Alissa & Daphne Janes, Survivor/Co-Survivor

Meet Alissa Janes. We hope you find inspiration from her as she recounts her journey with breast cancer as a now twelve-year survivor!

I was watching a movie, right arm thrown up over my head onto the back of the sofa, left arm splayed across my chest, when I felt a knot above my right breast, like a small peanut. My husband felt it too. “You should have that checked out.” Ok, I thought, no big deal, no rush. I was 45 years old and up to date on mammograms, all of them unremarkable. I had been told many times that I had dense breasts, which at first struck me as ironic, given my A cups and bony sternum. Dense, I later learned, meant compact tissue that can obscure abnormalities.

I was unconcerned enough that I forgot to call my ob-gyn the next day.

That was a Monday. On Tuesday, an ob-gyn I had never met before, filling in for my regular ob-gyn, poked and jostled the knot, pronouncing it “moveable” — a good sign. Just in case, though, she suggested a mammogram. Pulling out a prescription pad, she filled in the basic info, then added “STAT” across the top.

I immediately phoned the nearby mammogram facility. When the receptionist asked if it was urgent, and the ob-gyn nodded yes, I crossed the street and checked in for an impromptu mammogram.

Four hours later, after the mammogram, an ultrasound and a hastily arranged biopsy, I drove home in a daze, no longer unconcerned.

On Thursday, the substitute ob-gyn cut right to the point: “It’s cancer.” The rest of her advice was a blur— oncologists, surgeons, etc. I called my husband and arranged for my mother-in-law to pick up our kids, ages 12, 10 and 8, from school.  Then I sat on the edge of the bathtub for over an hour, struggling to make sense of the situation. How could this be happening? No history of breast cancer in my family. No suspicious mammograms. Was I going to die? Who would help my husband raise our kids?

Once the diagnosis was in—infiltrating lobular carcinoma (ILC) and lobular carcinoma in situ—and a treatment plan developed, so many questions remained. My case was uncommon enough that the hospital’s “Tumor Board” brought it up for review. Even in hindsight, all those extra sets of eyes could not detect the tumor on my mammograms or ultrasounds. ILC can be ghostly, spreading out like a gauzy spiderweb, hard to pinpoint. It was pure luck that my fingertips on my bony sternum had felt anything at all unusual, even though my tumor measured 2.4 centimeters in length (which booted it right into Stage 2, even though my sentinel node was negative for malignancy). Apparently, ILC accounts for only about 8% of breast cancers. But it tends to be bilateral, so quite possibly my left breast was also cancerous.

My treatment plan involved 2 lumpectomies, a biopsy of the left breast, 4 rounds of chemo, 33 radiations. I also chose to be tested for the BRCA gene, for peace of mind about our daughter’s future. I had no family history of breast cancer, but history starts somewhere, right? Fortunately, I tested negative for the gene. Over the years, I have also had several biopsies of my right axillary (underarm) area to examine an enlarged node. Each time I have received good news that the node is benign. It is a reactive node, angry at everything it has undergone, but it will not hurt me. The lesson this node has taught me, and my daughter, is to always be vigilant— even without the BRCA gene in our history. I continue to have ultrasounds, MRIs, whatever it takes to be proactive.

My involvement with Susan G. Komen since my diagnosis has always been very private. Every year, our family donates to the fundraiser, and those of us who are available complete the local walk. Every year, I am humbled by the reminders that breast cancer is so prevalent, and I silently thank Susan G. Komen.

I have often thought about doing more as a Komen volunteer than just the annual walk. But I don’t want to dwell on breast cancer. For me, the best way to thrive has been to keep it personal, and gratefully mark each passing year with another pink “SURVIVOR” t-shirt and another strand of shiny pink beads around my neck.

On the flip side, my tendency to internalize can bring me to my knees with fear about a recurrence, about a new cancer, about biopsies and blood tests. My family has been my rock in these times, constantly reassuring me that, no matter what, we will be ok. To relieve some of my anxiety, I decided to have a prophylactic double mastectomy and surgical breast reconstruction in 2016, 8 years after my initial diagnosis. This, of course, comes with its own challenges, but was the right decision for me. My family has supported me every step of the way.

How can I support others in their fight against breast cancer? I like to tell this story:

When I was first diagnosed, I reached out to an acquaintance who had been through chemo with a diagnosis much tougher than mine—triple negative and aggressive. I explained the specifics of my tumor to her: ILC with 2 foci, estrogen positive, HER-2 negative, Staging pT2 pNO pMX. She was helpful and encouraging, and then she shocked me. She could no longer remember the specifics of her tumor. I couldn’t believe it. I was so consumed by every little detail of my diagnosis that I could not imagine ever forgetting those details. They were simply too essential.

That was 12 years ago. As I write this recollection of that time in my life, I have to sift through my medical records for that first pathology report, the one that dictated my treatment plan, because I cannot remember the specifics of my tumor! Were it not for the scars across my chest— of which I am proud, and which have also faded over time— I wouldn’t necessarily remember that breast cancer once dominated my life.

I have become that person, a survivor. Our triumphs—not our diagnoses—are what is most essential and powerful about our experiences with breast cancer. Survivorship is real. Do everything in your power to stay informed, be proactive, and beat breast cancer. Believe in the day when you, too, will forget how to describe this uninvited guest in your body, and pass on your faith to the next survivor.

Who is a co-survivor? Co-survivors can be family members, spouses or partners, friends, health care providers or colleagues.  Anyone who is there to lend support from diagnosis through treatment and beyond is considered a co-survivor.

We also interviewed her daughter Daphne, who is currently an intern with Komen Dallas County. She provides her own perspective on this journey as a co-survivor.

Tell us a little about yourself.

My name is Daphne Janes and I am 24 years old originally from Newport Beach, California. I graduated from UCLA in 2018 with a BA in International Development Studies and a minor in Global Health hoping to one day attend law school for International Human Rights. While in college, I was a two-year member of the UCLA Dance Team and served as captain my senior year. As graduation was approaching, I flew to Texas to audition for the Dallas Cowboys Cheerleaders, a life-long dream of mine. Fast forward two years and I am so honored to be a second year veteran on the team, now approaching my audition for year three. It is has been a challenging yet rewarding experience and I honestly still have to pinch myself that I get to live out this wild dream of mine. I do not think any of this would be possible without the constant love and support of my amazing family who have been by my side throughout it all.  

Explain your mother’s breast cancer journey from your perspective.

My mom was diagnosed with breast cancer 12 years ago. I can still remember the day when she and my grandma sat me down in her bathroom to tell me that she had been diagnosed. I was in 6th grade and my brothers were in 5th and 2nd grade and we were old enough to understand what cancer was but too young to really grasp what it meant and the effects it would have on our family. During that first year, my mom went through surgery, radiation, and chemotherapy. In my eyes, she approached every day like Super Woman and always made it seem to me and my brothers that everything would be okay. I knew she wasn’t a fan of losing her hair but we all knew that was just part of the process. Now, she has been in remission for 10 years and my family and I can so proudly say that she is a breast cancer survivor.

But the effects of cancer don’t just go away once the tumor is gone and chemotherapy is over. Over the years since she has been in remission, her schedule is still ruled by doctors’ appointments and she still continues to experience the crippling anxiety that accompanies waiting for test results that may or may not indicate the disease is back. Because my mom’s breast cancer was so uncommon and undetectable on a mammogram, in 2016 she opted to have a prophylactic double mastectomy. At this point, I was a sophomore in college and could better understand the gravity of the situation. While I hated seeing her in more pain, it is reassuring to know that not only her chances of recurrence are lowered but her constant state of fear has also been lessened.

The worst part of the cancer is the unknown that comes with it. This unknown has brought my family closer over the years and has made us so thankful for the life we live. We now prioritize family and health above all else. I have especially grown closer with my mom and can truly call her my best friend. Though this may not be a direct result of her cancer journey, I do know it has impacted us greatly. As my mother’s daughter, I also know that my chances of breast cancer are higher than those without a family history. Though my mom tested negative for the BRCA Gene, that doesn’t mean I am in the clear from getting breast cancer myself. From my late teens on, my mom has encouraged me to be constantly aware of not only my breast health but also all other components, as well. I try to live an active lifestyle and to have an open dialogue with my doctors regarding preventative measures moving forward.

How did you get involved with Susan G. Komen? What brought you to Komen Dallas County?

In Orange County, my family and I attended the annual Orange County Race for the Cure after my mom’s diagnosis to celebrate my mom in her fight and eventually in her conquest of this disease. When I became a Dallas Cowboys Cheerleader 10 years later, I had the opportunity to choose a cause near and dear to my heart that I would represent in our ‘My Cause, My Boots’ campaign. I chose breast cancer in honor of my mom and got to wear a pair of boots with a pink star at a home game to help bring awareness to this cause. After the game, I donated the boots to Susan G. Komen so that they could auction them off and use the funds generated to support their mission. In January of 2020, I reached out to Komen Dallas County to see if there were any other opportunities to become more involved and became their Fund Development Intern shortly after. Komen’s mission is one that my family and I feel strongly about and I am honored to be a part of their fight to end breast cancer.

What advice would you give to co-survivors of those going through treatment?

My advice to co-survivors would be to support your loved one’s journey to the best of your ability as they navigate the confusing and scary path of diagnosis and treatment they will go through. I would encourage you to stay strong but to know that it is ok to feel scared, as well. Though we are not the ones with the cancer that does not mean that we don’t feel some of its effects, as well. I hope that being a co-survivor encourages you to be proactive about your own health and the health of the people around you. Continue to go to your doctor’s appointments, complete self-examinations, and tell your friends to do the same. I would also love to remind you to try to have faith in the darkest of times because with treatment and support there is hope to ending this disease. Never forget you are not alone in this journey.