How and why I decided to get a mastectomy?

How and why I decided to get a mastectomy?

A decision to have both of your breasts removed would suppose to be a difficult one. Even if this decision might end up saving your life. For me, there was never a choice.

Every decision has consequences

I know, there’s always a choice. I’ve known that since I was a little girl. I also learned at a young age that every decision can come with its own set of consequences. It doesn’t matter what you decide. It matters how you deal with the decision you made and everything that comes with it.

I always hated my mom telling me I need to consider the consequences – the good and the bad. I soon learned this was the best advice she could’ve ever given me. “You have to live with the choices you made,” used to be one of my least favorite sentences, now it’s the one I use most often when someone asks for my opinion.

What can you live with?

Making a decision is a lot like being in a relationship, at least a good one. You need to give a little to get something back and you need to prepare yourself to make some compromises. It’s never black and white and no matter how much you might want to, you can’t have everything.

It took me a while to fully incorporate this concept into my life but the decision-making process became a lot easier once I did. Every time I’m faced with a decision, I ask myself:

  • What do I want (or not)?
  • Which [decision] will get me closest to that?
  • What do I have to consider?
  • What am I prepared to live with?

I found that imagining the worst-case scenario helps put things into perspective. What are the bad things that can happen and am I prepared and willing to live with them?

Choosing mastectomy

You know how people sometimes say they didn’t choose something, but that it chose them? That’s how it felt with me and mastectomy. I’ve made this decision about having a preventative mastectomy so long ago, it almost doesn’t feel like a choice anymore. After considering all the facts, for me, there wasn’t any other choice.

I remember sitting in a hospital waiting room and waiting for my sister. I had nothing to do, so I looked over the pamphlets. One of them was about breast cancer. I started reading and when I came to the part about BRCA gene mutations and preventative measures, I immediately knew what I would’ve done.

Of course, it’s different when it’s all hypothetical, but I did a lot of thinking on this subject. I already mentioned I didn’t want to get genetic testing without knowing, what I would do. I changed my mind about many things after I found out my BRCA results and started to prepare for the surgery. But not the mastectomy.

My thought process

I know most of my readers will never (thankfully!) have to go through this. But in case you will or you know someone who might, I will explain exactly how my decision-making process helped me confirm that my initial reaction to a mastectomy was a correct one.

It doesn’t matter if you’re deciding about a preventative measure or a treatment plan. This process works for all kinds of decisions – I also used it when I was thinking of leaving my job.

What do I want (or not)? I don’t want to get breast cancer. Or anxiously wait and hope for my test results to come back negative. I don’t want to die.

Which [decision] will get me closest to that? I have two choices. I can choose regular check-ups and tests, or a mastectomy. The first only allows doctors to catch cancer early, the second would lower my risk of ever getting breast cancer (from 60-85% to 1-10%). Considering what I want and don’t want, my best bet is the surgery.

What do I have to consider? My breasts would be gone, obviously. Also, there’s the surgery itself with its many risks (from minor to huge ones, like stroke or death). There might be complications during or after the surgery. The recovery process will be long and painful. Scars. The end result might not be what I had in mind (appearance vise). I may never get cancer.

What am I prepared to live with? This is the part where I put all my thoughts together and try to decide if the pros outweigh the cons.

  1. I can live without my breasts – with or without reconstruction.
  2. The surgery is risky, but if I get cancer, I will have to go through it at some point anyway. And the risks and chances of complications are lower when you’re younger and healthier.
  3. I’m not too thrilled about the “dying during surgery” part. But chances of that happening are low. Also, dying is a worst-case scenario of everything – it’s called life.
  4. I can handle the complications. Note to my readers: make sure you know exactly what those are, before making any decisions. I may not like it, but I can handle it. As long as they’re not as bad as cancer, I got this.
  5. Pain? Recovery? Been there, done that. Also, they give you amazing pain meds.
  6. Scars? No problem! Scars build character.
  7. Cancer doesn’t come with pleasing results, either. I trust my surgeon. But if by any chance my scars turn out terrible, I could get a plastic surgeon to fix them.
  8. My odds are working against me and I’m not prepared to sit around and hope nothing happens when I can do something about it instead.

But you are healthy

I got that one a lot. “Why would you have them remove your breasts when you are completely healthy?”

First of all, without this surgery, there’s a pretty big chance I will get breast cancer one day. And I don’t want to get cancer. I also wasn’t looking forward to being afraid every time I went for a check-up. I know myself – I would worry myself crazy, waiting for them to tell me they found something. It’s always better to prevent than to treat, remember that.

Second, I don’t know for sure if I’m completely healthy.

There’s one thing I often say and it usually get’s me an eye-roll. Just because you look and feel healthy, it doesn’t mean you are! And I don’t mean that in a hypochondriac kind of way. Or that you now have to worry about every disease and illness out there. But if you have an increased risk it’s usually better to get an expert opinion (meaning, go see a doctor).

The problem with breast cancer is, it doesn’t happen overnight. It’s not like everything is fine one minute then boom, cancer. It doesn’t start with a lump in your breast. To you, it may feel like it because that’s the first time you noticed it, but the truth is it’s been there for a while.

It all starts with a single malignant cell (or a small group of cells). If your body is unable to repair or destroy this cell, it divides and where there was one, now there are two malignant cells. When these cells continue to multiply they eventually form a tumor and this is not a fast process.

Breast cancer has to divide 30 times before it can be felt. Up to the 28th cell division, neither you nor your doctor can detect it by hand.
With most breast cancers, each division takes one to two months, so by the time you can feel a cancerous lump, the cancer has been in your body for two to five years.

I’m not writing this to scare you. The truth is if you have no family history of breast cancer and are living a relatively healthy life, chances are you are completely healthy (but self-exams are still a must every month!). For someone like me, though, the story is a lot different.

I know I have a high risk for breast cancer and there is an increased risk of my cancer developing before the age of 40. So to me, regular tests are only a reminder that there’s nothing to see yet! Even if my ultrasound or MRI or a mammogram doesn’t show anything, it doesn’t mean nothing is there. It could very well mean it’s not big enough for these devices to show it.

The last chance

I’ve made my decision clear at my first genetic counseling before they even took my blood for testing. When the doctor gave me my results she confirmed with me this was still the plan and went ahead with scheduling my appointments. I saw my surgeon for the first time two months after that. He was clear that no matter how sure I was about mastectomy at that moment, I can always change my mind.

I didn’t. Almost six weeks ago I went through with it. I said goodbye to my breasts and went into the operating room without a doubt in my mind. And although the recovery is not exactly what I expected or hoped for, I stand behind my decision. I still believe all the choices I’ve made with my BRCA status in mind were right for me.

This was my decision, your’s can be completely different. There’s no universal right and wrong when it comes to your health, remember that. You always have to do what’s right for YOU. And to those who do not agree with my choice – that’s fine. I didn’t make it with you in mind. I made it for me and I’m the one living with it, along with all the consequences it may bring.