Why does advocacy matter? Well, because medical professionals aren’t gods. Are they capable of some pretty extraordinary things – absolutely. But they don’t know your body like you do. They can’t feel that feeling you have, when you know something isn’t quite right. It could be a little something or a big something, but you can sense it’s there. And we all know that it can be scary fronting up to find out what that something could be.
So when you’re faced with skepticism, criticism or simply a lack of care, persevering to find an answer can be not only exhausting, but also leave you seriously questioning yourself.
In my case the symptom I experienced pre-diagnosis wasn’t significant. My discharge had changed in consistency and odour. While this was something I hadn’t previously experienced, I assumed things were just ‘out of balance down there’ and would right itself pretty quickly. After a few weeks and starting to feel like I was starting to become incontinent at 29 (that was fun), I made an appointment with a GP. My pap smear (now cervical screening) result came back negative and what followed was a series of tests that continued to provide no answers. Keen to sort things out, I would discuss with my GP the next steps depending on the outcome of each test. On a number of occasions I was baffled when my GP asked what I thought we should do next????
In retrospect I wish I had insisted sooner on a referral to a gynecologist. I trusted the process. I assumed the doctor knew best and I didn’t want to appear difficult or pushy. It was only at the insistence of a concerned friend that I requested the referral. This was after several months of tests without answers. I wasn’t rushed into the gynecologist because my pap smear result was negative after all. Within moments of commencing the physical exam, I’m talking a maximum of 5 seconds (I kid you not), the gynecologist told me with a concerned look that something didn’t look right and recommended we do a biopsy that day. 48 hours later I was diagnosed with cervical cancer.
This was also after I was told by a medical professional that ‘I was too young to have cancer’.
Unfortunately, my story isn’t unique, and quite possibly familiar to you, or someone you love. There’s been a fair bit of media coverage in recent years about women’s health and experiences like mine. The stories are heart wrenching, but I’m so glad that a light is being shed on what is a systemic problem. It’s also one in which some medical professionals report having unintentionally perpetrated as a result of their training and the inherent design of the medical system. There are of course those who need a wakeup call and remember perhaps why they got into the profession in the first place. It’s an extensive problem and one that will take time to unpick, and course correct. I’m a firm believer that through engaging with patients such as myself, the health industry can gain insights and highlight opportunities to improve the patient experience and outcomes, from the investigation stage, through to treatment and recovery.
A key component to prevention is education and awareness. Cervical cancer awareness week in Australia runs from the 10th to the 16th of November. Led by the Australian Cervical Cancer Foundation, their focus is on education and awareness of the cervical screening process and HPV vaccine. The theme for the 2024 campaign is 1 + 5 = cervical cancer protection. The 1 refers to the single dose of the HPV vaccine that is free to all people under the age of 25. The 5 refers to the cervical screening test every 5 years for women and those with a cervix between 25 and 74 years of age. The campaign has received some criticism with many highlighting that HPV is not the only cause of cervical cancer. The World Health Organisation reports that more than 90% of cervical cancer is caused by HPV. Guess what, I was one of the ‘lucky’ 10%. Once I was diagnosed my original pap smear sample was reviewed and what do you know, the cancerous cells were present, and my sample was incorrectly assigned a negative result.
What are the odds? Well anecdotal feedback at the time from a medical professional was that they see one young woman a month in my position!!!
There has been concern shared that the screening process is flawed for this exact reason. Speaking from experience, their concerns are valid. I’m in complete support of education and awareness, as I said, information is power! But more can be done. So what is the answer when you’re dealing with a system that has definite room for improvement but won’t ever be perfect? There is only progress, not perfection. Well, what I know to be true, is that no one knows your body like you do. Listening to yourself and your intuition is key. If you think something isn’t quite right, seek answers as a priority. If the answers you get don’t seem to add up, or you’re made to feel like you’re exaggerating things and that you should just go away…stand your ground and always advocate for yourself! And if you ever feel tired and unsure in the pursuit for answers, lean on friends and family to provide the support and energy you need to stay curious and get a result.
A tool that I ended up using to help me advocate for myself, was bringing a family member or friend with me to my appointments. I would ask them to be my second set of eyes and ears. It was common to feel overwhelmed and at times in shock. A lot of information was provided that I struggled to retain. My appointment buddy served as my memory and helped me with clarity when I needed it the most. Another line I would hear regularly when I asked for clarification or further information was… ‘now don’t worry about that right now’. Let me be clear, in these situations I wasn’t in a panicked state when asking these questions. I wasn’t over analysing or being too emotional or irrational. I was simply trying to inform myself so I could make clear decisions based on all the information I had available for my future self. These were choices that would impact the rest of my life.
So, seek clarification, repeat the information back to ensure your understanding is correct. And if in doubt, bring in back up. A person who you can trust to show up and support you. It’s also a good idea to discuss your appointment ahead of time with your support person so you have a game plan. They should know what information you’re looking to obtain as well as how they can best support you at the time. This can also be a challenging time for our friends and family, and they can often feel unsure of what the right thing to do is.
If you’d like to access more information about cervical cancer, I suggest checking out Cancer Council QLD and The Australian Cervical Cancer Foundation.
