The Cancer Journals, Part XII:
Let's Talk About Reconstruction*
Federal law mandates that insurance companies cover all costs relating to reconstructive surgery following a breast cancer diagnosis—including any surgery required on the other side to attain symmetry if the patient had a single mastectomy.
While I’d prefer that we have a federal law mandating that insurance companies cover all costs related to healthcare, broadly (I feel compelled to make a Luigi Magione joke here, but I’ll refrain), I’m glad my options aren’t 1. Pay out of pocket for a singular boob job, or 2. Walk around with one breast the rest of my life and deal with the day-to-day impracticalities of that.
Patrick and I met early on with Dr. Kim, my reconstructive surgeon, to whom Dr. Storm had referred us—before beginning chemotherapy, even. Our initial consultation appointment lasted close to two hours, and began with him providing a history of mastectomy and reconstructive surgery, included consistent references to the breast-as-a-pillow metaphor he’d explained when he got to modern-day reconstructive surgery approaches, and ended with him taking photographs of my bared chest with a professional camera while Patrick looked on.
There is no modesty once you become a cancer patient.
We both really liked Dr. Kim, though; we felt at ease with him and trusted his expertise. Like Dr. Storm and Dr. Solti, he gave off the vibe that he had chosen his particular professional focus intentionally, with the desire to help people who needed it—and there’s an awful lot of opportunity in plastic surgery to help people who don’t necessarily need it but will pay for it, anyway.
Plus, I thought it was hilarious that the only male physician on my oncology team was my reconstructive breast surgeon—though this changed to gender parity when Dr. Siddiqui joined as my radiation oncologist.
Dr. Kim explained my options for surgery and reconstruction, based on the treatment plan of a mastectomy that Dr. Storm had recommended, drawing diagrams of mastectomy drainage tubes and the anatomy of the breast on a whiteboard in the exam room.
Though there are several kinds of reconstructive surgery possible—including taking fatty tissues from one area of your body to use to literally reconstruct the breast—the path forward for me would have to be an implant, if I wanted reconstructive surgery of any kind following my mastectomy.
If I wanted, I could opt to have a bilateral mastectomy and immediate reconstructive surgery with implants for both breasts. I could also decide to augment the size of my breasts at this time, choosing any implant volume I desired. Because of the federal law mandating coverage, doing so would not be considered elective, even though my left side was cancer-free and removing it would technically not be medically necessary—nor would increasing my size.
The other option would be to do a single mastectomy and place an implant on the right side only. Insurance—and this part really gets me—will also be required to cover any lifts on the non-implant side to achieve symmetry throughout my life.
Free boob lifts on a noncancerous breast but the government can’t make sure everyone has access to chemo drugs. Mmhmm. 😒
Don’t mistake my snark for asceticism, though: I am more than willing and ready to take advantage of this part of my breast cancer meander (still refusing the phrase “journey” and this is the best alternative I’ve landed on).
It’s just nice to know that our breasts remaining visibly intact from the outside is more important than our literal lives to the people writing legislation and the people approving and denying insurance claims.
In the end, I decided to do a single mastectomy only.
If I had genetics indicating a high possibility of breast cancer happening in my other breast, I would have considered bilateral—but Dr. Kim said something at our initial consult that was very helpful in making my decision, which was that a bilateral mastectomy would mean they were operating on and removing a healthy breast.
It wasn’t an easy decision, but I also chose to move forward with an implant, rather than stay flat on one side. If I had required a bilateral mastectomy from a medical standpoint, I would have considered staying flat completely. But the logistics of being one-breasted, even with a smaller chest, didn’t appeal to me (alas, the time of the Amazons is past, and only the worst Amazon remains, reigning supreme).
The normal process for a mastectomy with immediate reconstruction involves the breast surgical oncologist (Dr. Storm, in my case) and the reconstructive surgeon (Dr. Kim, in my case) working together during the mastectomy surgery. Dr. Storm removed my breast tissue, lymph nodes, and any cancer she could see. Dr. Kim then inserted what is called a “tissue expander” into the same incision made by Dr. Storm for the mastectomy and attached it to my chest wall, suturing the little tabs around the edges of the expander like anchors to my body.
The tissue expander, when seen outside of the breast, looks like a round-ish, empty, clear bag with a hard blue valve shaped kind of like a flattened egg on one side and six of those little blue tabs that secure it to the body around the edge of the circle the bag makes when laid out flat.
The reconstructive surgeon also inserts something called “Alloderm” above the tissue expander. Alloderm is a “regenerative tissue matrix” used in breast reconstruction that sort of replaces some of the tissue removed and helps the tissue expander and eventual implant by encouraging cellular regrowth in the skin of the breast and the tissue of the chest wall. In layman’s terms, a “regenerative tissue matrix” means that Alloderm is a piece of human cadaver skin that has been processed to remove cells that could cause issues, inserted post-mastectomy to help support tissue regeneration. Kinda gross, but also kinda cool? 🤷🏼♀️
Once the Alloderm has been put in and the tissue expander has been inserted and sutured to my chest wall, they sew me back up.
I didn’t ask which surgeon gets to do the incision at the end, but I will at my next follow-up. Ha.
Dr. Storm was able to perform what is called a “nipple-sparing mastectomy” for me, which means exactly what it sounds like it means: a mastectomy resulting in me keeping my own nipple and areola. There are cases in which a nipple-sparing mastectomy is not possible, such as when the cancer is in the nipple or areola area (say that ten times fast); in these cases, patients have the choice of not having a nipple at all or of a rather realistic tattoo—at least when viewed from the front or in a mirror facing forward.
So, when I went home from my mastectomy back in November, I went home with the surgical scars from the mastectomy, a drainage bag hanging out of my right side, and a tissue expander and some Alloderm fitted inside the skin of my very confused and bruised right breast.
One week after my mastectomy, and following my post-operative appointment two days after surgery (at which Dr. Kim said everything looked great and told me “Your nipple is a keeper” with no trace of humor or irony), I returned to the reconstructive surgeon’s office to begin the process of filling the tissue expander, which would prepare my tissues for the insertion of the implant.
This is widely understood to be one of the more painful parts of breast implant surgery, though doing it at the time of mastectomy decreases the discomfort somewhat—but mostly because everything already hurts, anyway.
To fill the tissue expander, the surgeon (or in my case, the physician’s assistant) inserts a very large needle filled with saline into the breast, just above the hard valve in the tissue expander. The valve is hard because it is made of metal, and the large needle is fitted with a magnet, which straightens when the needle is in the correct position to enter the tissue expander valve.
If you’ll recall from one of my earlier posts, a mastectomy results in the loss of feeling in the center of the breast and nipple area, so I thankfully didn’t feel much more than pressure as the needle went in.
Since I opted for a single mastectomy, Dr. Kim and his PA would need to fill the tissue expander to match my other side, inserting a small amount of saline at each visit and allowing my tissues to spread and expand before the next visit. And since a single mastectomy meant I would be staying the same small-chested size I was before cancer, it turned out that I only needed two quick visits to fill the expander to the right size—though how the PA could tell how much it had expanded beneath all that swelling, I’ll never know.
If my lymph node hadn’t tested positive for carcinoma and I hadn’t needed radiation therapy, I would have spent the next three and a half months post-mastectomy and tissue expander pump-ups healing, and then proceeded with the final implant surgery in late January or February. Because Dr. Kim and Dr. Storm worked together for the mastectomy and immediate reconstruction, the final implant surgery would require minimum healing, and I planned to hold what I was calling a “Booby Shower” in the spring to celebrate being finished with my cancer meander (well, except the five years of endocrine therapy that will start next week, but that’s a post for another day).
But. The lymph node was positive. Which meant I did need radiation—which affects both the timeline and approach for reconstructive breast surgery, unfortunately.
Radiation therapy, because it is essentially a laser intended to kill the cells that make up our bodies and does not distinguish between cancer cells and noncancerous cells, causes changes both on the surface and inside the tissues it is beaming through. Generally, the tissue in a radiated area can tighten or shrink, and it is difficult to tell by how much, as these effects don’t generally present until 3-4 months after radiation therapy ends.
If an implant is inserted before the tissues in the chest wall and breast have finished…adjusting…after radiation, something very painful called a capsular contracture can occur, which means a “capsule” of scar tissue forms around the implant, tightening and hardening inside the body. It looks painful and sounds awful.
Because of this, my final implant surgery will take place no sooner than six months after radiation therapy ends (final round is Monday, January 6th, as of this writing!).
And, since we are talking both tissue expansion from the bag in my chest and tissue contraction from the radiation here, Dr. Kim and his PA need to adjust how much they fill the tissue expander based on the expectation that the tissue will shrink over the next six months.
Practically speaking, this means I am walking around with my right side over-inflated compared to the left, rather than the symmetrical look I was promised by federal law (har-de-har-har-har), for the next six months!
Honestly, it’s not so noticeable unless I’m lying flat on my back, which I expect will still be the case even when the final implant gets placed this summer—so I better get used to having a fake boob now.
At first, when I’d gotten over the shock and anger about having to undergo a course of radiation therapy after my mastectomy, I was still peeved that I’d be stuck with the expander for six months instead of getting the final implant surgery over and done with in just a few weeks. The tissue expander hurt, and it wasn’t just after the visits to Dr. Kim’s office to fill the expander up, when my body was adjusting to the extra space needed to accommodate the saline.
I could feel each of the anchors around the edges of the expander, and sometimes I could even feel with my fingers through the skin to the thick thread Dr. Kim used to suture them to my chest wall.
Our bodies aren’t made to sew bags into, and so I could also feel where my side met the tab and see the odd, straight edge that formed on the side of my breast, where odd, straight edges normally aren’t.
The valve that the PA used only twice to add saline to the bag rested painfully just behind my nipple and was a presence I couldn’t remove from my focus, kind of like the tumor it had replaced. Always there in my consciousness, more so when my chest—slightly further out on the right side than I’m used to because of the over-expansion to accommodate radiation shrinkage—would brush against my arm, the seatbelt, a door.
I felt that I would never not feel every small part of the tissue expander inside of me for these next six months, that it would sit uncomfortably inside the skin of my right breast like the foreign object it is, that I would wish it to be out until the very moment it was out even though I’d be out, myself, from the anesthesia (and thank goodness for anesthesia because I read recently about early 19th century mastectomies for breast cancer patients performed without it, and that sounds like a hell I wouldn’t wish upon anyone 😬).
And then, sometime between late November and now, I stopped noticing it constantly.
I can still feel the tabs and the valve behind my nipple. I can still see the weird straight edge on the side of my boob. But instead of being a constant distraction and discomforting annoyance, it’s just kind of there. An internal object that provides some occasional fascination (let me just tell you, a shimmy looks funny with a tissue expander in one side! 🤣), but not one that feels like it is foreign and should be immediately cut from my chest.
Part of this is just because I got used to it, of course, but part of it is because my body healed, both from the mastectomy and the beginning stages of the reconstruction process, very well. I’m lucky to have not had any complications and grateful to have nearly full mobility and strength back—even if I’m exhausted from radiation!—eight weeks out from surgery. I joked recently to Patrick that my advice to anyone who gets cancer is to have a 15–20-year yoga practice prior to your diagnosis, so get on that (mat), if you haven’t already.
All jokes aside, I am also grateful to have access to reconstructive surgery as an option following my diagnosis. For me, it’s not so much about being attached to having breasts as it is being grateful for the option to not have such an obvious and visible reminder of being a breast cancer patient every day for the rest of my life—something I know not everyone who gets a cancer diagnosis has the opportunity to choose.
Plus, my friend Emma suggested that if I got an implant, I could name it, and I’ve been searching for the perfect name ever since.
With radiation therapy affecting my reconstruction timeline, I won’t technically be able to celebrate my new look 👙 until later this year, and so I’ve moved the Booby Shower I’m planning to August accordingly—date TBD as soon as they give me my surgery date and recovery timeline. It just might include an implant naming contest.😘
*(To the Tune of “Let’s Talk About Sex”)