In honor of Breast Cancer Awareness Month, I wanted to share my dear friend Kristen D’Angelos story with all of you. Her husband Michael and my older brother have been best friends since kindergarten. They have literally been through it ALL together. Kristen had her third baby two weeks before I had CJ and we literally texted our Oye’s and Joy’s every step the way. Kristen and Mike are more than friends, they are family and Kristen’s outlook and kick-ass attitude through all of this has been nothing short of amazing. Stay tuned for some incredible work from them in the future. Today, I simply wanted to take some time to share Kristen’s story, in hopes that it inspires you too #FeelItOnTheFirst, to get your mammogram and ask important questions! If you have a few minutes, go show her some much deserved love on Instagram.
Tell us a little about you. Who is Kristen, what does she love, what are her passions?
I’m a wife, mama of three, attorney and breast cancer fighter. I love fitness and wine, work time and kid time, date nights and girls nights out. I try to balance all the chaos, that def doesn’t always happen, but then throw cancer in to the mix… oye vey. But who am I kidding, my life’s messy and every day I’m just a mom trying my best.
When were you diagnosed? What age (if you don’t mind sharing) and what stage?
I have two diagnosis dates. The first was when I was diagnosed with the BRCA1 mutation, November 2017 and the second, when I was diagnosed with Stage 1 Breast cancer June 2019.
I found out I was BRCA1 positive the day after finding out I was pregnant with my third baby. Talk about a roller coaster of emotions. After talking to multiple doctors, they all suggested I enjoy my pregnancy and come in for scans and consultations after giving birth.
A little info about the BRCA mutation “About one in every 500 women in the United States has either a BRCA1 or BRCA2 gene mutation.” So this is rare. This BRCA mutation is a predisposition and increases the risk for certain cancers. “About 50 out of 100 women who have a BRCA1 or BRCA2 mutation will develop breast cancer and 30 out of 100 of these women will develop ovarian cancer by age 70.” Compare that to the risk in the general population, which is “twelve out of 100 women will develop breast cancer and one to two out of 100 women will develop ovarian cancer in their lifetime.” My risk of developing cancer because of the BRCA1 mutation and my family history was 87% before age 70.
After meeting with breast surgeons, oncologist, and gynecological oncologists, they recommended I wait 3 months after I stopped breastfeeding to get scanned. A breast surgeon examined me in March 2019–she felt nothing. She gave me scripts for baseline testing and sent me on my way. I stopped breastfeeding later that month and waited for 3 months. Almost 3 months to the day after my clinical breast exam by a breast surgeon, I felt a lump. I ask my husband to feel it, we both said It could be a clogged duct or something. Three days later It was still there; I called to schedule my breast MRI, mammogram and sonogram.
In June 2019, at 34 years old I was diagnosed with breast cancer, Stage 1 Intraductal Carcinoma (IDC), Estrogen receptor positive(ER+).
Does BC run in your family?
I’m BRCA1 positive, which is a gene mutation that predisposes you to breast cancer, as well as other cancers. My family has a very strong familial history of breast cancer on my mother’s side. My mother was diagnosed with Stage 0 DCIS in 2014 at 59 yo. Four of my maternal great aunts had breast cancer. With my mother’s diagnosis along with her familial history, she was recommended BRCA testing, turned out my mom is BRCA1 positive. This gave her offspring,a 50/50 chance of being BRCA positive as well. So yes, I’m a mutant!
Did you perform routine breast exams? Any symptoms?
Knowing I might be BRCA since 2014, I was always thoughtful of my breast health and made sure I knew how they felt. I breastfed all three of my children. I was pregnant or breastfeeding from 2013-2019, which means I touched my boobs a lot. I may not have gotten a physical every year, but I religiously went to my OBGYN for my annual appointment. Anyone who knows you knows you are incredibly strong and inspiration to each and every one of us. What is one piece of advice you can give women to increase awareness?
This is the advice I tell all my friends, family, and anyone who will listen…. You are the boss of your own body.
No one will take care or know your body the way you do. If you feel something, do something, don’t bury your head in the sand, call the doctor and make an appointment. Remind your friends and family to do their annual mammograms and OBGYN appointments. And don’t forget to “Feel It On the First.” A breast self-exam is very effective in alerting you and your doctor to possible cancer. “Forty percent of diagnosed breast cancers are detected by women who feel a lump.” This means feel your melons, lady lumps, knockers, whatever you call them. Take charge of your body.
You are now undergoing chemotherapy. What does that entail? Any tips for choosing the right treatment facility for you?
Although my breast cancer was removed when I underwent a double mastectomy, I am Stage 1, my tumor was very small, under 1cm and my lymph nodes were clear, my oncologist still didn’t like my numbers so she sent my tumor out for more testing. Oncotype DX test, this is a speicific test for someone like me: stage1 no lymph node involvement small tumor… It gives a score. My score was high, this score gave me a 22% chance of recurrence. This is not good. This means that I had an aggressive cancer and one that would likely return. If I received chemotherapy It would reduce my chance of recurrence by greater than 15%, bringing my chance of recurrence down to less than 7%. This all means that I needed chemo.
So now I’m receiving Taxotere/Cytoxan cocktail. My onco wanted to “get in, get out.” It would be hard and swift, so only 4 infusions, one every 3 weeks.
I knew I May lose my hair from chemo. I was okay with that. My mindset was “get the cancer out of me, who cares about hair for a few months?” But, there’s a big BUT, Taxotere carries a risk of permanent hair loss. There’s a large class action law suit about this. I was not okay with this. The thought of a very visible permanent loss from chemo made me very anxious and sad. I imagined myself years later feeling good, loving life, but then still carrying around a reminder that I had battled cancer. It’s not a scar on my chest that would fade, It would be something that would change my outward appearance forever. I was not okay with this…
So under the recommendation of my oncologist, I chose to do cold capping. This will reduce my risk of permanent hair loss to close to 0%. Cold capping is commonly used in Europe, but just now gaining traction here in the US. The FDA cleared cold capping only in December 2015. It’s not cheap (at about $600+ an application in my case- includes cap rental and capper). Unfortunately, it’s still not commonly covered by insurance. Because keeping your hair isn’t considered a medical necessity. Insert major eye roll. But It can work, so I was going to try It.
I’m very lucky that I can do the cold capping, and I’m crossing my finger It works. I can keep up to 50-80% of my hair during treatment. I’m using Penguin cold caps, there are a few different companies, but my onco’s patients have had the best success with this cap. I have a “capper”, his name is Wayne, he’s a professional at applying the cap. He meets me at the cancer center and stays with me for the whole day. Before my infusion begins, a very very cold giant ice pack cap is placed on my head. It is changed every 30min from before the infusion until 4.5 hours after the infusion. Initially it’s really cold, you feel like a brain freeze. But eventually your head becomes numb and you don’t feel the cold anymore. It felt heavy on my head, it was uncomfortable, and with cap changes every 30 minutes, I couldn’t really relax or sleep from 9:30am to 6:30pm. But all i thought was “this is temporary”, and I pushed through, and maybe some Ativan helped a bit.
The hair care takes as much grit as the cap application, in my opinion. I can only wash my hair every 4 days. And I can’t “wash wash” my hair. I have to pour tepid soapy water over my hair and then pour clean water to rinse. There’s no touching the scalp or roots of my hair because they’re fragile from chemo. I can comb my hair once a day. I can wear in a loose braid or low loose pony, but no scarves, caps, hats, nothing on the head. That can create heat and pull at the root of the hair. I can’t use dry shampoo. I sleep on a satin pillow case. It’s basically terrible hair days for the next 3 months, but hopefully they continue to be hair days. Fingers crossed.
The chemo itself wasn’t that terrible, minus my allergic reaction. Taxotere carries a risk of allergic reaction, because of this the first five minutes of the drug being administered the nurse needs to stare at you. Minute 3, my chest felt tight and I turned bright red— I was having an allergic reaction. They stopped the infusion and gave me strong IV steroids immediately. I was nervous for like a sec, I felt better quickly, but I had to wait an hour before they started the infusion again. Thankfully I didn’t have another reaction. Afterward, my husband informed me they had a crash cart outside my room. Geeze, I guess this was serious. Thankfully, I had full faith in the nurses and doctors and knew they could handle any medical issue. I’m feeling better everyday, until my next infusion in a week and a half.
So 1 down, 3 to go.
You kids are young, how did you share the news with them? Any advice?
We have three kids, 6yo girl, 3yo boy, and 1yo girl. It’s hard to decide when and how to talk to kids about your health issues. First, Kids are a mirror for your energy, so we chose to keep any anxieties at bay and be strong, happy, and see the positive in every situation that this diagnosis brings. I may not have had a choice in getting cancer, but I can choose to smile. And I do.
When I was diagnosed and needed to undergo a double mastectomy, we told the children I had a booboo and the doctors needed to take It out to make me better. And mommy would be ok. We didn’t go into any specifics other than that.
Second, Kids are amazing and always rise to the occasion. They have been helping mommy out and watching out for her booboos. The next step of undergoing chemo, we told the kids mommy needed medicine to help mommy and that i wouldn’t feel that good, but afterwards mommy will be strong and ok.
The kids have been great and their snuggles are the best.
What BC resources or support systems can you reccomend?
Always talk to a doctor and review reputable information. My husband did a lot of reading on https://www.ncbi.nlm.nih.gov/pmc/
I needed the less quantifiable anecdotal human experience. I found a ton of wonderful information and support on social media. Just following other young woman, like myself, who are going through this has been so helpful. Knowing that after all of this, my life will once again be healthy, fun and beautiful has eased any doubts I may have. I say to myself “if they can do It, of course I can too.”I also tell everyone what’s going on with me. I’m not embarrassed about It. I kinda over share, but It takes a village to get through this. I got a facial the day before my double mastectomy, I tell the esthetician what’s going on… guess what? She had a double mastectomy the year before. I go to my son’s preschool play date, I tell a fellow mom… guess what? She had a double mastectomy 7 years ago. There are so many women around you whose lives have been affected by breast cancer, all you have to do is share your story and you will find support in your community.
It has been a truly amazing experience getting diagnosed with cancer. I have felt more alive than ever before. I love my family harder, I hug my kids tighter and I appreciate every day more than ever.
Other recommendations:
The Breasties
Paige Previvor
FORCE message boards
Anything else you want to add?
My husband, Mike, is truly the star throughout all of this. He has managed to take wonderful care of me and the kids, all while running his own business. He’s been amazing, truly amazing. His mission has been for me to relax and recover before and after each step of this journey, and so far he has succeeded.
If you are in South Florida and in need of a mammogram, Baptist Health South Florida is here to help!
Stats:
https://blog.dana-farber.org/insight/2018/03/brca-mutations-common/
http://www.rapunzelproject.org/Default.aspx