I am someone who needs to study the menus of restaurants online before going out to dinner because I cannot make a decision in the few minutes the waiters give you. I am the most indecisive person about my order still flip flopping my choices right up until the last minute--unless barbecue sauce is involved.
This sort of personality doesn't bode well for someone who is BRCA positive. When I originally decided to participate in this study, I had no idea of the amount of life-changing decisions that I would have to make. All of these decision are things that I have pondered, researched, obsessed over for the last few years.
First of all, I had to decide whether to get the genetic testing done or not. As I said in some previous History posts, I love free things, so this was a quick decision to me. The next biggest decision was the move from surveillance to risk reducing surgery. For my thoughts about this, check out the previous posts called the Road to this Decision. Now having actually made that decision, you'd think things get easier. Nope. Not at all. Here is a quick run down of all the options that I've had to figure out in the last few months:
1. Skin sparing--Because I am choosing to do this surgery before I have cancer, I have the option of saving my skin. Many breast cancer patients have to go through radical mastectomies removing all breast tissue and skin. This leaves significant scarring and making the reconstruction process much trickier. I can use my own skin; however, it comes with a risk. They cannot remove 100% of the breast tissue with this method and there is still a very small chance that cancer could in the skin that remains.
2. Nipple sparing--Just like saving skin, I have the option of saving my nipples. They would be removed during surgery, scraped clean of as much breast tissue as possible, then tested during the operation to see if there is any sign of cancer growth. If the pathology comes back clean, they can be grafted back onto the skin. This has a similar risk to saving skin because of the small amount of tissue that will still remain. It also comes with the loss of all feeling, function, and change in shape. There are alternatives if you chose not to spare nipples such as nipple reconstruction by a plastic surgeon grafting skin from another area to shape a new one or 3-D tattooing to create the look of one.
3. Sentinel Node Biopsy--During surgery, all the breast tissue will be examined to check for any signs of cancer growth. One additional way to check for cancer growth is through sentinel node biopsy. Several hours before surgery a radioactive tracer is injected into the breast. The surgeon can follow this to the sentinel node(s). These 1-3 nodes will be biopsied (removed) to test of cancerous cells. Some surgeons like to do this for BRCA patients because once the breast tissue is removed, there would be no way to ever find just the sentinel nodes again. If cancerous cells were found either during the first surgery or later down the road, a more invasive surgery called axillary dissection would have to be performed. There is a small risk (7%) of developing lymphodema, a permanent condition in which your lymphatic system doesn't drain correctly after the biopsy. This risk is far greater with auxiliary dissection (30%). As someone with no cancer right now, do I take the 7% risk now to save myself a 23% risk later? Isn't everything I'm doing through this surgery making sure that I will never be part of the people who have the 30% risk? If only there was some bigger perk to this biopsy, like maybe a permanent stop to underarm hair growth where the lymph nodes were removed. Then I'd be all over this one.
4. Reconstruction method with tissue transfer--If you choose to reconstruct your breasts, you pretty much have two options: implants or tissue transfer. But within each of these there are numerous choices as well.
My original thought was to go for tissue transfer. Skilled surgeons can take fatty tissue from a donor site and reattach it to create breast mounds. The possibilities include using fat from the abdominal area for a TRAM flap or DIEP. Most surgeons around here are able to do a TRAM which is the simpler of the two. With this surgery, they take a your belly fat along with 1 set of you "six pack" abdominal muscles. It would be basically like getting a tummy tuck while getting new breasts...sign me up. The drawbacks however are that you are loosing your part of your abdominal muscles for the rest of your life, something I'm not sure if I could deal with.
The DIEP surgery is a newer version of the TRAM surgery where they use your belly fat still, but leave your muscle untouched. They are able to leave the muscle behind because they perform microsurgery connecting the small veins and arteries to provide the blood supply to this tissue rather than relying on the muscle for the blood supply as with the TRAM. The drawbacks to this surgery are that you are not only having breast surgery, but major abdominal surgery as well increasing pain, recovery time, and risks. It is also questionable whether one would be able to carry a baby to full term after this sort of an abdominal surgery. I don't totally understand this risk, what's really going to happen? Is the baby just going to fall out of my abdomen? I am 95% positive we are done having children, but still I am not ready to totally close that door yet. It's enough that I've just made this decision to have the surgery, don't ask me to make another big one.
There are other tissue transfer options such as the gluteal flap, hip flap, or lat flap (using back fat and muscle). Good luck finding a surgeon in small town Wisconsin to do any of these reconstruction options. I'd have to travel to Milwaukee or Madison for any of these or the DIEP method or could even travel to New York or New Orleans for the top surgeons and breast reconstruction centers in the country. These centers really do cater to women traveling long distances for their surgeries providing all of the normal pre-op care over the phone or skype. Doing this sort of traveling would mean being away from my family and their support during the surgeries. It astronomically increase the cost because of insurance coverage issues and travel expenses. The plastic surgeons that I met with around here said that I wouldn't have enough fat for these transfers anyway. I think they were just trying to flatter me.
5. Reconstruction method with implants--If tissue transfer is out, than implant is your next option. To rebuild the breasts, plastic surgeons will insert an implant behind the chest muscle. This makes it so that there is a biological barrier between the implant and the small amount of skin and left over tissue that could possibly grow cancerous cells. This is normally done with the use of an expander. During the original surgery they put in a small saline implant behind the muscle. Every week and a half, the plastic surgeon will fill the implant with addition saline to slowly stretch and expand the area behind the muscle and build more of a normal looking breast. Eventually this expander will be filled completely (usually a little overfilled) and a second surgery will be done to replace the expander with a permanent implant.
Another newer idea, is to do this all in one step rather than through the use of expansion. The plastic surgeon will cut the chest muscle and insert the full size implant right away during the same surgery in which the breast tissue is removed. They will use alloderm, which is a tissue sample from a cadaver with all of the cells removed, to patch the area where the muscle was cut and needs extra support. There are higher risks for infection with this method and it really will not be a truly one step procedure. This original surgery will be followed up by a revision surgery after things settle a bit to perfect the final result.
Now with either method, you also need to decide on type of implant: saline or silicone. The saline option is widely regarded as safer, but doesn't feel or look as natural. The silicone options now come in a cohesive gel form that doesn't have the leaking problems that it had in the past. The cohesive gel is kind of like a gummy bear consistency. If they leak or rupture, they hold their shape, but is still controversial as they haven't been studied over longer time periods. With either, they likely will not last your whole lifetime and will need to be replaced at some point. There is also a risk known as capsular contraction, where your body rejects the implant squeezing it out of shape or in which scar tissue deforms the implant.
There are just so many decisions. All of these listed, plus little things like deciding where, when, with who the surgery will take place. As soon as you make one, three more pop up.