City: Toronto, ON
What was/is your diagnosis? Uterine Leiomyosarcoma (Lie-yo-my-yo-sarcoma), Stage 3, low-grade.
What year was it? What was your age at the time? 2015; 38-years-old.
What is something you’ve done that you’re really proud of?
In 2012 I changed careers and decided to go back to school part-time. After being diagnosed with ULMS in the summer of 2015, I decided to continue going to school so I could finish my program and graduate. Because my surgery in June 2015 had removed the tumours I had, I proceeded as though I was in “remission.” I was not eligible for chemo or radiation because my cancer was low-grade. I registered for my final class in September 2015. This was a very challenging time in my life, figuring out what all of this meant, dealing with the stress when the reality set in a few months later, working full time, and fighting a viral infection that lasted seven weeks, as well as dealing with shingles. But I did it! And I attended my graduation ceremony in June 2016.
I’m also really proud of the fact that I’m the first Canadian who is filing a lawsuit against the manufacturer of the device used in an earlier surgery that led to an upstaging of my cancer. I want to be an advocate for this rare cancer and the avoidable circumstance this device can cause.
What is a top item on your life to do list?
I want to travel and thoroughly enjoy as many adventures as I can. I’m not an adrenaline junkie or live life on the edge but I’m more open to new experiences. I’m taking my first solo trip to Costa Rica in May and am super excited. I plan to do a Superman zip line where your body lays horizontally in a harness and you fly head first.
What are your hobbies?
I did a lot of volunteering a few years ago, but because of my job and school commitments, I’ve had less time to put to this. I hope to gain more life balance in the coming months and want to become more active in this area again. I am currently on a volunteer committee for Lung Cancer Canada. I also enjoy self-improvement and learning more about the charitable sector, so I do a lot of research and web surfing in this field. Otherwise, my life is pretty typical: I like walking around the city, going for dinner with friends, watching documentaries, and chilling with my cat.
What was your life like before your diagnosis?
Life was really busy! I was in my final year of night-classes, was one-year into my new position as an executive director, and had met some really great new friends and started enjoying an active social life.
How did you find out you were sick? What led to your diagnosis?
I had suddenly been experiencing terrible abdominal pain, but thought it was indigestion so went to work and tried to power through. I lasted a few hours. I eventually went to the walk-in clinic that night; they couldn’t clearly identify what was happening. I was in tears when I got there and could barely walk, the pain was so bad. With a prescription for Buscopan in hand, I was on my way. I would need to wait for blood work and a urine test to come back. Fast forward five days: I still had no answers back on my tests and decided I would take myself to the ER the next morning. I knew they would be able to do all the tests and get results in the same day.
A few hours after checking into the ER, I was having an ultrasound. I had previously had a hysterectomy due to fibroids in 2010, and when the radiologist came in to join the technician, he asked if I was sure that was the reason for the hysterectomy. At this point I knew something was up. He said the results were inconclusive and wanted to order a CT scan. Later that night, I learned I had two things going on. First, appendicitis. Second, multiple masses in my pelvis that were causing the appendicitis and had pushed my appendix to the centre of my pelvis. Still not knowing what all this meant, I didn’t officially receive the cancer news until the following month.
What were your first thoughts when diagnosed?
I was confused. My situation is a little complicated, in that the hysterectomy I had many years prior was done using a device that inadvertently spread uterine cells throughout my pelvis. Over time, the uterine tissue continued to grow fibroids, but had now become cancerous. I met a friend for coffee just before my appointment time and was updating her on all the things that had been happening. She was the one who told me about a CBC report on this device that she heard that same morning and said I needed to ask my doctor if that’s what she used on me. I did. And they did. I still didn’t really understand what it all meant.
I was by myself, thinking, this is just fibroids again. She’ll probably want to monitor me. No biggie. (Hot tip: fibroids can’t grow unless you have a uterus).
My pathology results were delivered by the surgeon who performed the hysterectomy, not the appendectomy, because I had to see her for updates on what had been going on. She was the first appointment that had been scheduled.
She said it appeared that I had what was acting like a low-grade leiomyosarcoma and would refer me to the Odette Cancer Centre, which is part of Sunnybrook. I think I was more stunned and not really understanding what this all meant. I certainly knew what the Odette Centre was, though!
In which hospitals were you treated?
The appendectomy and pelvic mass removal took place at Toronto Western Hospital. I then had a follow-up surgery in April 2016 at Toronto General Hospital, now under the care of an oncologist and surgical oncologist at Princess Margaret Hospital.
What did your treatment consist of?
In my particular case I was not eligible for chemo or radiation because my cancer was low-grade. After the initial surgery in 2015, I then had a follow-up surgery in 2016 to remove a small tumour that had been missed, debulking and an oophorectomy (removal of my ovaries), since my tumours were estrogen and progesterone positive. This would be considered my preventative treatment.
Going into induced menopause is not fun! It snuck up on me slowly over the first week but it eventually felt like I ran into a brick wall. Hot flashes and night sweats, depression, sore joints, memory loss, and sexual response changes.
What is your current medical status?
As of April 8, 2017, I will be one year with no recurrence! I’m celebrating that success. My oncologist believes this cancer will come back at some point — maybe in five years, maybe in 20 years — but that’s the nature of how it works. It is usually an aggressive sarcoma, but I am lucky that mine is slow growing.
Life after cancer:
How is life different for you now post diagnosis?
Life after receiving the cancer diagnosis has been interesting. I have tried to look for the silver lining in the situation and have more of a zest for life. I’m more interested in finding balance and less stress when it comes to work/life, and am trying new things and traveling. I had to cancel two trips upon diagnosis so I think I attempt to do as much as I can, when I can.
Physically, not much changed until I had my second surgery in 2016. Since having my ovaries removed and going on meds, I have gained 25 lbs, have less energy, my joints are sore from time to time, and I just feel blah. I also went through a bad depression, which the meds have helped with, so I think the past year has been about finding new balance in my body and mind.
What is the toughest part about having cancer as a young adult?
As a single person, I first struggled with feeling alone. Because I was 38 when diagnosed, so many of my friends were already dealing with their own crap. Our parents are having health issues and most friends have kids, so it was hard to get the support I needed. They had their own things going on. Don’t get me wrong, they were there for me, but I always felt like a burden. Having to rely on my mom for everything was embarrassing at this age.
I made a career change two years prior and then to be hit with this felt like I was being thrown off course. I have a job that can be high stress with a lot of pressure and I didn’t have the luxury of taking much time off. With no disability leave and living on my own the stress continued to pile. I’ve worried about having to sell my condo, take out RRSPs to take leave of absence, and wondering what would happen to me if this came back.
It also sucks trying to date, especially with the physical changes I’ve gone through. Definitely have a lot of moments of feeling inadequate, but I really focus on looking for the positive.
What really helped you to keep going while you were sick?
Sometimes I just needed to be by myself, or be still, but with company there. It was overwhelming to have to talk about everything so much, explaining details. I eventually decided to write a blog. It helped to clear my head, ensured a record of all that happened, and was a great way for my family and friends to keep up to date without me having to explain it all the time.
I started focusing on myself, unloading unnecessary projects off my plate, and allowed myself to relax. I signed up for Reiki and Therapeutic Touch and a six-week writing course at Wellspring. When I found out I was having my second surgery, I planned ahead and joined a 20s/30s support group at Gilda’s Club. I went to my first group two weeks after surgery and it has had a massive impact. I waited nine months before really taking the step to get support, and it was the best decision I ever made.
How are you connected with Young Adult Cancer Canada? How did it happen?
I believe I first found out about YACC through the hospital social worker, but at that point I was in such an emotional daze that none of it registered.
As I was in my final night-class for the program I went back to school for, one of the other students had also been diagnosed a few years prior. We were talking and she was the one who suggested I connect with YACC. I reached out to sign up for the Facebook group. Once I started going to the 20s/30s group a fellow member was going to YACC’s Survivor Conference in NL. When I heard about Retreat Yourself BC, I decided this might be what I needed, emotionally and spiritually. I signed up and went to the December 2016 retreat; it was the most incredible experience! I met so many inspiring and supportive friends. They felt like family, and at the end of the trip, I didn’t want to leave. I’m super excited to be attending the Conference this June in NL. It will be a little reunion for some of us too.
I have also attended two Localife events.
Do you feel isolated from your peers since your diagnosis? If so, how does that affect you?
The only thing I struggle with is talking about the side effects of the surgery I’ve had, or the medication I’m on. Whether it’s feeling joint pain, struggling with the weight gain, or other emotional challenges, it tends to be oversimplified by some. “Just drink lots of water” is the easy solution. I tend to not bother talking about these things outside of my cancer network, but when it does happen, there is no real understanding. I don’t blame them. They only know what they know.
Did anyone talk to you about fertility options before treatment?
I had a hysterectomy before my diagnosis, but there was no real conversation that I remember about freezing my eggs before having my ovaries removed. Given my age and relationship status, I didn’t see myself having kids at this point anyway. The cost to freeze eggs is not inexpensive and I’d probably have to do hormone treatment first to do egg collection, so it would have automatically excluded me.
Has your cancer diagnosis affected any of the relationships in your life? If so, how, and how are you managing them?
It has put extra stress on my relationship with Mom at times. She is my main supporter, and as a caregiver, she carries a lot of stress. I lost my stepfather to cancer five years ago, and her mom passed away one week before my last surgery, so seeing her daughter now receive a diagnosis is really tough. Since my last surgery, she has been very empathetic and supportive of the way I choose to live my life now. She encourages me to travel and try new things that she normally would have been more cautious about.
It’s hugely affected relationships with prospective partners. A few guys I have dated were supportive, but dealing with the physical side effects does put a lot of stress on me and our physical interactions. I’m not really managing it to be honest. It is what it is. I simply don’t have the energy to worry about people who can’t be supportive or patient with me. It makes me sad that this is my new reality.
How has your cancer experience affected your body image, and your relationship to your body?
I had no body image issues before my last surgery. I have had other surgeries so new scars weren’t an issue for me. All the body image concerns came to the surface after I gained 25 lbs, feeling like an old lady and not having the same sexual response I used to. At times I resent my body for failing me so much.
What are some lifestyle changes you’ve made since your diagnosis?
I don’t drink alcohol much because it triggers hot flashes. I was never a big drinker anyway, but this now plays a larger role in my decision to enjoy a glass. Prioritizing how I spend my time has been the biggest change. I’m now working on eating more holistic food and incorporating increased physical activity.
Resources and recommendations:
Have you participated in any other retreats, conferences, programs, or support groups you’d like your cancer peers to know about?
- Gilda’s Club Toronto – 20s/30s Support Group
- Wellspring Toronto – for spiritual support (i.e. Reiki)
- Specific to my cancer, I belong to a private Facebook group for Leiomyosarcoma Direct Research Foundation. The women there have offered INCREDIBLE support and education around this rare cancer.
- Pink Pearl Foundation provides programs and retreats for young woman facing any cancer diagnosis. I’ve attended a mixer and their fundraising gala, but not a retreat.
- ELLICSR at Princess Margaret Cancer Centre offers programs, seminars, and survivorship clinics.
Stay in touch:
What would you like to say to other young adults dealing with cancer who are reading this profile?
You are not alone! It took me six months to finally reach out to the YACC online group, and it was the best decision I could have made. Receiving a diagnosis is overwhelming and isolating, but know that there’s a whole family waiting for you by joining the YACC community. Whether you want to vent or ask questions, we’re here for you. You don’t have to go through this alone.
Friends and family won’t always understand what it’s like living with cancer as a young adult, but remember that they love you and are doing their best with what they have. And for those who just can’t be supportive, it’s okay to focus on yourself. YOU are your priority.
Are you interested in helping others facing cancer challenges? If so please let us know how you can be contacted.
If you are interested in connecting with Dawn, please email email@example.com and we will forward on your message.