Anne’s Struggle with Ovarian Cancer Shows How Important It Is to Know Your Family’s Health History on Both Sides

There are moments in every life that have staying power. You’ll always know where you were when “it” happened. Sometimes these are collective shared memories, such as where you were on 9/11 or, for my parents’ generation, where they were when JFK was shot. At other times, the moment in question is more personal: where you were when your significant other proposed, or who was with you when you found out you had been accepted into your first-choice college. I have many moments such as these etched in my memory, but I’m not sure any of them are as vivid as when I first learned I had ovarian cancer.

It was Friday, June 5, 2009 at approximately 2:30 pm. I was in a “closed-door” meeting with my office manager, Mary Kay. This wasn’t a scheduled meeting; in fact, we weren’t even discussing anything work related. We were both fried from an especially stressful week and so we closed the door to my office to have a few minutes of quiet. And then, my work phone rang. I recognized the phone number immediately: it was one I had been dialing quite frequently over the last few months – my Ob/Gyn. I remember thinking, “That’s weird, he doesn’t usually keep office hours on Fridays.” That should have been my cue that something was wrong. Our dialogue went something like this:

Doctor: Hi Anne, this is Dr. Ob/Gyn. Listen, I’m not sure how to tell you this. (pause) I got the pathology report back and you have ovarian cancer. I’m sorry to tell you this over the phone but I knew if I told you to come to my office on Monday, you would worry all weekend.

Me: (silent)

Doctor: Anne, are you there? Did you hear me?

Me: Yes, I heard you. (At this point, Mary Kay was clearly trying to figure out whether she should leave the room. She later told me that she wasn’t sure I was breathing based on how red my face was turning.)

Doctor: Anne, I took the liberty of scheduling you an appointment with a Gynecological Oncologist. Ordinarily, you wouldn’t be able to get in this soon, but quite frankly, he’s so interested your case that he agreed to see you on Monday morning. Do you have something to write with? I’ll give you his address.

Me: I don’t understand, I thought you had already removed the cancer. Why do I need to see an oncologist?

To be honest, I don’t remember the rest of the conversation. I know he explained that I would need to have a staging surgery to determine if the cancer had spread beyond the ovary, and that the oncologist would then construct an action plan. He also said that it was very rare for someone my age to be diagnosed with ovarian cancer, and that the specific type of ovarian cancer I had was also rare. You see, I had been diagnosed with a mucinous cystadenocarcinoma. I was only 28 years old at the time.

I left work soon after that phone call ended. I don’t remember driving home. In retrospect, I probably should have let someone else drive. Atlanta highways are dangerous enough … adding a serious distraction such as a cancer diagnosis to the mix really was an unnecessary risk. Nonetheless, I made it home in one piece. Over the course of the weekend, I went online and read more about ovarian cancer and what I read was not reassuring. The gist of it was that survival rates for those diagnosed with early stage ovarian cancer were pretty good, but most of the time, women received a Stage III or IV diagnosis. And I couldn’t understand why “survival” was mentioned in terms of a five-year time span – as if living another five years would be considered winning!

As hard as it was to hear the news that I had ovarian cancer, telling my parents was far more difficult. My parents had just moved to Atlanta, so I drove the 1.5 miles to their home and sat them down in the bedroom. My dad was very hard of hearing and that was the room with the best acoustics. I didn’t want to have to repeat myself – I knew it would be hard enough to say it once! My parents were very upset. My dad was extremely quiet and my mom kept repeating that it wasn’t fair. I now understand that what she really meant was that it wasn’t fair that I was the one who was facing this hardship when she was still healthy. I’ve talked to enough other cancer survivors to know that this reaction is universal. No parent wants to see their child suffer; they would do anything to transfer the cancer to their own body if they could and spare their child from facing the disease.

Next came telling my siblings and their kids. I am the youngest of three children. My oldest brother, Scott is 16 years older than me. Jeffrey, the middle child, is 10 years older. They are both married and at the time each had three children. Despite the age difference, we are very close. I couldn’t ask for better siblings. I knew the news would be devastating, but it was important to me that I not hide the truth from them.

The time between the Friday I found out and the following Monday was agonizingly slow. When I went to see the oncologist and was told that I wouldn’t be having the staging surgery for a month, I thought I would explode! In the movies, people find out they have cancer and in the next scene, they are undergoing surgery and/or chemotherapy. But I guess a movie that accurately depicted the pace at which things really take place wouldn’t be very popular at the box office. The next month was hard – I tried to keep myself occupied during the day, but the nights were difficult. When I went to bed at night, I lay awake, consumed with worry. As a distraction, I went on several weekend trips with friends to try to have some fun. I’ll always be thankful to them for treating me as normally as they could, instead of walking on eggshells around me.

In advance of the surgery, I met with the healthcare professional again. He explained that I would be in the hospital for approximately five days following the operation and that, depending on what he found when he opened me up, he might need to remove both of my ovaries. The thought of menopause and the loss of my fertility at my young age were terrifying, but I just wanted the cancer gone, no matter what I lost in the process.

July 9, 2009 was the date of my staging surgery. I remember waking up in recovery and waiting anxiously for the healthcare professional to come to my room and tell me what he had found. After what seemed an eternity, he arrived and gave me the good news. There was absolutely no evidence of disease outside of the cyst that my ob/gyn had previously removed. My cancer was at the absolute best stage possible: 1A. As a result, he only removed the affected ovary and fallopian tube. But I still ended up being in the hospital for a total of eight days – for two reasons: First, I had a high fever and the healthcare professional wanted to monitor me a bit longer to ensure that I didn’t have an infection. Second, and this one still utterly confuses me, apparently after a laparotomy, it is necessary to have a bowel movement before they will discharge you. But they wouldn’t give me any solid foods! It always makes me laugh to think about that. You hear the jokes about couples that have a bunch of kids “not knowing where babies come from.” I joked that the didn’t know where poop came from – and, yes, I just said poop.

After three months of healing from my surgery, I was able to go back to work and, as it turns out, my return was well timed. While I was out on leave, the sister of my office manager was diagnosed with breast cancer. But, unlike my early stage cancer, her sister was diagnosed with Stage III. Mary Kay told me that breast cancer was all too common in her family. Her mother had died from it and several other family members had been diagnosed as well. I remember one day overhearing her on the phone with her sister talking about some “gene” that might be the cause of all the breast cancer in their family. And that, despite the fact that her sister had undergone a double mastectomy, she was going to be tested for the genetic mutation because she could be at a greater risk of ovarian cancer too. I was suddenly concerned that the opposite could be true for me. My reasoning was that, if breast cancer could lead to a higher risk of ovarian cancer, then ovarian cancer might also lead to a higher risk of breast cancer. I vowed to find out. But my life got busy and I didn’t follow through as quickly as I should have.

Over the course of the next few months, I had a couple of follow-up appointments with my oncologist, and I became more and more disgruntled with him. It seemed clear to me that I was no longer “interesting” to him. And he couldn’t satisfactorily answer my questions. He seemed to think my fears of a cancer recurrence were unfounded. He kept telling me that I was “lucky and should get on with” my life. I didn’t like being belittled so I decided to stop seeing him.

I did my research and decided that, if I was going to get a second opinion, I wanted to go to a healthcare professional who was associated with an institution that dealt with ovarian cancer on a far more regular basis. I chose a healthcare professional at Johns Hopkins in Baltimore. In September 2010, my mom and I went to see her for the first time. At this appointment, I brought up my concerns about breast cancer and asked her if I should be getting mammograms at an earlier age due to my ovarian cancer diagnosis. She told me that, in order to answer that question, I needed to have genetic testing done. I did some more research and discovered that the only place in Atlanta that offered genetic counseling was Emory University, so I scheduled an appointment. The counselor told me that I didn’t have the type of cancer family history usually associated with a BRCA-mutation and my insurance might not cover the test, but that if I wanted to go forward with it, she would send it to Myriad Genetics for me. My ovarian cancer, combined with my aunt’s breast cancer diagnosis, was enough to get 100% coverage from my insurance company after all. As a result, just after my 30th birthday, I found out that I carry the BRCA2 mutation.

It’s funny how quickly a healthcare professional’s tune changes when they find out you have this mutation! I was Immediately told to consult a breast specialist to have a breast exam scheduled. In February 2011, I had my first mammogram and breast MRI. There were a few spots that the radiologist believed to be micro-calcifications, but as a result of my BRCA status, he suggested that the healthcare professional perform a biopsy to be certain. After the pathology report came back, my healthcare professional confirmed my fear – I did have breast cancer. Because of the “aggressive nature of the little bugger” as my breast oncologist put it, I needed chemo. After talking to my breast surgeon at length and learning that I had a statistically greater than 50% chance of getting cancer in the other breast, I chose to undergo a double mastectomy. I wasn’t messing around!

Chemo sucks. But it wasn’t as bad as I expected. I think I have Hollywood to thank for that. In the movies and on TV shows, everyone undergoing treatment is hospitalized and wasting away into nothingness. While I did have some side effects, I persevered. My company did not allow me to work during the chemo. Our disability plan required me to either work every day or not at all. And, since I clearly couldn’t commit to coming in every day, I was out of work for nine months. That gave me a lot of time to think, and the one thought that kept popping into my head was that I needed to make a decision about my remaining ovary. My gynecological oncologist at Johns Hopkins had made it very clear that I should have it removed by the time I was 40 in order to reduce the risk of recurrence, but I wasn’t sure if I wanted to wait that long. Every three months, I was undergoing a transvaginal ultrasound to look at the remaining ovary. For the previous six months, there had been a cyst on my ovary that had not gone away. The healthcare professional was fairly certain that it was benign, but, because they were surprised to find out that the first ovarian cyst was malignant, it didn’t give me much reassurance.

So, after much soul searching and talking to my boyfriend (who is now my husband), I made the decision to have the other ovary removed and, when it came time to have a family, to do so through adoption. In December 2011, I had the second ovary removed. Menopause is no walk in the park, but the peace of mind that I now have as a result of being without ovaries is worth the hassle.

Since learning that I have the mutation, I have often thought just how lucky I am to have that knowledge. To live in the an era where genetic testing is available is pretty amazing. Without the test, I would still not have had my first mammogram, and wouldn’t have had it for six more years after when I did! In all likelihood, the breast cancer would have metastasized before it was diagnosed. I genuinely feel that the genetic test saved my life.

The mutation was passed to me from my father’s side of the family. I’m afraid that a lot of people don’t know that cancer on their dad’s side of the family matters. I didn’t. I used to think that breasts and ovaries were “female organs” and therefore I was safe from developing these cancers because there was no cancer on my mom’s side of the family. As a result of finding out that I carry this mutation, other members of my family have the opportunity to find about their own mutation status, including the men. That’s right: this mutation impacts men too! First of all, men have breast tissue, which means that they can develop breast cancer as well. But in BRCA-2 mutations, there is also a higher risk of prostate cancer, pancreatic cancer and melanoma, all of which affect men. All three of these cancers run in my family, and therefore several of my male relatives have chosen to be tested and have found out that they carry the mutation. Having this information will encourage their healthcare professionals to watch them more closely so that, hopefully, they never develop cancer, but if they do, it will be caught early, when the prognosis is more favorable. So far, neither of my brothers has been tested, but I’m hoping that they will change their minds in time. If they are positive, the information could possibly be life-saving and their children would also know that they need to get tested when they are at an appropriate age. But. if they are negative, then the mutation on my father’s side of the family will stop with me. And what a relief that would be for all of us!