Breast Cancer: So Many Decisions, What Should I Do?

Dear Breast Cancer Patient,

Are you trying to decide between lumpectomy vs mastectomy? Unilateral vs bilateral? To have reconstruction or be flat chested?

It’s fucking overwhelming. I can’t tell you what to do, but I can tell you what I did.

I was diagnosed with DCIS (ductal carcinoma in situ) only three months after my Heart Transplant.

I had just turned 40 years old and I had a routine mammogram. It was shocking, considering all the testing that they did pre-transplant and they didn’t find breast cancer?! Come on!

Normal treatment for DCIS is radiation treatment only, but I had already reached my lifetime maximum rad dose because as a teenager I survived bone cancer. So I was recommended to have a mastectomy. But of course…

When I was a teenager I had an Askin Sarcoma in my right chest wall and the chemo and radiation caused all of these late effects, such as DCIS.

The worst part of the breast cancer diagnosis was waiting an agonizing 8 months for my 1 year post heart transplant anniversary to have a mastectomy surgery. If you survive after 1 year of a heart transplant your lifetime survival rate is higher. I call this time in my life, “ripping off the slowest band aid ever.”

So I had a lumpectomy, while I waited for the mastectomy because this surgery was not as invasive, had less risk for infection and easier to heal while being on immunosuppression drugs.

But a mastectomy loomed. For over six months, I contemplated bilateral vs unilateral mastectomy.

Strangely the decision to have a bilateral or unilateral mastectomy was left up to me! It was difficult to weigh the decision and I had 8 long months to dwell and contemplate my options. I wish a doctor or some lab results could confirm if or how much DCIS was also in my left breast. I was almost making a blind choice.

I chose to have a bilateral (both breast) mastectomy. Even though cancer was detected in one breast, I finally based my decision on aesthetics; I wanted to be as symmetrical as possible. This was just a personal choice.

I also chose a bilateral mastectomy, so I wouldn’t have to worry about possible future breast cancer in my remaining breast. Let’s face it, my odds have not been in my favor. LOL (a sense a humor is a must have for my survival!).

Finally, I decided on a bilateral mastectomy because I was encouraged to have this difficult surgery while I was 40 years old with a new heart, rather than 60 years old with a old transplanted heart. This made sense to me and the decision was all mine.

Me a week before my bilateral mastectomy.
I hosted a “Bye Bye Boobeez ‘N Beer Bash” before my mastectomy. My friend made me knitted knockers, they are wearable works of art & a treasured gift.

The mastectomy surgery went as planned. I was told “I hit the pain pump a lot,” but I didn’t care because I was comfortable.

After expanders and taking a couple months to heal, I had reconstructive surgery with gel implants (they don’t do saline implants with mastectomies, who knew?). Six months later I got 3D nipple tattoos. my first ever tattoo(s), so yeah…I’m a bad ass now.

I also got an infection nearly every step of the way. Do not let this dissuade you from having surgery.

I’m on immunosuppressive drugs to make sure I don’t reject my heart transplant, so for me healing is very slow and risk of infection is high. I was hospitalized one time for a breast related infection and had to do a few rounds of oral antibiotics. My nipple tattoos got infected and scarred, so now they look very realistic! 😁 I love my nipple tattoos.

I didn’t know I would get infections (which were all managed), so I just took it one step at a time.

I’m especially glad I got 3D nipple tattoos because I look more normal and this was very important to me, especially as I don’t look like myself due to prednisone and 50 lbs weight gain. I look in the mirror or put on a shirt and feel so much better than I did when I was flat chested after the mastectomy and before the reconstruction… its not vanity, breast are parts of my body.

No one would judge you for wanting to not look disfigured. Whatever you choose is the right decision for you.

I hope that my experience was in some small way helpful to your decision making. Be well and drop me a line. 🎗

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