Steve S’s Story

[Nightingale]

My First Visit to an Urologist
I have always thought of myself as being fit and had an idea that I was going to last a long time. I hike, ski and kayak among other things. I have a pretty healthy diet, don’t take any medications or have any medical conditions to deal with and people say I look younger than I am. Even so, at age 63 when my GP said my prostate was getting a bit enlarged and I should see a urologist, I had to accept that I was getting older and these things happen. The urologist did a cystoscopy and said it didn’t look like there was any prostate cancer, so there wasn’t really anything to do at that time. If it bothered me, there were drugs available.
A Second Urologist
About a year later (April 2014) I started having some blood in my urine and had to urinate much more frequently. Well that didn’t seem right. I tried to contact the urologist but he had retired, so I got a new referral from my GP for the prostate clinic at the hospital. I dutifully filled in their intake form explaining why I was there.
Communication Breakdown
The urologist checked my prostate and gave me some drugs to try. They didn’t do anything so he gave me some different drugs and then a third when they also didn’t work (Jun 2014). He then sent me for urodynamic testing (Jul 2014). This is where they attach electrodes to you to monitor your muscle output, put a balloon in your rectum to measure pressure and a catheter in your bladder to add a known amount of fluid. You get filled up, hold it, let it go a number of times The specialist then examines the data. Yup, my bladder was hyperactive. The urologist said we might never know why (Aug 2014). “But what about the blood in my urine?”,  I said. “You have blood in your urine? We need to do a cystoscopy right now.” he said.  He found two suspicious areas and said I needed a biopsy to find out what they were. I don’t know what the result might have been if he had understood that I had blood in my urine from the start. He also ordered an ultrasound, which didn’t turn up anything.
Communication with your doctor is extremely important. You might think you have told them something, but they didn’t necessarily hear it. Doctors have all the same human flaws as everyone else. Good communication can be more difficult to do than it sounds, but by constantly telling your story to the doctor, your partner and others, the odds are better that someone will hear or recognize an issue and help you take action. It also helps considerably to have someone come with you on your visits to the doctor. They can ask questions you might not think of and might hear something that you missed.
First TURBT
In November 2014 I had my first Trans-Urethral Resection of the Bladder Tumour (TURBT). I was a bit confused when I went in, because the urologist had only told me I would have a biopsy. He never mentioned the part about cutting away the tumours. Oh well, I wasn’t about to tell them to stop. It was quite painful to complete my first urination after the procedure, which you need to do before getting released. Perhaps the resident did this one? In any case, I was well recovered after a few days.
Interestingly, the post-op report said there was no sign of benign prostatic hyperplasia (enlarged prostate).
The pathology report said they found a high grade non-muscle-invasive urothelial carcinoma (NMIBC = non-muscle-invasive bladder cancer).
It is easy to obtain all of the reports of your doctor visits, procedures, tests and pathology reports. The hospital usually has a department that will process whatever forms they need and print you copies of the reports. Sometimes your doctor will just have them printed off after your appointment, if you ask. Tests done in BC at Lifelabs are available on-line. Reviewing the reports can help you understand your situation more clearly. Your urologist, family doctor or BCC can help you interpret them, if necessary. There is a lot of useful information available on-line.
Second TURBT
My urologist had apologized for having to do a second TURBT a couple of weeks after the first, when I met with him in October. As he said, he never finds anything on the second TURBT, but they are required to do one to make sure. Of course, two more tumours were found. I asked about the likelihood of the cancer returning and was told it was very likely, about 70%. I wasn’t overly disturbed by this, as the treatment is another TURBT and in the somewhat unlikely event it progressed beyond that, there was always the possibility of removing the bladder, so none of this seemed life threatening. All of this was inconvenient, but it wasn’t going to stop me from doing everything I wanted to do.
Physicians are trained to look for the most likely mainstream answers and discount everything else until the current diagnosis is proven incorrect. Statistically I expect that works quite well for the general population, but it doesn’t necessarily work for an individual case. If you feel your case is somehow different you need to advocate for yourself to get other possibilities considered.
BCG
The standard treatment for NMIBC is Bacillus Camille-Guerin (BCG), which is a weak live tuberculosis vaccine that in injected through a catheter in your urethra and into your bladder. It is a bit uncomfortable, but nothing overwhelming. The solution needs to stay in there for a couple of hours, which can be difficult as there is a real urge to urinate, particularly near the end of the two hours as your bladder continues to collect more urine. The purpose of the BCG is to stimulate your immune system to act against any remaining cancer cells. Since your bladder is a bag with lots of folds, you are required to lay on your front, back and sides to make sure all  internal surfaces of the bladder get exposed. I was told by a Fellow (doctors sometimes take a fellowship after their residency to learn more about a particular area) that walking, particularly in the first hour when the vaccine is most active, is just as good. I had 6 weekly treatments for the first round, starting in late January 2015 and continuing to the beginning of March. I would normally drive myself home (15 minutes away) and do my flips on the sofa.
Second Round of BCG
In April I had another cystoscopy. Good news, no tumours found. I was supposed to have another before the next round of three BCG instillations starting at the end of July 2015. It was delayed a week as my urologist was rescheduled for other things. Unfortunately, that put it a day after my first BCG treatment making it a useless exercise. The bladder was red and inflamed from the BCG (which is normal after a treatment) so it was impossible to see whether any tumours had developed. Given what was found later, that may have been a critical mistake.
I found scheduling with office staff to be a constant problem. The doctor would tell me when he wanted to schedule another procedure or office visit and send me to the front desk to make the appointment. They would say that nothing was available until much later and want to book it for then. As far as the administrative staff is concerned, you are just another thing for them to do, they don’t go out of their way to accommodate you and they have little idea whether the timing is important or not. One time after getting a “that’s all we have” response from a booking clerk my wife said to her “There is the doctor right over there (he happened to be walking by). He just told us to make the appointment at this time. Go ask him if the postponed date is OK.” Reluctantly she did. He told the clerk to book it at the time he said but early in the morning and he would do it before he went to the operating theatre. The doctor can make those calls; the administrative staff can’t and are unlikely to make the effort. Delays in tests or treatments can have consequences for you, so make sure your doctor is OK with any delays (sometimes it really doesn’t matter).
New Problem
In September I had another cystoscopy and aside from “normal edema” things looked OK. I had some bleeding (hematuria), but that often happens with BCG treatments so I was told not to worry about it. It continued, however, so I had another cysto in early November 2015. There was redness and swelling, but the uro said it just looked like “BCG fluff”, but thought we should biopsy it to make sure. I had another TURB at the end of November and post-op the urologist said he didn’t think there was any issue. The biggest problem I had with the procedure was that the spinal anesthetic they gave me didn’t wear off after an hour like it should. I was still partly frozen when the perioperative suite closed down for the day so they sent me up to a ward. Nine hours later I got to go home. I have no idea what the anesthetist did to me.
An early morning phone call from the urologist let me know that the pathology report came back saying there was extensively invasive high grade carcinoma with features of sarcomatoid dedifferentiation. That meant the cancer had started again and had changed into something much more dangerous. The urologist was stunned and it was clear the bladder had to come out. I don’t really know how I stayed calm through all of this. The only thing that really worried me was that my wife would be alone if things didn’t work out.
A CT scan in early December confirmed there was a mass there and, thankfully, looked to be confined to the bladder. The urologist said getting the bladder removed quickly was important, so we pressed for a date. The operation for a radical cystectomy (RC) was set up for late December and I went through all of the pre-op procedures.
Neobladder or Ileal Conduit
I was given a choice of a neobladder or an ileal conduit (IC) and had to make a decision quickly. It’s not an obvious choice, but after thinking about my age and active lifestyle (hiking, skiing kayaking, etc.), I thought having external apparatus could be a problem so I decided on a neobladder. I discounted any temporary issues, such as the length of the surgery, recovery time or training time for the new bladder. I was here for the long haul. I checked out the BCC Forum which has a lot of information and BCC was kind enough to put me in touch with 2 people that had IC’s and 2 with neobladders. I also called the Ostomy nurses at the hospital who have a wealth of information about managing either choice and were very helpful.
Cancer Agency
Before the operation, I was sent to see radiological and medical oncologists at the BC Cancer Agency. The medical oncologist recommended chemotherapy before surgery as it improves survival chances by about 5%. He was rather surprised that my urologist had set up a date for the RC as doing the chemo beforehand (neoadjuvant treatment) was the normal standard of care and they had been working together for some time and were used to the process. It makes one wonder.
They asked if we wanted to go home and think about it over the weekend and both my wife and I said “No” at the same moment. Our only question was how quickly we could start. After going away for a few minutes, the doctor came back and asked if Monday would be OK.
Chemotherapy
A schedule of chemo followed by another session a week later and then nothing on the third week, repeated four times for a total of twelve sessions was set up. A mix of Gemcitabine and Cisplatin was used with Aprepitant (Emend), dexamethasone and ondansetron for anti-nausea. Watch out for the dex. It’s a steroid and gave me a huge appetite. I’m still trying to get rid of the extra pounds.
Every chemo day I would drive myself to the cancer agency to give a blood sample so they could check to see if I was up for chemo and then come back home. Later in the day I would go for my chemotherapy. It took a couple of hours, largely because they filled me up with a lot of saline as well as the chemo drugs. I would park several blocks away and walk to the agency. While my energy level was pretty low, it wasn’t debilitating and I just took it slow. My hair thinned even more than it was before, but I didn’t do the shaved head thing.
Initially they would set up the intravenous on the back of my hand. The drugs made my hand and arm cold and achy, so they started to put the intravenous up by my elbow where the veins are larger. It helped some as did a warm blanket.
Once my neutrophils (a kind of white blood cell) were so low they postponed treatment by a week. I had some heartburn, which was treated with pantoprazole after Zantac didn’t work. I also had a strange numbness down my middle and a feeling like something was stuck in my throat. I got the usual “yes, sometimes things like that happen.” when I described the symptoms to the oncologist. Blood tests usually showed a low red blood cell count, which seems consistent with being somewhat fatigued.  The chemo affects all rapidly dividing cells, including red blood cells. Overall I tolerated the chemo fairly well with the most difficult time four or five days after the chemo. All of the issues went away over time after chemo stopped. In February 2016 I had a CT which showed the tumour shrinking. More good news!
Life Goes On
A number of times on my week off I went downhill skiing. I didn’t last too long, a couple of hours at most, but it was heartening to get out there. I stopped a lot to catch my breath. A couple of weeks after the chemo finished I did a small back country skiing day trip and later some hikes. Generally it went well as long as I took it easy.
Don’t ever think of yourself as an invalid. It is much healthier to keep doing the things you love, whatever they are. You will probably have to adjust the level of what you are used to, but that doesn’t matter.
Surgery
My surgery was in mid-April 2016. They try to schedule it about 6 weeks after the end of chemo to give you time to recover and get your strength back. My urologist does a significant portion of the neobladder RC’s in Vancouver, so I felt confident about the outcome. It took about six hours and the urologist said everything went well, but there was a little bleeding. Later I found out I needed 5 units of blood (your body holds about 11). The nurse who took out my intravenous when I left the hospital exclaimed several times that it was the biggest bore intravenous she had ever seen. Maybe it was a bit more than “a little bleeding.” I spent 6 days in the hospital and was sent home with just one Foley catheter. The suprapubic was taken out at the hospital along with the hemovac drain line and two rectus sheath lines for anesthetic.
While in the hospital, I had help from my wife, sister and daughter. It was great that they could help with brushing teeth, walks with my supersized IV pole piled high with drain bags and electronics, helping to change gowns and bed pads (I had a particularly leaky suprapubic line entrance in my abdomen) and obtaining something edible to eat. They also helped with some tasks that are part of the Enhanced Recover After Surgery (ERAS) program such as coughing and incentive spirometer. The nurses were terrific, but they can’t help with everything.
Prepare to lose any sense of modesty you might have while in the hospital. It just easier to go along with it, and not worry about it. It also means that it is easier to discuss your issues with whoever needs to know, including your family. That can be a big plus for anyone that tends to keep things in.
The pathology report indicated that no cancer was found in the bladder, prostate or lymph nodes. It appears the chemotherapy did a superb job.
Going Home
Before sending you home, you get instructions on irrigating your new neobladder. You also take home a batch of supplies to do the job. It’s not too difficult and involves using a large syringe to shoot some saline up through your Foley and sucking it and back out until it gets clear of the mucous generated by the bowel tissue the neobladder is made of. You also get instructions for injecting a low dose of blood thinner such as Dalteperin every day. My wife took on this chore, but you can choose to do it yourself as well. I was very happy to have someone else do it for me.
I found that I could manage stairs and generally fend for myself right away, so no one needed to be with me constantly. My wife found me some roomy scrubs to wear, since the Foley and leg bag take up some space. Another alternative are the traditional baggy pants Indian men wear. An extra-large T-shirt worked for pyjamas as it allowed the tube to the night-time drain bag hooked to the side of the bed to exit easily. A friend, who is a nurse, came by and removed the staples for me. She taped the wound with steri-strips to reduce the scarring.
Two weeks after going home, I had a cystogram (different than a cystoscopy) to determine that the bladder wasn’t leaking. They insert dye into the bladder and then use x-rays to look for leaking which, as expected, was not occurring. Next I visited the ostomy nurse at the hospital to have the Foley catheter removed. The Foley has a balloon on the inside end which holds it in place. A syringe is used to remove the fluid in the balloon and the Foley drops out. At least, that is what is supposed to happen. A resident tried a variety of tricks to coax it out and eventually called the urologist to help. The advice was to send me home and it would eventually come out. A few hours later it did just that.
The following day, the ostomy nurse instructed me in self-catheterising. This is quite important as things do clog up from time to time. She also advised me to do Kegels, holding each for 10 seconds. She thought it would be very difficult to hold them for more than a few seconds to start, although I found this not to be the case.
In June another cystoscopy confirmed everything was going well.
Other Business
Since I couldn’t do a lot for about six weeks, it seemed an ideal time to take care of other business. My eyes had cortical cataracts which were slowly getting worse. They caused multiple visions, so a bright light might appear as a cluster of five lights. The net effect was similar to having somewhat blurry vision. With the introduction in Canada of new intraocular lens products I had put my name down for replacement lenses before I had started chemotherapy. My dates now come up so I went ahead. It was day surgery, once for the left eye and then two weeks later, the right eye.
Getting Used To The Neobladder
The bladder did not drain easily. I really had to work to empty it. The urologist suggested daily catheterisation for a week or two. That didn’t work, so he suggested trying again with a French 16 size catheter, rather than the French 14 that I normally used. That did help. Another option was to surgically open the connection point between the urethra and the neobladder, although the cystoscopy didn’t show any particular obstruction there. That option is still on the table.
Other than that, I slowly got the bladder under some control. Initially, during the day I wore pads in my underwear. At first, just going for a walk would start me leaking within a block. Over a few months things got better and I stopped needing the pads altogether.
The bladder originally doesn’t hold too much – maybe 150ml. It eventually stretches out to hold 350-400ml. Over a period of a month or so I logged how much went in and how much went out. Being so inclined, I put it all on a spreadsheet, made a graph, fitted the data to a curve and calculated a bunch of statistics. OK, you might not want to do that, but keeping a record shows you a steady increase in how much the bladder holds, in spite of all the daily ups and downs. At this stage, it is something that seems to matter. I was eager to know that progress was being made in my situation.
I had heard that since you no longer have your original bladder with its sensors to tell when it is full, you have to rely on time to know when you should go. That isn’t true. There is definitely a sense of fullness or a bit of discomfort when it is time. Sometimes, if I am very full, I get a little spasm in my pelvic floor.
After 9 months, I’m still working on nighttime control. I wear a diaper brief to bed and there is a waterproof mattress cover under the fitted sheet. I don’t set an alarm, but generally wake up a couple of times each night and go to the bathroom. Occasionally I leak enough that some gets past the diaper, particularly if I am in a deep sleep and don’t wake up for 4½ or 5 hours. I have been advised by those that have gone before me to keep working on it and be patient.
Getting On With It
About 5 weeks after surgery I went on a hike about 6 km up a trail with an elevation gain of about 600m. I felt pretty good and took it fairly easy.  I did a few other hikes as well as a road trip. After a couple of months, I picked up my saxophone again. About 5 months after surgery I went on a week-long ocean kayak trip. My level of energy wasn’t up to normal, but again I took things fairly easy. We camped, so it was with diapers, wet sleeping bags and stumbling out of the tent in the middle of the night to go to the bathroom. One time I came out of the tent to the sound of a humpback whale breathing noisily in our little cove, so there was some compensation. I did clog up once, and had to use a catheter, taking extra care to keep everything clean. I also took along some antibiotics in case of bladder infection. So far, I haven’t had any infections and always try to completely empty my bladder to help avoid them. About 6 months after the surgery I took a five week trip overseas. No problems, but I did take a waterproof underlay about a meter square to sleep on, just in case of leaking at night.
I had a CT scan 8 months after surgery (delayed by my overseas trip – I opted to have it after coming home). It was difficult to get the results from the urologist, so I went to my family doctor who went over the results with me. There’s usually a way. Good news – all was clear.
At this point, about 9 months post-surgery I feel I have most of my energy and strength back. It is ski season and I’m back at it. My biggest issues are getting nighttime continence under control and occasionally clogging up.
I know I’m not a worrier, but there are lots of different ways people react to bladder cancer. I like to know a bit about the procedures and why they are done, others don’t want to know too much. Whatever your feelings are, you’ll find that there are lots of others with pretty much the same feelings as you. There’s great support at BCC and you’ll be able to get what you need there.

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