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. 

Brandi's Story

As a nine-year old girl, I had heard the word breast before. And admittedly, most of the time the word would follow with juvenile laughter, just like when a kid would pass gas in class. But on Thanksgiving Day, 2000, the word “breast” preceded the word “cancer” at my family’s dining room table. And the word “breast” no longer generated a childish giggle.

At age 35, my mom was diagnosed with breast cancer. And like any young mother, when she heard the word “cancer” she immediately wanted it out. She saw the first surgeon who would operate on her, and her surgery was scheduled for the following Monday.

Looking back, it seems so evident that we were dealing with a BRCA1+ gene carrier. A young woman diagnosed in her thirties. A maternal grandmother and great-grandmother with a history of breast cancer (although, post-menopausal), a case of ovarian cancer and a case of uterine cancer. Heck, this family history is almost “textbook” for a BRCA positive family. But no one questioned it. After all, one in eight women get breast cancer- and nine out of ten cases are “just bad luck”.

Several surgeries, chemo and radiation treatments later my mom was deemed “cancer-free”. But “bad luck” struck again, less than a year later. My mom reported to her doctor that she had pain in her chest. Her oncologist wrote this off as post-op pain from her double mastectomy. Several weeks later, she decided to get a second opinion about this “post-op pain”. They discovered cancer, again, this time wrapped around her heart and her sternum.

This time, people began to connect the dots. We have a woman in her thirties with a reoccurrence of aggressive breast cancer. There is a family history of breast and ovarian cancer. This cancer is not responding to treatments the way it is in other patients. Maybe this cancer is hereditary, maybe there is a known genetic link.

My mom went ahead with the genetic testing. I remember her saying “I hope it comes back positive”. And I thought maybe the chemo had made her crazy—so I asked her why. She said, “it would explain why cancer haunts our family.” This coming from an Omaha Police Officer, marathon runner, and sports enthusiast who ate right and exercised, but had always questioned what she had done to give herself cancer.

 Several weeks later she received her result, positive for a BRCA1 gene mutation. Her hopes had come true. But now her worst fears sunk into the pit of her stomach, what about her three children, my brother Ben, my sister Bailey, and me.

Eventually the inevitable end was in sight, the cancer had spread to other organs, to her bones, and to her brain. My mom gathered us around her bedside and made us promise that we would be proactive with our health, making the preventative health care decisions she was never given the option to make.

On my 19^th birthday, the age of medical consent in Nebraska, I saw a genetic counselor. Several weeks later, I found out I too, am BRCA1+. The difference this time, I knew my risk before a cancer diagnosis.

I immediately began in-clinic breast exams, an annual breast MRI, and transvaginal ultrasounds to screen for ovarian cancer. I took comfort in knowing that not if – but when I developed breast cancer, I would catch it early.

It wasn’t until I had a child of my own that I began to wonder why I was waiting for cancer. There is no way I would sit back and wait for the day my son, Peyton had to watch me lose my hair, get sick on the couch, collapse in the grocery store because of cancer. It was time to discuss the other options, it wasn’t just MY life I was worried about anymore…

So at age 22, I had a double mastectomy with reconstruction. My lifetime breast cancer risk went from an 87% risk to less than 2%. And at age 35 I will have a full hysterectomy to decrease my risk for gynecological cancers.

Many think removing your body parts because of a “risk” of developing a disease is radical. I often ask people if they have an 87% chance of their airplane falling out of the sky would they get on it? Probably not. You might survive the plane crash, but are you going to take the risk?

From awareness to action

By: Ben Preston

The recent news of Angelina Jolie has sparked a nationwide conversation about hereditary cancer once again.

For those who are unfamiliar with Jolie’s recent news, she preventatively removed her ovaries—a surgery called a laparoscopic bilateral salpingo-oophorectomy. The surgery was a response to a tumor scare that Jolie was faced with earlier this month.

We want to publicly praise Angelina for her courage and support her decision. The question remains, how can we turn this awareness into action?

In Nebraska, we are very “tuned in” to cancer and its affects on families. We all are touched by cancer in some way, and even with this supportive community of cancer combaters, many families are still naïve to their hereditary risk for cancer.

If you are connected to this foundation, you may already know our mother’s story. Kamie died of breast cancer at age 40. She fought a long, tireless battle… And, in the end, she fell victim to a plague that haunts our family tree. Her death was not in vain, however, because she left behind very valuable information—her genetics.

From these genes, our mother discovered she was positive for BRCA 1. This information was later passed on to my sister and me, and we have tested positive for this gene as well.

Equipped with genetic results and knowledge about risks, we set out to combat hereditary cancer alongside physicians and medical professionals. We are crusading forward to bring action from awareness.

How?

This fight on genetic mutations starts and ends with knowledge. Our philosophy for our foundation gravitates around the idea that knowledge is power. Once a family questions cancer in their lineage, they can take that knowledge and test it. Once the test comes back positive (or negative), they know their risks of getting cancer. Once they know their risks of cancer, they can detect any early tumors in key target areas.

It all starts with one step. Question cancer.

Our foundation is dedicated to creating a community centered on educating and supporting families with hereditary cancer and physicians who combat it. We intend to take our community and spark action among the high-risk population. Eventually, the fight against cancer will begin long before the development of a tumor.