Knowing I'm BRCA 2 positive brings grief, gratitude and power: Six things I've learned about risk-reducing mastectomy and breast reconstruction

Katie E. Boyle, MPH

​​Almost two weeks ago, I watched the ceiling of the hospital change as nurses wheeled me into the operating room for a hysterectomy and bilateral oophorectomy (removal of uterus, fallopian tubes and ovaries). As I described in my last post, I am a carrier of the BRCA 2 gene mutation and doctors recommend several prophylactic, risk-reducing surgeries. The first one, thankfully, is in the books and went very well.

After posting my story about being BRCA 2 positive and before my abdominal surgery, a neighbor-friend of mine reached out to tell me she is BRCA 1 positive. In fact, she had had the exact same surgery one week prior! I called her and she was helpful with every question imaginable... She said recovery is totally manageable, and all will be well. She was right.

Having healed from two cesarean sections, I was confident in my ability to handle abdominal surgery. Recovery from the c-sections was harder and more painful for me, it turns out. And, unsurprisingly, the presence of a tiny human each time increased the degree of difficulty of recovery....juuuuust a little.

I mean....a girl can do anything after handling the newborn stage, right!? 

In the time leading up to this surgery, my mind zeroed in on very different thoughts and fears. In the days before, my prevailing emotion was fear of not waking up from anesthesia, which was unfounded, according to everyone, clinical or non-clinical, in my life. On the morning of surgery, my mind was occupied by meeting so many providers and answering all their questions. And in the minutes before, gratitude for science and medical advancement triumphed. Because of what we know about the human genome, I am able to have these organs removed that could develop cancerous tumors before they pose a risk to me!

As I saw we were entering the pristine operating room...robotic arms hanging down...TV screens with color bars awaiting real-time images of my insides... I felt gratitude. I closed my eyes. And just like that, it was over. 

I have heard that gratitude is a good concept to cultivate as research supports its association with happiness. So I welcome any naturally occuring gratitude and spread that goodness around to anyone and everyone who deserves to hear they are appreciated. 

Ok, next up:

My Reproductive Organs are Out. Now What?

​Next at bat? A radical, bilateral mastectomy and reconstruction. I have chosen to get reconstruction, but not everyone does. Here are a few great resources to review the current options available: Johns Hopkins, Susan G. Komen and US FDA (FDA link is more technical and from a medical-devices approval standpoint). 
​
My first wave of emotion regarding breast surgery was a sense of loss and regret for not appreciating my breasts, my entire body really, all this time. I haven't appreciated them, or had much confidence attached to them. But once I was told they had to go, surgically, I have realized they are really, really beautiful. 

My upcoming mastectomy and breast reconstruction has me holding grief in one hand and gratitude in the other. (My favorite spin instructor, Robin Arzon, said something like this during a class a long time ago, and mid-catching-my-breath, I cried on the bike. It's so true and so relevant.) But being in this imbalanced state has me feeling like a wave-beaten ship repeatedly trying to right itself. 

Men and women dealing with the prospect of a mastectomy have so many options available to them, should they choose reconstruction. For those who aren't sure, there is a book recommended by a coworker-friend of mine (which I have not read) called Flat and Happy. 

Here are a few things I've learned from my visits and conversations with six different breast and reconstructive surgeons in Connecticut. This account is from my perspective and includes my feelings. Remember to always discuss decisions about your health and treatment with your doctor.

Reconstruction Options and Timeline
Breast reconstruction can begin the same time as the mastectomy surgery, meaning in the same surgery, or in a separate one. After the removal of the breast tissue (mastectomy), reconstructing the breast can be done with saline or silicone implants or tissue transfers (also called "flaps") from another part of the body. 

Some women are eligible for "direct to implant" surgery, meaning implants are placed in immediately after the mastectomy. But use of temporary tissue expanders is also common. Expanders are basically placeholders for the future implant or tissue flap that stay in temporarily (up to a year or longer). The use of tissue expanders gives the surgeon time to ask detailed questions of the patient about what they want to implants to look like in the end.

Tissue flaps can be sourced from many places, including the abdomen, thighs, back or upper butt (that's the scientific term). I'm interested in this latter option and I'm fairly sure (100%) that I have enough tissue to donate from that location. The butt tissue transfer is called an SGAP.

Difficulty of Surgery
Risk-reducing mastectomies for a person with no cancer are easier for the surgeon than mastectomies done to remove a tumor. So if you are having surgery for tumor removal, please know there are more questions to ask your doctor to confirm all of the details in this post.

Necessity of Future Surgeries
​Implants require additional surgeries every 10-15 years, which many women with no problems choose to forego making the timeframe for replacing the implants more like every 20-25 years. Tissue flap surgery does not require additional surgeries. With both methods, women may choose to do revisional surgeries to optimize the results. 

Breast Sensation
Sensation in the breasts is lost with implants....saddening. Sensation with tissue flaps is typically also lost, but can return very slowly over time...also saddening.

​I had not even thought about my nipples or how my nipples would fare through all this when my very helpful surgeon-friend told me some women may be eligible to keep their original nipples and reattach them, called "nipple sparing" surgery. This was another sad surprise: My nipples are quite literally "on the table." Saving the nipples, however, presents a very small risk because tumors can technically grow there. Patients who do not want to save their nipples can opt for the surgeon to reconstruct the nipple with different tissue or get nipple tattoos. Nipple tattoos? Wow. I'm curious.

Surgeon Specialties
Tissue flap transfer requires vascular microsurgery. This leads to the next point...

Cosmetic surgeons specialize in certain things, so a surgeon that does implants may not do tissue transfers and vice versa. Furthermore, a surgeon who does tissue transfers may do mainly/only abdominal tissue transfers, and not butt/SGAP transfers. 

It seems to me so far that surgeons who do the butt/SGAP are rare, at least in Connecticut, and therefore I will likely have to travel if I want to go that route.

The take away here is to ask exactly which surgeries the surgeon does when making the appointment. 

This point may seem obvious, but I found out at my first cosmetic surgeon appointment that she was not the person to talk to about tissue transfers. That set me back a few weeks, which was disappointing. I had waited for that appointment and realized during it that I would need to research another doctor, make another appointment and wait for that appointment too. Everything was disappointing.

Side Bar for Comic Relief
Also disappointing was this surgeon's choice of words when describing how the implant operation goes. She said "cadaver tissue" would be used to secure the implant in place. [PAUSE] I wanted to nastily scream, "What the F--K!?" to her to convey my disbelief. With a horrified look and tears welling up in my eyes, I looked over at Brian. And here is how the conversation went from there:

I turned my gaze back to the surgeon. Holding back my disgust while simultaneously realizing the number of years I have on her, probably at least 10, instead of screaming I said, "What?! Every person who gets breast implants has signed off on walking around with someone else's skin on their body?!"

She replied (I'm paraphrasing), "No. When breast implants are put in for cosmetic surgery without a mastectomy first, they are typically placed under the muscle and do not require the added skin. After a mastectomy, the implants are placed on top of the muscle, requiring cadaver skin to attach to." (Please as always ask your cosmetic surgeon for exact information on this!). So this is yet another example of being taken (ripped?) off guard. I pictured the hairy arm skin of someone's late Uncle Sal being used to build my new Franken-boobs. I said, "Well walking around with the skin of a dead person on me for the rest of my life is, unsurprisingly, triggering. Also, a total deal breaker." No implants for me!?
​
Side Bar to the Side Bar for More Comic Relief
I normally hold very high respect for a doctor, knowing the years and years of study and dedication required to become not only a doctor, but a surgeon! But seriously, doc? "Cadaver skin"? Even my lowly, non-clinical and definitely non-surgically trained self know that calling it "donor skin" or "donor tissue" maaaaay rest a little easier on a patient's ears, huuuh? How about we say "donor tissue" from now on and present this concept something like this: "Amazing medical advancements have allowed us this gift of valuable tissue from donors making these surgeries possible!"

I found out later from my surgeon-friend that the "cadaver skin" she referred to is a collaged mesh fabric that, yes, is donated from an organ donor. Knowing that fact:

How about we say, "collagen mesh material" instead of "cadaver skin" for crying out loud!? 

If collagen mesh is a truthful depiction of this tool used by doctors during surgery, why not say THAT and NOT creep-out the patients?

Ugh.

Surgery Length
I've learned from my surgeon-friend that doing the double mastectomy, harvesting tissue from somewhere on my body and then shaping/placing it to reconstruct two breasts may not even be possible in one day and, if so - much like this sentence - would be a very, very long endeavor. Like 12-16 hours long. That feels risky, so I think I may need to break it up into two different surgeries. 

The Bottom Line

At this point in time, I think I want to do the mastectomy followed by the tissue expander (temporary placeholders) option while I find out where I can do the SGAP tissue transfer surgery. Since finding surgeons for this first step will be easy, I hope to do the surgery in early summer this year, but nothing is scheduled yet. I just don't know if I can handle more weeks of recovery barely doing anything.

I have a great mastectomy surgeon, but I'm still looking for a great, highly-recommended surgeon whose specialties include SGAP in CT, MA or NY.

The bottom line is: There've been many sad surprises and realizations along this learning curve, but the positives are many. I'm healthy. I have access to quality health care and incredibly talented surgeons. I have a very supportive family and community around me. 

​One surgery down, two more to go.