Hi, I’m Clare Stat #MakeMeCount

Was breast cancer or cancer part of your family or community story growing up? Was it in the background?

 

It felt like I was one of the first people in my community to receive this diagnosis but in hindsight I don’t think I was. One thing about cancer and health in general, though, with the cross section of being Asian is that it’s not really talked about. I acquired my non-visible disabilities at a really young age. The Asian community doesn’t seem to talk about emotions and feelings. Culturally, people are less verbally expressive and tend to not share personal details, particularly not shame. So, when it comes to illness, we don’t talk about it enough. And I was asked by my healthcare team when I was diagnosed if I had a family history of cancer, I wondered, “Do I?” I didn’t actually know. I then realized that my grandmother and my great grandmother (maternal) both had cancer and passed away from cancer, (late 80s and close to 100 years of age). But I didn’t know what kind of cancer they had (also due to language barriers).

 

So when my doctor asked me… I said no and definitely not breast cancer. When the Asian community, does talk, I think we only talk about good things. We talk about which University we got accepted into, graduation, then the great job we got, the marriage, the kids, and the house we live in. We don’t talk about the struggles in school, being laid off, the reasons for divorce, the kids we couldn’t have and the house we had to sell. We don’t talk about sickness, and we don’t talk about the difficult things. So yes, there is cancer in my family history. I can’t tell you which kinds of cancer exactly, but breast cancer was definitely not something that I ever thought I needed to be worried about.

 

Can you talk about when you were diagnosed and your experience navigating the system?

 

So I was diagnosed with breast cancer in 2018 and it took me a little bit longer to get to the doctors. Prior to any of this, I’ve been navigating the healthcare system since I was 7 years old. I didn’t do a great job of it on my own but I managed. My first major surgery was in 2016. I had just received a total hip replacement on my left side, and it was because I had something called osteonecrosis, the top of my femur died, and it took me a very, very, very long time to get the surgery.

 

As a teenager, I kind of just lived through the pain and for close to eight to 10 years before the hip surgery, it was really painful. In April 2017 it was the first time I was able to ride a bike a bike again. It’s such a vivid memory and I can still feel the wind against my face and the sun on my face, the excitement, and everything. It was just, super amazing. I couldn’t believe that I was moving by myself without a cane, and I was able to do the things that others were doing. I had big plans for myself. I was feeling on top of the world, and I wanted to travel everywhere too, I could travel with less pain, without my cane, without budgeting my energy levels, without careful planning and explaining what was possible and without feeling like I was holding others back. I was going to start my new life and I really wanted to do that.

 

I discovered a lump in February 2018, and I wasn’t sure what to do. I wasn’t ready to deal with more medical issues with my “newfound freedom.” I waited and my research told me that most of the time, these lumps are nothing. And I also thought breast cancer was not in my family. The information online at that time made it really seem like cancer is only a hereditary thing. It took me some time to rally and I finally booked an appointment in October. I was rushed through and received my diagnosis on November 1, 2018 – two years to the exact day of when I got my hip surgery done. By 2020, I had finished active treatment, surgeries, and radiation and thought I had put cancer and the healthcare system behind me. I thought 2020 was going to be “my year.” I travelled to Japan and suddenly couldn’t feel my legs. I was having major nerve issues, I got an MRI and the doctors told me that my spine issues could be causing the numbness, but also that they saw a 15cm tumour in my lower abdomen.

 

In October 2020, a surgery to remove the tumour (it grew to 21 cm) and a precautionary total hysterectomy, all the while trying to manage a second attempt to breast reconstruction since the first resulted in an OR infection and explant. The tumour ended up being benign, which was a relief, but then for seven months following my surgery, my incision would never close. I asked for help and was getting shutdown. I was at a medical clinic changing bandages everyday. I ended up begging a plastic surgeon from a different hospital who’d never operated on me before, and he stitched it up for me. It healed and I had six whole uneventful days before I learned that I needed more tests and it was not my routine check in with the oncologist. i didn’t realize it at the time because my oncologist told me we were going to change my medication. But then my pharmacist called me and in confirming my personal information said, “You have stage 4 cancer.” I told them, “No”, and we had an argument back and forth. I thought that that was a terrible way to find out that my cancer was back. And not just that it was back, but that it was metastatic and stage 4 and then my second breast implant ruptured that same day.

 

There are reasons why people don’t go to hospital sometimes, and it’s not just because a fear of the hospital, but sometimes it could just be fear of the way that you’ve been treated at a hospital. And I think that the way that I was treated for a lot of my autoimmune conditions, the way that I look, my quietness, the progressive disabilities, contribute a lot to this fear. It felt like I was not the “right” patient, or that somehow I was to be blamed for all my health issues.

 

 What comes to mind when you think about how your experience has been different for you due to your disabilities? 

 

The main thing that’s different due to disability is I’ve had a doctor once say that they didn’t care about my autoimmune conditions. Autoimmune conditions don’t kill you and the doctor was “here to cure cancer.”

 

I feel like you have to look at me a little bit more holistically to know that disabilities don’t define me, but they are a part of me. Here’s a really good example of that right now: I’m on a treatment. It appears to be working amazing for my cancer and I’m very, very thankful for that, but there’s a huge part of my inner guilt that I can’t even voice the fact that it’s emotionally killing me inside because my psoriasis and psoriatic arthritis is rampant. I can’t hold a pen in my hands and write for a long time because my hands hurt. And every single person that has known me for a while has noticed that when I sit for a while and I stand up, I am really stiff or if I stand for a long time, I’m uncomfortable too. My skin hurts and it’s unsightly.

 

Although my doctor means well, he shares that my tumour markers are good and we’re continuing with this treatment full steam ahead. It feels like nothing else matters. So when someone says that to me, it is really hard for me to tell them that I’m experiencing major joint pain, that my sleep is disjointed or that I’m physically uncomfortable every single day. I am grateful to be alive. I also know I have a part to play in self advocacy, but sometimes the words don’t come out.

 

Do you feel like disabilities are talked about in the breast cancer community?

 

I think it is left out but maybe not necessarily intentionally. Maybe people with disabilities who have a breast cancer diagnosis aren’t ready to talk about their experiences. Maybe I haven’t found the community yet. I don’t often see anyone with any types of disabilities talk about experiencing cancer. Some times I see people who have disabilities because of their cancer.

 

Also I am aware that I have a non-visible disability which means maybe others have a non-visible disability and we haven’t discussed it. I also find that our healthcare system isn’t one that’s holistic, period. So if I tell my oncologist that I’m having side effects that are triggering all my autoimmune arthritis, he tells me to contact a rheumatologist. But my rheumatologist isn’t super well versed in cancer, so he’ll tell me to contact my oncologist. Then I would need to bring a dermatologist in, and also being in Quebec, I don’t have a family doctor. It would be wonderful if they all just came together as a team that could have discussions about me, with me and to holistically treat patients.

 

What would you like to see change in terms of breast cancer data in the future.

 

Based on my experience, I would love for us to be able to understand how health and health conditions are connected to cancer. How disabilities and cancer impact people. What are the financial impacts? What are beneficial paramedical practices that could help a person manage better? What are the mortality rates, are they different from non-disabled people with cancer and why? Could knowing these stats help us uncover different ways to support people with disabilities better? How can we improve lives and how could these benefits possible benefit all people with breast cancer? l would love to see a more proactive approach to health. I would love to see a more holistic team approach, to have professionals help someone manage cancer from every which way they may need, to understand how to. In terms of my disability, I wished that my oncologist could be the captain of a team that included all the specialists to come up with a better care plan for someone like me, that considers me as a whole person.

 

There are other factors too, like, your income levels, for example, can dictate the things that you eat because of financial means or access to and understanding of nutritionalinformation. There’s also where you live and the condition of your home. Or if you were coming from a single-parent household, how that impacts health outcomes, etc. When it relates to your job, such as the number of hours you spend working, the type of job you have, the stress and pressure and what, if any, environmental exposures you may experience. It would be so valuable to better understand all of these intersections as they roll down. I only know what I know today and what I wonder about. I don’t think change is too late at any point in time. I want to equip people with information so they can start figuring out more for themselves proactively. Maybe in the future, if somebody else who is Asian and might not know their family history either, can at least rely a little bit on the data that we could provide.

 

When we talk about social determinants of health, what are the main things that come to mind for you?

 

One of the big things for me was having enough money to pay for certain things. There was a time where I couldn’t afford certain things that I now can. And the reason I now can is because I earn enough to be able to manage much more. Money doesn’t buy you happiness but it can buy you comfort and it can help you keep your head above water. Some of the key things that I can afford today are pretty basic when you think about what we are going through such as a therapist, an osteopath, athletic therapist and acupuncture.

 

Looking back 4 years ago, I was working around the clock and was barely able to pay for the things I knew would help me feel better. Money used to stress me out so much that if something financially hindering would happen, it would push me to the edge and I’d cry so deeply that it would haunt those that are close to me to witness it. That has to have a toll or impact on your health. I think about people that are living in poverty or below poverty line because they have a disability. How the decisions they have to make, especially about their health – having to choose between paying for transportation to the hospital or nutritious food, are huge stressors and barriers that would negatively impact your health.