My journey with breast cancer began as a 6 year old little girl that watched her mother battle the disease in May of 1987. My mom didn’t undergo breast reconstruction (I don’t even know if they gave her the option) so she remained flat after a single mastectomy was performed followed by chemotherapy. In May 1991, the disease returned, and it has metastasized to her bone. She ultimately succumbed to the disease 2 ½ year later in December of 1993. I was 13 years old.
I spent a majority of my 30’s undergoing genetic testing, scans, self-breast exams, and biopsies at the recommendation of various physicians including my ob-gyn and a hematologist I had visited due to iron deficiency in my first pregnancy. 2 biopsies had already come back negative. Then on Thursday, November 15th after having undergone a 3rd biopsy on the same breast, I got the call that nobody wants to get. I knew that something was wrong when the secretary wanted to know if I could come in for the results but I told her that I needed to know because my amazing ob/gyn, Dr. Marissa Largoza, had already gotten me squeezed me in to see her breast surgeon of choice, Dr. Alfredo Santillan-Gomez that afternoon for a second opinion. We both felt that 3 biopsies on the same breast was getting to be too stressful, and we were planning on considering a prophylactic surgery regardless of the biopsy results.
The radiologist called me back: I had breast cancer. She informed me that it was DCIS (Ductal Carcinoma in situ,) and she assured me that this was the ideal stage at which to find breast cancer. I don’t remember much after that because I was stoic and likely in shock, which is how I spent the time between diagnosis and surgery.
I was so grateful to already have an appointment scheduled on the same day that I got the bad news with the physician that ended up performing my double mastectomy. Dr. Santillan was the most genuine and caring physician I could’ve encountered on such a dark day. Being the matter-of-fact type of girl that I am, Dr. Santillan started his well-rehearsed spiel about lumpectomy and radiation, and I cut him off immediately and asked if he could just take everything out. I had seen my mom die from this awful disease, and even though genetic testing had been negative, I didn’t want to run the risk of recurrence, especially given that I was 38 years old with children in elementary school at home. He asked about keeping my nipples as this appears to be a big hurdle in providing the best aesthetic outcomes. He informed me that a 5% chance of recurrence was possible if I opted to keep my nipples, so I told him to toss them too. I didn’t feel too confident with my odds at this point given that I was a 38 year old with breast cancer.
While several caring people questioned my extreme decision, I always knew that I would opt for a double mastectomy if I ever got diagnosed with breast cancer. By choosing this route, I was able to forgo the need for radiation, chemotherapy, and hormone suppression therapy.
At this point in my journey, I knew nothing about reconstruction other than Dr. Santillan telling me that reconstruction was now being done at the same time as the mastectomy in my case of DCIS/Stage 0 breast cancer. He handed me a paper with the letters “PRMA” on top, and he had his scheduler get me on the books with the surgeon that he would be cooperating with named Dr. Minas Chrysopoulo for the following Tuesday. He assured me that he would squeeze me in to his schedule as soon as possible.
Later that day, PRMA sent me an email with a link to a 30 minute video that I needed to watch prior to my consult, and I could tell immediately that these surgeons were among the best in their field. I never knew that there were so many choices when it came to breast reconstruction, and this video was just a start. After googling, “PRMA” I was brought to their website where the following quote resonated with me: “PRMA is one of the leading breast reconstruction practices in the world, routinely welcoming out-of-state and international patients.” What great fortune that not only I was in the hands of a remarkable breast surgeon, but he led me to this amazing group of plastic surgeons that have dedicated their careers to helping women restore what breast cancer has taken from them. Who would’ve thought that my now hometown of 14 years, San Antonio, would be home to this highly specialized group as well as my amazing breast surgeon?
I ultimately opted for DIEP Flap reconstruction after initially choosing to go the route of implants since I didn’t think that I had any other options given my thin/athletic frame. I’ve never been a large-chested woman, and this was not the time for me to think about getting a “boob job.” I wanted the safest long-term option, and together with Dr. Chrysopoulo, we decided that it was would be feasible to reconstruct similar sized breasts using my own stomach tissue. I am happy to report that he was able to do just that. The man is an artist, and there is a reason he is considered one of the best.
The time between diagnosis and surgery is a blur. The surgery recoveries (I have had 3 so far) and complications seemed extremely difficult at the time but quoting my sweet breast surgeon, it’s all temporary. This has been my mantra when handling the pain and discomfort that comes from the journey as a breast cancer patient. What isn’t temporary, though, is the breast cancer journey. It’s a journey that doesn’t end even years after being disease-free. There’s a lot of fear and anxiety that goes along with this journey, and I could not have been able to handle it (and continue to handle it) without the help and guidance of my physicians, my family, my close friends, and my counselor.
So my advice to anyone undergoing their own journey as a breast cancer patient is this:
- If you feel anything less than cared for by your physicians, go elsewhere for a second opinion. How your physicians make you feel during this entire process is critical and if you’re questioning their knowledge and compassion, trust your gut.
- Allow people to take care of you and your family. You will be entirely out of commission and you will need the help for as long as your body needs it. These people will see you at your ugliest but these are the people that will become your most trusted confidants. Remember, it’s temporary.
- Some people you thought would be there for you may not show up; and some you never realized would show up for you will do just that. Try not to be too upset about it. How others cope has nothing do with you and everything to do with them.
- People will be checking out your boobs once you’ve told them you had a mastectomy…get used to it. J
- If there are children involved in your journey, enlist all of the help you can to keep them busy and be as open as you feel that you need to be to keep them aware yet sheltered enough. It’s the perfect time to teach them how to take care of others who can’t care for themselves.
- Find yourself a group of like-minded individuals that have been through the same thing. We shouldn’t expect every one we know to get it but it sure is wonderful to have a group of people that do. I’m so thankful to have found Terri and the DIEPC Foundation before I underwent surgery.
While the journey doesn’t end you certainly don’t have to do it alone. If I can help just one person navigate their own journey, whether it be to provide a hot meal or a bag of snacks after surgery or treatments or a shoulder to cry on, none of this will have been in vain. All of our journeys will be different, and I figured that while breast cancer scared the living hell out of me, I have faced one of my biggest fears, and I will be here for anyone that calls on me to help them do the same.
Sending my love and best wishes to all,
