In November 2017, I had a prophylactic double-mastectomy with immediate reconstruction. I was 34-years-old. I made this decision after discovering I carried a mutation to the NBN gene. The NBN gene is responsible for the production of nibrin whose job is to repair damaged DNA. The NBN gene is also associated with an increased risk for developing breast cancer. Combined with my strong family history, it seemed like a no-brainer to have this surgery and reduce my risk to less than a 3% chance. Furthermore, my husband, Brandon, and I had three beautiful children and weren’t expecting to have anymore. (Pregnancy and nursing can actually help reduce your risk of breast cancer, which is why I added that!) Now, here I am, less than two years later – pregnant after a mastectomy.  Completely unexpected, totally surprised, and wonderfully elated.

Pregnancy after a mastectomy is an interesting thing – physically and psychologically.  From my Google search, there’s not a whole lot of information out there about it, especially regarding physical changes.

Recovering in my recliner, a few days post-mastectomy, drains and all! December 2017

Early Pregnancy

With my boys, one of my earliest pregnancy symptoms was swollen breasts and breast tenderness. With this baby? Absolutely none of that. I completely lost all sensitivity in my chest post-mastectomy and because the breast tissue was removed there isn’t anything to swell. I have to admit – the soreness was not missed!

Newly pregnant, no physical changes to my chest size OR soreness. 

Psychological Impact

I absolutely loved nursing my boys. It was definitely one my fondest memories from their infancy. It hurts my heart to know I won’t share that same bonding experience with this baby, though I know formula will suit him just fine. I do wish I had the option to nurse him, but at this point that matters very little. To be honest, I haven’t thought too hard about this consequence of getting pregnant after a mastectomy because it does bring me sadness. I think it will likely hurt more once he arrives and I realize the finality of my nursing options. 

I’ve also asked my OB to put a note in my chart to not have the lactation consultant visit me post-partum. My office suggested I tell them immediately upon arrival at the hospital for delivery that I didn’t want them to round on me, too. 

Physical Changes

There are several ways that pregnancy after a mastectomy has affected me physically. 

No Engorgement or Enlargment

First of all, my chest has obviously not become enlarged or engorged, nor has it kept up with the growth of my belly. I look in the mirror sometimes and wonder if I look a little disproportionate because they’re not growing at equal rates. This is probably something only I would notice.

Breast Changes

Secondly, because I had a nipple-sparing mastectomy, I do still have some tiny remnants of breast tissue in that area. Recently, I had some slight but noticeable swelling and immediately became alarmed that it was a lump. Because I have no sensitivity in my chest, I wouldn’t feel any pain or hardness associated with a lump on the inside. The surgical oncologist was great, though, and scheduled an immediate ultrasound and consultation to assess the situation.

This past week, the ultrasound revealed exactly what I suspected: the swelling was due to the remaining breast tissue. It  responded to my hormones and grew like it would under the normal circumstances of pregnancy. The ultrasound showed more on one side than the other. The doctor said that it was totally normal, especially considering I had a nipple-sparing surgery.  She even said that it may grow slightly more before the baby is born, and I could produce some breast milk-like discharge. It wouldn’t be enough to sustain a baby, but she just wanted me to be aware. Basically, it’s likely normal and nothing to panic about. Absolutely connect with your doctor for an evaluation, though. 

In the Future

Moving forward, my doctor advised me to contact them if it doubles in size, becomes hard or red, or shows any other sign of infection.  Additionally, they said I may want to have an additional surgery post-baby to remove the extra breast tissue.  This will further decrease my risk of developing breast cancer. (And, yes, I was aware that by choosing a nipple-sparing procedure that a small amount of breast tissue might remain.) 

Other Physical Changes

Lastly, I have to address the underarm wing. I can’t really think of a better name for it! 😂So, when you have a mastectomy, they remove breast tissue all the way up to your armpits. When you’re pregnant and gaining weight, you’ll obviously fill out a little everywhere – including this underarm area. However, with no breast tissue to fill in, I feel like my underarm wing is a little more prominent because it’s filling out, while the area immediately below it is not! I realize this probably only makes sense to the mastectomy crowd, but it bears mentioning in case you’re experiencing the same thing. You’re not alone 😉

Final Thoughts…

So, a healthy pregnancy after a mastectomy is still totally possible, but your chest isn’t going to respond the same way it would had you not elected to have the procedure.  The hardest consequence for me is definitely the inability to nurse. And, the best perk is for sure the decreased risk of cancer…and no soreness that first trimester! (My family’s earliest case was thirty-eight, by the way, which is why I chose to have my surgery at thirty-four.  I also thought we were finished having children!)

If you have any further questions about pregnancy post-mastectomy, don’t hesitate to reach out to me at [email protected]!