Taking Control of Your Bladder Cancer Journey

Long ago in a galaxy far away, I was dealing with chemo for bladder cancer as a precursor to a full cystectomy and prostatectomy. I was getting the weekly doses (with every third week off) and going about my daily life. That included having lunch with friends now and then. Some friends I had shared by situation with, some I didn’t. Stigma around cancer below the waist Funny how cancer below the waist seems to have more social stigma than cancer above the waist. We talk about lung, throat, breast or brain cancer pretty easily. No one ever really hides those diagnoses. But for me anyway, talking about bladder cancer seemed a bit different. I really didn’t want a lot of people to know. No one at work for sure. Again, don’t ask me why; I’m just weird that way. I did share with family, of course, and with a very few close friends. Even some of my close friends I kept in the dark until they called to yell at me for not telling them after they heard about it from someone who said they wouldn’t say anything. (Note to self – people always talk.) "How do you process that?" But back to my story. I was having lunch with a friend, one I had told about my situation. During the lunch we were chatting about work and families, the normal stuff. We talked about my health and what the doctors were saying. Then he stopped and asked me, “How do you process that?” Meaning, how do you process hearing you have cancer, that you’ll need chemo, that you’ll need 8-hour surgery, that you may have to wear a diaper the rest of your life or have a bag attached to side? That is what he asked. My answer. And the answer 99% of people give. “You just do.” Yep. No magic. No special tricks. You just do. And that is because you don’t have other options, do you? You need to get up for work. You need to be there for your family. You need to go to the doctor. You just do. I think I'm still processing my cancer I think I’m still processing it. I still get mad some days that I can’t go 4 or 5 hours without worrying I might leak when I stand up. I still worry when I get a scan that they’ll tell me they see something on the image. I still worry. You never really stop processing. But you do move on. You do have great days. And days you leak. #Fact. You will get through it But like me. You will get through it. You will get better. You will be back to 99% of your old self, and if you’re really working it – 110% better because now you’re exercising when you hadn’t in the past, or you're eating better because this was a wake-up call. Don’t worry. You’ll process it just fine and you’ll adapt to your new normal. Because… You just do. [lead_gen showIfLoggedIn="0" campaign="shortcode_posts" source="site"] “The tumor board agreed unanimously that surgery is not an option,” the urologist told us. He didn’t make much eye contact so we understood that this was bad news but it was difficult to know how bad. When my first husband received a metastatic bladder cancer diagnosis, I didn’t know anything about the stages of cancer. I didn’t understand until I did a lot of reading on my own that the cure rate of Stage IV bladder cancer was quite low. Or that the median lifespan was about 14 months. This was before immunotherapies were available. And genomic sequencing was just starting. In 2013, platinum-based chemo was the standard of care. If that didn’t work, doctors typically guessed at a chemo combination and tried it. Getting a stage IV diagnosis hurts – badly Receiving a Stage IV diagnosis feels like being punched. If you get this terrible news, first, take a deep breath. Try to stay calm and do what’s in front of you in the moment. Keep in mind that immunotherapies are working miracles for some people. There are far more options than there were just two years ago. But you don’t have to pretend that everything is great. I know this is easier said than done because my first instinct was denial and deferral. (If I don’t make a big deal of it, maybe it won’t be real.) But this is big news. This is news that turns your emotional world upside down and could soon turn your outer world upside down, too. Ask for help, let people know how you’re really doing. They are often empathetic and want to help. But they can’t help if they don’t know there’s problem. Stay hopeful but also recognize reality Stay hopeful. It can only help you to feel better moment to moment. But don’t allow yourself blind hope. Recognize you have a serious illness. Set up an advanced directive if you don’t have one, prepare your will if you haven’t already. This isn’t morbid, it is good financial planning and a way to care for your family. Sick or well, this kind of planning is a good idea. Accept the good and bad news along the way You will likely get some good results from treatment and the cancer will disappear or remain stable for a while. This is terrific and you should savor it and enjoy life. Recognize, though, that bladder cancer tends to mutate and become resistant to a treatment that previously worked. This means you must stay one step ahead. Think about and research what the next treatment option may be. Hopefully, you won’t need it for a long time, if ever. But you will be ready in case you do. Cancer keeps us aware that we are alive and constantly changing. Your needs and your state of health are likely to change as the disease progresses. This is incredibly difficult if it limits your ability to do things you enjoy. Keep a list of the activities you enjoy that you can still do. Maybe you will also discover new activities. My husband took up painting when he couldn’t go jogging anymore. Wondering about how much time you have left It is also incredibly difficult to wonder how much time you have left. This is the nagging, gnawing, overarching question that will intrude upon your thoughts everyday. I found comfort in the realization that none of us knows how much time we have left. We only start wondering exactly how long we have left to live when we receive a terminal diagnosis. But the reality is, sick or well, anything could happen to any of us on any given day. This helped us both to embrace the idea that we must live now. Enjoy the here and now. This is easier to do when you don’t have a terminal diagnosis looming but it is more crucial than ever when you have received a diagnosed. No matter our state of health or our prognosis, life is lived moment by moment. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"],It is common for patients with bladder cancer to experience symptoms related to urination.1,2 Some of those urinary symptoms can be caused by the cancer, while others may be caused by cancer treatments. What types of urinary symptoms can bladder cancer cause? Between 80% to 90% of people diagnosed with bladder cancer experience the symptom of blood in the urine. Bladder cancer can also cause other urinary symptoms, called irritative bladder symptoms—in around 20% to 30% of patients. Irritative bladder symptoms include: Needing to urinate more frequently than usual Feeling pain or burning before, during, or after urinating Feeling the urgent need to urinate despite having a bladder that is not full Difficulty urinating despite a full bladder How can bladder cancer procedures and treatments cause irritation? Irritative bladder symptoms can also be caused by procedures used to diagnose and treat bladder cancer, especially those that involve a catheter inserted into the bladder through the urethra. Bladder cancer treatments such as intravesical chemotherapy and Bacillus Calmette-Guerin (BCG) intravesical immunotherapy can cause irritative bladder symptoms as well. Some patients with muscle-invasive bladder cancer require surgery to remove the entire bladder, after which the surgeon typically uses reconstructive surgery to create a new way for the body to store and pass urine. One option for reconstructive surgery is called a neobladder (surgeon creates a new bladder using a piece of intestine). Patients with a neobladder may experience the symptom of urine leakage or incontinence, especially while they are recovering from surgery and adjusting to the neobladder. How can urinary symptoms impact daily life? Living with urinary symptoms can be challenging, because they can have a substantial impact on a patient’s daily activities.2 For example, if you need to urinate frequently or feel the urgent need to urinate, you may find it embarrassing to have to excuse yourself repeatedly to use the restroom, especially in a professional or social setting. If you are socializing outside of your home, it can be stressful and difficult to have to search for a restroom in an unfamiliar place, or in situations where restrooms are hard to find, inaccessible, or crowded. If you are traveling by car or plane, needing frequent restroom trips can be particularly inconvenient. Urine leakage or incontinence can be especially uncomfortable and embarrassing. Patients may feel self-conscious or embarrassed if they need to wear and change an underwear pad in public or professional settings, or while traveling. Tips for dealing with urinary symptoms There are a variety of tips and strategies that patients with urinary symptoms can use to help lessen the impact of urinary symptoms on their daily activities.3-6 Frequent urination or urgency To help deal with frequent urination and/or the urgent need to urinate, for example, it may be helpful to reduce the amount of drinks you consume that contain alcohol and caffeine. Some people find that reducing their intake of other possible bladder irritants can help, such as carbonated drinks, chocolate, tomatoes, acidic fruits and juices, spicy foods, and artificial sweeteners. Pain or burning To help relieve the symptom of pain or burning during urination, it can also be helpful to avoid drinks that contain irritants, and to drink more water to help dilute irritants that you do consume. There are some prescription and over-the-counter medications that can be used to help treat painful urination, but be sure to talk with your healthcare providers before you start taking any kind of medication for urinary symptoms. Nighttime frequency To help reduce the number of times you need to urinate during the night, it can help to avoid drinking fluids in the evening before you go to bed. However, you should be sure to drink enough water during the day so that you stay hydrated. Urine leakage If you have the urgent need to urinate and you are worried about the possibility of urine leakage, it can be tempting to rush or run to the restroom as quickly as you can. However, this can actually make the feeling of urgency worse, which can make leakage more likely. Try to walk slowly and in control if you can. Some people also find it helpful to try to relax and take a couple of slow, deep breaths when they are feeling a bit panicked about their feeling of urgency. Incontinence Another way to help control frequent urination, as well as urine leakage and incontinence, is to strengthen the muscles around the bladder and the urethra. Pelvic floor exercises, also called Kegel exercises, involve tightening and then relaxing the pelvic floor muscles, which are the ones that you would use to stop your stream of urine while urinating. Start by doing a small number of repetitions, and an example Kegel exercise regimen would be to try to keep the muscles tightened for at least 3 seconds and relaxing them for 3 seconds, then increase the time to 4 seconds, then 5, and so on until you can tighten the muscles for 10 seconds at a time, and then relax them for 10 seconds. Ideally, you would work up to potentially being able to repeat these sets 10 times in a row, and you would potentially do the set of 10 repetitions three times per day. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"] It’s been said the once someone gets cancer, the whole family gets it. Truer words were never spoken. I guess in my case, I was fortunate enough to be diagnosed in January, so it gave my family a full year to adjust to the fact that I was sick, so when that first Christmas came around the mood wasn’t too somber. But there was a different feel in the air. I was thankful that I was able to celebrate From my point of view, the holidays presented a completely different perspective. I was so much more thankful that I was able to celebrate with my kids and grandkids, but I really wasn’t sure if this would be the last one. As positive as the medical professional were that I’d be around for many more, there was always the nagging doubt in the back of my mind that I wouldn’t be so lucky. We didn’t ignore the fact that the cancer was there, but we tried not to dwell on it all that much. I became very emotional when I spoke at the dinner table. Seeing the faces of the people I loved more than anything in the world all together was a mixed blessing. I was thankful they were all there, but I was also terrified that I wouldn’t be seeing them for much longer. It sounds irrational, but cancer does that to you. A noticeable change in my kids Leading up to the holidays there was a noticeable change in my kids. My daughter was terrified; she pulled back, and I had very little contact with her. My son was also scared but was reticent about getting too close to me. I understood their feelings, but it still hurt. But when it came time for us to gather for Christmas, we pulled together. My grandkids made it easier, too; they were too young to understand what was happening, and their joy and excitement about Santa and presents took the edge off the situation. Trying to put a positive spin on the situation I tried my best to put a positive spin on the situation telling the family I had no intention of going anywhere and that I would not allow my cancer to interfere with our lives. When all was said and done, we “got through” that first Christmas, and there have been seven since, each better than the last. Looking back on all those years, I would have to say having my family that close to me through the ups and downs, especially over the holidays, was crucial in my battle. A battle that I have won and continue to win. Merry Christmas, and Happy Holidays. [lead_gen showIfLoggedIn="0" campaign="shortcode_posts" source="site"] Living with bladder cancer can feel like holding your breath, never knowing what lies ahead or what the doctor might say at your next visit. We recently shared an article by BladderCancer.net contributor Jim Van Horne where he shared a first-hand account of his ups and downs with bladder cancer. His piece exposed the uncertainty that many live with— even after they’ve been handed a cancer-free declaration—because bladder cancer can vanish and reappear without warning. [native] There is no one-size-fits-all bladder cancer experience. The good news is that many who had the disease go on to live for many years, but leaving the stress of the disease behind is another matter entirely. When we posted Van Horne’s piece on the BladderCancer.net Facebook page, more than 100 of you commented. Here’s what you had to say. “I went through that for four years.” One of the biggest hurdles with bladder cancer is that there is no such thing as a ‘typical’ diagnosis. In other words, the progression of the disease or the time it takes your body to beat it are too hard to estimate. Life really becomes one day at a time, and one doctor visit at a time. The vigilance and patience required to deal with the disease and the treatments can be draining. But the upshot to it all is that many survive the diagnosis and enjoy far more time cancer-free than might be expected. “I went through that for four years. Now, I’m going on five with annual scopes being clear.” “I go for a scope tomorrow after four years I’m still cancer free.” “My mother lived 25 years with bladder cancer.” Family, friends and loved ones are right on that roller coaster, too. The journey that is bladder cancer affects our communities. Loved ones worry and get fearful and angry right alongside the person with the diagnosis. But it wouldn’t be called a roller coaster without ups as well, and thankfully, this condition often comes with good news and even better odds. “My mother lived 25 years with bladder cancer. I remember all those 3-month checkups and hospital visits. Ultimately, she had to have her bladder removed after 13 years, but then she lived 12 more years. She died at 81 of something else, so the checkups and treatments were worth it.” “What my mother had was terrible. The cancer went on to her lungs to brain. She faced pain a lot. My sister and I both have bladder problems. This disease is nothing to mess with.” “Tumors keep coming back!” Bladder cancer is one of the most persistent cancers, making it critical that survivors keep up with follow-up visits. The good news is that doctors can perform urine tumor marker tests and scopes to help diagnose the presence of any new tumors, so survivors can be proactive about their care. “After four years without new tumors, I was declared cancer free. They said my odds of new tumors, were about equal to someone who never had bladder cancer. (Bladder tumors come back in about 40% of patients, or so I was told.)” “Seven years for me, too! Tumors keep coming back!” “I try to be thankful because I’m still here.” It’s never easy to accept a disease that seemingly will not go away. Even when bladder cancer survivors receive a clean bill of health, most are still anxious that the good news might not last. It’s hard to stay positive. But, anyone who is reading this is still here, living to fight—and hopefully enjoy—another day. “I completely understand. I’ve been going through it for 12 years in June, but I try to be thankful because I’m still here and my bladder is, too.” We wish to thank everyone who opened up about their experiences with bladder cancer. We appreciate all of your honest shares., We live in a culture that admires and celebrates hard work. This is a good thing to the extent it inspires us and keeps us motivated. But I believe our culture has now gone far beyond that. We seem to have great respect for “busyness” and even exhaustion. I’m not sure where this gets us The efficiency that technology has brought us has also kept us tethered to our devices for texts, news alerts, games, and shopping. The idea that technology can save us time and that we will use that time for rest and leisure is laughable in today’s culture. We use our devices to do things faster which then allows us to squeeze even more tasks into a day. Many of us don’t see much of nature in a given day. When is the last time you sat on the grass and looked at the sky? We don’t eat very nourishing foods. And we don’t give our bodies some physical exercise or movement. And many of us don’t sleep the recommended seven to eight hours a night. It's okay to say "no" sometimes A cancer diagnosis can often give us a feeling that it is OK to say “no” to certain requests. That it is OK to be unable to do something or unavailable for an event. We should exercise this new-found willingness to decline tasks or events and use that time to nourish ourselves physically or emotionally. Reassess how you spend your time Do you watch hours of TV that leave you feeling unfilled? Do you serve on a committee or board that you really don’t want to be on anymore? Do you volunteer for some cause and you feel you would let others down if you stopped? Do you spend time on the phone helping a friend who maybe needs more help than you can offer? A cancer diagnosis is a yellow flag. It’s a warning. It’s a time to think about what really matters and to arrange our lives accordingly. Don’t miss this opportunity. Don't feel like you have to explain If you are a bladder cancer patient, creating more time and space in your life for your own wellbeing is likely appealing. And you need it more than you did before the diagnosis. Do not apologize or feel the need to explain taking care of yourself. Do not feel uncomfortable to refuse unhealthy food that in the past you might have eaten. Conversely, do not feel you must explain periodic indulgences in foods that you thoroughly enjoy even if they’re not the healthiest. If you are a caregiver to the patient, choose now to create space in your life for self-care. If you don’t feel you need such space now, you will over time as dealing with cancer continues to be a part of your life. Make time today What activities do you enjoy that you simply haven’t had time for in recent years? What did you enjoy doing as a kid? Maybe it’s painting or riding a bike. Maybe it’s jogging or going to the beach for a day. Maybe it’s making a homemade soup that you’ve been too busy to make. Or sending handwritten notes to dear friends or siblings. Whatever it is, make time for it. Now. Today. Tell us, how do you self-care? Share your routines [lead_gen showIfLoggedIn="0" campaign="shortcode_posts" source="site"]

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