Part 1- Before Surgery

I recently decided to surgically remove my breasts in an effort to evade the dreaded cancer that runs in my family. My friends and relatives kept sending me stories about what I was about to embark on- relieved that others were also doing something so risky. I read each article and my resolve grew, I knew I was doing the right thing.

My fear also grew though- what if it was all for nothing and I got cancer anyway? What if I looked terrible and my husband was no longer attracted to me? What if I became so self-conscious that I no longer wanted to hug my friends?

These questions swirled around me all the time yet still I really knew in my heart that I was making the right choice for me.

About 4 years ago my aunt (my father’s sister) sent a note out to all the women in our family that she had breast and ovarian cancer. She was in her early 70’s and valiantly fought it off and is healthy and strong today. On the advice of her doctor though, she was tested for the braca gene to see if there was a genetic link to cancer. She tested positive- meaning due to her DNA, she was at high risk to develop these cancers. This gene is especially prevalent in Ashkenazim Jewish women. She was concerned that we too may have the gene and encouraged us all to be tested as soon as possible. Upon hearing this, and then shortly later that her daughter had breast cancer at age 45, I decided to get tested. My mother died of breast cancer at 48 and I had always had a fear that I might get it. It was strange that this information about the gene was coming from the other side of the family and I wanted to figure out if my chances were even higher having cancer on both sides.

At the time, I was 39, married with a daughter and I just wanted to feel some control over my future health. My sister was adamant that she didn’t want to know if she was at higher risk- what could she do if she was? I remember getting the news in the genetic counselor’s office- yes, I tested positive for the braca 1 gene so not only was I at higher risk for breast cancer, but for ovarian cancer as well. I broke the news to my husband and we talked about what I would do about this information. I decided to take every possible precaution from that day forward. Each year I had a mammogram, 2 ob/gyn exams, a vaginal sonogram, an MRI and a CA 125 blood test. I’d have all these tests in January and then wait a month for all the results to come back. I’d meet with an oncologist who read all my results and did a thorough breast exam. January was hell. Though I’d try not to worry and think about the possibilities, I couldn’t help feeling anxious. I’d call my husband as each test came back negative and he’d take a deep breath and say “thank god”.

Last year, another first cousin called to say that she had breast cancer. It is a longer story than this (and very disturbing since it took her doctor many months to finally diagnose her) and she immediately did the genetic testing because she is an identical twin and she was worried about her sister. She too was positive for the braca 1 gene. Though she is doing great, her double mastectomy and reconstruction has been very difficult. Her sister didn’t show signs of cancer but decided to have a double mastectomy just in case. When they removed her breast tissue and did a biopsy, they found stage 2 cancer. This means that even with all the tests she had which came back negative, cancer was growing inside her. Thanks goodness she made the decision to take precautions.

With these two events in mind, I made another appointment to see my oncologist. One of the options she suggested was to have my ovaries removed as soon as I was done having children. This sounded smart- I didn’t need my ovaries any more and it would reduce my risk of ovarian cancer and also of breast cancer due to the lack of estrogen I’d be producing. At age 43, I finally felt ready to do it. It is an easy out-patient procedure but puts you into menopause so I wanted to make sure I was really prepared for that.

At that appointment, she made an interesting comment. She told me that with my ovaries removed, I’d reduce my risk of getting cancer but if I really wanted to reduce the risk even further- I could consider having a mastectomy. When I first heard this, I dismissed it but she said that I could actually lower my risk by 90%. That would mean that I’d be less likely to get cancer than the average woman! A weight was suddenly lifted from my shoulders. I hadn’t even realized how much this had been weighing on me until the possibility that I could change it presented itself. What a gift. I could actually reverse what nature (and my Dad’s DNA) had given me. I thought about my wonderful family and what my getting cancer would mean for them. I thought about myself and all the worry I could eliminate each January. I thought about my cousin who had to do the surgery after chemo when she was at her weakest and most vulnerable. I thought about my daughter and that some day she too would decide if she wanted to take the test. I thought about my mother and how she never got the chance to prevent her cancer. And I made up my mind right then and there that I would do it.

So about a month later, I scheduled the surgery. My friends and family were briefed and I found myself scared and anxious again. I also knew that no matter what I looked like or how I felt right after surgery that I wouldn’t regret this decision. That weight that I carried was almost gone and I couldn’t wait to lighten the load even more.

Part 11 – Surgery

I had a prophylactic double mastectomy and breast reconstruction a few months after that fateful meeting. It feels weird to write this- and it brings up all kinds of comparisons to my mom’s mastectomy so many years ago. I remember feeling quite queasy after her surgery and not wanting to look too closely or know too much. Surprisingly, my then 8-year old daughter had a million questions that I answered over and over.

My cousin gave me “Preparing for Surgery” CD’s a few weeks prior to the date. With some trepidation, I started listening to them and found that they really helped center me and ease my anxiety. When I couldn’t sleep, I listened and felt more in control and relaxed. I took my ipod with me to the hospital and kept it on right up until I checked in.

I opted for the reconstruction surgery where implants that looks like empty balloons are placed over the muscle in my chest. Little by little, my surgeon would fill up the balloons with saline until the skin stretched to the size of the new silicon implants I would receive a few months after this surgery. I chose to keep my nipples so the skin was cut under the folds of my breasts, the tissue removed, and the skin sewed up over the saline implants.

The surgery itself went really well. I did experience one of the possible side effects that you read about on the forms but never give too much thought to. A few hours after surgery, I developed a hematoma- a blood vessel leak- and I had to go back into surgery so the doctor could find and fix it. That was scary. My blood pressure started dropping and I could tell the nurses were getting worried. I remember reassuring myself and trying to access my calm centered breathing from the CD’s. I woke up from anesthesia for the second time and thanked God that I was alive. My pain was persistent but not too bad. As long as I was still, there was soreness but it wasn’t intense and I slept a lot that night. The next day, I got out of bed (not easily) and went for some walks down the hall. Again, it was painful- but not excruciating and I knew that moving around was the best medicine for me. I was released in two days total and went home feeling quite optimistic.

Part 111 – After Surgery

Once home, I had to deal with the drains they put into my chest so that the blood would leave my body rather than get reabsorbed. The plastic bags hang down on each side of your waist – I felt like a cow hauling around udders. With the help of my dear cousin who came to help me (my husband is queasy around blood), the bags had to be emptied and measured a few times a day. No bathing was allowed and the most uncomfortable position was lying down. This made it hard to take a nap and even to watch movies or read on the couch- which is what I envisioned my next two weeks would consist of. By day three at home, I was feeling much better but starting to get a bit antsy.

My first follow-up doctor’s appointment was a welcomed event. They changed my dressings and I got to see the outcome of the surgery. Besides the extreme bruising, which makes you look like you are from another planet- the breasts themselves were not that bad. They looked like deflated balloons- but with the potential to fill out in the future. The nurse rewrapped me and sent me home to continue emptying and measuring my dreaded drains.

By mid week (4 days after surgery) I was off the pain meds and starting to feel myself again. I didn’t leave the house because of those nasty drains but I felt good enough to do it if I wasn’t so vain. The following Monday, they removed the drains and gave me my first injection of saline. 100 cc’s pumped me up to a small size A- better than the negative cup I was sporting the week before. This was a happy day- with the drains gone, I couldn’t help but yell “I’m free!” in the office. While there was still some slight pain and sleeping was not yet comfortable, I felt great—very energetic and ready to face the world.

Within four weeks, I was completely pumped up and back to normal life. My stitches were removed, I bought new bras without underwire (no tissue, no sagging), and started exercising again. My husband loved my new slightly bigger and perky breasts and the scars were fading nicely. While I was planning to have my second surgery to replace the saline implants with silicone- my doctor and I decided to leave the saline ones in place. I really look good and she felt that I wouldn’t gain very much by changing them- this was great news and I’m thankful my body healed so well. I did however decide I was ready to remove my ovaries so I scheduled this surgery just 5 months after the first one.

Part 1V- Second Surgery

Based on how well I recovered from the mastectomy, I wasn’t very nervous about undergoing another surgical procedure. This one would be performed laproscopically and in the hospital but I could go home the same day. No problem—I didn’t even make arrangements for help carpooling my daughter that week. Surprisingly, this surgery was harder for me than the first one. I’m not sure if it was the emotional and hormonal changes that occurred right away or the idea that I’m now in menopause and thus confronting my aging- but this recovery went much slower. When I woke up from anesthesia, I felt like my stomach muscles had all been cut. I was sore, bruised and very swollen from my bellybutton down. I’m told that this feels similar to a C-section – all I know is that it hurt and even laughing had its dangers. Once home, however, the physical healing went quickly again.

Within a few days I was back to driving but right away felt different. First, those dreaded hot flashes hit me full force. I’ve been a super cold person all my life. I put the heat on year-round and often sleep with a hot water bottle (my husband’s biggest rival) to keep me warm. Now, I’m never sure when I’m going to feel this slow wave of warm sneaking through my body. It leaves me clammy and then my wet skin gets cold when it subsides and I’m my usual cold self again. It is very annoying. I put my sweater on, take it off, and put it on again at least a dozen times a day. It just isn’t fair that when I’m cold and wouldn’t mind the hot flash- it is no where to be found but when I’m cozy and comfortable under my covers or wrapped in a sweater- the flashes find me, ugh!

Physiologically, my lack of hormones is throwing my endocrine system off. My body is trying to balance the system and as a result my temperature, energy level and emotions are out of whack. I cry easily, get annoyed quickly, tire out suddenly and I’m very dry. This sounds like a minor issue- why not just put some cream on my skin, right? But it is very annoying and really hampers your sex life. Excuse my directness but intercourse really hurts. And I haven’t even experienced the weight gain yet, that could put me over the edge.

What helps most of all right now is how my support system rallies around me all the time. It helps that my wonderful and loving husband never fails to tell me how much he loves my new body. He is actually amused by the hot flashes- saying it finally puts us on the same temperature planet, as he’s always been hot and clammy! He’s patient with my moods and with my decreased sex drive, which we are hoping is very temporary.

It helps that my amazing friends and family have all been so supportive and non-judgmental about my radical choices. They constantly check in on me and brush off my unusual moodiness and quick temper. They are genuinely interested in my life changes and laugh with me about my bodily complaints.

It helps that my strong and affectionate daughter knows just when to stop pushing my buttons and give me a hug. She’s been so accepting throughout this process even when she must have been scared to lose me.

And finally, it helps that I’m really proud of myself. I feel great about my decision to proactively decrease my chances of getting cancer. I feel great that my body healed so quickly and is getting strong and sexy again. And I feel great that my daughter, sister, and others who may face this same dilemma themselves, got to see how a brave and positive woman took control of her health and increased her chances for a long and happy life…

Melissa