I’ve been thinking a lot about the privilege of access to healthcare, and I have become more disillusioned than ever about my experience with it here in the United States.
My husband works for a “good company” with “good benefits.” Yet, the healthcare costs we have incurred and the hoops we’ve jumped through related to my prophylactic double mastectomy don’t make us feel very lucky.
I decided on this cancer-preventing surgery last year; I did it to save my life. I did it to save my entire family future pain, suffering, and money by nipping it in the bud before it got a chance to ruin our lives. It was the “smart” choice… right? I still think it was– and I don’t have regrets– but I have been disappointed by the process in some ways.
I really had to fight and advocate for myself from the beginning. Despite qualifying for early mammograms due to family history of breast cancer, I had to ask multiple times to get approved for an MRI. Despite there being a law in my state requiring full coverage of screening MRIs for women at high risk for breast cancer, my MRI was coded as diagnostic and therefore I was charged for it. This was because I had reported pain, so they were “looking” for something, and not just “screening.” BIG eyeroll. Word to the wise: wording and coding matter a lot. Don’t be afraid to ask questions. I got charged for my genetic testing when it was supposed to be fully covered, so I had to fight that (I won). I was charged $700 for a breast ultrasound, which should also have been covered under the PA law, but I think that was miscoded as well. I ate that cost.
Once my lifetime cancer risk was calculated and I qualified for a double mastectomy based on risk percentage as well as a precancerous lesion in one breast, it was deemed “covered,” but not fully. Copays for the many appointments needed as well as pre-surgery testing costs added up, totaling over $3,000. These costs always feel icky to me because no one really tells you going in how quickly they’ll add up. Costs are often unknown until after the service has been completed, though before surgery they made me pay an estimated sum ahead of time (only to add more to it after, of course). It’s hard to know what charges to fight and which to just pay, and it gets overwhelming quickly.
It’s not easy to come up with an extra $3k, not to mention the extended recovery time off work required with this surgery. Aside from the lost wages and extra costs, I needed significant help from friends and family in my recovery. Not everyone has that or can afford recovery supplies. I was lucky to have wedge pillows handed down to me and they made a significant difference in my recovery; I wouldn’t have been able to sleep in my bed without them.
The bottom line is, it’s extremely expensive to engage in preventive care, and for those who simply cannot swing it, they incur even more costs down the road when they have to be treated for cancer.
I don’t have the answers (besides Universal Healthcare?) but I do want to send solidarity to anyone out there spending their last dimes of the fiscal year on unexpected healthcare costs. The system feels truly broken.
On 12/11/25, I just had another surgery related to my initial double mastectomy. Last fall, I had immediate reconstruction the same day as my DMX. This past week I had Phase 2 of that surgery, which is part of the surgery protocol, though not mandatory.
Phase 1 was the double mastectomy and the DIEP flap reconstruction, where they took my stomach fat to make me new boobs after they took the old ones out. I’ve written about that a bunch on here if you’re interested. Phase 2 is typically designed to fix any unsightly areas from the first surgery, fill in any gaps, do scar revisions, etc. They want you to be happy with the results, so this phase gives the opportunity to be pleased with the aesthetics of it. I appreciate that it’s not considered elective, but of course, it wasn’t free- I still had to pay over $1,400 for it.
Ultimately, I was given options for managing my lesion and my cancer risk, and I chose what I thought would be the path of least suffering in the long-term. My choice involved drastic surgery to amputate parts of my body so I could prevent getting breast cancer in the future. This choice has reverberated out; it has been traumatic in many ways and has impacted the lives of my entire family. It went well, and will hopefully achieve its intention of lifelong breast cancer prevention. Despite the hassle, trauma, and costs incurred, I must recognize the massive privilege it was for me to be able to make this choice. To live in an area with options, with excellent surgeons, and with a village to get me through it. The ambivalence is real with this one; I’m truly torn. I want to be angry at the Universe for making me go through this whole ordeal. But the truth is, despite all the crappy parts involved, I am grateful for the opportunity to take charge of my life in this way.
So yes, I went back for more. I wanted to feel whole again. Despite losing my body as I knew it, I gained peace of mind with the initial surgery. With this latest one I hope to gain a greater appreciation for my body again.
xo, Amy
