Options weighed & decisions finally made !!!

       First, I am so happy to say that 2 more women (who I have never met) have completed their genetic testing & have received NEGATIVE results.  This is a result of me simply sharing my story & the many of you that have shared it for me........ sooooooo cool !!!! Again, thank you so much to those who have shared, hopefully we will help educate & possibly save someone's life in this world from way down here in "Lil ole' Mandeville".

     Since my last update, so much has happened. I will spare you all the details & try to summarize my past 5 weeks. I have weighed ALL of my options from doing my research, & having many consults with several doctors to have surgery. After learning that I am BRAC1 positive, I have made my final decision on all 3 of my doctors; my breast surgeon, plastic surgeon, & my oncologist. (Whew!!!! Glad that's over).

     My first surgery date is scheduled for Jan. 13th., I have taken my doctors' advice & have chosen the 3-stage approach. On Jan. 13th, I will have a Double Mastectomy in which my breast surgeon & plastic surgeon will work together to remove hopefully 98% of my breast tissue & 40% of my skin, decreasing my chances of breast cancer from 87%-94% to only a 2% chance.

    
     Immediately following my mastectomy (during the same surgery) my plastic surgeon will begin reconstruction by creating pockets in my chest wall & inserting temporary implant expanders. Alloderm , (cadaver skin) will be used to hold the expanders into place since there will not be any tissue left to support it. (HOLY CRAP, Ouchhhhhhh....yeah....I know). This surgery will take anywhere from 6-8 hrs. I have been told that it can take 2-4 days to receive my pathology reports back.

     Hopefully, I will still be out of it until the reports come back so I do not worry myself crazy. Most women who I have made friends with that have had the same procedure that I am scheduled for, say that the first 2 weeks after surgery is basically a blur.

     The next phase, which will be anywhere between 2-4 months later,  my oncologist will do a oophorectomy, (removal of my tubes & ovary)  to decrease my 50%to 60% chance of ovarian cancer down to 0%. 

      The final stage will be undergoing surgery to remove the temporary implant expanders & exchange them permanent ones. This procedure can actually take place between my mastectomy & oophorectomy or can actually have to wait up to 10-12 months, depending on my healing process.

      Soooo....I will have a long & interesting journey ahead of me however, since I have been found positive for the BRAC1 default gene, the early onset of breast cancer with atypical cells, the decision to have surgery was pretty much a no brainer for me. It was the decisions pertaining to the surgeries that are overwhelming.  

     I recently learned that if I were not choosing to have the surgeries, in addition to the screenings, tests, blood work, etc. every 6 mths, there is 1 other option. Tamoxifen is a chemoprevention drug that is metabolized into compounds that bind to the cancer cells inside the estrogen receptor but do not avtivate it. There is only a small percentage of women & men who take Tamoxifen that have success with blocking the breast cancer cell growth. Tamoxifin has to be taken for 5 years & may or may not cause symptoms such as hair loss, weakness, fatigue, nausea, etc. So....THIS IS NOT A OPTION I AM INTERESTED IN.

     Back to the basics, the whole reason that I am choosing this route is to live longer for my children, stay around to watch them grow & continue on into their lives & to be around for my family & friends that mean so much to me.

     As for my mom, she is in great health & feeling fine. Mom is adamant about postponing her preventative hysterectomy until I am somewhat healed from my mastectomy & temporary reconstruction surgery. I can't argue with her any more, she won the battle so I just have to swallow that hard pill as much as I HATE to do it.

     I have recently joined a group that consist of women of all types of nationalities & are from all over the U.S., UK, (basically anywhere you can imagine). This group of women have all either been through the surgeries that I am preparing for or have already completed them. This Facebook group page is very private, shows all types of before & after photos, ALOT of the bad & ugly complications /infections, necrosis, seromas, etc. that are common after this type of surgery. I have learned so much from these women & find my self asking them 2-3 questions a day, mostly during all hours of the night due to my lack of sleep lately.

     Here is a great link with a lot of good information explaining more about the different genetic mutations. This link is very informative & even points out the warning signs to look for. www.cancer.net/cancer--types/hereditary-breat-and-ovarian-cancer

     I am usually someone who always has a plan, knows where I am going & what I'm working towards. But I will be honest & admit that kind of focus has been lacking the past several weeks. So here is my plan & what I am going to do, I am going to stay positive, stay calm, continue doing my research & I'm going to beat cancer's a$$ before it has a chance to take me from my children & the ones I love.

Please continue to share & help me spread the word so we can hopefully increase the awareness about BRAC genetic mutation testing & HELP SAVE SOME LIVES!!!!!!

XOXO,
Cindy

P.S. Please continue to pray for my mom.
 

 

     

 

Doctors, testing, decisions, & did I mention decisions?

    
     The first thing I would like to touch on since my writing my 1st blog, is again; my purpose & reason for sharing this personal journey that I am on. For some reason, I just feel the need to express how I'm feeling, an avenue to pour my feelings into, what I'm learning, whether its in a notebook or online for the whole world to see. I just feel that sharing my personal experiences, feelings, and decisions will ultimately enable me to choose my destiny. So far my decision to have my mother & I undergo genetic testing, is going to allow my mom to have a better chance to live longer than she would have before. I chose to share because knowledge is power, knowledge has saved my life (although this is not a easy pill to swallow or digest), I am willing and eager to share my very public journey & I hope that my story will save many others. I just want to give anyone reading this a better understanding of what BRAC positive means, then it will all be worth it.



     Wow! The past 2 weeks have been crazy. I've met with 5 different doctors & have had a huge variety of tests performed. I've been educated & have learned so much more about my BRAC1 mutation, it's hard to wrap my mind around this whole other world that is out there & that I am a part of.  I received a lot of emails & people asking me "so you have cancer"? No, I do not have cancer however; I carry the genetic gene that causes breast & ovarian cancer which increases may chances drastically. Being BRAC1 positive is considered a "early onset" of cancer, it means I have a "faulty gene", it does not work properly.

     To put this into perspective, my oncologist explained to me that the general female population has a 13% lifetime risk of breast cancer and 1.5% chance of ovarian cancer (1 out of 70). Being BRAC1 + puts you at a 85%-95% (1 out of 8) chance of developing breast cancer & a 60% chance of ovarian cancer. Women with the BRAC1 + gene are most likely to develop theses cancers before menopause.

Definition of the BRAC gene- BRAC1: A gene that normally acts to restrain the growth of cells in the breast but which, when mutated, causes breast cancer. the gene's full name is breast cancer 1, early onset.

     The fact remains that there is no CURE for breast cancer, it kills thousands every year. My oncologist told me that genetic cancer comes earlier & more aggressive, and at a higher rate of recurrence. I keep my fingers crossed every day, hoping that a cure will be found for...my children, family, friends, & the world.



 

 

     For me, I have 2 options:

 

1). Breast & Ovarian blood work, tests, MRI's, ultrasounds, & mammogram screenings every 6 months to monitor myself so when the cancer arrives, it is detected early.

 

(Think about it... imagine the anticipation you have when you go to your doctor to have you or your child tested for strep, flu, etc. Take that feeling, and imagine yourself waiting for the results to come back to confirm you do or do not have cancer).

 

2). Preventative Double Mastectomy with or without reconstruction & a preventative oophorectomy (removal of ovaries & tubes). Of course these surgeries come with many risks factors, worries, horrible pain, miserable recovery time, forced menopause, etc...BUT... this would reduce my chances of breast & ovarian cancer to a 1% lifetime chance.

 

     As I mentioned in my first post, I've had my share of all of the tests associated with option #1 & the waiting game for test results and/or biopsy results IS NOT fun at all. It's rather very stressful for not only myself, my mother, friends & loved ones around me. I have had annual mammograms since the age of 25 because of my family history of breast cancer. I can tell you, not only does it cause stress during the weeks awaiting the results, but worry, difficulty focusing, unable to be the fun & crazy mother my kids are use to, not being able to give it 100%+ at work, to my bosses, co-workers, etc. BELIEVE ME, I'd much rather be the best mom, employee, daughter, aunt, friend, fishing, 4-wheeling, on the river, in the swamp or anything else rather than waiting on test results. Can you imagine going through that every 6 months UNTIL you get the one result that says you have cancer? I can't.

 

     For the past 2 weeks, my breast specialist sent me to many different types of doctors for extensive testing & I also made my own appointments for consults to weigh both of my #1 & #2 options. 

 

      One of the 1st tests I had last week was a breast MRI. I was pretty nervous for my breast surgeon to take a look inside, I felt like there was no telling what she would find especially with this very clear & detailed screening.

 

                                                           My Breast Surgeon

 

 

As always, "My Support"

 

Mom saying, "Cindy Lynn, put that phone down".

Alan looking a little on the "nervous side".

 

MY Results

 

 

Holy Crap, I was terrified until I received the news that all were benign!!!!!

 

My Oncologist GYN



 

      Last Wed. mom & I met with our new oncologist for the first time. She is the one who taught me so much more about BRAC1, she was so amazingly knowledgeable & detailed. She explained everything to mom & I so clear. Our risks, percentages, pros (not any) cons, options of surgery, what to expect with surgery, after surgery, etc.

 

 

MY Results

 

 

Another HOLY CRAP!!!!!!! I thought, not another test to be completed "in house", rushed, & 

 the results sent overnight to my doctor. After they discovered this cyst on my ovary, they called my doctor & she immediately ordered C-125 blood work on the spot. C-125 blood work will pick up any pre-cancerous or cancer cells throughout the entire body. To say the least, I didn't sleep at all & worried myself sick until I received my results that the cyst was not cancer & blood work was all clear. Whew!!!!!! Deep Breaths!!!!!!

 

 

The Plastic Surgeon

 

 

     I thought this appointment would be a little less stressful, more on the "positive" side of all of all this. After meeting with the nurse for over a hour filling out paperwork & answering questions, finally the doctor came in. He spoke a little about BRAC1 & different reconstructive options that were available if that is the route I chose (Preventative Surgery).

      I didn't realize there were so many different ways reconstruction is performed after breast cancer or preventative reconstruction. After 2 hours with him, & being marked on basically all over my body with a BLACK marker feeling like a project, I was about ready to just leave & go back another time. This was BY FAR the most confusing appt. with the most options, explanations, risks, decisions, etc. After quickly deciding I WAS NOT interested in learning about fat or muscle transfer reconstruction options, (I was about to puke from looking at the pics) I asked about simple implant options.

 

 

My Options

 

          SERIOUSLY???????

 

THE Result

 

I told the doctor I would get back to him, went straight home & popped the top on a ice cold Ultra!!!

 

     In the past 2 weeks, the one thing I do know for a FACT is that I'm not willing to take any chances. As of now, all of me & my moms  tests have come back "ok", we both still have 2 more to do. No more risks for me - my risk is high enough. I will not go through all of these tests & screenings over & over waiting for cancer to rear it's ugly head. If I chose that path, I cant imagine waiting 3-4 months to receive the results & find out if the chemo "helped in any way".

 

    Sorry for such a long post this time but there is so much going on so fast & I will try to keep up.

                                                                 

                                                                  ****Again****

     

     If you or someone you know has a family history of breast or ovarian cancer please, please, spread the word for me. If they have at least 2 immediate relatives, they can get tested for the genetic mutation gene BRAC1 & BRAC2 for FREE as long as they have some type of insurance. My breast surgeons name is Dr. Legarde, she is located in Covington & performs the test right there in her office. I am so happy to say that so far, 3 people have contacted me to get my doctors information. Their mothers fit the criteria, have been tested & are awaiting their test results now.

 

Please share my blog so together we can possibly save many lives!!!!!

 

Cindy

XOXO

 

P.S. Please continue to pray for my sweet momma.



 

 





 

 

 

 

 

 



 



So my journey begins.....

     One of my worse fears since a young child, has come true. However; I am extremely blessed that there is something I can do about it.

Here is my story:
    
     I was 11 years old; I can remember like it was yesterday when my mom & I were doing yard work & she had a sudden sharp pain in her breast. My mom was 40 yrs. old, exactly one year younger than I am now, 2 weeks later she was diagnosed with breast cancer & immediately had a double mastectomy (both breasts removed). My mom's surgery was successful,  a survivor, no chemo, no radiation, she is by far the strongest women I know. Mom's breast cancer diagnosis came only 4 short years after my father was killed. For many years I've wondered how in the heck did she keep it together??? A single mother with a 14 year old son & 11 year old daughter??? She has always told me, "You just do what you have to do baby, for your children, my only concern was that I wanted to live for you & Lee".

"My unbelievably strong momma"

 

My mom, daughter Victoria & I.

 

     I have been getting mammograms every year since the age of 21 because of my strong family history of breast cancer & have had my own share of cysts, lumps, lumpectomies, biopsies, etc. However; for 30 years now I have been going with my mom every 5 years for her check up to make sure she has no signs of re occurrence. This year, I decided to bring my mom to a new doctor that specializes in breast cancer due to the fact that she does much more extensive testing than my moms regular gyn. In addition, after researching the BRAC1 & BRAC2 gene for breast & ovarian cancer for the past 3 years, I let the receptionist know I also wanted a consult with the genetic counselor to discuss having my mother tested for the BRAC analysis cancer gene. I knew that just because my mom had breast cancer did not mean she carries the gene, I knew that if my mom was negative, I was negative & my children were negative, I knew the test cost $3700 & I was more than ready to fork over the money.

      My mom was tested a little over a month ago from today, I waited 16 VERY stressful days for the results. I finally received the phone call from the breast specialist; she said, "Cindy, I'm sorry to tell you that your mother is positive for the BRAC1 genetic gene for breast & ovarian cancer, we need to see her back in the office ASAP, she needs to see a oncologist, she needs a hysterectomy ASAP & most important, we need you to be here at 9am to be tested yourself". All I heard at the time was, "your mother is positive", my immediate thoughts were, NOOOOOOOOO, not my mom, my life, my best friend, my everything, how am I going to tell her????? She's been through so much, another surgery at the age of 69??? When will this end for my sweet mom?????
     
      After taking a few hours to compose myself, I called my mom & said; "Mom, the doctor called & they just got your test results back", she said "and...", I said "the results show you are positive for the BRAC1 gene", she said, "so now what"? I said you need to have a total hysterectomy". She said; "OK Cindy Lynn, what ever I need to do to live longer for you, Lee, & my grand kids".

"My brother & I, oh soooooo different, but love him to death".

My mom's reason for living".

                 My mom's "other 6 reasons for living".                  

   My brothers 3 children on the left & my 3 on the right.

   MY THOUGHTS......I thought I was a strong women, she is one thousand times stronger than me! Seriously? She's like super women, nothing will take her down! Two months shy of 70 years old....same thoughts she had at the age of 40. WOW!

     The next morning I arrived at the breast surgeons office a 9:00am sharp with my side kick, my ever so supportive AMAZING man by my side, my other best friend, my love, Alan. I barely had to ask any questions because he asked a million, LOL :-). I did the test, was told my results would be back in 10-14 days, & left with only one thing on my mind. Please GOD, let me be negative so my children will be spared the worries my mom & I have lived with for so long.
                                                                   

                                                                   Alan & I

     Exactly 7 days later, I received "the call", "Cindy, I'm sorry to have to tell you that you are positive for BRAC1". My heart dropped as all I could think about was my babies, not my babies. As a mother, you never want your children to worry, this was a hard pill to swallow. The nurse continued to say; we need you back in the office, you need more extensive C-125 blood work & testing, a MRI, a breast MRI, we are going to set you up with a neurologist, a few plastic surgeons, a oncologist, a GYN oncologist, a genetic counselor, you will need a Double Mastectomy & Oophorectomy within the next 2-3 months.
I feel really bad now, but all I could say at the time was "what the hell, please slow down... I don't even know what the heck some of this means"? Again, the main thing still stuck in mind my were my children, although I did hear the words "DOUBLE MASTECTOMY" loud & clear!

      Next, the immediate thoughts came to mind....do I tell anyone or keep this a secret? I have thought back and realized that my mom was 40 when she had breast cancer, I am 41, My brother was 14, My Son Dean is 14, I was 11, my twins Kane & Victoria are 10. Crazy...crazy...crazy...., its either a "trend" or I am SO MY MOTHERS CHILD!!!  I knew I had to tell my close family members in case they need to be tested. Will people support me with whichever decision I make? Does it really matter who supports me as long as I have my mom, children, close family & a the handful of TRUE friends by my side? Suddenly, a strong feeling of peace came over me & from that moment on, I've been on a mission, which is the reason for me starting this blog.

     BRCA raises the risk of breast & nipple cancer - based on the particular mutation I have, it put my risk of breast cancer between the ages of 25 & 50 in the high 90% range. (While preventative mastectomy may not reduce the risk to 0, it makes it pretty close; approx. 1%). But it is also that the cancers to which BRCA 1 woman are susceptible are more often estrogen-receptor negative (so tamoxifen, or other drugs that block estrogen production, aren't a solution), they more often occur to women at younger ages, and they can be more aggressive and difficult to treat.  The ovarian cancer risk is somewhat lower - but it's still high, maybe 20 to 40% and ovarian cancer is much harder to detect because you have no symptoms and therefore often more advanced when it is found.
     MY MISSION is to spread awareness about this deadly gene to not only my friends, extended family, co-workers, neighbors, etc., but to the entire world if I can. I DO NOT want or need sympathy in any way shape or form. If you chose to have negative comments about the journey I am about to take, please feel free to delete me & not read my blogs. You will not hurt my feelings in any way what so ever! I am OK with what lies ahead of me, I am STRONG, like my mother & I am ready to beat cancer before it has a chance to beat me!!! I'm simply asking for those of you who read my blog to please share it with as many people as you can. I am convinced that all of you (that are willing to help me) & I together can save many lives if the unknown answers to many women (and men's) questions about having this genetic gene are answered here on my blog.

Here is the message I am determined to get out to others who have a strong family history of any of the following cancers. Breast, nipple, ovarian, cervical, uterine (in women) & prostrate, colon, & testicle cancer (in men).

#1 - If you, your mother, or anyone else that you know, has had any of the cancers listed above & 2 other 1st or 2nd line family members, your genetic $3700 testing is covered 100%. All you have to pay is your co-pay of $25 or what ever your doctors visit co-pay is.
For example: If your mother had one of these cancers & 2 more on either HER mother or fathers side did as well, your mothers test, (if still living) is covered at 100%.

#2 - In my case, since my mother was positive for BRAC1, I had a 50/50 chance of being positive & my test was covered 100%.

#3 - Again, in my case, since I am now been diagnosed with BRAC1, it is a FEDERAL LAW that whatever surgery I choose is covered at 100%, whether it be a double mastectomy with reconstruction & a Oophorectomy.

      To me this is a no brainer, however; I meet with my breast surgeon & genetic counselor this upcoming Monday & this is where my journey will begin. As my mom would say, "I will do whatever it takes to live longer for my kids".
                                                                    
                                                                      

 

     PLEASE, PLEASE, PLEASE feel free to share my page to as many people as you know to help me spread awareness about the testing procedures for BRAC1 & BRAC2 genetic cancer gene. Together, I'm hoping we can see how many lives we can save!!!!

Thanks to all for reading & hopefully sharing,
Cindy,
XOXO

P.S. Please say a prayer for my sweet mom.