My Boobiversary and One Year NED!
Today marks one year since my double mastectomy. Although I didn't find out until I received my pathology results the following week, this is also technically the anniversary of when I could say that I was NED - No Evidence of Disease. At least with breast cancer, I think most oncologists won't use language like "cure" and "remission" - instead, NED is the technical term, which indicates that there's no sign of cancer according to all of the tests they've run.
I am incredibly grateful that even though I had a pretty horrible time through chemo, that it was effective and I was able to achieve a pathologic complete response (pCR). I still had another long year ahead of me, but I could rest easy knowing that I was likely cancer-free.
While I want this space to be helpful for people with all types of cancer, I thought I'd do a series on the blog over the next few weeks on my mastectomy and reconstruction surgery. Some of it may be mastectomy-specific, but parts of it will be applicable to anyone preparing for a major surgery. And warning/spoiler: I'm probably going to be sharing pictures of my boobs to share what happens with the type of surgery I got.
Today, I thought I'd share a bit about my decision to get a bilateral (double) mastectomy and what my "new normal" with my chest is like.
Chop. Them. Off.
When I was diagnosed with Stage 2 breast cancer last year, surgery was necessary but I was given multiple options. I needed to start chemo right away due to the aggressive nature of my particular type of cancer (HER-2 positive), so this gave me lots of time to think about my surgery options.
Honestly, I wanted a double mastectomy from the very start. From the moment I knew I had breast cancer, my thought was - my breast is growing a tumor that could kill me - what's to stop it from doing it again? Chop. Them. Off. My life is more important than my breasts.
But it is such a final and extreme decision that I am glad I had time to mull it over. I had options - I could have had a single mastectomy or even just a lumpectomy on the cancer side. As my medical oncologist explained to me, the evidence doesn't show any major benefits in recurrence rate or survival for double mastectomy vs. single mastectomy or lumpectomy for my early stage breast cancer.
I make decisions mostly based on my gut, but I like to do my research to help inform my gut. So with the six months I had between diagnosis and my surgery, I researched and reflected on my decision. Ultimately, I decided to stick with my initial instinct, and here's why. While the evidence doesn't show a need for me to have a double mastectomy, the reality is that there's not that much evidence out there for people like me.
I really couldn't find much research related to risk of recurrence for people my age and with my tumor profile. I was very young to get breast cancer (I was 30 years old at diagnosis and fewer than 5% of women diagnosed are under 40) - my age alone makes me somewhat rare. There's not a lot of research specific to young women with breast cancer, and I will be living 2-3 decades longer than most breast cancer survivors purely based on my age. I also have a fairly uncommon tumor profile (HER-2 positive but hormone negative).
The other major consideration was quality of life. I know myself, and I know that if I hadn't gotten the double mastectomy, I would always have the worry of possible recurrence in the back of my mind. I still have a possibility of recurrence in the form of a distant metastasis, but I don't have to worry about my breast tissue forming another tumor again - because I don't have any more breast tissue. It felt like something I could control. Also, if I kept my right breast, I would need frequent mammograms and scans for the rest of my life. I knew that would give me anxiety. Now, I never need another mammogram ever again. It's a very personal decision - this was my idea of quality of life. For others, quality of life is keeping their breasts and dealing with the regular scans.
And because I (hopefully!) have a long life ahead of me, I wanted to play it safe. I had a gut feeling that if I didn't remove both breasts, that the cancer would return. While I didn't test positive for any known breast cancer genes, my HER-2 status indicates a genetic abnormality. Both my medical oncologist and my breast surgeon (who herself has had a prophylactic double-mastectomy) agreed that while the research doesn't show that I imminently needed a double mastectomy, that they understood and supported my decision particularly due to my age.
I was pretty comfortable with my decision. I never felt particularly sentimental about my breasts (maybe because there wasn't much there!!) and I was fine with getting implants for reconstruction. Before my surgery, I even joked around with my friends about my upcoming boob job because I like to make light of my situation sometimes. And honestly, I didn't really know what I was in for. My advice: NEVER joke with a breast cancer patient/survivor about getting a free boob job - because that is NOT what a mastectomy and reconstruction is. The only time it's okay to do that is if, and only if, she makes the joke herself.
I have absolutely nothing against breast augmentation - it's just very different from a mastectomy. A boob job is a choice. Mastectomy is survival. A boob job keeps your breasts, a mastectomy is an amputation.
I was sliced open and two organs were scooped out of my body. I will never be able to breastfeed. I don't have any feeling across most of my chest. My pectoral muscle has been cut open and stretched over my implants so it's now in a completely foreign position, impacting my ability to swim, lift/push/pull anything over 30 lbs, and do many exercises I used to do. My surgeons were able to keep my nipples, so my chest sort of looks similar to how it did before cancer - but they're absolutely useless and sometimes I wonder why I kept them.
I'm not complaining - I don't regret my decision at all and I would do it all over again (but very glad I don't have to). I just want to share that this type of surgery is not just a surgery to remove cancer from your body - it's an amputation that can forever change how your body works. I don't think I really understood that going into it.
A New Normal
I can go into more detail on my choice for reconstruction and what recovery was like in a future post. For now I'll just say, the weeks and months post-surgery involved a lot of pain, very limited movement in the arms and chest, and a lot of unfamiliarity with my body. For months I was acutely aware of my chest at all times, if not in pain. During those painful and awkward months, I don't think I could have been convinced that my body would ever feel okay again - but I wish I had understood that it DOES get better.
I will never feel normal again in my upper body for reasons I already listed above, however I've been able to find a new normal. I can go hours and hours without remembering that I have implants. Through physical therapy, I've learned new exercises to help me build strength and replace the exercises that I can no longer do. My under-the-breast incision scars are fully healed and actually barely noticeable. I'm not acutely self-conscious of my chest all of the time. I also have a new-found liberation from society's view of women's breasts and nipples. I think it's pretty ridiculous how they are both sexualized and censored. I've totally changed how I view breasts and I no longer care about either keeping them hidden or sexing them up. Which is why I'm going to be sharing uncensored pictures on here in future posts with no shame!
I could have never reached this new normal without my amazing support system including my family and friends. But specifically regarding becoming comfortable with my new chest, I have to give special shoutouts to my incredibly talented surgeons at GW who gave me the best possible surgical and aesthetic results, my survivor friends who always "get" me, my insanely talented physical therapist Bretta who has dramatically improved my quality of life, and my amazingly supporting husband who has endless reserves of patience, empathy, kindness, and tricks up his sleeve to help me build my confidence. <3