Melissa’s Rap: How do you tell your 6 and 10-year-old children you are having a body part (or in my case parts, plural) cut off – just in case? That has been on my mind lately. Honestly, it has been difficult to focus on much else.
A couple of months ago, I was diagnosed with Atypical Lobular Hyperplasia Bordering on Lobular Carcinoma In-Situ. My gynecologist recommended a mastectomy based on my history – 21 plus years of mammograms, where they always found “something”, followed by ultrasounds and needle biopsies and, five times during those 21 years, surgery.
My surgeon, however, felt it best to take things one step at a time, so I had a lumpectomy in January. Thankfully, the area they removed came back cancer-free. However, because of my original diagnosis, I was offered three options:
- 5 years of chemotherapy (Tamoxifen)
- A bilateral mastectomy
- Do nothing (i.e. wait and see)
My surgeon seemed to be a big proponent of the chemo route, citing the surgery as the “extreme” option. She referred me to an oncologist, who also touted the chemo route, even going as far as to say: “we think it’s pretty cool there are drugs to prevent cancer. We think they should be in the water.” I get it. Taking a pill for 5 years, even one that can cause its own issues, seems much easier on the surface.
Here’s the thing though…I’ve already been through the ringer. I’m exhausted. If I choose chemotherapy, I’ll still be going through the same vicious cycle as I have for 20+ years: mammogram, ultrasound, biopsy or surgery…repeat. now that I am high risk, one surgeon informed me that that vicious cycle would only get worse. The thought of going through all I’ve been through, but now times ten, and doing it while taking a drug that increases fatigue and puts you at risk of uterine cancer (as well as causing other issues), seems like a much bigger mountain to climb than surgery. Besides, I could go through five years of that and still need the surgery; or at the very least more lumpectomies.
I know this particular surgery is Hell. I’ve been through major spinal surgery twice and, I admit, this one intimidates the heck out of me. But, it is 2-3 months of Hell vs. a lifetime of it. Plus the surgery reduces my risk to almost zero, something the chemo would not do.
People who have been on this journey with me did not hesitate to say: “the surgery makes sense for you.” Still, I did my research. I asked questions of the pharmacist, the surgeon, the oncologist, and, yes, even Dr. Google. I did a pros and con list and I talked to people close to me to get their thoughts. “That is a tough decision, but I know you will make the right one for you” was the statement I heard the most. I was struck by how much I heard it actually. While the decision was not one I was making lightly, my friends and family who reassured me with these words gave me pause and encouraged me to be even more thorough and thoughtful in my decision process. I was grateful for their vote of confidence and wanted to be as sure of my choice as they were I would make the right one.
I have chosen the surgery, as you’ve probably guessed. And I have told the kids. It was difficult, but because of my confidence in my choice I was able to reassure them that it was the right thing for me to do; that as difficult as it would be, it would save me a lot of risk, challenges and worrying long-term. I still have a lot of questions and I won’t pretend I am not concerned about the recovery process, but I am resolved in my decision and completely at peace with it.
I know from experience, that during times like this, it helps me to know as much as I can about what is coming. I want to know everything, and I will get down to business organizing my life, preparing for what lies ahead, making sure everything is ordered and scheduled and ready. It’s how I deal. It helps me get through trying times. This will be my 7th big surgery and I’ve had many other more minor surgeries throughout my life. I know myself well enough by now that controlling what I can control gives me room to experience and endure the parts that I can’t.
It is weird making what some view as such an “extreme” choice. If it was cancer, there would be less research and lists because the threat is identified and active, but there would also be less judgement and criticism. If you type Preventative Mastectomy into a search engine, about 400 pictures of Angelina Jolie pop up because a few years ago, she chose to have a preventative mastectomy after learning she carried a gene showing a high risk of breast cancer. She received praise from some, but also plenty of criticism as well.
When there is breast cancer present, I imagine the choice is more definitive, although probably not any less overwhelming. In that case the surgery would save one’s life. In the case of my diagnosis, I am choosing a preventative option – just in case. It is an interesting and frustrating place to be, but it is a place of choice. At this point, I can control which path I take. So may women do not have that option. I am grateful to have the option of choice.
A preventative mastectomy isn’t for everyone. It is a very personal decision and only one you can make for yourself. If you are faced with this decision, do your research, write your lists, talk to people who have chosen the surgery and those who haven’t, surround yourself with friends and family who are great listeners and who you know will support you through this journey. Then take the time to just sit with the choices in front of you. Don’t rush. Take as much time as you need. If you feel the option is right for you, it is not extreme, it is just right. As my friends would tell you, it is a difficult decision, but you will make the right decision for you.
Breast Cancer Facts:
According to the American Cancer Society (ACS), as of 2015, the United States averages 60,290 in situ cases, 231,840 invasive breast cancer cases and 40,290 deaths as a result of breast cancer. ACS also reports that: “Breast cancer is the most common cancer among women in the United States, after skin cancer” and “it accounts for nearly 1 in 3 cancers diagnosed in women.” According to the CDC, Breast Cancer is:
- “The most common cancer in women, no matter your race or ethnicity.
- The most common cause of death from cancer among Hispanic women.
- The second most common cause of death from cancer among white, black, and Asian/Pacific Islander women.
- The third most common cause of death from cancer among American Indian/Alaska Native women.”
Have you had a preventative mastectomy or a mastectomy due to a cancer diagnosis? How are you doing? What are your words of advice? I would love to hear your story. Please comment below or email me at firstname.lastname@example.org.
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