My name: Samantha Horn
Where I live: Baltimore, MD
How far out of active treatment?: Four years last week!
I was diagnosed with Stage II, ER+ IDC breast cancer when I was 26. Like many other young women, I found a lump in my breast and was told by a doctor at my primary care's office not to worry about it; it was probably a lymph node. I reminded the doctor of my family history on my mom's side, even though she had tested negative for the BRCA mutations, and the doctor told me that the family history was post-menopausal women. I should come back if it grows, changes shape or causes pain.
I had a great summer, my first experience with "wedding season" and enjoyed adventuring with my boyfriend and our puppy. After pain in my breast made me cut a run short (I had just started running!), I went back to the doctor. This time, things moved quickly. I had a mammography and an ultrasound and everyone at the breast center was so nice! It made me very suspicious of their behavior. I learned on October 1, 2014 that I had breast cancer, and had my full staging on October 14th, my mom's birthday (happy birthday, Mom!). In the next few weeks I had countless appointments and made very quick decisions. I opted for a bilateral mastectomy with immediate reconstruction, followed by ACT chemo. Surgery was November 5th, and chemo began about a month after that. My surgery had good margins so I did not need radiation. This was a huge relief to me because that was the treatment option I was most hoping to avoid. Fast forward, and I've been living the glorious joys of tamoxifen for almost 4 years.
The day I was getting all of my pre-operation testing, I received my genetic results that I was BRCA1+, most likely on my father's side of the family. This part of the diagnosis was quite a shock because my dad's side of the family has zero history of cancer whatsoever, but it's the Jewish side of the family. Knowing my BRCA+ status made me feel more confident in my treatment decisions, and gave me a small answer to the "why??" question that we all face.
Since treatment, my life is both the same and also drastically different. I was very resistant to joining the cancer community. I felt like I had my support system in place. That slowly changed and then completely morphed. I started advocating for young women with breast cancer with Living Beyond Breast Cancer. I met other young women and developed relationships. Two years ago, I made a huge career change and decided to start working in the cancer community professionally. It's fulfilling and challenging and sometimes heartbreaking and always worth it. I'm still working on my relationship with my body, but aren't we all?
What does the word 'survivor' or 'survivorship' mean to you?
1. Obviously can't say it without singing Destiny's Child.
2. Prior to cancer, I always thought of survivors has having gone through something that is now in the past. I know better now. Survivorship is about building a new life and accepting that trauma has changed things. Plans have changed, goals have changed, my career has changed. I've accepted all of this! I'm about as go with the flow as a Capricorn can be. This is my life. Sometimes I melt down because wtf why did I have to get cancer? It fucked things up! But mostly, I have had some really great friendships and experiences come out of my cancer diagnosis.
Physically, I find survivorship to be a constant negotiation between what side effects I'm willing to tolerate and what needs a change. Tamoxifen is a fucking doozy every summer- swollen feet/ankles, puffy fingers and achy joints. I no longer have hot flashes, but I'm always warm. I've worked with my team and do all I can to alleviate the symptoms because I recognize that it's worth it to remain on this drug. Yes, I whine, but in the scheme of things I've tolerated it really well.
If you had to describe what survivorship feels like in three words, what would they be?
Fuck-ton of emotions.
What's one thing you wished people outside of the cancer community understood about survivorship?
We don't leave cancer behind once we finish active treatment.
What are some things that have helped you during this time?
My boyfriend! Our adorable dog! Doing all those things we're "supposed" to do- eat well, exercise, try to sleep well (but Tamoxifen fucks with that). Family and friends that become family. Shopping! My body totally changed, and continues to change, so purging things that don't fit gets them out of sight and out of mind. Making life decisions that have NOTHING to do with cancer feel GREAT.
Biggest survivorship pet peeve?
Buying me random pink products, especially the ones that have zero philanthropic component. Please just donate somewhere in my name. (can you leave that answer anonymous if you use it?)
Telling me "You look great!"
Having to explain my weird state of pseudo- menopause when women are confused that I can relate to their experiences.
What, if anything do you think should be done more in the cancer community in terms of survivorship?
I'd love to see support groups/events designed for those of us that are out of active treatment. I loved my support group, but I found that I kind of graduated from it. Their educational components didn't really apply to me anymore, and I found I wasn't getting as much out of it. I'd like to see some settings just for 'us' where we can talk about life 2, 5, 10, 30 years after cancer.
What's your favorite swear word?
FUCK! I'm from NJ after all.
What's something you haven't said out loud about survivorship that you want to get off your chest?
I regularly ask myself "Is this a side effect or is this aging?" Is every 31 year old this fucking tired after a full day of work? Why do I actually have to watch what I eat now?
What's your theme song?
Oh damn. I'll have to get back to you!
Consider this a free space to say anything you want about this topic. Word vomit, away. No judgement. I want the realest of the real here.
Being BRCA1+ makes survivorship challenging. Of course I'm scared of a breast cancer recurrence but I'm REALLY scared of ovarian cancer. When I have my gyn surgery, will I be a previvor and a survivor? WHAT'S MY LABEL?!