Focus on BRCA 1 and 2 Genes and prophylactic mastectomies   

 BEING PROACTIVE ABOUT MY HEALTH & MY PREVENTATIVE MASTECTOMY

      By: Shari Eve Pack                                                                                  

 My mother was only 38 years old when she passed away from ovarian cancer, leaving behind a young daughter and some very deadly genes. Since I didn’t want history to repeat itself, I decided to face my possible future head on and take action. Here is my story…

 I have always been proactive about my health. I think it’s because of what my childhood family doctor said to me one day. I remember that I was apologizing for bothering him when I was in pain. He said that any pain we experience in our body was a sign that something wasn’t right and shouldn’t be ignored. I do blame this doctor for making me somewhat of a hypochondriac. But, his comment did make me think to check out anything out of the ordinary. It was also due to my mother’s intentional ignoring of her own symptoms that made me seek medical advice on a regular basis.

 In my early 20’s, God blessed me with an incredibly wonderful doctor who took my family history of cancer very seriously. He realized that my mother’s ovarian cancer could have an effect on my life. He informed me that new studies showed a genetic link in ovarian cancer and I should research my family history even more extensively.

 I began my quest for information about ovarian cancer and my family history. Since my family was so small on my mother’s side, I only had my uncle and his children to talk to. My dear uncle told me about his and my mother’s, beloved mother and grandmother who both died of either “stomach” or ovarian cancer. After securing my mother’s death certificate and sharing this information with my doctor, he decided to begin regular CA125 blood tests and vaginal ultrasounds every six months.

 Obviously, neither one was going to prevent cancer. However, our goal was to provide an early detection, should cancer occur. This gave me some peace of mind to say the least. As we entered the 90’s, research became available that suggested a very strong genetic link with ovarian cancer. I started to believe that it was simply my destiny to die like my mother and grandmother before the age of 40 years old. I never thought of any alternatives other than treating the disease early on.

 I read that birth control pills could reduce the chances of developing ovarian cancer so; I decided to take birth control pills. My doctor and I were right on top of conducting regular breast exams as well. When my breasts became cystic and he had to surgically remove lumps, I became increasingly concerned.  It seemed that every time I did a self breast exam, I would find a hard, small bead like lump. I was tried of worrying about cancer every day and having surgery to remove lumps.

 Decades later and still no cure for ovarian cancer

 My mother had been dead for over 25 years and yet very little had been done to prevent or treat ovarian cancer. I couldn’t believe it! I thought that after all of these years, something would have been done to help women identify this disease earlier and live a longer life.

 What in the world were researchers working on during the 1980's? Oh yes, Aids. It seemed as though many other horrible diseases were placed on the back burner or not funded due to the Aids crisis. While I felt and supported the need for Aids awareness and prevention, I couldn’t help but feel a little bitter about the attention towards Aids and the lack of attention to other painful, deadly diseases.

My Options

 In late 2001, my doctor called me from a medical conference where he had just heard about genetic cancer research and felt I would be an excellent candidate. He obtained the information and referral from the speaker/researcher at the conference.

Only weeks later, I found myself meeting with researchers at one of the largest cancer research hospitals in the nation, The City of Hope. There, my husband David, accompanied me through interviews, regarding my family history and a blood test. The researchers said that breast cancer and ovarian cancer are linked and the data will show what my chances are of getting either one or, both. I was more interested in the ovarian as I was certain that was my fate.

I have to say, that even visiting this facility was a real eye opener. Here I was a perfectly healthy individual with choices, surrounded by people in the waiting rooms who didn’t have a choice. I sat amongst people with amputated limbs, in wheelchairs hooked up to IV’s, hats on their bald heads and, I felt guilty because I had a choice.

When we were called back for the results, we very nervously (my husband more than I), entered the room where the researchers all sat around a table. We joined them, at which point, the head of the team, took my hand and began to explain my results. As it turned out, my chances of getting breast cancer was in the 80 percentile while my chances of ovarian cancer were in the 40 percentile.  Neither percentage was good news.

 During the second visit, doctors suggested two options. The most radical option was to remove both breasts and the ovaries at the same time. The second option was to monitor my breasts and ovaries through exams and tests and treat the cancer early on and aggressively when it did occur. The decision to remove the breasts seemed obvious to me. However, I wasn’t really ready just yet to let go of my precious ovaries.

 I was somewhat prepared for the treatment options since my regular doctor and I had discussed some of them in the past. Now, I was just provided factual, personal documentation and could make an informed decision. I was just given the chance to eliminate the fear I’ve lived with for years. And, I did intend to do something about it, with regard to the breasts, anyway.

 I never felt any emotion when I thought about the possibility of losing my breasts. It was rather strange and the decision to remove them seemed simple to me. Don’t get me wrong, I loved my rather large breasts and, so did my husband who was clearly a breast man.  It appeared the loss was to be more traumatic to my husband. And, I needed to take his feelings and factor them into my decision.

 David told me that he would rather have a wife without breasts than a dead wife.  Fortunately, we were dealing with a facility that provided the doctors to perform the mastectomy and reconstruction.  We decided to consider reconstructive measures. We consulted with the surgical oncologist and plastic surgeon a couple of times and decided to go forward with the reconstruction at the same time as the mastectomy. This would end up involving a 9 hour surgery and a week’s hospital stay.

 The reconstruction was actually more complicated and time consuming that the mastectomy. The procedure involved opening up my back and moving my lat muscles around to the breast area. This provided the foundation for the implants and it ensured a more natural appearance. I was told that the reconstruction portion of the surgery would take 6 ½ hours. The reconstruction was to be done immediately following the mastectomy.

 I felt that if I gathered any more information, I would never go through with it. Less was definitely better in this case. I didn’t even ask what was involved with the mastectomy or ask about long term effects of the complete breast reconstruction. I just jumped in with both feet.  Okay, for the most part, that path was the best choice for me. I scheduled the surgery as soon as possible before I changed my mind.

 In a million years, I would have never expected the kind of reaction that I received from just about everyone. Most people did not support my decision in the beginning. This was due to a lack of knowledge on the subject. While women could understand being proactive to an extent, it simply did not make sense that someone would actually remove two completely healthy breasts and, nice ones at that.

 As the day approached, everyone around me became more nervous. I still didn’t feel nervous and started wondering what in the world was wrong with me. I knew I was a strong person but, even this didn’t seem normal to me.

 One of my closest friends and family member by marriage offered to plan a going away party for my breasts. This may sound a bit unusual and perhaps even crazy. But, I felt this was a fantastic opportunity for me and for anyone close to me to accept what was about to take place in my life. She planned the event two nights before the surgery.

 The going away party for my breasts was exactly what everyone needed to accept and mourn what was about to happen. It was very therapeutic. Family and my friends attended this evening gathering at a restaurant. This was the first time that I felt support for my decision.

 We had a terrific time and ended the evening with a “goodbye breasts” cake. 

 The Surgery

On the day of the surgery, the drive to the hospital was a quiet one. David and I and my stuffed cat, sat silently in the car for the 43 mile drive. Upon my arrival at the hospital, I was treated like royalty by all of the staff. Everyone was beyond kind and gentle. I was escorted to a private room in the pre-op facility. There, I was provided with a locker for my personal belongings which would later be taken to my hospital room. My stuffed cat and husband stayed with me as I was prepared for surgery.

The nurses were more occupied in comforting my husband than attending to me. I was getting a bit jealous. When my husband began to lose it and the expression on his face was more than I could bear, I asked him to leave. He was beginning to cry and I just couldn’t handle that emotion minutes before my surgery. We kissed goodbye and he left in a pretty bad state. I felt awful for him and I did understand that this was almost as hard for him as it was for me. Nevertheless, I needed to focus on what was about to happen in less than an hour.

Right before I and my stuffed cat were wheeled into the operating room, the head operating room nurse whispered something in my ear. She said, “You are going to wake up to the worst pain you’ve ever felt in your life.” She went on to tell me that if anyone said that I would simply feel discomfort, they were completely wrong.  Her warnings were appreciated but, so was the morphine that I was going to receive before I woke up.

 I kept telling myself that all I had to do was go to sleep and that the operating room staff had the hard job. I remember the sounds and people in the operating room. Everyone was so kind and comforting.  I fell into an unconscious state while listening to the beeping of machines and the anesthesiologist's hand on my head.

 I remember the first thing I saw when I woke up that evening was my stuffed cat. The nurses left the cat in the operating room to observe and support then, placed the cat on my gurney in the recovery room. I don’t remember much else since I was heavily sedated.

 I don’t recall feeling any intense pain during my brief, cognizant moments over the following couple of days and, that was wonderful.

My chest and back were heavily protected and new bandages were placed every few hours. I was pretty grossed out by all of the drains. I had a total of twelve drains, six under each arm. Every couple of hours, they would fill with blood and fluid and needed to be emptied. The nurses had to show my husband how to perform this procedure. He was pretty nervous about having to do this at home.

About the third day of my hospital stay a lovely girl approached my bedside. She introduced herself as a social worker for the hospital. She was there to help me with the transition from having breasts, to not having breasts. She wanted me to talk about my feelings regarding my experience.  I didn’t feel the need to discuss anything. I felt fine and confident with my decision.

 I thanked her for the visit and explained that at that point, I didn’t feel it necessary to discuss the surgery. There were no regrets at this point, I wasn’t in extreme pain, and I didn’t feel a sense of loss. In fact, I’d never felt better in my life. I finally made a good decision. My support system was outstanding. I had friends and co-workers all over the situation even if they didn’t agree with it.

 I couldn’t have asked for a better medical team, health insurance carrier, or a better facility to handle my surgery. I had constant medical attention and care from the staff.  My only complaint was the horrible hospital food. There are only so many ways to prepare cream of wheat. Every meal looked and tasted like cream of wheat. I ordered a milk shake one day. Their interpretation of a milk shake was to place warm milk in a container and shake it. I was starving. I couldn’t wait to get my hands on a chili burger with fries.

Every so often, someone would come into my room who clearly was not a nurse, look at my surgical area and tell me that was great work and that my “new” chest looked fantastic. For all I know, the cooks and janitors were inspecting my chest. I never asked who they were and thanked them for the compliment. I asked my husband if I was hallucinating and he said no, people had actually stopped him in the hall to compliment the work on my chest. He had no idea who they were.

I left the hospital 5 days after my surgery with so many drains hooked up to my torso that I literally looked like an alien. I couldn’t lift my arms and the pain in my back where my muscles were removed for the reconstruction felt like an inferno. 

Needless to say, my recovery had its ups and downs. All things considered, I recovered well from the initial 9 hour surgery.

My breasts looked like two flying saucers. These strange beings were attached to my chest without a face. It was just skin with tissue expanders. I couldn’t help but, stare for several minutes at a time. There were scars…lots of scars and no areola or nipples. I knew that the reconstruction process would take about a year and half to complete. I just thought in the meantime, I would ignore my breasts. Well, that’s not easy when everyone you know is curious and asks to see the breasts. I certainly was not ashamed of them and understood the curiosity; especially from woman. Losing our breasts is one of the biggest fears.

So, here I was, two weeks after my mastectomy and people wanted a peak. I was lifting up my shirt for family, friends and even co-workers in the bathroom. Fortunately, I wasn’t sued for harassment at work.

I had a few infections and minor problems with the reconstruction. I ended up having 8 surgeries altogether.  I knew it was becoming a problem when the operating room staff all knew me and my husband by name. Each time, we would grin and bear the inconvenience, expense and pain and just moved forward. 

 I felt so blessed to have had the opportunity to make a life changing choice. It has been nearly 6 years and I still wonder how I got to be so lucky when it came to my health. It is my hope that more women will take a more active role in their health by researching their family history and taking the steps necessary to live a longer and healthier life.