Empowering Breast Cancer Patients With Previsualization Tools.

06/12/2015 03:12 pm ET | Updated Jun 11, 2016

Whenever I hear about a new Breast Cancer diagnosis, I wince. I know all too well about the challenges ahead as I've been through every assault.

Someone said to me "look on the bright side, at least you get free plastic surgery!" 

Most people don't delineate the two. Reconstructive surgery is much more emotional and challenging as it has everything to do with rebuilding yourself from the inside out. 

In addition to focusing on the cure, I was very concerned about what my body was going to look like afterwards. I'm a single parent and worried the results would leave me with a negative body image.

I took a poll from a few breast cancer forums. "How many went through breast reconstruction not knowing what you were going to look like after surgery?" 98% said that they had no idea or wished they had known more. 2% said they knew and a few said that they didn't care. 

I remember my surprise during preliminary discussions about my breast reconstruction. I only saw pictures of other peoples' results and maybe one or two pencil diagrams showing where the scars would be. That's all I had to go by to connect the dots of what my body was going to look like. I'm from the art world, a creative professional who envisions results for clients. It was unsettling to walk down the medical path without any visual references about what I could expect for my own body.

After a fourteen hour surgery, it took me a week before I could look down and assess the damage. I started to photo-document my body in effort to chart my transformation. I was very skilled with photoshop, the image-editing software. Confronting my scars close-up was sobering but once I got past the initial blow, I switched into problem solving mode. I knew what needed to be done. I started drawing onto the images of my body and creating projections of what I thought I would look like at the end of a 2 year journey. I still had a year of surgeries ahead of me so I addressed all of my concerns and even found new ones.

After completing the projections, I realized what I had done. I had given myself what I've been wanting all along from the medical world, information about what I was going to look like after surgery. If I had something like this at the beginning, it would have given me greater peace of mind.

I was excited to share this with my reconstructive surgeon. I asked if my projections were within scope of what I understood of his surgical direction and he promptly said yes and mentioned that it was actually very helpful for him as well. It worked both ways. I was helping myself cope and I was helping my surgeon to visually understand my expectations.

The final surgery involved nipple reconstruction. In the meeting with my surgeon we discussed the size for my new nipples. He motioned with his index finger and thumb "How about 3mm?" 

When I got home I pulled out a metric ruler. I found some clay from my daughter's art supplies and started to sculpt a 3mm nipple. I held it up to my nipple-less breast and looked into the mirror. It didn't look right nor did it feel right. I started making more clay nipples in varying sizes, holding them up to my breast until I found the size that felt closest to my original nipples. 9mm felt right.

I found a glittery stationary box in my daughter's room and arranged the nipples neatly in the box. I brought them with me to the surgery. When I opened the box I caught a few reactions from the surrounding medical staff. Their jaws dropped. I held up the size that I wanted and showed my surgeon. "I think this is more me." He smiled and nodded in approval.

Box of nipples

Overall, I was very happy with my results. Going into surgery knowing what I could expect to look like after was game-changing. As a patient of Breast Cancer, it gave me a sense of control where there is very little control. 

The entire experience made me passionate about improving how women cope as they go through Breast Cancer. I've seen far too many poorly reconstructed breasts in breast cancer forums where women can only speak with despair that they didn't get what they were expecting. Being happy with the results of surgery is not an elective.

Today we have the technology to ensure that every woman undergoing reconstruction takes a shared visual journey with her surgeon that reflects what she wants as well as what her surgeon has in mind for her. It's my goal that pre-visualizing surgical results becomes part of a patient-centered protocol for reconstructive patients. I'm currently developing a Breast Cancer Previsualization app in effort to humanize how women go through Breast Cancer.

So far, the physicians I have demonstrated it to have been very supportive. But there's too much bureaucracy to overcome within the medical infrastructure itself. It's not an insurmountable task, it's actually within the power of humanity to offer something like this in the world of Breast Cancer. So now I am now working complimentary to the medical industry. I currently have 25 patients in my pipeline all over the world who are going to experience the shared journey that I did.

Now there's a choice. You can either go on a trip with a map or without one.