After meeting with 8 plastic surgeons, yes 8, and reading everything I can find online (which I don't suggest because the web is full of horror stories and pictures), this is the world of reconstruction as I understand it. There are 2 main types of breast reconstruction: implants and flaps. Implants are, well, implants. There are 2 procedures that can be done: 1) expanders are placed under the chest muscle and slowly filled up with air until the chest muscle is sufficiently stretched, then the expanders are switched out for final implants or 2) the final implant can be placed on top of the chest muscle and covered with an acellular skin (skin culled from cadavers then washed until no cells remain). The latter is far easier and less painful, although there is no consensus as to which holds up better (no pun intended). Flaps are muscles taken from either the back (a latissimus flap), tummy, butt or inner thighs. All are complicated and lengthy surgeries and will require longer recoveries. Flaps created from the tummy risk loss of muscle use and flaps from the butt take almost 20 hours of surgery. The latissimus flap is the most common flap surgery for women who don't have enough stomach fat for 2 breasts, but the muscle isn't big enough to create a medium sized breast, so an implant is still needed. The theory is that the implant will tolerate radiation better because it will be placed underneath a larger, healthy muscle (as compared to the chest muscle which isn't very large). But all the risks of implants with radiation still apply.
All 8 plastic surgeons recommended something different for me. Of course. Why should this decision be any easier than any other I've had to make? They all agree though that I am too small for a tummy flap (which I promptly inform Boris of after each appointment) and that the butt/inner thigh flaps are probably far more complicated surgeries than I want. Plus, none of them actually do very many of them so I'd have to go to New Orleans to have the best doctors. I haven't been to New Orleans yet, but am not so interested in going to have multiple surgeries. Interestingly, the recommendations regarding implants versus a latissimus flap are split depending on the sex of the doctor, except for Dr. Slate. He is the only man who recommends the expander/implant surgery. All the others recommend the latissimus flap, the reason being that radiation and implants don't mix well. When an implant is radiated or inserted into radiated tissue, the chances of scar tissue contracting around the implant are incredibly high. The contracture can cause pain, asymmetry (the tissue becomes firmer and the implant rises up and becomes more round) and the breast to feel more firm (um, as if implants aren't firm enough already). I had never felt one before and cried when I did. These surgeons said that the latissimus flap is far more natural looking than an implant alone (although the procedure would still require an implant) and that I don't really need that particular back muscle. They all say that unless I'm a professional athlete, I won't miss it all and all minimize the giant scar the surgery will leave on my back by saying the scar is where my bra line is. But since they all tell me that I won't wear bras anymore, I'm not sure why that matters.
The women surgeons all tell me that in their business, it's just a matter of time before you think you are going to get breast cancer and if they had to have reconstruction, they would want the easiest procedure regardless of aesthetic. They all have families and children and think they need as many body parts as possible. So do I. One surgeon who I loved told me that when she goes to the beach, she doesn't want to worry about giant scars on her back (she wonders why the male plastic surgeons all say that the scars will be hidden by a bra or bikini when bras won't be necessary and most women who get breast cancer are past the bikini wearing age) and instead would like to focus on things normal women worry about, like fat thighs. Plus, while she may not be a professional athlete, she enjoys swimming and tennis with her friends and would be incredibly sad if she lost range of motion to do these things.
When I first learned that I had cancer and would lose both my breasts I wasn't going to meet with any plastic surgeons but Dr. Slate. His reputation is unbelievable and every doctor and woman I know recommended him. But when I learned I needed radiation, I decided I needed to meet with other doctors to see what my options were. Implants are bad enough when they look good but perfectly round, possibly asymmetrical grapefruits on my chest is more than I can handle. Or so I thought. My first few consultations were so depressing. The first doctor was a wealth of information and was very honest about all the risks each procedure entails. He showed me endless photos - good and bad - of his work and I cried as he flipped through the pages. He also brought me into one of the examination rooms to meet a woman who had a latissimus flap procedure over a year ago and just had her nipples put on. Her back scars were gnarly and her nipples were terrifying. They looked 12 feet long. Like little penises on her breasts. Seriously. I didn't want to be rude and start sobbing in front of her so I smiled and thanked her for letting me see her breasts, left the room and became hysterical. The doctor was so nice and explained that the nipples shrink by about 90% and reminded me that fresh surgery is never pretty. But holy fucking shit. He recommended a latissimus flap for me and said that he would place a slightly expanded expander in me at the time of the mastectomy, I would have radiation, then he would do the flap and replace the expander with an implant.
The second doctor couldn't stop talking. Although I told him I was aware of all of my options and only wanted to hear what he would recommend for me, he felt it necessary to give a lecture on the history of breast reconstruction. I was there for hours and wanted to slit my wrists. He discussed all of the trials and tribulations of implants and their history with the FDA. His conclusion: since the FDA says they're safe, they are. I had to tell him that I realize I have few options, but the FDA has a pretty fucked up history when it comes to womens' health, so their blessing means shit to me. He recommended that I have my mastectomies, radiate the chest wall totally flat (what!? - as if a double mastectomy isn't traumatic enough, he wants me to go from a D-cup to totally flat and stay flat for months!?) wait a few months, then do the latissimus flap procedure. Just in case the consultation wasn't annoying enough, on my way out, his receptionist looked at me and asked if it was "okay" for me to be pregnant and have cancer. Instead of saying "no bitch, it's not okay but I am and I do," I tell her that I'm not a doctor, but if she'd like more information from my oncologist, I'm happy to give her the number. I totally get that very few people know you can be pregnant and go through chemo and that if I'm going to be the poster child for pregnant women with cancer I need to be ready to dole out information, but do you have to ask the question in the dumbest way possible?
The third surgeon was brief and to the point. He would do the latissimus flap procedure at the time of my mastectomy. That means I would radiate healthy muscle and tissue which seems crazy to me. I am not a doctor, but why would I do that? What happens if it goes badly? I only have 1 latissimus muscle on each side, so I would have no other options. I vote no.
I decide to meet with Dr. Slate because I can't take all the flap recommendations. Plus, he's who I wanted to use initially and recently I have met several young women who used him even though they were having radiation. They are all really pleased and 2 have completed radiation and the tatas still look fantastic. Dr. Slate is prompt and wonderful. He tells me that he's going to grab my file and then we can talk for as long as we need. He means it because we talk for almost 3 hours. I ask him 98798733 questions which he answers happily and doesn't seem irritated in the least. He explains that he does flap procedures but only when the expander/implant procedure fails. He explains to me that his practice has sadly gotten younger and younger and that as active women with families, why would we remove body parts as a first option? "I know lots of excellent surgeons who recommend flaps when radiation is needed," he says, "but in my opinion they are very cavalier about the recovery and the necessity of the muscles they are removing. If you are unhappy with the implant procedure after radiation, you can always have a flap procedure. But I would make it a last resort, not a first." I agree. He also tells me that of his patients who have radiation, the vast majority aren't unhappy enough with the reconstruction results to change anything. I ask him about the cost of the procedure even though I already know he's a fortune. In total, it will cost me $25,000. He doesn't take insurance. None of the good plastic surgeons do. We hug as I leave and I'm convinced that I'm done with my search. I still have 1 more consultation set up, but my mind is already made up. I'll end up where I started - with Dr. Slate.
Of course I should never think I've made up my mind because something always changes. The next surgeon I meet with is the person who told me about the implant procedure that doesn't use expanders. She's also wonderful and concise and tells me that if she were me, this is what she would do. She would put in final implants at the time of the mastectomies. Part of the implant is covered with the acellular skin and part with the pectoral muscle. Then I would radiate the final implant. This spares me the pain of expanders and multiple surgeries. Sounds good to me. She explains that it's a not procedure routinely performed mostly because it hasn't been the standard of care and because there is a higher chance of infection. I will have to be "watched like a hawk" in the first few weeks after the surgery to make sure the incisions are clean. So now I'm thinking I will use her and do the final implant procedure. Before I leave, I meet with her patient care coordinator who gives me the price of surgery. $8,000. Hmmm..... Is she K-Mart? Her coordinator also tells me that given her experience with Blue Shield (my insurance provider) I will get $750-$1,500 from them. I think that has to be illegal. $750? The parts have to be more than that. I can't imagine any doctor in California doing the procedure for that amount of money. At least I know why no good surgeon takes insurance. It's tragic that women either have to go bankrupt trying to get decent boobs after battling cancer or have a dentist who accepts insurance and does plastic surgery on the side for $750 perform their surgery.
I call Dr. Funk and tell her that I'm confused. I tell her about my most recent consultation and ask her what her thoughts are about the surgeon and the final implant procedure. She tells me she thinks the procedure is a good one, although it's risky with radiation. But, she tells me that she can't let me use the surgeon because her work is inconsistent. I love her for being so honest. She tells me that I should meet with other plastic surgeons who might perform the final implant surgery. She recommends several plastic surgeons who primarily work out of St. John's who have great reputations, but she has no firsthand experience with them. Fuck. One of them is the surgeon who my mom used a million years ago when the tummy flap was first introduced. The quest continues.
So do the mixed opinions. I meet with 3 more plastic surgeons and speak to 2 more on the phone. Only 1 recommends the final implant surgery. The rest recommend expanders/implants. Some believe using the acellular skin is risky and offers little benefit unless my skin/chest muscle is thin while others tell me that it will help create a more natural looking breast, even in the expander/implant procedure. The last surgeon I meet with hasn't performed any reconstructive surgery since his training in medical school. I had spoken with his assistant and made it clear what procedure I was interested in and that I was especially interested in seeing pictures of women who had received the final implant surgery with radiation. I have no idea why she let me make the appointment. I'm totally over this. He did mention that he makes nipples from scar tissue as opposed to skin from the labia which many plastic surgeons use. What!? I almost vomit. My vajajay is painin' just from the thought. No one except Boris is going near the vajajay. Holy shit. I call Dr. Slate and the surgeon who my mom used - the 2 surgeons I'm deciding between and ask how they make nipples. Scar tissue for both. Phew.
I email a past client who is a plastic surgery fellow in Texas. He's been a wealth of information and referrals throughout my cancer experience. I ask him his opinion about my options and surgeons. He sends me an incredibly detailed and helpful email. It ends with the following paragraph:
If you were my patient I'd tell you to stop worrying about good boobies and concentrate on the fact that the most important thing is to rid yourself of the cancer and minimize the chances of recurrence. You can always buy yourself good boobies later. I would tell you to get the mastectomies and not have immediate reconstruction. Go through the radiation, and see what happens. In the interim, wear a prosthesis when going out in public. Then at a later date I'd book you for bilateral latissimus flap reconstruction. You'd pay only for that operation and the minor nipple reconstruction/tattooing to follow. But this is only the opinion of a first year Fellow in plastic surgery. I may change my tune as I gain more experience! I'm only proceeding in terms of the standard of care with regard to what I've seen/read so far, and the data that's been presented at meetings. Most important thing to remember is that the foremost issue is the oncologic one. The reconstruction can always wait. Concentrate on taking care of babies first!
Smart man.
But I can't go boobless for that long and I want to hope that I'll be satisfied with the easiest procedure. Since I know so many women who have used Dr. Slate, I decide to go with him. I have seen his work firsthand. He didn't introduce me to any of the women so I'm not only seeing the patients or pictures that he wants me to see. They are all happy. Even those who have had radiation (although it can take up to 2 years for the side effects of radiation to materialize). Plus, I loved him.
So 8 consultations and way too many hours, weeks, months, later...I arrive at my decision. That was the last big one I had to make. Finally.
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