Denise's Story

To know my story, I have to start with my mom.  It was 1995 and I still remember “The call”.  So many others have received a similar call.  You know the one where the person on the other side says, “It is breast cancer, but don’t worry we have great doctors who told us it is treatable.”  I remember being in a fog around my roommate and my fiancé (now husband) that day.  I remember selfishly thinking, no she needs to be ok, and I need her here to help me.  Not really thinking about her and her needs and dreams for her own future.

The year of my mom’s surgeries and treatment were a blur.  I worked in Omaha so I could sit with her during some of her chemotherapy sessions.  As the year went along we also planned my wedding, and just like the doctors promised, she did get better. And ever so slightly I allowed cancer to drift out of my mind.

About ten years after my mom’s initial diagnosis, I was taking a walk with a friend who mentioned something about her mother and herself looking into taking a genetic test for Breast Cancer.  I had never heard about this type of test before.  They were exploring this option because of her mother’s breast cancer history so they could tell if her cancer was bad luck or due to genetics.  The idea intrigued me, but I didn’t see how it applied to me.  Little did I know….

In 2009 cancer invaded our lives again, but not where we expected.  My mom had always been vigilant about monitoring her breasts, but this time it was in her colon and spine, and it was aggressive.  Life had changed so much; I had now been married several years and had two small children. I had forgotten about my conversation about the genetic testing and all my energy was focused on my mom’s treatment and health.  This time around the doctors were not so promising, and we didn’t even get a full year with my mom.  It took a long time to process the toll this fight took on all of us, and how much we missed her in our lives.

With her gone I knew I had to prioritize my focus on my own health.  Starting in my early 30’s I had been having yearly mammograms because of my mom’s breast cancer history. Closer to my 40’s my OB/GYN and I had also been talking about my ovaries.  I had been having difficulties with ovarian cysts and we had tried several options to control the cysts and my menstrual cycle but nothing seemed to work, so my OB/GYN offered a hysterectomy as a final option. 

During those conversations I remembered my mom attributing the hormone replacement therapy she took to relieve her menopause symptoms as the cause for her breast cancer.  It is funny the things you remember your parents telling you when you least expect it.  So as I was having discussions with my OB/GYN, about my own surgical options, and having to possibly take those same hormones, I remembered the conversation I had with my good friend about genetic testing, something that no doctor had brought up to my mother or to myself up to this point. And now it was I that wanted to find out if my mom’s cancer was because of “Bad luck, or Bad genes”.

Since I wasn’t sure where to start, I first met with my mom’s oncologist.  Sitting in an oncologist’s waiting room, as a “patient”, but not having cancer is unnerving. Yet the irony of sitting in the same doctor’s office that my mom had sat in as an actual cancer patient so many years ago was not lost on me.  I realized how fortunate I was to be in this situation, where as the majority of people who were there to see this doctor were very sick, and would have given anything to be in my same situation to possibly know what caused their cancer, and to prevent it.  My mom’s oncologist was wonderful.  He remembered working with my mother and told me she met one of the criteria of the genetic testing, which was she had breast cancer prior to age 50, or “pre-menopausal”.

My mom left home at age 16, so when I met with the genetic counselor. I was only armed with my mother’s own cancer history and a bit about her family history that she had noted on a small piece of paper during her first bout with cancer, about two of her great aunts having stomach cancer.   When the genetic test results came back, I found out I was positive for the BRCA 1 mutation, putting me at elevated risks for both Breast (87%) and Ovarian (up to 54%) cancers. 

I remember getting the information and not being that surprised.  It seemed as if I knew it was going to come back positive.   Since that day I have met several other individuals with similar cancer causing mutations.  In their families, it really does seem as if cancer is stalking everyone, so it makes my own family’s history look fairly blasé, so I’m not sure what gave me the impression that my mom’s cancer was so different.  However, when I had my follow up meeting with my mom’s oncologist, he told me he was surprised.  He went on to say if he would have had to guess he would have actually said he thought my mom’s cancer had been based on “bad luck”, but this was why he never bet against genetics.

I scheduled an appointment with my own amazing primary care doctor.  I remember telling him I looked at him like Switzerland.  He was neutral and it was just his job to keep me healthy!  He wasn’t there to cut me open, give me chemo, or anything else… just advice.  He laughed, and said with BRCA, I was somewhere between a rock and a hard place but he thought he had some good recommendations for me, in terms of a solid surgical team, if I wanted to meet with them to discuss options.  I didn’t have cancer and I wanted to keep it that way.  The benefit of being on the proactive side of things is you have time to do your research and to find the right doctors you feel are going to listen to you and are at the top in their field in this area.  Surgery isn’t the only option. You can monitor for cancer or take chemo prevention drug therapy; however, I had seen what this beast did to my mother and I knew I would do whatever it took to avoid that fight.

I went to the University of Nebraska Medical Center where I met with Dr. Edibaldo Silva, a surgical oncologist who specializes in breast cancer. I was blown away not only by his incredible knowledge in this particular area, but also by his caring and compassion nature during our meeting. He was able to put both myself and my husband at ease in discussing all the areas of risk that go along with BRCA. I loved how knowledgeable he was in this area and that he used the most up to date research with high risk individuals, such as myself, to determine the best surgery options for me.  Dr. Silva then recommended I meet with UNMC doctors Kerry Rodabaugh, an OB/GYN surgical oncologist, and Perry Johnson for plastic surgery.  

Dr. Rodabaugh went through all my options and explained that with my mutation, the best practice was an oophorectomy (removal of ovaries and tubes), which could be done laparoscopic.  She also made sure I understood how removing my ovaries and tubes would also reduce my risk of breast cancer by removing the estrogen.  Of course there were still risks, but I could live with those… I figured we were all going to go through menopause, I just got to pick the time and date.  Hello little white dress club!! However, when I all of a sudden realized that this was really going to happen much sooner than I had originally planned and I needed to figure out what I was going to do for my future follow up gynecological care, she also told me she was more than happy to follow her high risk patients.  Whew!

Final step was to figure out the plastic surgery options.  I’m, not sure what kind of patients Dr. Johnson normally gets, but I know on that day I was a pretty unwilling one.  I never was interested in plastic surgery, but there I was, talking to a plastic surgeon anyways.  He patiently listened to all my questions about implants and surgical choices making me feel as if all of my questions were important, even the one about scuba diving with implants (yes you can dive with them). On the Friday before my surgery I had one final meeting with Dr. Johnson, because it just didn’t seem right to not meet with someone who was going to have such a major impact on the way I was going to look after this was all done.  All my surgeries were going to be done at once, I called it my “trifecta” surgery, and he was at the end, so I wouldn’t see him at the beginning of the day. During that meeting I told him he better make them look “good”, because regardless I was going to tell everyone that he did them! He took it all in stride and told me not to worry.

As part of my journey I decided to throw myself a party, to celebrate my health.  I called it my “Bon Voyage to my Boobs, Au revoir to my Ovaries party”.  On the eve of my party was when I finally told my 8-year-old son and 6-year-old daughter about having the BRCA gene mutation, and what that meant for our family.  My son, who loves science, very quickly asked if grandma had this same mutation, and I said “yes” and then asked if he had the mutation, and I had to say “Maybe”.  He then asked, if I would be here help him if he found out he had the mutation, and I said “ABSOLUTELY”!  One of the husbands of a dear friend also stopped me as they were leaving the party and looked at me and simply said, “Thank you. Thank you for being strong enough to not leave your husband a widower and your children orphans”.  That simple statement has always stayed with me during this journey.  I have always thought the true warriors are those that have to fight cancer, because they didn’t have a choice.  Cancer invaded their lives and they had to battle this horrible disease.  However, I will say I am proud of my strength to do what is right for me and my family. 

My amazing husband, children, family, friends, work… everything fell into place for me during this process. It was as if it was my mom’s last motherly duty to make sure all the pieces fell into place for me.  The individuals I have encountered have been some of the most incredible and passionate people I have ever met.  And the personal journey I have taken on this walk has made me grow in ways I never thought possible. 

I know how incredibly blessed I am that I found out I had the gene mutation before I had cancer. And until science and medication can fix this mutated DNA, I will do everything I can to help others realize, just like my friend did for me so long ago, that there could be a family risk or genetic risk that is causing the cancer in someone’s family, so no one else has to say good bye to someone they love simply because of a “Bad genes”.

 

Acacia's Story (Land Family, Part 4)

In winter of 2013 my family found out that the BRCA 2 gene was among us. I remember reading the email from my aunt that started the “family affair.” I was sitting there with my husband on the couch and I remember crying as I read the email. At 31 it is not something you really think about or want to think about. I remembered immediately talking to my mom to see if she was going to be tested, which she was. I remember telling myself not worry and wait to find out if my mom was positive first before really “thinking” about it. In January, the news came back that both my grandma, who is a two time breast cancer survivor, and my mom tested positive for the gene.

My mom took action quickly and by March she was all set to have her preventative double mastectomy and her complete hysterectomy. I was there with my step-dad the day my mom had her marathon surgeries. It was a long day, but knew my mom was getting excellent care and getting to kick cancer’s ass before it could kick hers.  

By the end of April 2014, I made my appointment to see the genetic counselor and after what seemed like forever, my insurance finally approved the test. In June, a few days after my first cousin was diagnosed with breast cancer at 33, I got my results; I too was BRCA 2 positive. I have an 84% chance of breast cancer by the time I am 70 I was told. I remember sitting there in the doctor’s office, expecting my results to be positive, but still crying when I heard the news. I guess I was holding out hope that the 50% chance was going to be in my favor.  The genetic counselor and I talked about the results and what the different options do to diminish your chances of breast and ovarian cancer.

I called my husband right after I left the doctor’s office, crying as I told him the results. He was so encouraging and supportive. We had decided prior to finding out the results that I wasn’t going to “jump” right in a do the preventative double mastectomy because we had a trip to Jamaica planned for a friend’s wedding in a few months. We thought in the next year or two, that is when I will do it. So, I chose the early screening route. Not once did I think I would have any issues in regards to insurance. Call it naïve, but I just assumed that because I was deemed high risk, everything would be okay on that front. So, I scheduled my very first mammogram.

On a Friday afternoon, I got a call from the breast center that preformed my mammogram; this also happened to be the day my cousin was having her double mastectomy. I was told that there were some microcalcifications that were of some concern and they wanted me to come in for a diagnostic mammogram. I remember feeling defeated and thinking how much I didn’t want to follow in my cousin’s footprints, but knew the possibility was there.

A few days later I had both my vaginal ultrasound and my diagnostic mammogram. My ultrasound came back fine…just an ovarian cyst, but nothing to be concerned about. My diagnostic mammogram still caused some concern for the radiologist and we subsequently scheduled a contrast MRI and a breast biopsy. By the time all of this went down, my husband and I had to cancel our trip to Jamaica. We just didn’t have the finances at that time to pull off the expenses of the MRI, breast biopsy, and the trip to Jamaica. Thankfully, the MRI came back clear and the biopsy didn’t show any signs of cancer. I remember feeling so relieved. I was at work and remember coming out my office crying, happy tears, that I dodged it for now.

Everything happened so quickly and it took a month for my explanation of benefits to arrive for my screenings and procedures. My MRI and biopsy were all preapproved and I had no issues. My mammogram, diagnostic mammogram, and vaginal ultrasound were a different story.

Each one came back denied for not being a covered benefit under my plan…over $1800 worth of procedures. After nearly 5 months of calling the cancer center and my insurance company, things were slowly getting sorted out. The diagnostic mammogram was cleared first, a billing code error and it was covered at 100%. Then my ultrasound was finally corrected and covered as well at 100%. However the first mammogram, the one that started my roller coaster kept coming back denied, regardless of the information submitted or the codes that were used. It became clear that my last hope was to do an appeal to my insurance company.

So in December, almost 6 months after it all started, I sat down and wrote an appeal letter to my insurance company, making my case to cover the mammogram. I submitted my test results, peer-reviewed journal articles, information from different websites, and information given to me by my doctor. During that time, I kept getting the bill for the mammogram. Watching as the deadline would come and pass. I knew the “drop dead” date in which the bill needed to be paid by before it would go to collections…February 4, 2015. A week before the deadline, I finally received a response. My insurance company granted me a ONE time exemption to their policy for the mammogram. They made it really clear; this would be the only time they would make this exception.

So here I am now, wishing I could have a preventative double mastectomy so I can kick cancer’s ass before it has a chance to kick mine, but I can’t. My insurance company, which I have through work, doesn’t cover enhanced screenings for women at high risk nor does it cover preventative surgeries. I also make too much money to receive assistance to cover mammograms from multiple non-profits in the area.

I have moments of jealousy when I hear of women, even ones in their early 20s, having no problems getting the screenings or the preventative surgeries covered. Why? Why can’t I be one of them? I remember initially thinking that I was happy I was the sister who came out positive while the other two came out negative because I felt I had the support system and finances to handle what was a head of me. Now, I don’t think that way as much, instead I have the weird feeling of wishing that the biopsy showed cancer so I could just bite the bullet now instead of wondering when it will happen. I mean sure there is a 16% chance I will never get breast cancer, but the odds are so not in my favor.

So what am I doing? Well, in June I will have another mammogram, which I will pay completely out-of-pocket. It is hard to say what I want the results to be. If it shows cancer, I can do something about it now. If I don’t have breast cancer than whoohoo, I don’t have cancer, but will be left wondering when will my time come? When will I get the news my grandma received twice and my cousin, who is just a year older than me, received? When I turn 35, I will be able to get one mammogram covered, but will have to wait until I am 40 before they would cover another one and then 50 until they will cover them yearly. All I am left with is hoping my insurance will change its policy sooner rather than later. I cannot afford the traditional early screenings my doctor and many other doctors recommend. I cannot afford paying for a yearly contrast MRI, but at least I can afford the yearly mammogram and I can only hope that if cancer does make its presences in my “time bombs” that the mammogram will catch it and catch it early.

~Acacia Fike-Nelson~

Marie's Story (Land Family, Part 3)

I was 54 years old, and my GYN had retired.  He had taken care of me for 17 years.  He knew my mother had been diagnosed with breast cancer in 1995 and then again in 2012.  That is because he also took care of her.  Nothing had ever been mentioned to me about getting genetic testing done to see if I had an increased risk of developing breast cancer.  At the time, we thought my mother was the only family member that had been diagnosed and treated for breast cancer.

With my GYN retiring, I had to choose another GYN.  I was fortunate enough to have picked one that believed in doing genetic testing when there was a family member that had already been diagnosed with cancer.  I was not pushed to do the testing, but was informed that it was available, and my family history on the questionnaire revealed that my mother was a 2 time breast cancer survivor.  With this information revealed, my GYN stated I was a good candidate to see if I carried the genetic mutation that would increase my risk of getting cancer.  I was all for getting it done, just to see if I was possibly going to follow in my mother’s footsteps.  Having watched my mother go through her phases of discovery of the cancer, verified diagnosis, treatment with tissue sparing surgery, power port placement, chemotherapy, hair loss, the “yucky” feeling of all the side effects, and then radiation, I knew that I wanted to avoid getting cancer if I had any way of knowing my risk factor.

I did my BRCA testing on October 3, 2013.  Fortunately my insurance covered the entire cost.   My results (BRCA2+) were called to me by my GYN on October 31, 2013.  Along with the results, she informed me that she was referring me to a breast specialist who dealt with genetic mutations for breast cancer.  In early November 2013, I had my appointment with my breast specialist.  She examined me, asked lots of questions about my family history, and explained all the options available to approach this knowledge of my mutation.  There were three options:  1) increased surveillance, 2) long term oral meds (tamoxifen), and 3) preventative surgery - bilateral mastectomy with reconstruction.

I knew that for me, doing increased monitoring was not a good option.  I would need to be seen every six months for a mammogram and then bilateral MRI of the breasts at alternating visits.  I had a hard enough time making sure I was getting in at one year intervals to be seen for my GYN appointment and mammogram.  My increasing number of visits was a not going to fit well with my schedule.

Taking long term oral meds was not a good option for me either, because I did not take any meds on a routine basis, and I knew that I would have a difficult time remembering to be faithful in following through.  Plus, I was aware of the possible side effects of the medication.

The plan that fit best for me was to have the preventative surgery.  But to get to that point, I still had to have the MRI, which needed to be approved by my insurance company.  In the meantime, my breast specialist strongly encouraged me to have a hysterectomy because of the increased risk of getting ovarian cancer which is harder to detect.

I had my robotic laparoscopic assisted total hysterectomy with bilateral salpingo-oophorectomy in December 2013.  My pathology was clean – no presence of cancer in the tissue removed.  Hooray!  One type cancer risk had been decreased.

In January 2014, my insurance approved my MRI.  That was scheduled for February 2014.  The results looked good -no suspicious lesions.  That was great news.

Now I had to wait for my insurance to give approval to have the preventative surgery.  Finally in April 2014, my insurance approved my bilateral mastectomy with reconstruction.  I went to see my chosen plastic surgeon and we discussed reconstruction options for me.  I chose to have reconstruction using Latissimus Dorsi muscle flaps with insertion of tissue expanders.  This was going to give me a more natural appearance after all the surgeries were complete.  I chose not to save my nipples because my mom’s cancer was invasive ductal carcinoma.  I wanted as much tissue gone as possible.

In May 2014, my breast specialist and plastic surgeon had coordinated time they could both work together to get my surgery completed.  It was an all day event, but I did well, and stayed in the hospital for 3 days.  My pathology for this surgery was clear and I was now a “Previvor”.  I managed to get all my preventative surgeries done and escaped the cancer diagnosis.  

Granted I still had other surgeries to go through.  I had multiple fills on my expanders through the next few weeks, and my plastic surgeon wanted me to wait for at least 3 months after the last fill before doing the tissue expander exchange to the implants.  I was all for the wait, I needed a break and try to have a normal schedule for a while.

In September 2014, I was able to get my 2^nd stage reconstruction with fat grafting to fill in the areas around the implant to give my breasts a full natural look.  That was the easiest surgery so far.

Fast forward to today, early April 2015, I am now at the point in my journey where I need to decide if I want to have my nipples reconstructed.  That is something I have not decided upon.  I go see my plastic surgeon again in late April 2015 to discuss this and make a decision.  If I do the reconstruction, I will later get nipple tattoos to make them look natural.  If I do not do the nipple reconstruction, I can leave them as they are, or go for 3D tattooing or some interesting tattoo to cover my scars.  I am not unhappy with my scars.  I literally have a circle scar on each breast where the mastectomy was performed.  I also have a straight scar under each breast on the mammary fold.  It is not even visible.  These scars under the breast were from the exchange surgery.

Who knows what the future will bring.  I have shared my test results and progress with my family from the beginning.  After I got my BRCA2+ results, my mom and sister had their testing, later followed by my daughter, my 3 nieces, my brother and my son.  There were a total of nine in the family tested.  Of those nine, five are positive for the BRCA2 mutation.  Fortunately, for the four that had negative results, they will not have to worry about their children ending up with the mutation.  For the rest of us, well, we will see as the children grow to adulthood and decide if they want to get tested.  

A good thing in my favor was my very supportive family, friends and co-workers.  Just within our family, we had four of us with overlapping Dr.’s appointments, surgeries, various testing, treatments, etc.  We were all in it together.  We are Facebook users, and my sister found the BRCA Sisterhood page.  We each asked to be a member of this page, and we were accepted because of our BRCA status.  There is a wealth of information provided, lots of stories of others and their journey, pictures that were shared from transformation of before surgery to results along the way through the healing stages, and final pictures of completed reconstruction.  There are also stories about those that chose to do increased surveillance instead of preventative surgery.  This group of ladies is extremely supportive, and there is usually someone available at any time of the day or night.  They may be in a different town, state, or even country, but we all are traveling this road.  The sharing of others journey lets you know, you are not alone.  

For anyone trying to decide if they should get tested for a genetic mutation, it is a personal decision to discuss with your Doctor and genetic counselor.  Get all the information you can and make an informed decision on what works best for you.  There is no right or wrong answer.  Each needs to decide what is best for their situation.  

I am aware the sharing of my story will be used on a public blog.  I have consented to placing my story on this blog, in hopes that others will gain knowledge and/or benefit from my experience.

~Marie Wheeler~

Nikki's Story (Land Family, Part 2)

At the age of 33, in April 2014, I was tested for the BRCA2 mutation because my mother, grandmother and aunt were recently discovered to be positive for the mutation.  In early May 2014, my results were positive for the BRCA2 mutation.  I had been asking my GYN in previous years to have a mammogram, because my grandmother had breast cancer in 1995 and 2012.  I was refused the testing because I was “too young”.  I changed gynecologist because mine had retired.  My new GYN was aware of my mothers’ positive results for the genetic mutation, my grandmothers’ breast cancer and positive genetic mutation, and my aunt having positive results for the genetic mutation as well.  

 My GYN ordered the genetic testing.  As soon as the presence of the genetic mutation was verified for me, I was referred to a breast specialist, and had my first mammogram the same day I saw her.  My mammogram showed suspicious micro-calcification lesions, so two days later they had me come back for magnification views of the lesions.  Two days after that, I was in to have a stereotactic breast biopsy.  The initial results of the biopsy showed stage 0 DCIS.  Within a week, the final results came back with stage1 invasive ductal carcinoma.  I had already decided that I was going to have a bilateral mastectomy if I was positive for the mutation.  I was going to plan out my time for when I was going to have my preventative surgeries.  Now with the cancer diagnosis, my time table was adjusted and put on the fast track.  Before the end of May, I had seen my plastic surgeon and the date, June 20, had been coordinated and scheduled for my sentinel lymph node biopsy and bilateral mastectomy with reconstruction.  When I went to my breast specialist, for my first post-op appointment, I was informed there were cancerous cells in the lymph node.  I was referred to an oncologist for treatment.  

We discussed treatment options, but he wanted to order further testing on the nodes and breast tissue to determine my risk level for recurrence, before we started any treatments. The samples were sent off and within a month the results were in. I was at a high level risk of recurrence. The next week I was back in surgery for a port placement. One week after, I was to start 4 treatments of Taxotere and Cytoxan every 3 weeks. My chemo journey was far from routine…one week after my 1^st treatment, I developed a nasty infection in both breasts. I was on multiple antibiotics to try and combat my infection for a week to no avail. This infection refused to leave, I felt so defeated from this and the effects chemo was having on me. I also had lost all my hair at this time, I mean, let’s add insult to injury! I ended up in the emergency room on a Friday night in early September. That evening I was taken in to surgery and woke up with no breasts again, the expanders had been compromised/infected and had to come out. I spent 4 days in the hospital on heavy IV antibiotics before I was able to come home. My second chemo was a few weeks after surgery, this time I ended up with a nasty itchy rash all over my body. To this day all I have been told was they were hives and we still do not know exactly what the cause was.  Chemo 3 and 4 went much better than the 1^st two, and my biggest problems were fatigue, neuropathy and no appetite. It was impossible to do anything around my house and needed help with my children and showering myself. It took me a few good months to start feeling human again. Two months after chemo, I had a complete hysterectomy. Another month later I went back to my plastic surgeon and had my expanders put back in place. I am currently awaiting my final exchange to implants. This has been a long exhausting process and it is nearing the end. It will be just over a year from the 1^st surgery before everything is complete.

Betty's Story (Land Family, Part 1)

In 1995, (age 55) my routine mammogram showed suspicious calcifications which turned out to be ductal carcinoma in situ.  It was treated with a lumpectomy, followed by radiation.  In 2012, (age 72) my routine mammogram showed suspicious calcifications in the other breast, which turned out to be invasive ductal carcinoma.  Once again, did the lumpectomy, but followed with chemotherapy and radiation.   My Mom came from a family of 9 children.  Her 2 brothers passed away in their 70’s, one from Lymphoma and one from lung cancer.  Two sisters passed away from cancer, one was leukemia in her 70’s and the other from ovarian cancer at the age of 89.  The remaining 5 children lived well into their 80’s, and passed away from other causes.   My Mom passed away at the age of 89 from her osteoporosis, which restricted her lung capacity.  She did have a hysterectomy back in the 1950’s.  Dad came from a family of 4 children, none of them had cancer.  He passed away at the age of 87 from failure to take his seizure medication.    My Grandfather on my Dad’s side, passed away from stomach cancer in 1952 at the age of 84.  The other 3 grandparents died from other causes in their 80’s.   A first cousin, daughter of the uncle who passed away from lymphoma, had breast cancer in her 50’s, 17 years ago, was tested this year for 15 mutations but is negative on all.   A first cousin, daughter of the aunt who passed away at age 89 of ovarian cancer, had a brain tumor around 10 years ago and this year has had a lumpectomy, she is 77.    My sister age 79, has not had cancer, has not been tested and doesn’t want to be tested.  She did have a hysterectomy when she was in her 30’s.

In October 2013, Marie Wheeler, (daughter) going for her annual gynecology checkup, the doctor suggested that she might want to get tested for the BRCA mutation, because of my past cancers.  Consequently, it came back that she had the BRCA2 mutation.  She shared this information with the rest of the family and that she was going to do the surgeries to lower her risks.    The beginning of 2014 found the remainder of the family getting tested, which showed that other daughter, Lila Land, and two granddaughters, Nikki Wheeler and Acacia Fike-Nelson have the mutation, plus myself.   Our son, grandson and 2 grand daughters do not.  Stats are:  5 with the mutation – 4 without the mutation.

I showed my oncologist Marie’s report on my routine visit in January 2014 and he asked me if it turned out that I carried the mutation if I would go ahead with what needed to be done to lower my chances.  , My test results came back that I did carry the Brca2 mutation.   The oncologist informed me as such and said that a Coordinator of Preventive Care Program for Women’s Cancer would be contacting me to set up my appointments.   I had my hysterectomy in June 2014 and my mastectomy in August 2014.  All  tissues came back clear.

Karen's Story

I removed healthy body parts. My breasts and ovaries were plotting against me. Cancer was lurking in the background so I dealt it a pre-emptive strike. Why? I tested positive for the BRCA2 genetic mutation. It gave me an 87% chance of getting breast cancer and a 50% chance of getting ovarian cancer. If you knew your chance of winning the lotto was 87% wouldn’t you buy a lottery ticket? Or if the pilot told you that you had an 87% chance of crashing, would you board the plane?

Until 6 years ago my father and I had never spoken of his family history. After his first cousin was diagnosed with ovarian cancer and tested positive for the BRCA mutation I learned the truth; my paternal grandmother and great aunt both died of breast and ovarian cancer. Both were in their forties.

Knowing I had a 50/50 chance of inheriting the gene mutation from my BRCA2 positive father, I booked an appointment with a genetic counselor and waited for an anxiety ridden two months for my results. My husband was and is very supportive and my kids (who were two and four at the time) kept me busy but I needed a support system of women who were living with BRCA mutations who “got” what I was going through. I needed someone to talk to who understood what the waiting was doing to me emotionally and mentally.

Armed with a positive BRCA test, I moved quickly to schedule a risk reducing hysterectomy including my ovaries and a preventative double mastectomy with reconstruction. From the moment of my diagnosis knowing I was at such high risk of getting breast and or ovarian cancer I felt fearful and panicked. My biggest concern was waiting too long to have these surgeries. I wasn’t going to let cancer get me! The odds were too high. I was booked for surgery within 2 months.

I checked online hoping to find other BRCA positive women and only found a handful of people going through the same thing. They have since become some of my best friends. One of those girls, Teri Smieja, co-author of Letters to Doctors and I decided to create our own community of support and information. We decided to start the BRCA Sisterhood on Facebook, a private women-only support group for those dealing with hereditary breast and/ovarian cancer.

BRCA mutation carriers face different issues than those diagnosed with cancer. They have watched family members die and feel like ticking time bombs themselves. Many still face judgment from their peers and even family members who disagree with the choices they are making. Whether choosing surgery, medication or surveillance, there is no right way to handle a diagnosis and the BRCA is there regardless of which path they choose. The BRCA Sisterhood is the largest BRCA support group on Facebook and to date has over 4000 members worldwide.

Earlier this year, I started the first BRCA support group in Montreal, Canada. BRCA Chat Montreal is a group for women dealing with BRCA or any other hereditary breast and or ovarian cancer. The first meeting was very successful and I have heard from many women since, expressing interest in upcoming meetings.

My passion will not end here; I will continue to offer more support and create awareness for hereditary breast and ovarian cancer. I will continue until a cure is found. Until women like me don’t have to remove healthy organs to prevent cancer. I guess that’s just another part of my DNA that is out of my control.

Nicole's Story

     

         

You’re never ready to hear the word cancer. Never. No matter how much you’ve tried to prepare yourself for it, you’re never ready. When I got my results, I remember everything just falling away, and that being my sole focus. Fear set it, and then panic. Cancer. How does a 27 year old girl cope with that? How was I supposed to deal with that? Cancer? No. That’s something you deal with in your 40’s, 50’s and so on. But 27?

                I found a lump and my doctors were sure it was just a clogged duct. Ignore it. Give it a few months. Ice it. Apply heat to it. I heard it all. They did ultrasounds and mammograms. Nothing. Finally I found a doctor who decided to take a look at my family’s history. Every woman in my family, except my mother and my cousin, had been diagnosed with breast cancer. Granted, they were all much older, but he didn’t want to take the chance, and decided to do a lumpectomy. September 13. A Friday. Friday the 13^th. Go figure. They didn’t take much because like everyone else, they didn’t expect to find cancer. It was just a precaution. The results came back and shocked us all. Cancer. Even my doctor sounded surprised. I remember having to tell my Mom and my boyfriend. That was hard. They were both shocked into silence. They didn’t know what to say or do. I went back in on September 23^rd for the second surgery. They wanted to take more to make sure they got clean margins, and the scariest part, to take lymph nodes to see if it had spread. Waiting for those results was the scariest moment of my life.

                Thank God, they came back clean and then it was decision time. They decided to do genetic testing given my situation and the family history. My mom, my aunt, myself, and my cousin all got tested and came back positive for the BRCA 2 gene. I had a very high risk of getting a second cancer, and a high risk of ovarian cancer. This was pretty bleak news, but it helped me make a decision that I’ll never regret. I met an amazing group of women that helped me make that choice by giving me information that my doctors didn’t. With their help and the support of my family, I decided to skip radiation and go straight for the double M. As much as I liked my boobs, I wasn’t willing to die for them. So on my 28^th birthday, I decided to go ahead with the surgery. Nipple sparing double mastectomy. I went through several consultations. Met some doctors I didn’t like, and some that I absolutely loved. And I met a woman named Jessica who was like a breath of fresh air. She was the first person to say “It sucks. It’s going to suck, and it’s going to hurt, but it gets better. I promise”.  She was so honest and I loved it. I feel like she prepared me for the worst of it, but was walking talking proof that it gets  better. I still talk to her to this day. She was such a big turning point for me. I went from being unsure to feeling more confident about the procedure.

                Dr. Perry Johnson and Dr. Janet Grange are the two I ended up going with and I’ll always be so grateful for them.  January 6^th, the day of the surgery, I had a panic attack because I was so unsure of my choice. They talked me through it and calmed me down. They came in and reassured me that they’d take care of me and do their best for me. They were with me the whole way. My mom and my boyfriend Jake were by my side, my family was there for support, the amazing, brave women of bright pink checked in all day long to see how I was doing, and kept me sane the whole week before. I was as ready as I was ever going to be, and off I went.

                I don’t know what I was expecting when I woke up, but it wasn’t what I saw when I looked down. I was black and purple and the nipple was gone on my left breast. The side the cancer was on. I broke down. This wasn’t what I signed up for. This was not what I wanted. Dr Grange came in and talked me to, explained that the cancer was too close to the left nipple to risk leaving it. It was her job to keep me alive. That was her priority. I understood, but my self esteem took a big hit. The first few weeks were the hardest of my life. I was physically and emotionally battered. I couldn’t shower, go to the bathroom on my own, couldn’t change clothes on my own. My mom was by my side the whole way. She stayed with me for 2 weeks, and then check up on me every single day after that. The women of bright pink were there to tell me it’d be okay. And eventually it was.

                My family is the type to hide behind humor, so we laughed about it. Found the magnets of the expanders and stuck fridge magnets and bobby pins to them. Because when you have magnets inside you, you HAVE to stick stuff to them :) Everyone wanted to feel how hard they were and poke at them, which I was happy to allow them to do.

                The bruising went down, the wounds healed, and then my booby buddy went through the same procedure and we were able to swap stories and questions and “did you have this happen after your surgery?”. It was the greatest thing in the world, to have someone close to my age, going through the same thing, being able to hold each other up and reassure each other. Being able to laugh about it. Eventually I healed and then it was back into surgery for the swap. Expanders out, implants in. That was easy. But then, a lot of things seem easy once you’ve had a mastectomy. A bikini wax is like a walk in a park on a nice spring day compared to the double M. I still had no left nipple though and that was still an issue for me. I couldn’t handle it. So then the third surgery was planned. I was going to have Dr. J rebuild it. I didn’t need any medication after that surgery. At this point, I was a seasoned pro at this surgery business.

Today, I’m very happy with my results. I chose the right doctors.  I still have issues with some of it, mostly just the emotional hit I took. Girls my age weren’t worrying about nipples and cancer, or hot flashes from the menopause caused by Tamoxifen. They were getting new houses, new cars, having babies, getting married, and I was over here trying to decide whether I was going to have my nipple rebuilt or tattooed on, and what kind of implants I was going to have put in. It didn’t seem fair. I was angry. Really angry. Why me? But then a dear friend of mine said something that changed it all. She said “Why not you?”.  She was right. Would I wish my fate on anyone else? Absolutely not. Why not me? What’s so special about me that I can’t get cancer? Nothing. I’m just like millions of other women dealing with this, and as much as it’s taken from me, it’s given me so much more. I'm one of the lucky ones. I had a positive outcome. There are some that would kill for my life. I’m lucky. I’m covered in scars, and I do have days where I just can’t deal. I still get angry and I still get sad. I still get scared about a second cancer. I have a hysterectomy looming in the near future. I have to decide on kids, a decision I’m not ready to make. It’s not an easy life, but it’s a life, it’s MY life. It’s complicated and messy and some days are harder than others but I have the greatest friends in the world, a boyfriend that has proven he’ll be there through anything, the women of bright pink, who saved my life, and a mom who has been my best friend, my nurse, and my rock through this all. I couldn’t have done it without her.  

If I were going to give anyone in my situation advice, it’d be to stand firm. Don’t let doctors or anyone else push you around. You know what’s best, it’s your body, and your choice. If you get told no, get a second, third, fourth, tenth opinion. Be your own advocate. Don’t settle for “maybe” answers. If you feel something, don’t let them tell you not to worry. Find someone who will give you results. Don’t ignore it. Don’t avoid it. You’re never too young, never too thin, too big, too healthy for cancer. Take care of yourself, because nobody is going to do it for you. If I had listened to my doctors, and ignored it, or waited, I might not be here now to complain about them. Listen to your gut, and trust your own instincts and judgment.