Bladder Cancer Awareness - How Do We Spread the Word?

Most of us can probably say that we had never heard of bladder cancer before being diagnosed. Why is that? We constantly hear about other forms of cancer - breast, colon, prostate, pancreatic  - why is bladder cancer a secret?

Celebrities can get cancer too. Did you know that celebrities Frank Sinatra, Jack Lemmon, Telly Savalas, Andy Williams, Dominick Dunne, and Hubert Humphrey all died from bladder cancer?

I will bet that very few people knew this, including myself. 

Celebraties sharing their cancer experience

While I understand that celebrities and well-known people like to keep some things private, I often wonder if bladder cancer research would be further along if these famous people shared their stories and talked about a subject that seems to be taboo.

When celebrities share stories of illnesses, it often seems to have a positive financial impact. All of us on this site realize and understand the tremendous value of sharing our stories, reaching out to those who have walked this walk, and asking to help, for suggestions, to find out what worked for others and what may not have been successful.

Sharing our stories and experiences definitely can help.

A prevalent disease

Clearly, we need to greatly expand the number of people aware that bladder cancer is a prevalent disease. How is it then that so many of us heard of bladder cancer only due to our diagnosis? This must change, and we are the best people to help facilitate this change.

Other types of cancer are well known - why not bladder cancer?

Why not bladder cancer

I have my own opinion about this, and fortunately for all of you, I will share it. It seems that we need someone who either has a large group backing them or a celebrity to openly state they have cancer and preferably before succumbing to it. 

Patrick Swayze put awareness on pancreatic cancer. The Susan G Komen Foundation keeps breast cancer in the news for events all the time, it seems. Colon cancer now has a blue and white box that dances across the floor in ads to remind you to be tested.

What about bladder cancer? What will it take to get the exposure that we need and deserve?

Sharing our stories to help others

First of all - we need to share our diagnosis with others. I have found that the vast majority of those who I tell my story respond with, "What? Never heard of it." I also have found that once they learn I had bladder cancer, they soon become aware of a friend, relative, or casual acquaintance that has or had bladder cancer. 

While I know that not everyone is comfortable talking about our cancer, it does seem to have an impact. It is important to get the word out - there is a cancer that people do not talk about but need to. 

Did you know that approximately 82k people are diagnosed in the US with bladder cancer annually, and 16k lose their lives to this disease each year? Those are statistics that need to be shared.

Talking to your doctor

Ask your doctor to post a signage stating the first signs of bladder cancer: blood in the urine, increased frequency in need to urinate, and bladder spasms.

Ask if a routine question can be added to the general list for each patient visit. Something like, "Have you had any changes in your urinary habits since the last visit?" How many of us wish that our doctors asked these questions? Well, we need to continue to request that they do. It could make a significant difference to a patient if their cancer is diagnosed earlier rather than later.

Maybe they do not have cancer, but another medical issue that needs attention. While every symptom may not be cancer, of course, a simple test or watching the patient more closely might be in order. The earlier this disease is caught, the better the success of available treatments.

I recently saw a segment on the national news about a very young woman diagnosed with cancer that normally strikes older people. It made me think that bladder cancer has been described as a disease that impacts older people more often also.

We all probably know a much younger person who has been diagnosed. I know a young man in his mid 20's who was diagnosed 2 years ago. We need this media attention too!

Reaching the masses

I have often considered sending an email to each national news station on the first of May to ask that bladder cancer have some "recognition," as May is Bladder Cancer Awareness Month. Maybe we should all do that and see what happens - just a thought.

I would love to see what thoughts or suggestions all of you have on reaching the masses about our rarely discussed disease. Thank you for sharing your stories to help others!