How to Live Well With Bladder Cancer

5 Tips To Empower You During This Difficult Journey

Support is Critical During Cancer Treatment
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Whether you have just been diagnosed with bladder cancer, are about to embark on treatment for it, or are a bladder cancer survivor and undergoing monitoring for cancer recurrence, you are likely experiencing some anxiety and sense of unease.

To give you some peace of mind, here are five tips to guide you through your bladder cancer journey.

Gain Knowledge About Bladder Cancer

Knowledge is power and there is no exception when it comes to understanding your bladder cancer diagnosis.

That being said, bladder cancer is a particularly complex disease, so reading about it may seem overwhelming. This is normal, as there is a lot of information to digest.

If you do find yourself getting bogged down with the nuances, take a step back and write down your questions or sources of confusion. Then, be sure to bring these questions or concerns to your next doctor's visit, or ask your doctor if there is a way to contact him or her through email or a health portal.

In the end, you should gain knowledge to your satisfaction—your goal is to be an informed patient so you can make good decisions, not be an expert.

Prepare for Your Appointments

Preparing yourself for your many doctor visits and tests is critical. Following these steps can help your appointments go smoothly:

  • Record all your appointments, tests, and surgery dates in a calendar.
  • Arrive on time (if not a bit early) to your appointments and bring a partner or trusted loved one.
  • Bring a list of all your medications (including vitamins or over-the-counter supplements), allergies, medical problems, and family history to each medical visit.
  • Carry a notebook of questions and concerns around with you and periodically write in it when another thought pops into your mind—remember, anything goes here, every question or worry is worthy.
  • Investigate financial issues related to your health care, so you can properly budget.

In addition, try not to feel overwhelmed by the sheer number of doctors you will see.

Here is a quick breakdown for you, so you can best understand each doctor's unique role in your care:

  • urologist (a surgeon who performs your bladder cancer removal and monitors you with cystoscopy)
  • medical oncologist (a doctor who treats cancer with medicines, like chemotherapy)
  • radiation oncologist (a doctor who provides radiation therapy)
  • pathologist (you will likely not meet your pathologist, but he or she is the doctor that looks at your cancer cells under the microscope—his or her findings help dictate your treatment plan)

Other members of your team will likely include a nurse practitioner, physician assistant, psychologist, financial coordinator, and/or social worker.

Share Your Bladder Cancer Journey

Wherever you are in your bladder cancer journey, how and when you tell others about your diagnosis and/or experiences is wholly up to you.

For instance, some people may choose to detail their doctor appointments and cancer treatments in a blog for others to read. Others may write in a personal journal or talk regularly with a close friend.

Still others may dodge well-meaning questions from friends, family, and/or colleagues, preferring to keep their diagnosis private.

All of this is OK—being diagnosed with bladder cancer is a big deal. Telling others can be a tricky and delicate matter, especially when it comes to disclosing your diagnosis to family members.

Your children or other loved ones may want to protect you and take a front seat to your care, which is often well-intentioned, but can also be taxing and stressful for you. While it's good to file away their opinions, trust your instincts and your own diligent research. Move forward with the health care team you are most comfortable with.

Of course, seeking a second opinion is often a good idea and cannot hurt.

Seek Out Support

The physical and emotional toll of being treated for bladder cancer—surgery, chemotherapy, and follow-up appointments—can be draining, intensive, and very time-consuming. Everyone needs some help and support.

Be open to considering a support group, either an online community like MyLifeLine.org or Cancer Survivors Network or a group within your own community. Other means of support include seeing a professional counselor who has experience treating people with cancer. In fact, sometimes talking to a stranger is easier than opening up to a friend or family member.

Address Quality of Life Problems After Radical Cystectomy

For muscle-invasive bladder cancer, the standard of care is a radical cystectomy with urinary reconstruction. While treating the cancer is a doctor's main focus, it's important to address quality of life issues that will arise after the surgery, the two most common ones being:

  • Sexual problems
  • Urinary problems

Erectile dysfunction is a side effect with radical cystectomy in men, as the nerves that are involved in a man's erection are located at the base of the prostate, which is removed in a radical cystectomy.

In women, achieving an orgasm may be affected if the nerve bundles that line the vagina are damaged. Sexual arousal in women may be affected too if the clitoris loses some of its blood supply during surgery.

Discussing these worries with your surgeon is important, as certain techniques may be able to help avoid or lessen these problems from occurring.

Depending on the type of urinary diversion your surgeon and you decide on after radical cystectomy, there can be a number of quality of life issues that arise like:

  • stress of caring for the skin around your stoma
  • emptying your urostomy pouch (a small collection bag located outside the body) or putting a catheter into your stoma
  • sexual functioning with a urostomy pouch
  • medical problems that arise from urinary reconstruction (for example, urine leaks or blockages)

The good news is that all of these issues can be addressed, but may take some patience and resilience on your part. One solution is an enterostomal therapy nurse, who can teach you how to properly care for your stoma and the surrounding skin.

A Word From Verywell

While you cannot control many things related to your bladder (for example, your cancer may recur), there are things you can do. Remain as active as possible, eat healthily, avoid smoking, and take the time to relish in life a bit.

Sources:

American Cancer Society. 2016. Bladder Cancer Surgery.

Asgari MA, Safarinejad MR, Shakhssalim N, Soleimani M, Shahabi A, Amini E. Quality of life after radical cystectomy for bladder cancer in men with an ileal conduit or continent urinary diversion: A comparative study. Urol Ann. 2013 Jul-Sep;5(3):190-96.

McNeil, B. (2011). First Steps—I've Been Diagnosed with Bladder Cancer. In Gonzalgo ML (Ed), Patient's Guide to Bladder Cancer (1-8). Massachusetts: Jones and Bartlett Publishers.

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