Marcelle first noticed teeth-like marks on her tongue in 2018. She initially consulted her dentist and they decided to try a mouth guard and see if it cleared up. After 3-4 months of worsening growth, the dentist referred Marcelle to an oral specialist. She waited for a couple of months before calling and finding out that the referral never went through. Almost a year after her first symptoms, she saw an oral specialist, who suggested various creams and treatments. The growths kept increasing but a biopsy suggested they were benign. She went through multiple specialists before seeing an oncologist who suggested laser surgery.
Marcelle had two laser surgeries, both of which left her unable to speak for several weeks. Meanwhile, the growths kept coming back even more aggressively. She had to wait another few months before the oncologist performed a glossectomy, removing part of her tongue. The healing process after this surgery was very difficult for Marcelle. She also noticed her neck was painful and swollen, but she was told it was to be expected.
After 3 months the swelling was still concerning, and she was scheduled for surgery on her neck. This was during the COVID-19 pandemic, so Marcelle was on a waiting list because they believed her surgery wasn’t urgent. However, by September 2022, she had intense swelling on her collarbone and back of head. After calling the doctor, she was scheduled for emergency surgery that week. The surgery involved removing 34 lymph nodes. She was told the incision would be a few centimeters in length, but it ended up being around 50 cm long. The biopsy on the lymph nodes led to Marcelle’s cancer diagnosis in September 2022, almost four years after her symptoms first appeared. It was classified as unknown primary, stage 0, because the cancer that spread to her neck was not the original location. She was scheduled to undergo 6 sessions of chemotherapy and 30 rounds of radiation. Marcelle only completed 3 sessions of chemotherapy as she had a severe allergic reaction, but she was able to continue with radiation.
A few months later, she found a lump in her breast and her thigh. A PET scan and CT scan both came back as normal. She showed her family doctor the lumps and was told that the one in her breast was worrisome. She had ultrasounds and biopsies, and within 10 days she was diagnosed with stage 2 breast cancer – completely unrelated to the first cancer. She immediately had surgery to remove the lump in her breast and began radiation therapy a month after. She originally needed 15-20 rounds of radiation, but they reduced it to grade 1 cancer and decided 5 rounds were sufficient. She is cancer-free at the time of onboarding (June 2024).
“When I first noticed these markings on my tongue, the dentist just got me to wear a mouth guard. The markings got worse, ranging from the teeth-like marks to bruising or blistering.”
“I was told that my dentist would refer me to an oral specialist, and I should just wait to get a call. After a couple months of waiting, I went back in and found out the referral never went through. It was now almost a year from the original symptoms.”
“I went through four different specialists until I actually got referred to a cancer specialist.”
“I always knew I was going to end up being diagnosed with cancer, even though it took almost four years. With all the surgeries and treatments, I felt like it was just a matter of time.”
“I couldn’t speak for a few weeks because of the damage from the laser treatment. Not even six weeks later, I saw it growing back even more aggressively. I waited awhile again to see the specialist and we decided to try another laser treatment almost a year after the first one. After the second laser treatment I saw it growing back aggressively within two weeks of recovery.”
“I had to wait another few months until everything healed, and then the oncologist said that we were going to try a glossectomy, which meant removing part of the tongue. The mass had grown to around half of my tongue at this point, and it was very difficult to talk so we immediately did the surgery.”
“The third surgery that I had was very traumatic, not only for me but for my whole family as well. I didn’t comprehend the extent of the surgery. When I looked at it, I was horrified. It was very traumatic, and I basically shut down. I didn’t want to talk to anybody. The amount of pain was horrifying. That was my third surgery and I immediately felt something was wrong in my neck. I was in a lot of pain.”
“Three months went by again and the swelling in the neck was still massive, so we decided to do a biopsy in the neck area, and because everything just takes so long, I waited another two months. The biopsy results came back as abnormal.”
“When I found the lumps in my breast and my thigh, I was so worried it was the same cancer that had just spread to other parts of my body, but thankfully that wasn’t the case. It was two completely different cancers that had no association with each other. I am a rare case.”
“I was booked within 3 weeks for surgery after being diagnosed with breast cancer. Everything moved fast as I was persistent on not having any more delays.”
Wheels of Hope
Marcelle used the Canadian Cancer Society’s (CCS) Wheel of Hope program to get rides to various appointments during her cancer experience. Marcelle lived 25 minutes away from the hospital where she was receiving treatment and needed assistance as she did not have access to a car or somebody to drive her when she was unwell. Marcelle selected the dates that she would need a ride and found out that one of the drivers lived right in her neighborhood. At one point, Marcelle could not walk safely due to the intense treatment, and the drivers would help her in and out of her appointments. One of her favorite experiences from Wheels of Hope was travelling with other cancer patients. Despite needing to distance themselves and wear masks, she found comfort in being in the presence of others going through cancer and sharing stories with them.
“Once I had done an initial intake at the Cross Cancer institute, I mentioned that I needed financial assistance. The support worker helped me file an application for financial help, but it got refused because my medical report was not submitted at the same time.”
“Eventually they suggested the Wheels of Hope program and it was just perfect. I put in all my dates and my address, and funnily enough one of the drivers lived in my neighborhood. He would come pick me up every morning and bring me back home. All the drivers were amazing.”
“Depending on the time that you select with Wheels of Hope, they may have other patients in the same vehicle. Even though we had to wear masks and separate, the communication and being in the presence of other people while being able to share your story was awesome.”
“Knowing you’re not alone and that other people need support or a good laugh, it was fun. We would share stories and jokes; it was just a great connection.”
“Wheels of Hope was wonderful. When I had chemo every week and radiation every day for around 5-6 weeks, it was very helpful.”
“For a family, it is priceless because the support of the drivers and everyone involved is absolutely amazing. Their help was phenomenal.”
“From getting you to your appointments on time to getting you home on time, the drivers are just amazing. There was a point where I couldn’t walk just because of the weakness I felt. The drivers would help me in and out of the vehicle to get to the appointment.”
“Wheels of Hope is truly supportive in every way. It is a fabulous program for anybody experiencing cancer to have.”
Cost of cancer
Throughout Marcelle’s experience she faced the financial cost of cancer. During her treatments, Marcelle was unable to work for 2 and a half years because she was not physically capable. Marcelle emigrated to Canada in 1976 during the Lebanese Civil War, and fortunately she had a strong support network in Edmonton. However, during COVID-19 she was considered a high-risk individual. Thankfully, she was granted one year of paid medical leave, but once the year was over, her family did not receive any further financial aid. A large cost for Marcelle also came when she experienced rapid weight loss (80lb) from the effects of her treatments, leading her to have to buy an entirely new wardrobe as her clothes no longer fit. Having a family of 5, they faced out-of-pocket costs like regularly eating out when Marcelle could not stand the smell of food cooking in her home. She also faced costs for gas, parking and medications.
“I had to quit work because I wasn’t physically capable. I lost around 80 pounds, and when I lost all of that weight, I struggled to walk or regain my balance without feeling lightheaded.”
“I have been working for 8 months now, but before that I was not able to work for around 2 and a half years. I had to go on medical leave when COVID-19 hit in 2020 because I was high risk. Thankfully I was given a year of paid leave, so when I had my first and second surgery, we were financially okay.”
“Once my year was over, there was no financial help. That’s when I went into the rest of my surgeries, and it was brutal. Covering the medical aspects of medications and treatments, parking, travel, the eating out with five people in our family. It was very expensive.”
“It was very difficult for my husband to keep his work going full time along with our four kids. Our kids are all in their teens, so they don’t need hands on care really, but it was very difficult to keep the family unit functioning as normal as possible.”
“Another thing was with losing all that weight I had to get new shoes, new clothing and just new everything.”
Emotional impact
As well as the financial burden of cancer, Marcelle experienced the emotional cost that cancer had on her and her family. It was very difficult for Marcelle to wait 4 years to get a diagnosis, experience severe pain and dramatic physical changes like weight loss and stay positive for those around her.
“After treatment I started work again. It’s been very difficult to go through all the adjustments and to recreate whatever I thought my normal life could be like. My life is just not going to be how it was before.”
“Every aspect of a person’s life changes when they have cancer. It is very difficult. To deal with the physical, mental and emotional side of things, it is so hard to keep yourself going every day.”
“I am married and have 4 kids. I must try and always be positive in front of them because this has been very traumatic for everybody – everybody around me is affected in some way or another. Trying to be strong and positive every day is extremely exhausting.”
“There’s a lot of issues that I still must overcome. Your life is forever changed once you go through something like this. Going through cancer twice in the same year, it really takes its toll.”
“Accepting all the physical changes has been difficult. People’s reaction to seeing me has been a hardship to overcome. People will cry when they see me because I’m around 80 pounds lighter, I’m not physically what I used to look like, and I can’t talk like how I used to or for as long.”
“I am still mentally very strong. I watched my dad go through cancer and was the one who was with him throughout all of it. But you can never understand someone else’s story unless you go through it. Now I have gone through this, I completely understand everything that my dad went through, and why he was in a depressed state.”
“My kids have gone through a lot these last few years: seeing me with a feeding tube, lose weight so rapidly, not being able to speak, it was very emotional for them. There were brief moments of hope that things like the feeding tube would help but instead things would just get worse, and those hopes were crushed.”
“I stopped accepting visitors. I stopped talking. I couldn’t physically talk for about 7 months. I didn’t want to see people’s pain when they were looking at me and crying, I couldn’t handle it. It was difficult because we are a very tight family, but I just had to let go of everybody.”
“I withdrew more and more as I was trying to be positive for people and trying to make them feel okay, because I was distancing myself as I knew I was not okay.”
“I just need positive vibes so anybody that calls me now knows that if they are going to cry on the phone, I will hang up.”
“My energy levels are lower now. I used to be very high energy and on the go all hours of the day, with four kids I was doing what they needed while also working full time. Now it’s like one hour and I’m burnt out. I just can’t function, and everything has been quite an adjustment.”
“I reached my breaking point. To move forward, you must accept things and you must get help for some things.”