An article appeared on the New York Times’ website on Monday called “No Regrets After Double Mastectomy, but Questions Remain.” Essentially, the article discusses why women choose a bilateral mastectomy over a lumpectomy when diagnosed with an early stage breast cancer in one breast knowing research shows there is no statistical difference in long term survivablity between a bilateral mastectomy and a lumpectomy with radiation.
So, women like me.
It is a deeply personal choice, and what’s good for one, is not good for another. I can only tell you why I chose what I chose and if I would make the choice again.
First of all, I chose a bilateral mastectomy because, while I understand the statistical outcome is the same for mastectomy versus lumpectomy with radiation, I needed the peace of mind knowing the cancerous breast was gone. Does it eliminate the chance of a local reoccurrence (the cancer returning to the same breast area)? No. There could be a chest wall reoccurrence or reoccurrence near the mastectomy site in what tiny little breast tissue is left. But, does it give me some small, measurable peace of mind knowing the breast that tried to kill me is gone? Yes, it does. But, I will never, NEVER, stop worrying about a reoccurence. In fact, I had a meltdown last week because there is a long lumpy feeling thing on one side of the left tissue expander. I had an appointment with my OBGYN the next day. She felt the area and reassured me it is fatty tissue. My breast surgeon, only a week beforehand, had warned me I could possibly start to feel lumps and bumps, but they were most likely fatty tissue or dead tissue. My OBGYN told me my surgical sites are still swollen and healing internally. That is why I feel a long lumpy thing there. But, she also told me if I keep feeling it or I get nervous, call her, call my surgeon, or call my oncologist and one of them would set up some testing to make sure. Since then, the long lumpy thing is less lumpy. It was an area of swelling. There’s a similar area on my right side. But, knowing all that did not stop the sinking feeling when my fingers touched an area on my left breast and found a lump like thing. I’m grateful I had an appointment with my OBGYN already scheduled and she could offer me a small bit of peace.
Also, I wonder, if I’d chosen a lumpectomy, would all the pieces of the tumor been removed? My tumor disintegrated into small bits. Those bits are the reason the ER+ cancer was found. They’re the reason I’m on tamoxifen. Would I have needed a mastectomy anyway once the sentinels tested positive?
I’m not going to say I love the choice I made, but face it, I was damned if I did and damned if I didn’t. My choice to have a bilateral mastectomy was the only one I could handle.
The reason I chose to have both breasts removed is more complicated in my situation. I had a benign tumor in the right breast, for certain, but there was another tumor we did not know what it was because it did not appear on the mammograms or ultrasounds. It appeared only on the breast MRI. At that point, I knew, I wanted the right one removed as well. I couldn’t handle knowing there were tumors in the right breast, even though one tumor was benign and it was highly likely the unknown was benign. The right breast was normal according to the pathology, save the two fibroadenoma tumors. There were no changes in the right breast. I could have kept it.
I’m glad I didn’t. I know myself. It would have been a constant source of worry. I would have needed mammograms and ultrasounds on it every six months. I’m leery of medical tests now. They’re somewhat traumatic for me. There’s a lot of anxiety and fear in me when I have to go for any test now. I can’t imagine how much worse it would be if I required almost constant monitoring of the right breast on the off chance it developed cancer, too. So, I’m glad I didn’t keep it. It was guilty by association.
In my heart of hearts, I knew I was going to opt for a bilateral mastectomy the moment I was told I had breast cancer. I know myself well enough to know if I had opted for the lumpectomy, I wouldn’t be able to cope with the monitoring. The testing. The fear. I’m scared now, but I know the fear would be much, much more if I had kept my breasts.
They were trying to kill me, after all, and still might.
My surgeon really prepared me for what would happen and what the after effects could be. I was prepared for the loss of sensation and feeling. I got lucky. I lost less feeling than I thought I would. There are places where my skin is numb, but again, the area is less than I expected.
I can feel hugs. The article mentioned how sometimes the loss of sensation means no longer feeling someone hugging you. I can’t imagine that. Hugs are one of the few things that really comfort me when I’m really upset. The only issue I have now with hugging is that hugs can be uncomfortable because my left side still hurts some and people forget. But, that’s about it. Also, I didn’t lose range of motion in my left arm. No part of it is frozen. From what I’ve read, I’m lucky I have as much feeling and sensation as I do and kept my range of motion. My only issue with it, right now, is stiffness. There are days, like today, where it is stiff. I saw Dr. D today and mentioned my arm was stiff. He told me to do some stretches.
What I was not, in anyway mentally or emotionally prepared for, was reconstruction, but again, my situation was different. I went into surgery expecting to wake up with a reconstructed chest using my own tissue. I woke up to a mostly flat chest reconstructed with tissue expanders because of the undetected cancer in my lymph nodes. My tissue expanders are fully inflated now. Size wise, I am the same as I was pre surgery. But, it’s still not what I expected or had prepared myself for, and while it’s not as hard to face or deal with anymore, it was rough. I needed time to adjust. I think I’ve done a good job of adjusting over the last month and a half since surgery. And now, as I stare true reconstruction surgery in the face this summer, I no longer know if I’m going to do the DIEP reconstruction. Right now, I’m leaning towards implants. It’s something I need to think about and really decide what I want to do. Today? I don’t want to do the extensive surgery and recovery required by the DIEP reconstruction. I might feel differently tomorrow. Who knows…
Ultimately, I ask myself this: would I makes the same choice again knowing the outcome of my bilateral mastectomy?
It was the right choice for me. It was what my gut told me to do.
My gut was right.