What was your journey to diagnosis? Initial symptoms? 

I actually didn’t have initial symptoms. My journey to diagnosis is actually tied to my mom.

My mother is a two-time breast cancer thriver. Her first battle with it was in the 90s — I was 5 when she was diagnosed — when she was 38. I was informed that as her daughter, I should start getting mammograms, ten years prior to when my mother was first diagnosed. So I had my first mammogram in 2015 when I was 28. Everything came back normal and they said I was so young that I wouldn’t need to get checked every year.

I asked about genetic testing then and they told me it would be more useful if my mom had it done.

Then in 2018, my mom was diagnosed again (27 years later) with breast cancer. This time showing up in her other breast — she had a mastectomy from the first one. Luckily, they caught it early enough where she could get away with a mastectomy with no other treatment, and her team of doctors finally did genetic testing.

As a result, I asked my primary care physician during my physical if I could do genetic testing and thankfully, she agreed.

I did genetic testing in Dec. 2018 and went to see my PCP in January 2019 to go over my results. I tested negative for both BRCA mutations but based on the Tyer-Cuzicks Risk Assessment for Breast Cancer (based on my family history with my mom and personal medical info) my results put me in the higher risk range, and recommended being screened twice a year with a mammogram and breast MRI with contrast, alternating every six months.

I’m so thankful that after reviewing my results my PCP decided to go with ordering a breast MRI with contrast, which I had scheduled on Feb. 12, 2019.

I got a call the following day telling me they found something! I was devastated because we just went through everything with my mom. The radiologist wanted me to come back for a mammogram/ultrasound and a biopsy. I went back two days later and they couldn’t find anything to biopsy which meant I had to go back in for a breast MRI-led biopsy.

March 5, I got the call from the breast imaging radiologist that confirmed it was cancer and my next steps were to meet with the care team of doctors I’d be working with to treat it.

A week later, I met with my oncologist, breast surgeon and radiation oncologist. My oncologist at the time said, “Who made the decision for you to get the MRI?” I told him it was my PCP and he said, “You need to thank her because the fact that this was only detected on the MRI, if you had continued on just doing mammograms, who knows how aggressive it would have been by the time it showed up on a mammogram or ultrasound.”

Also, my mother and I both tested negative for BRCA mutations, but the fact that I was diagnosed at 33, and my mom at 35, means there’s likely some genetic link that hasn’t been found on these panels of tests.

At the time, this was like an out of body experience where I knew everyone there, including my parents and my husband, were discussing my diagnosis and treatment plan. It didn’t hit me until I got home and was in the shower, that we were talking about me and my life was going to drastically change. At that point, I broke down and cried.

What was your treatment plan?

I was diagnosed with invasive ductal carcinoma (IDC), stage IIB, triple-negative breast cancer in my right breast, and the plan was to do neo-adjuvant chemo, surgery, then radiation. I didn’t go for a second opinion because I didn’t want to waste time getting the ball rolling.

My team of doctors were from the same offices/hospital that my mom dealt with in 2018, so I felt comfortable with them.

Because I don’t have any kids and I still wanted that to be an option in the future, my husband and I did fertility preservation. With what was retrieved, we preserved half eggs and half embryos in the month of April prior to the start of chemo.

I also don’t have visible veins, and had a procedure for a port placement (which I still have at the moment) to assist with chemo transfusion and blood draws, which was also in April.

Chemo was four rounds of dose-dense Adriamycin & Cytoxan (every other week for eight weeks, with a Nuelasta shot the day after), followed by twelve weeks of weekly Taxol with Carboplatin every three weeks (so some weeks I would get Taxol followed by Carbo).

I started chemo May 1, 2019 and finished September 11, 2019. When I completed my MRI post chemo and found that the tumor had significantly shrunk so I had a response, but not a complete response. Based on the large volume of my breasts and the placement of my tumor, I opted for a lumpectomy with reconstruction on the right breast and a reduction in my left breast to match in mid October.

My breast surgeon was able to remove the tumor with clear margins, I had three lymph nodes removed (all negative) but my pathology came back with active cancer cells that showed a small percentage of Progesterone (and I was like WTF?!?!?) which meant additional treatment and talks of additional hormonal therapy. From December 2019 to January 2020, I did 20 rounds of radiation therapy (15 rounds of the whole breast and 5 rounds of a targeted boost in the area where my tumor once laid). Even with the partial PR +, I went and had a second opinion which recommended, in addition to hormonal therapy, doing six months (eight cycles) of Xeloda oral chemotherapy (standard for triple negative peeps). So I’m currently 6/8 cycles deep in taking Xeloda, and then figuring out what’ll be next to address the PR part.

How did your diagnosis change your life?

Dang, in what ways hasn’t my life changed since diagnosis. LOL. I mean with standard things breast cancer patients go through, these are the things I can say I’ve done before the age of 35 (diagnosed at 33 and I’m currently 34. I’ve experienced: fertility preservation, losing my hair on my head, brows, nose, which no one told me and when that was happening I couldn’t notice when snot was dripping out of my nose, looking puffed up being on steroids while on IV chemo, plastic surgery in the form of breast reconstruction/reduction, experiencing hot flashes and feeling dry down there with no drive to be intimate with my partner (TMI?).

Because I’m in medical menopause with monthly lupron shots (to protect my ovaries as another form of fertility preservation while in active treatment), having my boob burnt from radiation and doing physical therapy for lymphedema treatment/range of motion to name a few. But to summarize and name the biggest changes since diagnosis have been: how has my body changed, the impact this has on my family planning and all the feelings that come with it.

You don’t realize how much you wish you had something until it’s taken away from you — that’s how I feel. I wasn’t ready to have kids just yet pre-diagnosis, but feel like cancer has stolen that opportunity away from me. I opted for a lumpectomy and breast conservation (as opposed to a double-mastectomy) for the chance to be able to still try and naturally breastfeed. Like forreal, its hella hard right now to see friends around my age getting pregnant and having babies, and I don’t even have the chance to try for that. And as much as I know by the time I have kids it won’t matter when they get older and their age gap won’t matter as much then, but still it sucks not being able to hit those “normal” milestones that other people in my circle are hitting right now.

Flip side though? 

The silver linings that I feel only cancer patients can claim. Cancer has pushed me to the edge and back mentally, physically, emotionally and spiritually but it has also given me perspective. How lucky am I that my PCP decided to order the breast MRI that led to my diagnosis and to finding this early on? Or some of the BS I used to put up with and things that would stress me out in the past? 

Not worth it anymore. 

Recognizing that I never used to set healthy boundaries – What does that look like to engage in that process in an act of self-preservation, self-care and compassion towards self? How do I unlearn this old programming where I thought to put me first was a sign of selfishness? Forreal, to put me first has been a struggle! As a WOC whose mom was a nurse, I had this model of what care-giving and empathy looked like. I would strive to care, help and put others first, but I never acknowledged what I needed. So when cancer came, that meant asking others for help and I didn’t know how to do that; I never knew how to communicate it.

Instead I was a ball of emotions and I felt stuck because the words couldn’t connect and come out. I’ve realized in trying to be strong for others, deflecting from me has been a coping/defense mechanism. I never really engaged in true vulnerability. It’s led to an inner struggle to break down this idea in my head of shame and embarrassment and thinking that asking for help and support is a sign of weakness/burden to others. It’s definitely been a journey in figuring out how to be kinder to myself and figure out how to authentically love, accept, and affirm myself wherever I’m at.

What has been your biggest challenge thus far?

In addition to being truly vulnerable and learning how to ask for support and lean on others, I think my biggest challenge has been accepting and finding ways to integrate this cancer journey into my identity, without fully consuming me into a downward negative spiral and feeling alone like no one gets me. I have (and haven’t at the same time) posted much about my cancer journey.

In my initial posts, they were somewhat positive, but it wasn’t until I started coming up on these first cancerversaries (like the day I found out about my MRI, to being told I had cancer, to the day I started treatment with IV chemo), that I realized these were pretty heavy days. I still felt alone, and I felt/feel stuck because being diagnosed with cancer was out of my control. I’m trying to find a balance between this hurt and healing that is co-existing and learn more about myself because cancer has forced me to confront some of my insecurities around self-worth, nutrition and body image and how that struggle is so real.

The other challenge is really trying to educate others (who haven’t gone through cancer) that the journey is never really over. Most people have this basic construct that breast cancer treatment involves some combo of chemotherapy, surgery, and/or radiation. Many don’t know about what everyone goes through after that in terms of maintenance with hormonal therapy, or in my case at the moment oral chemo. Or the scan-xiety of their first scan post “active treatment,” etc. In fact, I didn’t even know about all of this in relation to my mom’s first bout with breast cancer (partly because I was five when she was diagnosed and I think she was trying to normalize and protect us by not having her kids worry as we grew up). Like yes, in some ways we survived parts of this process of going through cancer, but I really prefer to re-frame and use the term thriving/thriver to encapsulate my cancer journey because I know this is ongoing (even if I appear to be “back to normal” because my hair is long again or whatever).  

What do you know now that you wish you knew before?

That there is no perfect way to go about this and that I am allowed to take up space to share and process my own cancer journey. When I was first diagnosed, I felt very much like my cancer journey was an extension of my mom’s journey. Yes, in some ways it’s sort of true, but my story and my narrative with cancer is also different and unique to me. It’s about progress, not perfection.  If I were to write a letter today to my past self pre-cancer, I would tell myself “I know you’re gonna feel scared and anxious with all of this crap being thrown at you with cancer, but it’s gonna be okay, and you are allowed to feel everything you’re feeling; you shouldn’t feel like you have to be passive about it. I know you’ve had to care for others in the past and felt like you had to suppress and internalize a lot of your emotions before, but I’m honoring that you did what you had to do back then to cope.  Now’s the time to step back and let people care for you and hold space for you and let you focus on you. I want to affirm that you are one strong woman, your resilience is something to behold. You’re going to find your way in all of this and you’re gonna be amazed and appreciative in the tribe and community that’s going to show up to support you.”

What advice do you have for other young women? 

I think my advice would be that there’s no denying that being diagnosed with breast cancer is a lot to take in, unpack, process and figure out. It’s going to feel overwhelming, but really tap into the communities and circles outside of your friends and family that are available to support you. The groups that will truly understand/empathize with what you’re going through and will be able to help affirm your experiences. Personally, I’ve found meaningful connections in my local young women’s breast cancer support group through the Bay Area Cancer Connections in CA, I’m on a Facebook Group for people taking Xeloda and now I’m connected to For The Breast Of Us, which I’m truly grateful for (because representation matters!).

In addition to my mom and my husband, I also could not have made it through all of this without my oncology psychotherapist who really was there for me with my mental wellness. If there’s an option within your oncology office/cancer center to see a therapist/psychologist/social worker, I highly encourage you to consider tapping into that resource to help process everything. Also, don’t be afraid to make changes within your care team if something seems off. Your oncologist is someone you’re going to be seeing for a while and if it doesn’t seem like it’s a good fit, go with your gut because it’s your right to find someone who you feel comfortable with. Lastly, try to stay on top and know how to navigate health insurance claims, because the last thing you want to do while going through treatment is being on the phone with them multiple times to figure out billing issues!