Three Ways Bladder Cancer Patients Can Be Their Own Self-Advocates

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How can bladder cancer patients become their own self-advocates? In the “The Importance of Self-Advocacy in Bladder Cancer Treatment” program, expert Dr. Shilpa Gupta from Taussig Cancer Institute shares three key ways that bladder cancer patients can take a more active role in their care.

1. Learn When to Speak Up for Yourself

Since bladder cancer patients know their symptoms and treatment side effects best, they are their own best advocates. Make sure to report all your symptoms and treatment side effects – whether you report them at an in-person appointment or online via MyChart messaging or some other electronic method. Communication about how you’re feeling is vital so that treatment adjustments can be made to optimize your quality of life and health outcome. You as a patient should also feel confident to communicate your care expectations to your doctors and to let your care team members if you feel like your questions or concerns are not being heard or no action is being taken in response to them.

2. Know When to Seek a Second Opinion or Specialist

Current bladder cancer care frequently involves a multidisciplinary team that coordinates on care of the patient. Work together with your healthcare team member to determine your treatment goals, treatment options, and ask questions if you want to learn about additional treatment options. After you feel comfortable that you have gathered enough treatment options and second opinions for your care, then discuss your treatment options with your bladder cancer care provider to determine the best treatment plan for you.

 3. Seek Out Credible Resources

Bladder cancer patients can take actions to further advocate for your best care. Educate yourself about your condition by reading credible online resources like the Bladder Cancer Advocacy Network, bcan.org. This is a highly recommended resource for bladder cancer patients created by bladder cancer patient advocates – along with the Bladder Cancer Empowerment Center on the Patient Empowerment Network website.

By taking a more active role in your care, bladder cancer patients can help determine the best treatment plan for optimal quality of life and health outcomes.

Male Bladder Cancer Survivor…A Diary Entry

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Real patient experiences shared privately at www.TreatmentDiaries.com.  Read more, share if you like or join in the conversation.  Making sure you feel less alone navigating a diagnosis is important.  Connecting you to those who can relate and provide support is what we do.

I was diagnosed with terminal systemic metastatic bladder cancer in 1991. I was given 3 to 9 months to live and sent home to get my “things” in order. The doctor recommended that I take a cruise! This was after bladder cancer was found in 1990, treated surgically twice, and I was told all was fine.

Fast forward to 2011.

I am working in Lebanon as a police trainer after serving 3 1/2 years training police in Iraq.

Since it has been a “few” years since my initial treatments, I have lost much of the details I once knew so very well. Since my cancer bout, I have lost my father and brother to cancer, among many friends and other family members. Only God knows who dies and who lives but I know what the doctors did to me that the others didn’t have the good fortune of having done to them and I credit that to my good health, cancer free status and living life large. It was excellent doctors, with excellent medications guided by Gods hand and the experimental High Dose chemotherapy that saved my life. It took me six months to fight the disease, but after that it was all downhill. I went back to work as a deputy sheriff and completed another 10 years for a 27-year retirement. I worked a couple little jobs before going to Iraq as an International Police Instructor and I have never slowed down.

I know that the decisions facing ever cancer warrior are daunting. I know that had I been given the option of removing my bladder, I don’t know what decision I would have made at the time. However, being fortunate enough to have hindsight, it would have been the best course of action for me. I wasn’t given that option and was told after having undergone surgery twice and a session of mild chemo each time, I was cancer free and sent on my way. We of course must believe our doctors and want to believe we are cancer free, but thinking back…. my bladder was completely full of cancer although “they said” it did not permeate the bladder wall. Obviously, it had or did, and circulated throughout my body. I had bladder cancer on my lung, behind my heart, inside my left femur as well as other places. In fact, that was how I learned that the cancer was systemic. When the cancer was flowing systemically, I felt no pain but when it permeated my femur and ate away about 4″ just above the knee, I had pain. I didn’t relate it to cancer in the beginning and my doctor fed me pain pills until I could no longer tolerate the pain. That’s when I learned that I was terminal and the rest is now history.

I hear lots of people saying to listen to their doctors, do what their doctors say, but I am the first to caution about putting too much faith in your doctors. Consider what they know, but it’s your life, not there’s and if it doesn’t make sense, then it’s your duty to research and engage in frank open and meaningful dialogue with your doctors. Life goes on and it is a minor inconvenience to give up your bladder compared to the alternative.

My prayers are with all of you fighting cancer. It is a nasty terrible disease but NEVER SURRENDER and hit it HARD. This is not a time to handle this disease delicately. I underwent three sessions of High Dose chemotherapy. It was difficult, and experimental, but it sure beats living for 3 to 9 months even if I had taken the cruise….and by the way…in early 2006 I took a 3-week cruise to Hawaii anyway!

From the Diary of a Bladder and Prostate Cancer Patient

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This diary entry from our partner, Treatment Diaries, is from a man diagnosed with bladder and prostate cancer in 2000.

Diary Entry:

A year ago, my life changed significantly…I was diagnosed with stage 3 bladder cancer. Later it was determined prostate cancer had also joined the party (need to limit those medical malady invites).   The prior 12 months allowed me to  experience (against my better judgement) life’s highs, lows and a great deal of uncertainty. But with support of friends, their prayers, a positive mindset, humor, access to an incredible medical staff, and an extremely supportive wife, I’ve continued to stay upright.  Manage to stay upright despite; 12 rounds of chemo (Cisplatin sucks), bladder removal/reconstruction, losing 30 pounds in 2.5 weeks post bladder surgery, an inability to taste food during the holidays (not to mention I couldn’t drink), a dreadful winter, multiple catheters and pills, lots of pills.   Now that I think about it….I didn’t have a good time.

This week my last three month consult was completed. All the news received was the best I could hope for….no indication of cancer at this time. Now I am no longer a patient, but a patient/survivor who should share his experience with others. To all of you who posted to my diary…..THANK YOU!!  I can only hope to do the same for others!