hiding? When undergoing chomotherapy many women can experience "chemically induced" menopause. Diane had experienced exactly this so she made at the time a "simple" choice to have a preventative oophorectomy. Since her ovaries had become useless she had them removed. This was a much easier decision due to the effects of chemotherapy. She was still faced with the decision to, or not to remove her remaining healthy breast. After another lump was discovered Diane ultimately made the decision to remove her healthy breast. The pathology report came back clear, but not everyone is so fortunate.

In my mind I still believe that knowledge is power. Without knowledge and understanding we have very little to base decisions off of. So why is it important to have genetic testing done? In many cases where a strong family history is present genetic testing can provide information necessary to making informed decisions. In Diane's story she knew there was a strong family history, but found the need to fill in the blank. Now that her family has the information provided from genetic testing they will be able to make more informed decisions now and for generations to come.

My sister Katie has also had genetic testing done. Her positive results give her the opportunity to not only deal with her current diagnosis of breast cancer, but also help to possibly prevent a reocurrence in the future. Katie and her doctors will make decisions based upon all of the information they have available to them. Hopefully this information will lead to Katie outliving all of us with a cancer free life from now on.  Katie and I can also use this information to educate and inform our relatives, our children, and someday God willing our grandchildren.  With the information we have available today we can change our lives and those of our future generations.

Betsey's thoughts for the Day!

Felt like sharing, Hope you enjoy!


If you make big plans, plan for kinks along the way.

Take time to snuggle - with your spouse, and with your kids!

Tickles and giggles are worth every second.

You are loved by someone, even if you don't feel it right now.

There is always someone worse off than you.

YOU are the reason you cannot find your car keys.

Little girls are adorable, but they can also be evil.

Older siblings are usually innocent.

Smile at a stranger everyday, it makes both of you feel better.

"If your happy and you know it, clap your hands"

God Bless and happy thoughts!
Betsey

Oh, What a day!

It's time to celebrate!! My pathology report came in yesterday just before 5pm. We are cancer free!! Talk about a weight lifted off of my shoulders. I have decreased my chances of getting breast cancer by 90% over the last week.

Cody and I went in last Friday morning to Covenant Lakeside Hospital in Lubbock. Amazingly enough, I was completely calm. Between my own prayers and those of all of you who care for us, God was there beside me through the entire experience. We checked in down stairs and where escorted up to the surgical floor before 6am. I was first in line for surgery at 7:30 so the nurses where busy prepping me. My surgical nurse was a gentleman with a British accent. He kept me smiling and cutting up with him. After he put my IV in he walked out of my area saying "Jesus Christ, Superstar." I knew then that God had put together a great team for me! On the other hand, I think my Dad needed a few sedatives to get him through the day.

Most of the rest of the day Friday, I was incoherent. I remember hearing peoples voices, but not much more. Saturday was less of a blur, but I really enjoyed it when everyone left and I could just sleep. Sunday came around quickly and we were off to my Dad's house before noon.

Overall my pain has been tolerable with the help of muscle relaxers and pain medicine. The part that has bothered me the most is the swelling. The fatty area in the crease of my arm is extremely swollen, and my surgical bra tends to rub on it. Not much fun. I am also required to wear the surgical bra for about 6 weeks to keep things from moving out of place. Lets just say it feels a bit like they have tried to squeeze my medium size chest in to an extra small sports bra. Every new day is continually better than the day before, so I can easily say recuperation is in full swing.

Yesterday I had my first post-op visit with my plastic surgeon. They said everything looked wonderful, and removed two of my four drains. Talk about an eerie feeling. The two drains removed were located on the topside of my chest. They ran from a small incision on my side up and over the top of my new breasts and into the area that separates my boobies on my chest. I would say that there was about 18 inches of tubing inside of me. The nurse cut away the small stitches that attached the drain to my side and pulled the tubing out. I honestly do not have words to describe this feeling. Needless to say though, Cody could see the drain as it was moving across my chest and out of my side. I shiver just thinking about it. It was not painful just wierd.

During my down time I have been reading a few books. I can't wait to start into my list of topics I still want to discuss with everyone. One of the books that I have finished is Apron Strings: Inheriting Courage, Wisdom and Breast Cancer, by Diane Tropea Greene. From her book I have a new question to digest. Why people with breast cancer should be tested for the breast cancer mutations?

Until next week, God Bless!

A Simple Triumph!

I did it! My goal was to start folding laundry by mid-week, and I did it! Yesterday I was able to fold two loads of laundry then Cody put them away for me. On an even more positive note, I am feeling much better this morning. A great deal of the tightness in my arms and shoulders is so much less. I cannot say that it is completely gone, but is so much better than yesterday. It is amazing to think about how many muscles you use when executing simple tasks like folding laundry. I did obey the rules of not raising my arms above my shoulders. It seems like such a simple victory, but I am very proud of myself for pushing foward.

I am expecting a phone call today from my doctor with the pathology report. So lets keep on praying for good news! Thursday afternoon we will be going to Lubbock to see my plastic surgeon. I am hoping that we will be able to remove some of my drains. Overall, things are very good. I have enjoyed the many visits from friends and wonderful food.

It's Monday!

Today is the Monday after my Friday surgery.  My doctors let us out of the hospital Sunday morning.  What a relief.  A full nights sleep was such a blessing to me and Cody.  We will be staying with my Dad in Denver City for most of this week.  It is nice to have all of the help with the kids.  Terry drove me home yesterday and Cody  went to get the kids from his parents.  I was very impressed at how gentle they both were when they got to Dad's house.  JB came up to me and told me that I was going to be OK and patted me on the shoulder.  Taylor laid down beside me in bed and held my hand for about 30 minutes.  Taylor is a little upset that I cannot snuggle her in my lap and carry her around.  Overall though it is good to be out of the hospital with all the beeping machines and interrupting nurses. 

I am well on my way to recovery.  My oncologist was able to remove all of my breast tissue leaving a great deal of bruising on my upper chest.  The plastic surgeon placed the implants under my pectoral muscles and also attached a tissue flap to my muscles.  The tissue flap reduces the overall time that it takes to finish reconstruction and also reduces the amount of expansion that is necessary.  My plastic surgeon was able to fill my expanders with 250cc of saline each.  With Katie's surgery they did not use the tissue flap and were only able to fill her expanders with 120cc each.  This means that my whole process should take a little less time than Katie's.  The goal is to fill my expanders with a total of 550cc's each.  I am going to have perky breasts.  Cody told me in the hospital that the girls where much perkier already. 

My pre-surgery experience was wonderful.  Cody and I got up at 4:30 am and where at the hospital by 5:30.  We went to admitting answered a few questions, and were off to the second floor to a waiting room.  From the waiting room we went to the surgical prep room.  I changed into the basic boring blue hospital gown and perched myself onto the moveable gurney.  My nurses then started prepping me for surgery and we signed a mountain of paperwork.  I was able to visit with a nurse from the SPOC program.  This program will take the extra tissue from my mastectomy and use it to try and grow tumors for research purposes.  If the tissue is able to grow tumors, specifically cancerous tumors, they will be able to use it for all kinds of research.      

The best part of pre-op was my nurse.  He was British and such a hoot.  I think he made everyone in the room smile.  He was singing songs, and talked to Cody specifically about what his goals for my surgery where.  D, DD, or maybe even an H.  My anesthisiologist  was also wonderful.  She was a little petitie thing with glowing red cheeks.  Her gifts to me were little pink cocktails before and after my surgery.  Whatever my cocktail was made of was wonderful.  I came out of surgery without being sick, and slept a great deal of the day on Friday. 

Both of my doctors where very happy with the overall results, and feel like my end results are going to be very good.  I will be going back to see my plastic surgeon on Thursday, and my oncologist will be calling me with pathology results sometime before Wednesday.    God has truly been there for me throughout this process, and gave me a true peace on Friday. 

God Bless, and many thanks!

The Day After

Hello everyone,

It is now the day after surgery. I slept alot yesterday, and don't remember much about it. Sometime last night the elephant that had been sitting on my chest decided to leave. There is still a great deal of pressure, but I am looking forward to getting up in a little while and walking around. We are now on the road to recovery, and that is where I have wanted to be.

My doctor visited this morning, and said everything was looking good. I have alot of bruising on my chest around the tops of my breasts, and the pressure that I feel comes from the expanders. They placed the expanders under my muscle tissue, and will be streching my muscles out over the next couple of months. So I will feel pressure each time they do this. Katie has told me that the expansion is not as painfull as what I am feeling today.

Overall, I think I am doing very well. I am especially looking forward to my shower in a little while. I wanted to thank all of you for your prayers, and I know God will be helping me through the recovery process too.

the night before.

Well, I am typing this on Cody's iPhone so I am sure I will go back later and make corrections. We are staying the night at the embassy suites in Lubbock. Not quite home but it beats having to be up at 2am to drive in from Amarillo. I can say that right now I am not nervous. We enjoyed a very nice dinner with Dad and Terry and came back to the hotel to visit with my aunt Linda and her friend Tom. Cody was his usual laugh arrowsing self so it was a wonderful evening .

I feel really good right now and I am ready for tomorrow to be over so we can start on the road to recovery. Crazy as this seams I hope to be folding laundry by mid week. I have set goals for myself to make sure that I don't just lay around prolong my down time. Don't worry I will be taking it easy, and I will not overextend myself or push my limits. My goal is not make things harder on myself than it should be. I just feel that if I gradually start using my muscles and continue to strech them daily I will do better overall.

Enough rambling on my part. I am excited about tomorrow for a few reasons. I was contacted about a reasearch study that is being carried out by TTUHSC and Joe Arrington Cancer Center. SPOC is the name of the study. I am not sure what it stands for but will find out tomorrow. The overall idea is that they take the tissue removed from my breasts that will not be sent for pathology and use it. My boobies will be used to help out with a cancer research study!!! Once again, I will find out more about it tomorrow. From the phone conversation I had they will be using my tissue to grow tumors. After the tumor has been grown they will try new treatments to see how effective they are in combating the tumor. I cannot think of a better place for my boobies to go!

There is also another bit of information I talked with my genetic counselor about today, but I am going to keep it a secret for a while longer! Nonetheless though, it is very exciting!!

Well, God Bless all of you, and keep the prayers going for us tomorrow!

Anxiety!

Three days left until we load up the family and head to Lubbock. We have decided to take the kids swimming Thursday evening at the hotel in Lubbock before Gigi (Cody's Mom) picks them up for the weekend. After the kids are off to Gigi's, Cody and I will hopefully have a somewhat peacefull evening. Then, Friday is the day. I expect we will be going to the hospital early Friday morning for the admission process and to get prepped for surgery. If you have not figured it out yet, I will be having my double mastectomy and expander type reconstruction this Friday, March the 12th.

We are at peace with this decision and truly feel that it is for the best to go ahead with the procedure sooner than later. My biggest problem thus far is that I enjoy being in control of maintaining our home. I do not always enjoy all of my chores daily, but overall I would not want anyone else doing them. Even though I like being in control I also have to be realistic. I have arranged for a housekeeper for a little while, and have tried to do my best in instructing Cody as to how I do things. Once again though, lets be realistic Cody will probably do things his way. Depending on others is definietly not my strong suite. Another lesson from God.

My sister, Katie, has been so generous as to give me the ins and outs of what to expect with surgery. She has given me detailed lists for: what to bring to the hospital, what to expect immediatly after surgery, her timeline as far as recovery, and she is even letting me borrow her pillow for the ride home. I think my mind is a bit more at ease beacause I know that I can go to her with any of my questions.

I have purchased 6 books that I hope I will be able to immerse myself into during my recovery. They are all about BRCA mutations and breast cancer. Hopefully I will gain a plethora of knowledge, and will be able to add more to my list of topics already scribbled into my notebook for my blog. Thus far I have enjoyed so very much being able to share the knowledge I am gaining thru this process with all of you.

I am hoping to be able to post some updates, or have Cody post some after my surgery. If I am not able to share everything on my blog immediately, I will be journaling about it and intend to share with you soon. Until then, please keep me, my family, and my doctors in your prayers.

Peace of Mind...

...the advantage of knowledge is this: that wisdom preserves the life of its possessor. Ecc 7:12

"Have faith in God," Jesus answered. Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours. Mark 11: 22, 24

Is any one of you in trouble? He should pray. Is anyone happy? Let him sing songs of praise. Is any one of you sick? He should call the elders of the church to pray over him and anoint him with oil in the name of the Lord. And the prayer offered in faith will make the sick person well; the Lord will raise him up. James 5: 13-15

These are just a few of the versus from the Bible that give me encouragement. Lets be honest here, I am far from perfect. I do not get around to reading my Bible everyday even though I try. There are many days during the week when I do not get around to my prayer journal. With all of that said though, I do PRAY everyday. Often it happens during daily tasks while my body is busy doing chores. I know this is not what God prefers, but I still know he is listening. He hears everything I bring to him no matter when I bring it. He does not mind if I call on him several times throughout the day. God wants me as one of his children to talk to him. He wants me to feel comfortable asking for his help and giving my burdens over to him.

Over the past four years I have grown leaps and bounds in my personal relationship with God, and he has rewarded me for my efforts. I have been given peace of mind. Next to salvation, this is one of the greater gifts in life in my opinion. Knowing that God is on my side is a truly awesome thing. He is always there for me even when others are not able. God is never too busy!

God knows me better than I know myself, and for this reason he has made it important for me to have a support group here on earth. He wants me to grow in my relationship with him, but he knows that I will need help along the way. Over the years he has given me and Cody several Church families to help us in the stage of life we were in. He has provided for us what we needed mentally and emotionally over the course of our marriage. God used each of these Church families to challenge us and help us grow in our marriage as well as in our relationship with him. He has taught us that being present and listening is important, but service for his good is also vital for maturity. I have no doubt in my mind that God has had a hand in every step of our lives thus far. He has opened and shut doors at various times to encourage the changes that have brought us to where we are today.

By being part of such wonderful Church families over the years I have learned that they are there for a reason. They teach you lessons, keep you accountable, help you raise your children, and they pray for you. God has taught me that prayer is so important. Prayer is your way of communicating with God. I know their are differing opinions about prayer, but what could possibly be better than having a direct line to God? He wants me to talk to him, not only for myself but for others too. God also wants me to ask others for prayers on my behalf. He is on my side, and wants me to have the encouragement I need.

Mastectomy & Reconstruction: Part 3

The second category of breast reconstruction is tissue flaps. Your own tissue is taken from donor sites on your body and used to form new breasts. There are different areas on your body that tissue can be taken from, therefore, resulting in a name for each donor site.

Who wants a tummy tuck? TRAM flap reconstruction takes tissue that would be removed in a traditional tummy tuck and uses it to form a new breast. TRAM (Transverse Rectus Abdominus Muscle) can be executed one of two ways. Pidicled TRAM flap involves a football shaped area of skin, fat tissue, and muscle located in the lower portion of the abdominal muscles. Imagine placing a two-dimensional drawing of a football centered over your belly-button. The two points of the football would be touching your hip bones on each side. This gives you an idea of where the tissue for your new breast would come from. In this process the tissue is removed from its original location with blood supply intact and tunneled under the abdominal skin to its new location on the chest. In this method, there are risks for hernia and blood clots.

Free TRAM flap reconstruction has become more popular and is beginning to replace the pedicled flap. In this method the above mentioned football is completely severed from its original position. The flap is then transferred to its new position on the chest. Microsurgery is required to reconnect a blood supply to the flap. By connecting a new blood supply to the flap in its new position there is better blood flow to the tissue. There is still a risk of hernia due to the loss of abdominal muscle.

DIEP flap breast reconstruction is similar to the above methods in the sense that it takes tissue from the same area. The tissue taken is limited to the skin, fat, and teased blood vessels. Meaning that there is no muscle tissue removed, only blood vessels from the muscle. Being able to remove only blood vessels significantly reduces the risk of hernia and also reduces healing time. Microsurgery is once again required to reconnect a blood supply to the transplanted tissue.

SIEA flap has improved further on the DIEP method. It is essentially the same with the exception of completely avoiding the use of any tissue linked to the muscle. Meaning that the blood vessels used are within the skin and fat tissue transferred. The superficial inferior epigastric vessels to be exact. There are very few patients who will be a candidate for this type of procedure.

Well we have completed our tummy tuck, but in some cases only one breast has been produced. So what are our other options for tissue transplant? We have two other options. Latissimus Dorsi flap uses tissue located to the rear of our natural breasts. Take your right hand and reach under your left arm to your back. The tissue under your hand will be partially detached and moved under your skin to the front of your chest. Like in the pedicled TRAM flap the blood supply is not cut. This method does not result in a large breast, so it is commonly paired with implant or expander type construction. You will have scarring on your back, and muscle weakness for a period of time following surgery.

The last area utilized for flap reconstruction is the booty. The GAP (gluteal artery perforator) flap uses skin located in the upper portion of the buttock. This results in a flatter bottom, but a very nice feeling breast. The tissue taken from your buttocks is completely severed and transplanted, therefore, microsurgery is necessary with this method to connect a blood supply to the new breast.

Flap reconstruction uses fat tissue from your own body, so the overall size of your breast will fluctuate with weight gain and loss. You will most likely experience sagging at some point in time because of the stretching of the skin with weight fluctuation. Flap methods are commonly used in women who have had a unilateral (one breast) removed to achieve an asymmetrical look with their remaining breast. It is also popular with patients who do not want the everlasting look and feel of implants. If you would like additional information I would suggest the following sites.

http://www.breastreconstruction.org
http://www.breastflap.com
http://www.alwaysyouthful.com

Mastectomy & Reconstruction: Part 2

If you missed yesterdays blog, you might scroll down and read it before starting part 2. A little review from yesterday. You can choose to have mastectomy and reconstructive surgery at the same time, or you can opt for mastectomy and decide later about having reconstruction done.

There are several types of breast reconstruction available. They fall into one of two categories: implants or tissue flaps. Implant reconstruction typically uses a temporary expander that is placed under the pectoral muscle. Over a period of time saline is added to the expander and the muscle tissue and skin is expanded to a desired size. With this type of surgery the surgeon usually determines the size of the final implant before the procedure begins. There is some room for picking your size, but your available skin plays a large role in how big or small you will be. If you were a small "A" before you may not have enough skin elasticity to become a "D". So please do not go into this with unrealistic expectations. On the other hand though, if you have been wanting to downsize the girls this would be a good time for that. There are a few different methods to choose from if you are interested in implants.

The most common method is the one I have mentioned already. The expander is placed at the time of mastectomy. The overall time needed for expansion is highly variable. Women who have cancer and are undergoing treatment may need more time to recuperate between saline injections. There may be some pain and tension each time an injection is made. I have heard the analogy of having braces tightened or new rubber bands placed equated to this process. Each person will have a different experience. Expansion has been documented anywhere from 6 weeks to many months. After the process is completed a less invasive outpatient procedure will be preformed to replace the expander with an implant. Another decision - Saline or Silicone? (I am planning a full day for this discussion) Once the implant is placed your body is given some time for the implants to settle. If any adjustments need to be made they are done after the settling process is complete. This is the most common implant procedure, but there are slightly differing options.

Direct-to-implant ("One-step") reconstruction is a slightly different method. Not all women will be a candidate for this procedure, and there are not as many surgeons who use this method. First of all, you will need to find a plastic surgeon who will preform this method and go for a consult to see if you are a candidate. This method does not require expansion. In lieu of expansion the one step procedure uses an acellular dermal matrix to help create an instant pocket for an implant. Essentially this is a natural tissue that is stitched to the sides of the muscle. By extending the tissue in this manner there is no need for the expansion process. At the time of surgery the implant is placed, and your breasts are complete. After a few months of settling outpatient surgery can be preformed to achieve symmetry and correct any flaws.

Implants will never give you the feel of natural breasts. By choosing this option you may have less sensation than if you decided on a tissue flap method. On the other hand though, the girls will not be heading south anytime soon. They will remain perky and in place for as long as you have them. Tomorrow I will be discussing the different types of tissue flaps. For more information I would recommend the following.

http://www.breastrecon.com/id27.html
http://breastreconstruction.org/typesofreconstruction
The Brest Reconstruction Guidebook by Kathy Steligo