Tell us a little bit about yourself.
Hi there, my name is Courtney, I’m 33. A wife to a wonderful partner and a mama of a precocious 2 year old boy I had a unilateral mastectomy with immediate reconstruction (tissue expander) in March of 2020 to deal with a “Cancer-ish” tumour known as a Phyllodes Tumour. Phyllodes are soft tissue sarcomas of the breast. They are rare and even rarer for someone to have one in their early 30’s.
How did you first become aware of your diagnosis?
I was 12 weeks pregnant when I noticed a golf ball sized lump in my breast. It felt like breast tissue but separate. I casually mentioned it to my OBGYN who sent me for a breast ultrasound. During the ultrasound they offered me a core needle biopsy right then and there. It came back with a differential diagnosis of fibroadenoma (benign) or Phyllodes Tumor (sometimes benign sometimes not). With the pregnancy it was growing 1cm/month so we opted to have it out at 27 weeks pregnant. It came back as a lactating adenoma, a pregnancy related tumour. I went on with my life and had a healthy baby boy. When my son was about 3 months I noticed another large lump in the exact same spot as my last one. We watched it for a year and once I weaned my son it started to grow exponentially. We had another biopsy, same result as the last. Had another lumpectomy and this time it was diagnosed Borderline Phyllodes Tumour. Not fully benign, not fully malignant... in the grey zone. I had to have another surgery to get wide margins and then had to have a consult with a radiation oncologist.
When and how did you seek information about sarcoma?
After my diagnosis I started to dig into research and learn everything I could about Phyllodes. I joined a super informative Phyllodes support group on Facebook. I have learned that if these tumours aren’t removed with a minimum of 1 cm margins, there is a high chance of recurrence and that the tumours can come back malignant even if they were benign I the first place. I have also learned that though these tumours are rare, if they metastasize (which they can do even at the borderline level) the prognosis is very grim.
What treatments have you received?
Together, with my care team, we decided my best option to limit recurrence and to limit long term side effects was to have a unilateral mastectomy. On March 6th 2020 I had a unilateral Skin sparing mastectomy with a tissue expander placed under the muscle.
How do you cope with the stress of your cancer diagnosis?
As soon as the word mastectomy was mentioned I fell apart. I googled mastectomy outcomes and cried harder than I have in a long time. I have an amazing group of friends and I talked out my fears with them over and over. They assured me I was making the right choice as well as threw me a party a few nights before my surgery with so many special gifts like an accessible shower head, post op bra, nail polish, gift card for pedicures. My husband has been my rock and allowed me the space to work out all the difficult emotions. My son is the light in my day and my desire to keep life normal for him has kept me so grounded. I have an amazing faith community who has been there practically as well as spiritually which has also been irreplaceable.
What makes you feel strong?
Hmm I don’t know if I ever feel strong, but just focusing on “keeping one foot in front of the other” helps me stay grounded. If I let myself I can spiral and the best way I know how to prevent the spiral is to focus on what I can do each day.
How has facing cancer given you a unique perspective on the current coronavirus pandemic?
I have just realized how privileged I am throughout coronavirus. I have a partner who has been able to care for me throughout recovery. We have been able to keep our jobs, relished in the slow pace. I feel like my “Cancerish” experience has helped me to realign my priorities and I think Covid has done that for the world.
Are you concerned about your COVID-19 risk?
No, I’m not immunocompromised. I am back to my work as an allied healthcare professional in a hospital. I see my clients virtually. We have been very careful with our exposure and our bubbles. I was more scared at the beginning when I was first recovering from surgery as I was sure a Respitory infection with a mastectomy would have been awful.
How are you taking care of yourself at home?
We are enjoying our backyard, baking muffins, I run and workout in the backyard. It’s been nice to slow down and really spend time playing with our son.
What gives you hope during this time?
It gives me hope that we have such a unique opportunity as a society to re-evaluate our values and to be a part of social change. It’s exciting to think about the “new normal.”
Photograph by Iron & Bragg Photography.