Weird title, right?
I just shortened a huge mouthful of words into a tiny list of characters. They seem so innocuous, almost cute. So, what do they stand for? That’d be: Skin Sparing Prophylactic Bilateral Mastectomy with Transverse Upper Gracilis (free flap).
That sounds… worse. And still probably makes very little sense, especially if your family isn’t utterly bathed in aggressive breast cancer.
One more time.
It is when a person has all removable breast tissue removed from both breasts (bilateral mastectomy), but some of the skin is saved (skin sparing) for appearance reasons. The nipples, however, aren’t saved (that’d be indicated, if so) and to replace the appearance and feel of breasts, the transverse upper gracilis muscle (and surrounding blood flow and tissue) is removed from the upper inner thigh to be reattached into the empty skin sacs left behind, after the breast tissue removal. And all of this was done without a cancer diagnosis (prophylactic) as a way to prevent a future breast cancer diagnosis, generally in someone with exceptionally high odds – me.
Different doctors tell me different odds, and these odds change based on various things. I’m going to get into all of that. But first, let me tell you why I’m saying all of this. It’s because I can’t FIND all of this on the internet! I’ve searched for personal accounts, patient perspectives, and all I can find are medical studies and doctor perspectives. Lots of jargon, debate on the likelihood of the transplant taking, or the odds of this working better than a DIEP FLAP (another cute bunch of letters), but nothing about what the patient has to endure, or plan for, or lose.
So while I have zero medical experience other than my side of hospital rooms and doctors’ offices, I’ve been in plenty of both, and I’m now halfway through the SSPDM w/TUG free flap surgery process. And it is a process. There will be many graphic pictures, and I will update as I continue through the process, in the hopes that people can find some insight into all of this, and maybe help choose their own path, if need be. So fee free to share, comment, and post your own experiences! And let’s go!
I will probably tell this out of order, so I’ll try to include headers from this point out to maybe keep it somewhat organized.
Cancer risk doesn’t work the way people generally think it does when they first hear about it, especially breast cancer. Everyone has certain lifetime risk that is based on a generic number for the entire population, and then increased based on genetic, familial, and habitual factors. Also, different doctors measure it differently. So one doctor may say I have a 50% chance of breast cancer, while another may say I have an 85% chance. Others may include other tidbits like 45% chance before 50 years old, but 90% chance that I’ll get it sometime in my lifetime. You’ll have to decide which of those numbers matter the most to you, if any of them. After a while, I came to think of my risk as, “I’m way more likely to get breast cancer than practically anything else in life” and quit trying to recalculate. But for this conversation, this is how my risk could be calculated:
~Base population risk: 12.4%, roughly (these are per the National Cancer Institute).
~Additional risk that I’ll be diagnosed in the next 10 years based on my age: 0.44%.
~Additional risk due to being overweight “higher” (isn’t that helpful?)
~Additional risk due to being white “diagnosed more often” (again, super helpful.)
~Technically, since I do drink alcohol sometimes, that makes my risk higher, though any helpful breakdown of how much alcohol to how much risk isn’t indicated.
~Additional risk due to my mother and sisters being diagnosed, especially since two of those were before age 50.
~Additional risk due to dense breast tissue. I’ve produced a LOT of milk in my day, and all of those milk ducts, along with other connective tissue, make it hard to see things clearly in a mammogram. Funny, since the cancer tends to be in those same milk ducts – that’s where they get the name Ductal Carcinoma in Situ (DCIS).
Things that don’t raise my risk – genetics, so far. Even though I have my mom, both of her sisters, and two of my sisters (so far) with positive diagnoses – that’s ALL of the females in my family, from my mom’s generation down, over the age of 39 – they can’t find a genetic marker. I do not have the mutation for the BRCA1 or 2 genes. Additionally, my mom was just tested in the summer of 2016, and she does not have markers for any of the 16 currently known and testable genes. She was the first one of everyone to find the cancer (she’s the oldest of her sisters) and she has no markers. According to both her geneticist and mine, there’s no reason to test the rest of us with the same methods, because whatever she had, we have, and whatever it is, they couldn’t find it in her genes, so they won’t likely find it in ours.
There are several other risk factors that don’t apply to me, such as medications I’ve never taken, a sedentary lifestyle that I don’t lead, but no real point to list them all. If you’re interested in seeing how many apply to you, just click that National Cancer Institute link above.
So, back to me. All of these risk, all of these relatives with cancer, no gene mutations. Given the points above, my Oncologist said I had upwards of an 80% chance of being diagnosed with the same cancer as my family. He didn’t specify an age, but since both of my sisters got it around the 39 year mark, I’d say that’s a likely time frame for me. But something to keep in mind while you calculate all of this – my mom would have only had the 12.4% risk plus her own additional bits listed above, because, before her, it hadn’t been found in our family. I believe hers was diagnosed around 52. Her sisters’ risk went up when she was diagnosed, as did her daughters’ risk, but there’s nothing different, genetically, to change that risk – just the order in which each person reached roughly the same age brackets. That means until the first few people in a family start getting cancer, they are all told the 12.4%, even if it will turn out later to be 85%.
MY DECISION PATH
When both of my older sisters were diagnosed with cancer, I started trying to decide what I would do . This was about 5 years ago, and I bounced between thinking I’d have them take everything and get implants, like one sister did, to thinking I’d get a lumpectomy if necessary, like my mom did, to thinking I’d just wait and see and plan later. I’m terribly bad at planning later. It always becomes now.
After a few of years wondering and planning and deciding what I would do when this near-certainty hit me, I became very frustrated with insurance. Why on EARTH would they want to cover chemo, radiation, prosthetics, and the surgery, when they could just cover the surgery? Just because I didn’t have the BRCA mutations, they surely had to see the risk, right? So I called them, intent on arguing. This was in 2014. They said, “yes, yes we agree that your risk is enormous! In your case, the surgery would be covered.” I was shocked. This was BCBS, and they’d always been good about covering things, but I’d heard left and right that it was just never covered without the genetic markers.
I started researching surgeries, and even called BCBS back twice to confirm with other representatives. They all agreed that the surgery would be covered, I only needed to have a surgeon recommend it in writing. So I started talking to plastic surgeons and my PCP, unsure who should be recommending to insurance. I wasn’t sure about what kind of surgery I wanted, and I didn’t know enough of the lingo to even search very well. I did think that I would rather have my own tissue than implants, as I knew I had plenty and it would look, feel, and age naturally, with the rest of my body. Yet, when I looked at before/after pictures, I was generally drawn to the implants. To help some folks out with the search problem, here’s a shortcut to the free flap surgery options:
Free Flap Breast Reconstruction
As a warning, that list includes all kinds of surgeries, not just the most recommended, most successful, or least painful. I’m sure it took a huge amount of trial and error to do these types of surgeries!
Also, here are some quick visuals of the common types of flap surgeries:
(I found that graphic on Dr. Sheina Macadam’s blog. I have no idea about her quality as a doctor, but she has some efficient images!)
MY SPECIFIC TYPE OF SURGERY – TUG FLAP
While searching, I determined that I’d prefer for the tissue to come from my legs. I had plenty of tissue there, and I’d had a major abdominoplasty a few years prior that kept me from doing any of the stomach flap surgeries. The stomach flaps seem to be the most common for the flap surgeries, and one of my sisters had a wildly successful experience with it, even with advanced, aggressive breast cancer and several complications. But I was not a candidate. Though it is possible to use the outer thigh as a source, I read and was told by my plastic surgeon that there is not adequate blood flow in this tissue, on top of the scars being incredibly visible. There are also surgeries that use your butt, but the healing time, failure rate, and general texture and density of my gluteal tissue dissuaded me. It’s too firm! I want these things to be easy to shape into boobs, not fighting to get back to their butt shape! So I went with inner thigh. I had plenty of tissue, the scars typically fall in the crease of your leg, and the available cut lent itself easily to the shape of a breast. Plus! That squishy, soft flesh was very similar to my own original breast tissue, with out all of the potentially murderous parts.
(Found at Sutter Health CPMC)
So, how the TUG works – a flap of skin is taken from the inner thigh. People tend to call it an oval, but it’s more like half of an oval, or an eye, with points at each end. (The picture above is definitely the least disgusting depiction I’ve seen.) That tissue is curled on itself to create a cone, and that cone is generally shoved in some remaining skin after a mastectomy is performed. The pointy part of the cone can be slightly modified and tattooed later as very conveniently placed nipples. When they take the tissue, they also take a muscle called the Transverse Upper Gracilis.
(Found on this Adductor Stretches page.)
Just to make this easier to understand, here are the adductor muscles. The adductor muscles are what you use to pull your legs together. Weird that it takes so many, right? I tend to think of the top of my thigh as one giant muscle, and I didn’t realize at all that there were so many muscles just to close your legs! So, in the image above, you can see that the Gracilis is the smallest of the bunch. (Apparently, it’s Latin for slender or meager, thanks Wikipedia!) While it’s the smallest muscle, it has some pretty major blood vessels running through it, branching off from the femoral artery. So, in this procedure, the muscle, its blood flow, and the surrounding skin and fatty tissue is taken from the top of the thigh to become a breast. Looking back at the first picture, the opening left in the skin is lifted, providing a lifting effect on the thigh, and the scar is neatly tucked into the crease of the leg.
The blood vessels have to be attached using microsurgery. This is very tedious, and the transplant can be lost if the vessels don’t “take”. If that happens, the dying tissue has to be removed, and either something else can be done, or the breast can just become flat skin. I was told by my plastic surgeon that it would be one thigh for one breast, and that I shouldn’t expect more than a B cup. Internet research backs that up. Starting with a G cup, that’s pretty shocking to contemplate! Something to keep in mind with all of this anatomy stuff – in the end, both breasts are removed and a large portion of each thigh is removed. This is a major process. Your abs still work, and you can still put vertical weight on your legs, but scooting across the bed, or pushing up with your arms can’t be done without some serious pain at first. Thankfully, my plastic surgeon insisted on breaking the surgery into two surgeries. Her preference was based on her ability to sit for long periods in the awkward position needed to remove the thigh tissue, but had she done everything at once, neither of my legs would have been very useful immediately after surgery.
Just go to all of them. Seriously. Get online and look at every before/after picture you can find, read every review, ask everyone in every forum you can find, when you find your plastic surgeon. There are major names that pop up constantly, but no one I found online had heard of my plastic surgeon, yet once i started digging deeper, and talking to medical staff, I was told repeatedly that she is the best in the state. Which is good, because she is the only plastic surgeon in the state who performs this specific type of flap surgery. For my oncologist, I got lucky on the first try. I went to the first oncologist with the earliest appointment time. Meanwhile I googled him and found out that he is also the top in his field. The oncologist removes the tissue, watching for any signs of cancer, and sends the tissue off to be tested regardless of diagnosis. The plastic surgeon rebuilds the breasts. A good gynecologist is also incredibly helpful, but more on that later.
After you’ve found some potential doctors, as them a million questions, ask to see their before/after books in the office, and try to gauge their willingness to do what you want. You need someone fully on your side, not someone who will argue with you every step of the way. Many women have encountered doctors who deny that certain illnesses exist, or tell them that they should want a different procedure. Much of this isn’t medically founded, but just based on that surgeon’s preferences. Don’t buy in to it, and look elsewhere until you’re happy with your doctors!
OTHER SURGERIES TO CONSIDER
As if a bilateral mastectomy isn’t enough, it’s not the only suggested surgery, depending on your family history. In my case, my family’s cancer is very responsive to estrogen. This means that estrogen feeds it. Estrogen. I’m 36. Do you know how much estrogen is being pumped out of a 36-year-old’s ovaries?! A lot. This is prime last-ditch-clock’s-ticking-make-a-baby signaling coming from the reproductive organs! So, even with as much as the breast tissue removed as humanly possible, any that’s left is still susceptible to cancer, and can be fed heartily by that estrogen. While the mastectomy drops my risk from ~85% to <5%, a total hysterectomy takes it from ~85% to ~40%. Cuts it in half right off the bat. Another important note is that if you’re going to have a hysterectomy, it’s recommended that you have it before the mastectomy. It reduces the risk of future infections and complications, I’m told. By both my oncologist and gynecologist. Before surgery, 85%, after hysterectomy, 40%, after mastectomy, <5%.
This blog has become ridiculously long, and I haven’t even started showing you all my gory pictures yet! Ridiculous! I’ll make a separate post for my specific surgeries and experiences, But before I end this, I want to bring up one other factoid – Milk lines.
(Found on Wikipedia)
My oncologist pointed out to me that all mammals have milk lines – lines that, in other mammals develop in to more nipples and breast tissue for feeding multiple young. How did I not know this was a thing? Why have I never seen it in breast cancer research? Anyway, none of these surgeries do anything about milk lines, because milk lines are tiny, if present, bits of breast tissue mixed in with everything else. So, it’s totally possible to get breast cancer on your abdomen, in theory, though it’s not something that generally happens. My oncologist told me an anecdotal story about it happening to a woman after birth control was incorrectly implanted along her milk line, and how she won in court, but I haven’t really researched it. Bluh. Milk lines.
Stay tuned for part 2…