Hi, I am Adriana a young breast cancer survivor. I was diagnosed with TRIPLE NEGATIVE BREAST CANCER and with the genetic mutations BRCA1 & PMS2 (lynch syndrome), in March 2020.
I found my own lump by preforming a self-breast exam in the shower at age 32. I was a first time mom to a then almost 2-year-old little boy. Navigation through the healthcare world/system is a challenge of its own. However, dealing with a pandemic and my diagnosis left me to “fend for myself”. I began to google organizations that could help me understand this life. I called a few and the response was “I am sorry but we are closed due to covid”. Later on in my journey I started to connect with people in the same age group and diagnosis, how I wish I would have had all the resources during treatment. Honestly, it was too late for me, I did not qualify for any resources due to not being in active treatment.
As I began to schedule my appointments, they were being postponed due to the medical staff being exposed to Covid. Once I had my appointments, I found myself receiving my breast cancer diagnosis via a call. The front office answered and just read me my pathology report as if was a regular blood work. I heard the words “you tested positive for cancer”, “it is malignant”. I froze, I sat in my car on my morning break from work, I was by myself and no one to turn to. I went back into work as if nothing, but then it sank in, I went into my managers office and I lost it. However, I continued to work, I was in shock. As I drove home alone, all I could think of is what in the world do I do? I have never experienced any health issue; I had only had one hospital stay and that is when I gave birth to my kiddo. I was thrown into this cancer world that I knew nothing about. I only knew this, I had lost a lot of family to metastatic breast, ovarian, brain, colon, and stomach cancer. Ages ranged from 24 to 65, they all passed due to the cancer taking over their bodies. In my family we never talked about it, I just saw my aunts, uncles, and cousin battle in silence. I wasn’t allowed to ask about their battles, why? My family themselves did not understand it.
I found myself lost, confused, not knowing what to do or who to turn to. I was now facing my cancer diagnosis literally all alone because no one could go to my appointments with me. I was not offered a nurse navigator, a case worker, a social worker. I found an oncologist at my local cancer center and made an appointment. I walked into the room alone, the oncologist sat down with a clip board and a blank sheet. He said “you have triple negative breast cancer, one of the worst types and very aggressive, your tumor is growing fast and here is your treatment plan”. I seriously just said OK, I did not know what to ask, all I remember saying is I want to have one more child. I asked if that was possible and he said likely no because there is a 50 % chance I will go into menopause and not come out of it, therefore I could not have kids. He also stated if I did get my period back, I would have to wait 7 to 8 years post treatment before I should consider having another kiddo. He said that was a risk because I would be older and so much more could happen in between. I cried and I felt as if I had no other choice, again I did not do any research because I just trusted what my doctors told me, I assumed “they” knew what they were telling me and I unfortunately trusted their advice.
As I started my 14 rounds of intense chemotherapy, I shut down completely as a person. I found myself all alone, my family did their best, but no one knew what to do “with me”. Covid just started and everyone stayed home. No one wanted to go out, let alone visit me. I just found myself being dropped of to do blood work, and chemo as if I were a kid being dropped of at school. I would see my husband or family drive off as I broke down crying because, I hated going into the cancer center. I battled this journey alone with no outlet. I felt confined to my house and the only person that brought me comfort was my husband. During my first treatments, I was home alone, I felt so lost, confused, and disoriented. It came to a point I could not be left alone, my husband and I decided it was time to ask for help. My husband’s side of the family helped with taking care of our little boy, as my mother and aunt came to my house during the week to just be with me. As a family we did our best to get through my treatment, I was in a dark place all the time. Once treatment was done I was faced with having to make decisions on surgeries.
Having the genetic mutation BRCA1, per my doctor meant I needed to have a double mastectomy and a total hysterectomy. I met with the breast surgeon that I was assigned to, I was in treatment when I met with him. I remember the appointment, all he said was since you are BRCA we will do a bilateral mastectomy and wait for your pathology report to see if more treatment is needed. I wish I would have asked more questions, but I failed myself and did not. All he offered me was implant reconstruction, I asked if I qualified for Diep flap because that is the surgery I knew about and I wanted. I did not want any foreign object in my body, such as implants. This was the only thing I researched in my cancer journey early on. I knew from the beginning I wanted Diep Flap breast reconstruction. As I had a short conversation with the surgeon, I remember he said, “I don’t do nipple sparing surgery so when I do your bilateral we will not spare your nipples”. Finished chemotherapy in December 2020. January 5th 2021, I entered the hospital to have my bilateral mastectomy with no reconstructing. I was not offered the option to have immediate reconstruction. I was told we will wait for a pathology report and go from there, I just agreed because I thought that is how it was done. Pathology came back, I was told I had a complete response to chemo and declared no evidence of disease. I was excited because I wanted breast reconstruction as soon as possible. Once I was NED, I was referred to an OBGYN, I met with him and he asked if I wanted more children and I said “yes” just one more. He asked if I had done any egg preservation, I said no because my first oncologist presented to me the information as if it was going to be impossible for me to have another child, and/or I had to wait until I was in my 40s to try to conceive. I advised him I did call a place for egg preservation but the appointments early on in my diagnosis were many months out due to covid. How I wish I could have done a better job at educating myself. I felt rushed to have my total hysterectomy, I had it 4 months post mastectomy. I did not, nor did I ask much about the side effects of the hysterectomy. All I knew was my hysterectomy meant no more kids, and I will be in menopause. That all, again, I just trusted my doctors. I just did what they said they were going to do. After my total hysterectomy in May 2021, menopause literally has taken over my life since then. Obtaining my Diep flap became a huge obstacle for me.
My breast reconstruction has been a journey of its own, its has been hard to find a surgeon that is in a network that does amazing work. There are not a lot of experienced surgeons in my opinion for Diep flap breast reconstruction. It is limited and the accessibility along with the cost has been an obstacle for me. I had my surgery scheduled but my surgeon suddenly said he could not do the surgery due to my BMI being “too high”. I went into a dark hold, my weight has never really been an issue in my life, now after my cancer diagnosis it is an issue. I gained all this weight because of cancer, and now I cannot have my surgery. I spiraled into a dark place fast. I started to do more research, I started to consult other surgeons for my surgery. However, I found out through consults, with in network, in the state of California surgeons had an issue with my BMI. I found an out of network surgeon that is experienced, but due to the heavy financial impact my cancer diagnosis left me with, the put of network cost were not possible for me. I went as far to find an in-network surgeon but was out of state, I could have had my surgery and have it covered in network but I did not have anyone that could go with me and help take care of me post-surgery. Since my mastectomy I do not go into dressing rooms, I don’t like to look at myself, I have zero confidence, and no self-esteem. I just do a great job of hiding it, I deal with it alone because there is nothing anyone could really do about it or help me. I now have an appointment soon with a different surgeon, I am going to give it another try, and I just take it one day at a time. I hope to have my bilateral Diep flap breast reconstruction sometime this year, 2024.
I have learned so much since my diagnosis, I like to call it the case of “What should not happen to a cancer patient”. Meaning, I was medically misguided, I was not provided with all my options early on. Doctors seriously pressured me and I just felt rushed. I now have made it my mission to educate and inform myself to help others navigate through their healthcare journeys.
I found many people being diagnosed at a young age. Young people and mothers, I now understand what it means to have a cancer diagnosis at a young age, I understand my type of cancer, my genetic mutations and most of all I now know all my options and how to navigate through the healthcare world. I have lost many young friends, too many, they leave young children behind, I see their kiddos growing up. I value my life, I don’t take anything for granted, I thank god I am alive every day. I dedicate all of my advocacy work to all of my friends that I have lost to cancer and to those that are currently battling cancer now.
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