disappointment & surgical plan
I am trying hard but I feel so defeated. I had a breast MRI on 2/28 and I knew the fate of my breasts hinged on the outcome of this scan. I was nervous but hopeful. I truly felt the cancer would be barely there or completely gone. I spiraled for less than 24 hours just wondering what was going to happen.
I could hear it in my surgeon’s voice that he didn’t have the news we wanted. “You had a partial response to the chemotherapy, not as much as we hoped and thought,” he said. He offered a lumpectomy but explained it’s a high likelihood we’d end up back in the OR for a mastectomy. There’s just still too much cancer left.
After talking our final decision is a double mastectomy. I’ll also have lymph node dissection because there is also still cancer in my lymph nodes. Apparently this hoe of a tumor isn’t going down without more of a fight so now we’ll cut it out.
We initially scheduled for a lumpectomy for 3/21 - there’s not enough OR time available, and my recon surgeon isn’t available, to do the full surgery on that date. I can’t wait longer than that date, according to my oncologist, so I’ll have another separate surgery on 4/12 to finish the mastectomy and start the reconstruction process.
I am shattered. But pushing forward because getting this cancer out is top priority.
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After settling with the disappointment that I only had a partial response to chemo I realized I was not okay with the plan of two separate surgeries. I reached out to friends who set up an appointment with another breast surgeon here in Richmond and another with surgeons at Johns Hopkins. I am forever grateful for the favors everyone cashed in. The goal was huge - find a new surgeon and get surgery scheduled before 4/1 - within two weeks. This was a big undertaking - many people made this happen and uprooted their work days to help. I even put together a background sheet for friends to share. One big takeaway - you never know who knows someone so always ask!
Surgeon opinion number 2 here in Richmond was great. He was thorough and offered me one surgery, direct to implant, and nipple sparing - everything I wanted and before 4/1. I decided to still go to appointments the next day at Johns Hopkins because you don’t pass up an opportunity to see the best doctors. It was a long drive and long day. My third opinion differed completely from the second opinion. But, both doctors could get the typical double mastectomy with reconstruction in before or close to the 4/1 deadline.
I was left with three options:
Original surgeon, right mastectomy and lymph node removal on 3/21 and then left mastectomy and tissue expanders put in on 4/12.
Second opinion surgeon in RVA, nipple sparing procedure then double mastectomy with direct to implant on 4/5.
Johns Hopkins, double mastectomy with nipple sparing and tissue expanders.
All of the surgeons I met with were impressive and very talented. It’s really tough when their expertise and thoughts don’t align, though.
After hearing the plan and opinions from Johns Hopkins I felt safe to rule out surgical option 2. Direct to implant requires much more skin to be left behind and risks leaving behind cancer. After a call with my insurance, Hopkins was out because my insurance wouldn’t cover surgery there - which was frustrating because I did confirm they’d cover a second opinion there and I wish they told me prior to the appointment that surgery itself wouldn’t be covered.
But, what really sealed the deal was I felt in my gut that my original surgeon, Cliff Deal, was the person for this job. I knew from day 1 he would be aggressive because my cancer is aggressive. He wasn’t going to just give me the breasts I want at the cost of the life I want.
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So, here it is, the final surgical plan:
Monday, 3/21 Dr. Deal will perform a right mastectomy and remove the cancerous lymph nodes. We’ll await pathology. Then, on Tuesday, 4/12, he’ll do the left mastectomy and my plastic surgeon will join to put in the tissue expanders that will save space for permanent implants later. This isn’t the norm, or ideal, but it’s the best plan to get the cancer out now.
I know I will be so very loved and well taken care of. I’ll be sure to let you all know what I might need!
