- Posted October 13, 2012 by
Santa Barbara, California
This iReport is part of an assignment:
Tested for the breast cancer gene?
You have cancer.
I remember the moment when the doctor told us. My heart stopped beating. The world seemed frozen, imaginary, and everything went numb.
I remember my husband, always logical and practical in a crisis, becoming pale, but very still and calm, asking all the right questions: ‘What does this mean? What are our options? What do we do?'
We were the ultimate ‘it can never happen to us’ couple. Joyfully married for 15 years at the time, living emotionally and physically clean lives, we considered ourselves blessed and special in the world and the thought of any debilitating disease striking us was just not a part of our reality.
The next few weeks were a whirlwind of doctors, opinions, planning, tests, appointments, and more education and information than two intelligent people could possible integrate. Even in the face of having a breast cancer diagnosis, we had to make choices and decisions that would affect the rest of our lives and the quality of life I would have.
Each doctor had a different opinion and most of them were very strong in their beliefs. We were on a roller coaster ride that was zooming along and the most we could do was use every tool we had to make the best choices we could in a very short amount of time.
Not only did we have to decide what surgery to have and which surgeon to hire, we had to determine the type of reconstruction to get and which plastic surgeon to hire. We learned more about breast cancer and surgeries in those few weeks than we ever wanted to know.
We had one doctor tell us that I could not even get reconstruction because I had scar tissue.
Another doctor recommended that I get a 10 hour surgery that would leave my body scarred and weaken my abdominals. I later found out that that surgery would use the main artery needed if I ever have heart issues, which, after breast cancer and chemo, I am at a higher risk for.
I personally chose to have a radical double mastectomy (PBM) removing all breast tissue. Because of the type of cancer I had, I could have had a lumpectomy or a single mastectomy. Although I did not test positive for the BRCA gene, there has been pancreatic and liver cancer in my family, and since I already had cancer, my risk factor was higher than most.
I had no second thoughts about getting a PBM: prophylactic bilateral mastectomy. In other words, I chose pre-emptive measures to decrease my chances of getting cancer again and have never looked back or regretted that decision. Many doctors don’t tell you that you have the option of getting a double mastectomy, or the possible consequences of getting a single. Many women who do not even have cancer yet, but know that their risk of getting it is 60-80% or more because of the BRCA gene, choose to get a PBM to protect themselves. I call myself ‘bi’ because I am both a ‘Survivor’ and a Previvor’.
What I have heard from doctors, community members, and colleagues, is that often women who only get a single mastectomy wind up back in the office with cancer in the other breast later and to make matters worse, by then it has spread. I do not know if the statistics support this, but I have talked to people who found this to be true.
Another issue to consider is that if you keep one breast, you will still have to get mammograms. If you get a radical double, no more squashed breasts. For me, the issue was simple. I could have been satisfied with a flat chest and felt fine without reconstruction. But having only one breast would have left me feeling deformed and living in fear of a breast cancer recurrence. It is possible to get one breast reconstructed, but then your breasts won’t match. You can use a prosthesis (fake breast), but I have heard that they are irritating, uncomfortable and that they often fit poorly. They are basically a pain that you have to deal with regularly, and an ongoing reminder of your changed body.
Yes, I am rather vain. My attitude is that I want to stay as attractive as I can for as long as I can. Yes, I am 55 and no, I don’t want to look like a 20 year old. I just want to be hot and cute at 55 and beyond. I consider myself really lucky to have the body that I currently have. Not that I would have consciously chosen getting cancer to get here. However, I currently have great breasts and a flat stomach, can wear tank tops, board shorts and bathing suits, and my body looks great in clothes and out of them, especially for being 55.
And best of all, thanks to my PBM, my chances of getting cancer again are much lower than those of the general population.
I have few regrets when it comes to my experiences with cancer, surgery, recovery, and choosing a PBM. I feel lucky and blessed to be where I am now. I often say to my husband, ‘pretty good for 55’. He responds with, ‘pretty good for any age’. Now THAT is the right response!
People often ask me if having had cancer made me appreciate my life more. And they also ask me what my biggest lessons have been.
Having been involved in personal growth since my early twenties, by the time I got cancer, I already had a solid inner sense of who I am, my purpose on the planet, my dark side and frailties, as well as my beauty, wisdom and strengths. I have an appreciation for living every day to the fullest. Knowing that my life is a gift and that we can all die in any moment has been a core part of who I am for a very long time.
The hardest part for me was not the cancer itself, nor the surgeries, the reconstruction, or the hair loss. The hardest part was the way that people that I had considered good friends responded to me. I was truly shocked when I received strong judgments from people that I had considered close friends, as well as anger, fear, withdrawal, and some really crazy behavior. Many people judged me as ‘operating from fear’ saying that I was mutilating my body, and they couldn’t understand why I would get a PBM rather than choose some alternative route. I had several people start friendship ending fights with me over other random issues. I had heard that cancer makes you realize who your friends really are, and this certainly proved true for me.
On the other end of the spectrum, there is another group of people who put those of us who have had cancer or who are at risk for getting cancer on a pedestal, and they make us somehow larger than life. These people also distanced themselves with assumptions and an unrealistic picture of who I am or what I was going through.
There is this cloud of fear and shame that surrounds the word ‘cancer’. People hear it and they simply freak out. They don’t even bother to find out what type of cancer, if it is curable or treatable, they just get weird. It is as if the person with cancer has leprosy, and it’s contagious.
The magic of the whole experience however, was all of the people who came forward, both friends and strangers, to help, to offer support, to have compassion, and to offer services and suggestions. The way in which I experience my friendships has dramatically changed through this experience, in a positive, life affirming way.
I share this because I have heard similar stories from other people who have had a PBM or cancer. I have found myself supporting many people on this journey over the last few years. I have been a teacher and leader for most of my life, and I feel passionate about sharing what I have learned.
I am gratified to offer personal experiences, hope, possibility, and a positive outlook to others.
with blessings and love,