There’s no doubt that undergoing a mastectomy can be an anxiety-inducing experience. Having been through a double mastectomy myself, here are my tips for dealing with the physical and emotional effects.
The morning I checked into the hospital for my double mastectomy, I was numb. I really didn’t know what to expect. I nervously twirled one of the braids hanging from each side of my head while I waited to be called into presurgery.
Hanging out suspended in that space of the unknown before my mastectomy made me anxious and a bit bewildered.
We often talk about waiting in the unknown spaces of cancer in the Bezzy BC app. Thankfully, people share their stories there, and it helps take the edge off of the waiting process when you don’t know what to expect.
There are a lot of practical tips out there on how to prepare for a mastectomy, but having been through a double mastectomy myself, here’s a deeper dive into what you can expect based on my experience.
I was told about some of these sensations and side effects before my mastectomy, but I didn’t really know what to expect from those experiences to come.
One of the biggest surprises I wish I’d been more prepared for following my mastectomy was all the numb spots on my chest and the back of the arm that had 19 lymph nodes removed.
Nerves get cut in surgery. Some of them return to normal over time, some not at all, and some anywhere in between. The back of my arm is still numb 8 years later, some parts of my chest are all the way numb, and other parts have some sensation. I’m used to it now, though, and don’t really notice it unless I’m thinking about it.
I couldn’t lift my arms after surgery for a couple weeks. They hurt. Not everyone hurts, but a lot do, and I did.
I was glad that I’d put my hair in braids before surgery. I wanted to keep my hair out of the way, knowing I’d be in the hospital a few days. What I didn’t know is that I’d be glad to have those braids because T. rex arms meant I couldn’t lift my arms to wash or comb my own hair for a couple weeks.
The T. rex phase will soon pass, and you’ll raise your arms again, but it’s likely you will need to do some chest and arm exercises and stretches to get things loosened up again and regain your range of motion. Ask your doctor to show you some moves or refer you to a physical therapist.
Just take it slow and easy, and you’ll get there in time. I started chemo not long after my mastectomy, and I do remember being able to lift my arms up to precut my hair before shaving my head once my hair started to fall out.
For whatever reason, this “spooked” me a lot, and I hear it often from others recovering postsurgery who are wondering about these drains attached to them. I know my surgeon told me I would have a couple drains after surgery, but I didn’t know what that would be like.
While you’re still under anesthesia, thin, flexible tubes are stitched into your torso to collect postsurgery blood and fluid in a little bulb on the other end of the tube. This helps aid healing and reduce inflammation. But they’re cumbersome.
I was worried I would snag the tube and tear a hunk of skin off my body. It just feels weird to have a tube stitched to your torso! It can also make getting comfy to go to sleep a challenge.
They’re a pain, but you’ll usually only need them for 7–10 days. And don’t fear them being removed like I did! I thought I was going to faint when it was pulled out, but it was literally over in one second.
I still get phantom feelings of tender breasts during my period or a feeling of very full and heavy breasts, like while pregnant. Somewhere, somehow, the body remembers.
For me, the physical stuff — even the lasting numbness in my body — wasn’t awesome, but it was all temporary. But the emotional side of my mastectomy was different.
My best advice? Feel all the feels, and tend to them.
As soon as I knew I’d be having my breasts amputated, I instinctively started to have anticipatory grief.
I took pictures of my still “normal,” still intact self. I continued documenting myself after my mastectomy and through reconstructions. These photos helped me process everything I’d been through, see progress, and really see the changes in me and find acceptance.
At times, I felt in denial and was unable to accept my reality, but that was just part of the journey I needed to go through and honor. Those pictures helped me do that.
It felt good to preserve the memory of and honor my pre-mastectomy body before I entered the unknown. I’m a big fan of documenting the before and after versions of ourselves. Nobody else has to see them — they can be a processing tool for your eyes only.
Not all of these pictures were of my chest or body. I took many pictures of my face and eyes, and I could see they were holding so many emotions. I can’t tell you how many times I studied my own face and processed through so many emotions doing just that.
I have been a longtime believer in the power of writing through life’s experiences. It could be an essay, journaling, a letter to our body, or even a list.
I’ve done all of the above both before, right after, and years after my mastectomy. I still write about it 8 years later!
Writing before my mastectomy was a good way to process my feelings and acknowledge what was happening, especially since I wasn’t ready to talk much to anyone about it at that point. I didn’t realize at the time that it’d be a gift for myself after my surgery to read those words in retrospect and feel good to have processed through such a range of emotions — comfort, grief, empowerment, joy, and even acceptance.
This one is so simple and easy. Find a community online, such as Bezzy BC. If you don’t feel ready to share, you don’t have to. Simply taking in what others are posting about can be enough.
If you need to put your fears out there and ask questions, know that the community is a safe and welcoming space for you to do just that.
Waking up to a changed body after surgery was hard. And so was the first time I saw my chest in the hospital after my surgery — no way around it. But the pictures I took and the thoughts I wrote leading up to that moment prepared me to be connected to my body and feel my feelings with intention.
Medically reviewed on June 01, 2023
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