A little bit about you:
Name: Lori Chen
City: Mississauga, Ontario
What was/is your diagnosis? What year was it? What was your age at the time?
My first cancer diagnosis was stage 2 adrenocortical carcinoma diagnosed a week after my wedding in 2012, when I was 27 years old. The second was stage 1 triple positive breast cancer in 2020, less than a month after we went into lockdown for COVID-19.
What is something you’ve done that you’re really proud of?
When I was six months pregnant, my husband and I hiked the Skyline Trail in Jasper National Park. It’s a beautiful 44 km backcountry trail that we did over four days, and it was totally worth it!
What is a top item on your life to do list?
Write a book, though I’m not sure what I’d like to write about yet, haha. I’d also love to visit Antarctica to see the penguins!
What are your hobbies?
I think I have too many hobbies and there’s just not enough time! To name a few: I love hiking and camping (and just need to find someone to teach me how to portage so I can take that up too!), and travelling in general. I’ve been a member of one choir or another since I was 14 years old. I also have a side gig making cards and paper crafts, which I find is a super soothing way to spend the time. I consider myself a foodie as well.
What was your life like before your diagnosis?
Prior to my 2012 diagnosis, my life was very busy. I had just gotten married after a year of wedding planning. I worked at a busy Toronto hospital and was also in the middle of a Doctor of Pharmacy degree.
After my first diagnosis and treatment, I tried to slow down and take it easy. I returned to work part-time but slowly moved back to full-time over the course of a year. We bought a home, my husband started his own business, we started a family and life started to become unmanageably busy again. And that’s when I got my second diagnosis. I guess my body doesn’t handle stress very well!
How did you find out you were sick? What led to your diagnosis?
In spring of 2012, I had had erratic periods for about six to nine months. This was unusual for me so my family doctor sent me for a pelvic ultrasound; that’s when they saw a mass on my right side, above the kidney. A follow-up CT confirmed it was likely adrenocortical carcinoma. I didn’t have any other signs or symptoms.
In the spring of 2020, I noticed a lump in my right breast while I was changing. I saw my family doctor within 24 hours and got a mammogram with an ultrasound and biopsy three days later, which confirmed breast cancer.
What were your first thoughts when diagnosed?
When I was first diagnosed in 2012, there were lesions on my liver that doctors thought were metastases. Luckily they were not, but this wasn’t confirmed for about three months. So my first thought was, I’m going to die and soon. It was a frightening and distressing thought, and I worried how my new husband and my family would be without me. I also thought of the things I wanted to do and wouldn’t be able to do. So there was a lot of anxiety and some sadness, but mostly anxiety.
My second diagnosis was different in that I was now a mother. So my first thought was, If I die now, my child is too young to even remember me. And this time around, I still mainly experienced anxiety and sadness, but there was a lot more sadness because I was worried about how my illness and potential demise would impact him.
In which hospital were you treated?
Princess Margaret Cancer Centre in Toronto, ON.
What did your treatment consist of?
Adrenocortical carcinoma – surgery to remove adrenal and part of the liver. I’ve got a big scar across my abdomen and it took a few years to get my core strength back to 100 per cent (I wasn’t working too hard at it, I admit!). That didn’t stop me from wearing bikinis though!
The doctors also recommended that I take mitotane for three years and I got a second opinion from the University of Michigan to help me decide. In the end, I decided against taking mitotane because my cancer was very, very slow growing; the one available study didn’t show a significant difference in survival between taking the drug and not, and the side effects were quite concerning.
Breast cancer – Neoadjuvant chemo (dose-dense AC Taxol with Herceptin and Perjeta), right-sided mastectomy with sentinel node biopsy and immediate reconstruction, and tamoxifen for five years.
The chemotherapy gave me neuropathy and put me into menopause, which has been troublesome, but what can you do? The Herceptin significantly dropped my heart function; luckily it improved again after I started medications for it.
What is your current medical status?
Finishing up treatment for breast cancer. As far as we know, there isn’t any cancer in my body, but scans keep finding new things that might be concerning, or nothing at all.
Life after cancer:
How is life different for you now post diagnosis?
I’m trying to slow down, be more present and plan for the next few months or year, rather than years down the line.
What is/was the toughest part about having cancer as a young adult?
How it permanently sets you apart — and sets you back — from your peers. I’m much more careful and slow to make decisions compared to my peers because there are so many more aspects of major decisions to consider when you know you could relapse or get another diagnosis. Financially it’s also devastating, and that really upsets me because it takes away some freedoms that you might otherwise have in life.
What really helped/helps you to keep going while you were/are sick?
My family and friends. I’ve been lucky that I’ve always been so well-supported by them and have not been ghosted by anyone close to me. That is such a gift.
What kept you/keeps you busy during treatment?
Books, Animal Crossing on the Nintendo Switch, Pokemon GO, Netflix.
Did/Do you feel isolated from your peers since your diagnosis? If so, how did/does that affect you?
Day-to-day I don’t feel isolated, but when it comes to big decisions (e.g. having children, buying a house, etc.), it feel a bit isolated because my friends do not consider their own mortality when making these decisions.
Did anyone talk to you about fertility options before treatment? If so, how did that affect your decisions? If not, what do you wish you had known?
I asked about fertility options during my 2012 diagnosis. At that time, there was no reason to go ahead because my final treatment plan didn’t affect my fertility, but the knowledge came in handy in 2020. As soon as I was told I might have breast cancer, I knew to ask for a referral to the fertility clinic. This meant that when the diagnosis was confirmed, I was able to go to the fertility clinic and begin the egg retrieval process the same day. It made all the difference; I just had enough time to get it done before I started chemo.
If you have children, how has your diagnosis affected the way you parent? Do you have any tips for other parents on talking to their children?
I’m trying to be more patient and mindful when I parent, though that it a daily struggle. The best thing, I’ve learned, is just to be upfront about everything — in an age-appropriate way. Use the word “cancer” over “sick” so they’re not scared that everyone who is sick has cancer and is deathly ill. And when in doubt, Gilda’s Club and Wellspring have your back — they’re always there if you need advice or support.
How has your cancer experience affected your body image, and your relationship to your body?
Surprisingly, not really. After each surgery, there’s a few weeks or months when I need to get used to the look of my body again, but after that I’m good.
What are some lifestyle changes you’ve made since your diagnosis?
I try to be more active and eat fewer animal products. I became vegetarian after my first diagnosis, but couldn’t sustain it long-term. Now I try for moderation.
Resources and recommendations:
What would you add to a treatment-day playlist?
Hamilton soundtrack, anything by Bruno Mars/Imagine Dragons/Ed Sheeran.
Which books/movies/podcasts/TV shows/etc. would you recommend?
I read through half of Janet Evanonich’s Stephanie Plum series while in chemo. Schitt’s Creek and Brooklyn 99 helped get me through as well.
Have you participated in any other retreats, conferences, programs, or support groups you’d like your cancer peers to know about?
Gilda’s has a 20s and 30s support group, which has been very helpful. The “Writing Through Cancer” workshop is also amazing.
Wellspring is also very helpful. I’ve turned to them mainly for practical things (e.g. returning to work, brain fog, etc.) but they do have more emotional support and physical activity programs. Their Healing Journey series is very good.
Are there any other resources you’d like to recommend?
I’m taking a mindfulness and compassion course for health care professionals through the Sarana Institute and it is simply amazing. It really helps you set up a meditation practice and helps you to explore compassion, empathy, and equanimity.
Andrea Warnick Consulting is also a great group of professionals who specialize in grief counselling, and they can be very helpful when you’re having a hard time throughout your diagnosis, treatment, and survivorship.
Stay in touch:
What would you like to say to other young adults dealing with cancer who are reading this profile?
Be kind to yourself. Cancer sucks and there will be times when you are just overwhelmed, when you’re in despair, when you feel like you could die from side effects or anxiety or fright. These are all normal feelings, and even though they seem to go on forever, they will pass. And there’s a whole community here who know what that is like and who are here for you if you need it, if you just reach out. So be kind to yourself and never be afraid to ask for help.
Are you interested in helping others facing cancer challenges? If so please let us know how you can be contacted.
[Email [email protected] and we’ll forward your message to Lori!]