15 January 2024 .Sidney , Australia

Karen’s bladder cancer journey

Bladder Cancer is the 10th most commonly diagnosed cancer in the world with 570,000 people diagnosed each year. Around the world, the 1.7 million people living with the condition have their own journeys and personal bladder cancer stories to share.

Below we are honoured to share the bladder cancer journey of Karen. Bladder cancer stories are a powerful reminder of the impact of bladder cancer and also help raise awareness of bladder cancer and highlight the urgent need for new treatments and research, improved care and support for those living with bladder cancer.

Karen (Female) lives in Australia and was diagnosed in 2022 at the age of 54.

Can you tell us a little bit about yourself and your experience with bladder cancer?

As a Nurse, when I received the diagnosis, I found that I was able to handle the situation relatively well, drawing on my professional experience. However, the news understandably took a toll on my family and friends, causing them considerable distress. Despite this, I had to muster the strength to persevere through it all, especially because I am a single parent to my then 12-year-old son.

Navigating through the challenges, I adopted a “soldier on” mentality, choosing to continue with my daily responsibilities and routines. I maintained my commitment to work, except on the days of surgery.

Tell us about how you received your bladder cancer diagnosis? 

It all began when I noticed blood in my urine persisting for almost 12 months. It took some persistence on my part to convince my GP to refer me for tests. A pelvic ultrasound revealed a sizable growth, and this finding was later confirmed through a CT scan. The urgency of the situation led to surgery for the resection of the bladder cancer within a week of the diagnosis, coincidentally taking place the day before my 55th birthday.

Fortunately, I consider myself very lucky to have had valuable connections in the medical field. I received support from a great urologist and an outstanding oncologist, which played a crucial role in my journey.

As for how my life has changed due to my experience with bladder cancer, I’ve always approached life with a mindset of living it to the fullest, as if there’s no tomorrow. However, this journey has given me an even deeper reason to cherish every moment and appreciate the value of life. It’s a perspective that has become even more profound and meaningful for me.

Tell us about the symptoms you have experienced and how you dealt with them?

I am currently on a 12-month clinical trial. Each treatment session poses its challenges, as I contend with bladder spasms, heightened urgency, and increased frequency. These symptoms can be quite demanding both physically and emotionally.

I’ve found it helpful to stay connected with my healthcare team, discussing my experiences, and seeking their guidance on managing the symptoms effectively.

Something quite challenging is explaining these symptoms to my 13-year-old son. As a parent, I’ve been working to find age-appropriate ways to help him understand the changes in my health and the impact they may have on our daily lives.

Tell us about your experience with bladder cancer treatment? How long did it last? Did you experience side effects? 

Currently, I’m still in the midst of my treatment journey, and while the prognosis is positive, it often feels like a continuous whirlwind of tests, consultations, and visits to the clinic for treatments and cystoscopies.

The treatment process has presented its own set of challenges. Each session is quite demanding, marked by bladder spasms, heightened urgency, and increased frequency, making it physically and emotionally taxing. These side effects have been a significant aspect of my treatment experience, requiring careful management and support from my healthcare team.

In addition to the challenges related to bladder cancer treatment, I encountered unexpected health issues. I developed abnormal headaches and dizziness, prompting a referral to a neurologist. The diagnosis revealed atypical migraines, for which I am currently on medication. Alongside these, insomnia became another hurdle that I had to navigate.

What advice would you give to others who may be newly diagnosed with bladder cancer?

If someone is newly diagnosed with bladder cancer, my advice would be to maintain a positive mindset throughout the journey. Cancer can present its share of challenges, but cultivating a positive outlook can play a significant role in coping with the ups and downs.

Trust your instincts and advocate for yourself. If you ever feel that something isn’t right or have concerns about your treatment, don’t hesitate to speak up.

Remember that you’re not alone in this journey, and seeking support from friends, family, or support groups can make a significant difference. Connecting with others who have faced similar challenges can provide insights, comfort, and a sense of community.

What is the most helpful thing someone can do for themselves today, if they are newly diagnosed? 

If someone has recently received a diagnosis, one of the most helpful things they can do for themselves is to take the time to process and absorb what is happening. It’s completely normal to feel a range of emotions, and allowing oneself the space to navigate through these feelings is an important part of the healing process.

In addition to personal reflection, seeking support is crucial. Don’t hesitate to lean on friends, family, or even support groups who can provide understanding, empathy, and valuable perspectives. Accepting the offers of help from those around you can make a significant difference in easing the burden that often comes with a new diagnosis.

I realise that I may not have fully embraced the support available to me. It’s okay to lean on others, and it can be a source of strength during challenging times.

Have you reached out to other bladder cancer patients or been part of a bladder cancer support group? 

While I haven’t joined a formal bladder cancer support group, I did take a step towards connecting with others who share a similar journey by joining a Facebook group.

I participated in the bladder cancer walk in Sydney in May, accompanied by 12 of my family and friends, which turned out to be a wonderful experience. It provided an opportunity to meet some genuinely lovely people and share stories and support.

Read more bladder cancer patient stories from around the world

Are you or your loved one affected by bladder cancer? Your stories can help others facing a bladder cancer diagnosis and help bring awareness to the disease. Please share your journey and fill in this form. 

If you are looking to learn more about bladder cancer, on our bladder cancer information pages or contact with our member organisations closest to you.

If you have any questions, please get in touch with us at info@worldbladdercancer.org 

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