My BRCA1 Journey

My name is Kari Velazco and I am BRCA1 positive.  I hope my journey will others like me.  I am 35 and have had my prophylactic mastectomy already.  I hope you know that you are not alone in this journey and we will get through this together.   

Family History and Background

My BRCA journey began in the Summer of 2017 when my older sister, Kristin, was diagnosed with stage 2 breast cancer.  I remember getting the call from my older brother, Geoff, on June 10, 2017, my sister’s 41st birthday, that she had an abnormal scan and might need our support, but nothing was confirmed yet.  I brushed it off as no big deal because I suffer from fibrocystic adenoma disease (benign tumors) and dense breast tissue. I also did not want to believe that something bad could be happening to her and/or potentially our family.

Because I suffer from fibrocystic adenomas, I had my first breast biopsy at 11-years-ld in 1995.  I remember feeling a lump, showing my parents, who are both physicians and my mom had me scheduled ASAP. I didn’t remember at the time, but the physician who did my biopsy then, Dr. Elizabeth Steinhaus, would later become my breast surgeon.

By age 25 I started to have yearly mammograms, ultrasounds, several biopsies and eventually a lumpectomy on my right breast. My scans always came back negative and I would ask my OBGYN every time if I should be tested.  At the time, I only knew of my paternal and maternal grandmothers having breast cancer; my paternal grandmother passed before I was born in 1984 after 2 recurrences of breast cancer at 56 and my maternal grandmother passed in 1988 from breast cancer at age 58, but her cancer was caused from fertility drugs she took in the 60s.  At the time, my physician told me testing was pointless and insurance wouldn’t cover it.  Oddly in the back of my head, I always felt like some sort of cancer would eventually affect me.

When my sister was diagnosed stage 2 breast cancer at age 41,I was 33 and went to my OBYGN on June 16, 2017 and forced him to test me.  My older sister and I are half siblings and share the same father.  My doctor again gave me the talk on insurance won’t cover it, which I did not take this time as an answer. Subsequently my sister, Kristin, was being tested also. 

My results came back on June 30, 2017 as BRCA1 positive, same as my sister.  I remember being angry, sad, scared, and guilty, at times I still have these emotions.  I wish I had forced my doctor to test me earlier than age 33 given my own history.  After I got my results, I fired him as my doctor.  I was scared for myself and my sister.  I was angry for not pushing harder to be tested because I am not one to brush things off.  I had a lot of guilt because I felt if I had pushed harder, I would have known of my BRCA1 status sooner and possibly could have prevented my older sister’s diagnosis and maybe I would have made different life choices.  The rest of my family could have been tested sooner and taken whatever actions they felt were necessary for them.

Because my older sister and I have different mothers, we knew the gene was passed by our father, Andy, which was later confirmed.  My mother, Kathy, was still tested due to her mother having breast cancer which came back negative for the gene, which gives hope the rest of the family on her side would be negative as well. To date, none of them have been tested. 

My father is originally from Lima, Peru and never discussed much about his family medical history.  He is positive for BRCA1, his sister is negative, and his 2 brothers have not been tested.  Both of my grandmothers passed by their mid-50s, so we assume my paternal grandmother carried the gene.  My paternal grandfather passed of prostate cancer, but he did not pass until his 90s, so we are sure it was from paternal grandmother. After my sister was diagnosed with cancer, we found out there were several other relatives diagnosed on my father’s side, the earliest one being at age 30.

My older sister had her bilateral mastectomy on July 5, 2017, tumors were found in both breasts and it had metastasized to one set of her lymph nodes.  She lives in California and my entire family flew there to be by her side.  Her oncologist spoke to all of us in length while Kristin was in recovery about her condition, prognosis, treatment plan for chemo and radiation, and the BRCA1 gene.  When her oncologist found out I was BRCA1, the look on her face said it all.  I left the room and cried in my mom’s arms scared for myself and not ever wanting to be in my sister’s position.  

This photo is with my sister, Kristin, one day post op and it is missing my older brother, Geoff, and my younger brother, Alec.  From left to right you have my mom, Kathy, my younger sister, Katie, my Dad, Andy, Kristin and I. Kristin did great in surgery and went home a day or two later.

My BRCA Journey Begins

I was diagnosed June 30, 2017 and began researching breast surgeons, genetic counselors, oncologists and plastic surgeons.  I had several consultations with 2-3 professionals in each field.  My lifetime risk of breast cancer is 89%, ovarian is 57% and pancreatic is 12%.

In August 2017 I had another mammogram done and MRI, which was followed by 4 biopsies.  Because I had experienced these over the last 10 years, I knew what to except, but once you know you carry the BRCA1 gene, the anxiety was at a whole other level.  As previously stated I had fibrocystic adenoma disease and was beyond tired of the above tests, so I knew immediately that surveillance was not an option I wanted, I wanted my breasts removed and I wanted to be scheduled ASAP.  After numerous consultations, I chose my doctors.  My breast surgeon, Dr. Elizabeth Steinhaus, and plastic surgeon, Dr. Randall Rudderman, who are both amazing.  Out of the physicians I met, they both took the time to listen to my concerns and understood how I was feeling and what I wanted at the end of the day.

As I told family and friends of my decision, I received a lot of positive and negative reactions.  At the time I was relatively single, 33 years of age, and no kids.  A lot of people told me to wait, don’t rush, see what happens at your next scan, blah, blah, blah.  I ignored all of it and had to do what was best for ME.  I did not want to wait and fear that the ticking time bomb would go off before my next scan.  I would love to be a mom, but I’d rather be there to watch my child grow up then breast feed. There are so many women I know that had trouble trying to breast feed, so that was not a major concern for me. I’m sure if I am lucky to become a mom, that will be something I will miss, but again, I want to be there to take care of them and not the other way around.

I chose to keep my nipples because I wanted to still appear normal, my breast surgeon stated I was a candidate, but would also be based on how things looked in the operating room (OR).  I told my plastic surgeon I wanted to stay as close to my natural size as possible, a D cup, and that I was willing to go as a small as a C cup. He told me due to me having thin skin he would have to place my implants or expanders under the muscle (UTM)) versus over (OTM) so the muscle could help support the implant weight.  He was also going to be adding alloderm (skin graft) to help the implant weight as well.  He said going direct to implant (DTI) or getting expanders would also be determined in the OR.  I was fine with the above and scheduled for my prophylactic mastectomy with reconstruction for October 23, 2017.

At this time, I was in the probably the best shape of my life.  I was working out regularly, eating right and weighed what I did in high school.  I felt great and was ready for the next step. 

October 23, 2017 – The Beginning of a New Me

I arrived at Northside Hospital in Atlanta, GA calm and ready to start the next phase of my life.  Both my parents, godmother and childhood friend were there to support me. I arrived around 5am and was schedule for surgery at 7am.  I woke up in recovery about 5-6 hours later with IMPLANTS!  My plastic surgeon was able to place 360cc Natrelle Inspira Cohesive round implants UTM along with 2 drains.

Pictures of me above are from the recovery unit (PACU), heavily doped up on meds.

I stayed in the hospital until about 9pm that evening and was discharged home the same day.  I opted to stay with my parents for help while I recovered.  I have a fairly high tolerance for pain and went to straight Tylenol 48 hours later as I do not like how narcotic pain meds make me feel.  I took them occasionally as needed, but did not take them like my physician expected.  Besides the pain and becoming very tired easily the only real parts that were a pain in the ass were having the drains, fear of them getting snagged and having to have my mother help wash my hair and bathe. I’m SUPER independent and having to have help hurt my ego.

I waited about 2 to 3 days for pathology to come back on all the breast tissue they removed and EVERYTHIGN WAS NEGATIVE!!  I was SO relieved and thankful I decided to move forward and have my surgery! My breast surgeon even stated in recovery that based on breast tissue being so dense and the fibrocystic adenomas it would have been VERY HARD to diagnose breast cancer early in me.  This also made me feel better as I KNEW I made the right choice!    

This photo is a few days post op at 360cc UTM implants.  You can see that I have 2 drains on each side.  I didn’t have as much bruising as I expected I would have. I chose to keep my nipples and my incisions go around the base of my nipples laterally to the side toward my armpit.

Recovery and follow up visits went well and I was able to have the drains removed after 2 weeks post op.  I didn’t realize how big those suckers were.  (They look large, but you don’t feel the size while recovering and the removal is a small pinch, so don’t be too scared from the picture.  I’ve also seen pictures of drains with different ends.

I went back to work 2 weeks later.  I was going stir crazy sitting at home.  I manage an orthopedic practice, so I made sure to only do desk work and not participate in clinic until about 6 weeks post op when my physician allowed me to start exercising again.  That was also an adjustment for me.  I was in some of the best shape of my life prior and not being able to exercise SUCKED.  I didn’t eat very well and started to gain weight. 

Over the course of the next several months, I had several follows up with my plastic surgeon, started to have concerns with feeling flat chested and not having enough projection.  It’s crazy how your mind will play tricks on you.  My surgeon agreed to go up in size and stated I would need to also have some fat grafting done to fill in some gaps. I missed the D cup look, so in April I went bigger.

April 24, 2018 – Larger Implants and Fat Grafting

Before surgery I was ready my doctor marked on my low back where he planned to remove fat from for the fat grafting.  The fat removed is not as much as you may think and is not considered liposuction as they take the minimal amount needed.  I initially thought that to get me back up to a D cup look, my doctor would take me back up to around 400cc implants since that was the amount of breast tissue removed.  I was wrong.  I woke with 525cc implants and I was shocked, but they looked good and I felt good. 

This photo is while in the OR; I had asked my surgeon to take a picture since I knew it would be a few days before I could see the new girls.  The exchange was a breeze and the only pain I had was from my low back where the fat was removed.  Fat was added to the top of my breasts to round them out more.  I also did not have drains this time.  I was back to work in under a week.  I had no bruising on my chest, but a lot from my back where the fat was taken.   Despite the photos, I was not in any pain there.  I wore spanks for about 3 weeks following surgery to help with swelling. 

I went about my summer, trying to resume life and normal activity as possible and would meet with my plastic surgeon periodically.  As I healed, excess skin I had (due to naturally sagging breasts), we agreed that I would that to be removed and do a bit more fat grafting and we looked to schedule this in the fall.

My third breast su8rgery was on November 8, 2018 where excvess skin was removed from the base of my breasts and more fat was added. Below are before pictures showing excess skin and the lack of roundness.

This time the fat came from my stomach and my surgeon removed the fat through my belly button.  I had zero brusing, but there was more discomfort from the fat removal.  I again work spanks for 3 weeks.  My surgeon again used the same incision site and was able to remove the escess skin to give me a more rounder look.    This was a one day post op and you could already tell a signifnicant difference.  This time I had drains again, but for only 24 hours.

Egg Freezing

During the summer of 2018, I was now 34, and ready to focus on freezing my eggs.  I had already found an gyno oncologist that I liked, when I was diagnosed the previous year for BRCA1.  I wanted to focus on my breasts because I knew I had a higher risk there and get to a better place before I considered the other.  With BRCA1/2 they recpmmend you remove your ovaires and fallopain tubes starting aroud age 35 if you are done with having kids.  Because I do not have kids, my docotr recommended egg freezing as a back up plan and in case they had to remove other organs sooner due to a bad scan. 

When I met with Dr. Denis at ACRM I spoke to him about my converns and what I was trying to accomplish.  I wasn’t sure where I stood on the fertility level and he agreed to do some blood work to chevk my AMH level.  This level shows how much oxygen is getting into your ovaries to determine how fertile you are.  The scale is from 0 to 4 and a healthy 16 year old female would be closer to the 4 scale and has your fertility decreases, so does your AMH level.  I was at a 1.7.  He stated women who are below a 1 most likely will have trouble conceiving naturally.  Hearing my number, I knew I needed to move forward with freezing my eggs.  Health insuance did not cover this, they said they would only cover if I had ovarian cancer and Iwas not waiting until that point.  In Georgia fertility is also not covered.  Some states will cover it 100% if you are a resident.  IVF is not cheap.  I did my first round of egg freezing in November 2018 shortly aftrer my 3rd breast surgery. 

My body did not react to the hormones I was giving myself.  When doing IVF you have to give yourself daily injections anywhere from 2 to 3 shots around your abdomen nightly.  You have routine ultrasounds and blood work to see how your body is reacting, if your estrogen levels are increasing or not.  If they are not, then they will increase your hormones, which happened to me.  You have ultrasounds to see how many follicles are being created in your ovaries.  The hope is that the more follicles your body produces and the bigger they are, then the better chaance you have of getting a mature egg remvoed.

This is a ultrasonic picture of one of my ovaries.  The black circles are the follicles and the hope is to get as many as possible.  The larger the follicle gets the better change of a mature egg.

My first IVF round, I had 6 eggs removed and 5 were mature enough to freeze.  When the eggs are unfrozen there is a % that will not unfreeze correctly and when they are fertilized there is also a % that will make it to the stage for implantaiton.  With 5 mature eggs, I might have 1 viable embryo to use later.  I knew this was not enough.

I took several months off and did my second round of IVF in February 2019.  This time my doctor started me off on the highest level of hormones to see how my body would react this time.  I had 15 eggs removed and 13 were mature enough to be frozen.  I now have 18 eggs frozen and there is a chance this will get me 3 pregnancies, hopefully.  I am happy with this number and was not going to do a 3rd round even if it was recommended.  The hormones are a pain in the ass.  Your emotions are all over the palce, as your ovaries grow with added follicles you feel blaoted all the time, and your stomach is sore/bruised from the injcetions.  I think I wore high waisted leggings that came up to my chest for 3 to 4 weeks each time.  I am thanklful that I did it and have a back up plan for the future.

My hopes is to one day use the eggs.  The embryos that I do get will be tested for BRCA and any other abnormalties and then I will have the non BRCA embryo implanted.  I know there is a chance I could have a child naturally or not end up with a non BRCA embryo and that is ok.  I have the knowledge now that I will be able to prepare my future child for what may be in store for them later.  I know I may also not end up having children, but I hiope that when the time is right I will.

My Plan for the Future

As of now I am going to continue to monitor my ovaries and tubes with 6 month evaluations.  My evaluation include pelvic/vaginal ultrasound and blood work to check my CA-125 levels.  The CA-125 test will show if you are getting closer to having ovarian cacner.  The lower your levels, the better.  I plan to have my ovaries and tubes removed between age 40-45 unless I have an abnormal scan.  I will also have my uterus and cervix removed.  Many women do now do this, but I will because in January 2015 I had to have part of my cervix removed due to stage 3 cancerous cells showing on a pap smear. The next stage is cancer.  I do not want to keep my uterus and cervix because of this. I hope I am able to have a least one child before I cross that bridge.  I will have yearly breast ultrasounds for the remaining breast tissue I do have and breast MRIs every 3 years to watch my implants.

What I know now and what has helped

  1. Never listened to your doctor about insurances not covering genetic testing.  Push harder and be your own advocate.  If for some reason insurance won’t cover your test and you can’t afford it, find another company on your own, like 23andme, color, etc. I’ll always have regrets for not pushing harder and sooner to best tested, and that’s something I’m working through.
  1. Have a boobvoyage party, really say good bye to your breasts because you will mourn them quite for some time after. I wrote a letter to mine several months later from another fellow BRCA warrior and it was beneficial saying good bye to a part of me. I never realized how therapeutic that was or how much I needed it.
  2. It’s not a one and done surgery. You may wake up DTI, like me, but you won’t be yourself.  There will be several surgeries, not 1. I’ve had 3 and my doctor wants to do a 4th because I still have some excess skin and drooping.  I’ve had 2 procedures to freeze my eggs. I’ll eventually have the surgery to remove my ovaries, tubes, uterus and cervix.
  3. NO ONE will understand this journey EXCEPT someone who has experienced it themselves.
  4. People will give you advice try to ONLY listen to those that have walked in your shoes.
  5. I saw a therapist before my surgeries for other reasons, but find one that specializes in BRCA or cancer; they will help you more than someone who does not know. 
  6. Your body and mind will never be the same.  Your breasts will never feel the same and it will mess with your head.  I use to touch my breasts all the time and now I rarely do because of how they feel and not truly feeling like they are a part of me yet.
  7. There will be good days and there will be bad days.
  8. There are support groups online and also in your city of people who have done this – USE THEM! These individuals will become your family without even meeting them and they will SAVE you from some dark times. Some groups that have been helpful for me are: Prophylactic Mastectomy, BRCA 1 BRCA2 Genetic Ovarian and Breast Cancer Gene, BRCA Genetic Sisters Support Group, BRCA Strong, The Breasties, and SheStrong Group.  I came across these groups AFTER I started my journey and had my first surgery.  I TRULY LOVE THESE GROUPS AND THE MEMBERS!! 

What has not helped me

  1. Like above, comments from someone else who has not experienced this.
  1. Trying to discuss your breast imperfections with someone who hasn’t experienced what we have because they don’t get it. You’ll get comments about their breasts.  I DO NOT need to hear about YOUR boob imperfections. Yours are due to life changes, breast feeding, gaining/losing weight, and age.  MINE ARE FROM A LIFE ALTERING DECISION I MADE TO SAVE MY LIFE. I chose to remove/cut off a part of me that I truly loved, you did not.  
  2. I’m 35 and single, and happy. One day I hope to meet the man I’m meant to be with who can handle my imperfections.  I hope to be a mom. If I’m not fortunate to have either or one or the other, that doesn’t make me less of a woman, person, individual. Your life choices are not mine. Don’t judge me or ask me about why I’m in the stage of my life that I’m in. Be happy for me, like I’m happy for you. Love me for me.

Below are some images that I have come across that have helped me.

In closing with all of the above I would not change a thing except knowing my BRCA status sooner. I probably would have made some different choices.  I am beyond thankful for the support I have received over the past 2 years from friends and family. 

I could not have done this without my family, especially my Mom.  She was with me for every consultation, every surgery, every procedure.  Because her and my dad are doctors, they asked questions I never woud have thougth of.  She reached out to colleagues to find the best people for me to see.  She took time off of work to help me. She bathed me, she washed my hair.  She helped take care of my 4 dogs.  She rearranged furnitue in the house so I could have a recliner to sleep on.  She bought my a mastectomy pillow to help me sleep.  At times it was not easy for either of us, especially me having to ask for help, but she was there despite the emotions I went through.  I know I can never repay her for any of this.  I hope she knows how much her support meant to me and how much I needed it. How much I love her.

I also have to thank my sister.  I hate every day what she has experienced, but if she had never been diagnosed with breast cancer, I would never have known my personal risk.  I never would have been able to prevent myself from being diagnosed.  I will never be able to thank her enough either. She saved my life and is my hero. 

I hope my journey helps someone else who is experiencing the same.  I know my journey will never end.  l be futures hurdles to climb in the future. I have learned so much about myself during the last 2 years.  I do not regret choosing to save life and I hope I can inspire others going through this similar journey.  I am strong.  I am powerful.  I am brave.  I am a warrior.  I am a previvor.

As the founder of the BRCA Strong nonprofit organization, Tracy Milgram says, “My brca2gene started the fight, but I am going to finish it”.  BRCA1 is not going to stop me, I am going to stop it.  I will continue to previve and sruvive. I will continue to help other individuals like me. 

I am here always even if we never meet in person.  Stay strong my BRCA family, we will get through this together!

With love always,

Kari Velazco

kdvelazco@yahoo.com

Please feel free to follow me on Instagram @kvelazco523 or on Facebook.

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