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DIARY OF BLADDER CANCER EXPERIENCE PDF Print E-mail
Paul R
Age 68
CIS, Grade III/IV, 2 TURB, 1 BCG series, IVP

Sept, 2001: First experienced mild urinary discomfort, consisting of sensitivity at end of urination. Thought I had a minor infection, as discomfort ceased after a week or so.

Oct. 2001: While on a month-long motorhome trip to New England, started having urinary discomfort symptoms again, but more intense. Bought cranberry juice and drank large quantities over about a 2-week period. Symptoms mild in AM each day and grew worse during day. Started taking Alleve whenever severe discomfort appeared. Looked up symptoms on internet and got worried that I might better have it checked out. Suspected kidney problems. Went to Northeastern Regional Hospital in Vermont and had a urine dip and urine culture, both came out negative for infection. Doctor told me to see uro when I got home, but didn't tell me what might be causing problem..

Nov 2001: Returned home and made appointment to see uro. Before appointment date came, symptoms disppeared and I decided to cancel and await my next routine prostate PSA test to check out the problem, which was several months away..

March 2002: Saw uro for PSA test and told him about my symptoms and expressed concern that I might have bladder cancer. He said since I didn't have visible blood in my urine that this was unlikely. He did a sonogram test which showed I was retaining urine after voiding. He prescribed Flomax and told me to take it for several weeks and see him again. He said the problem might be scar tissue from a past prostatectomy.

April 2002: Saw uro again. He did cystoscope exam and found no indication of a problem. He took urine sample and examined it in office with microscope, and said he found no blood cells. I asked him why I was having long-term urinary discomfort, then? He said he didn't know. I told him I had 4 of 5 indicators/risk factors of BC - urinary frequency, urinary urgency, urinary discomfort, and a brother who died of a combination of prostate cancer and BC. The only symptom missing was visible blood in urine. This got his attention and he said he would send the urine sample out for laboratory tests. In a few days I got a call from him saying that the lab had found "suspicious" cells and he wanted to take biopsies and nurse would call me and set up consultation appointment and the outpatient surgery. I learned later that "suspicious" meant microhematuria (non-visible blood in urine) and abnormal cells.

Early April, 2002: Met with uro and discussed what was to be done and asked a lot of questions. He said he would do a retrograde IVP and a TURB under general anesthesia.

April 10, 2002: Had annual physical exam by regular doctor. He said I was in excellent health other than the problem I described. He said I was in good hands with the uro I had, who did my prostatectomy in 1992 and had monitored me ever since with no recurrence or further treatment necessary so far. Interestingly, the urine sample he sent out came back with result stated as "normal," which shook my faith in routine lab tests. In my opinion, detailed urine tests for cancer should be a part of every physical for a smoker or former smoker or anyone with a family history of BC.

April 29, 2002: Day of outpatient surgery in early AM. Met with anesthesiologist and asked her if local anesthetic was possible. She said not for the procedure I was to undergo. I asked her for ‘light" anesthesia. She said there was no such thing - you were either under or not under anesthesia. Only the duration of the sleep was variable. She said ‘twilight" anesthesia was really just a heavy tranquilizer and was also not appropriate for this procedure. I acquiesced, even though general anesthesia leaves me dizzy and nauseous. Upon awakening, doctor was gone, and nurse told me uro had found a "little tumor." I was dizzy and nauseous and had to lie back on table for a while after peeing dye and bubbles. She eventually told me it was time to get up and go, even though I still was woozy. I got in a wheelchair, and my wife joined me and she and nurse wheeled me out to car where my son and car awaited me. I reclined in seat, and sucked ice and said little on way home, as I felt awful. My wife told me doctor said cancer was early stage and treatable, and asked if I wanted to know the rest. I said no, that I felt too bad to absorb and deal with it right then. Arrived home, drank some water and took pain medicine. Spent afternoon in recliner feeling lousy. Tried chicken soup and eventually a few scrambled eggs, but just didn't want to know any further details. Felt well enough next morning for wife to tell me the "rest of the story," which I had refused all the previous day. She told me that it was superficial cancer and could be treated without removing my bladder. I was greatly relieved, as I had expected to hear that my bladder was going to have to come out since I had cancer. I had spent a nightmarish night of worry unnecessarily, awakening frequently and visualizing the trauma of bladder removal or worse.

Early May, 2002: Met with uro and got pathology results. He told me I had Stage Ta, grade III/IV, transitional cell carcinoma, carcinoma in situ, covering 3-4 cm area near left ureter, with "some roughness" in lower part of ureter. He said he put a stent in left ureter. He had removed all of cancer he could see, but couldn't guarantee he had gotten all of it. He had cauterized some of area also. He had found some small tumors in the affected area. He said he had not seen any of this during earlier cystoscope exam because it was in a difficult area to access with the scope. He described BCG treatments he planned to do, starting in about a week. I asked lots of questions, all of which he answered. However, he didn't want to speculate on eventual outcome - he said we "would see" after treatments and another biopsy session. When I asked, he said 5-year survival rate for my type of cancer was 75% in 5 years.

First BCG: Nurse Anonymous had difficulty getting catheter in. Had me cough repeatedly while she tried to insert it. She finally gave up and called uro in, who got a smaller catheter and went right in. She marked my chart to use a #14 rubber catheter with a curved tip. Instillation of BCG went without event. My son drove me to session as I didn't know what to expect. Good thing because traffic was heavy and I would have arrived exhausted. I brought along diaper, pillow, blanket, towel, pee bottle and Clorox. I was prepared for anything! Had no trouble on way home or during the 2-hour holding period. When I got home, laid on each side, back and tummy for 15 minutes each to make sure vaccine contacted all areas. Voided normally, though urine still tinged with blood (called uro several times after TURB on 4/29 due to worry about continued bleeding, but he always said it was due to stent and was normal). Had lunch and crashed for several hours - perhaps exhausted due to tension leading up to event.

Second BCG: Nurse Wonderful inserted catheter with no difficulty and instillation went smoothly. I put on a diaper afterwards and let my son drive me home as usual. Still wasn't sure if and when I might start having reaction. Followed same rotissirie routine after arriving home.


Third BCG: Nurse Careless had trouble with catheter, repeatedly inserting and withdrawing catheter, but could get no urine out, indicating it wasn't in. She persisted way too long, apparently not wanting to be found wanting in her skills, and I finally had to ask her to get uro. He came in, found she had crammed the whole thing in too far. He put a syringe on the end and applied suction while slowly withdrawing it until urine appeared in syringe. The catheter had apparently crimped in the bladder preventing urine from draining out. Made mental note not to let this nurse come near me again.

Fourth BCG: Nurse Wonderful again instilled BCG without problems. She changed to a #12 catheter. Told her I was relieved to see her, and told her about the "nurse from hell" I had last week. She said she had been at her mother's funeral last week, and would make effort to always do my treatments in future. Talked to uro, and told him I was still bleeding. He said this was due to stent, and to expect it to continue until he took it out. I expressed concern as to whether I was bleeding too much. He said I wasn't. I asked him the symptoms of excessive blood loss, and he said he didn't want to tell me, as I would probably start having them. I told him that I knew one symptom would be lowered blood pressure, and would he please quit kidding around and tell me the rest. He said a fast pulse rate and dizziness would also be symptoms, but not too worry, I wasn't losing too much blood. I expressed concern about lack of irritation, which I thought would be a good sign, and uro confirmed that was correct, but not to reach any conclusions until treatment was over and he could see the results.

Several days after this BCG got a call from nurse who told me urine sample I gave at the last BCG showed infection (probably due to Nurse Careless), and she called in antibiotic prescription.

Fifth BCG: Nurse Wonderful didn't show as promised, but nurse Nice took her place and things went smoothly.

Sixth BCG: Nurse Wonderful back, asked me if I was drinking plenty of water, as urine was cloudy. I said yes, but that I had urinary discomfort, urgency and frequency again. She consulted with uro and said they wanted to test urine and postpone BCG. In a few days she called and said I had another infection and prescribed antibiotics. Rescheduled BCG for next week. Later, the sixth BCG went smoothly with nurse Nice, who is almost as good as nurse Wonderful.

Uro told me following last BCG that we would wait 6 weeks, then do more biopsies and TURB as required under anesthesia.

Aug 5, 2002: Had biopsies under anesthesia. Told anesthesioligist again about severe nausea, and she said she would administer plenty of anti-nausea medication. Awoke feeling much better - no nausea at all. Chatted with nurses and anesthesiologist while waking up enough to stand. I even asked if they were prepared for a "Code Blue" during outpatient surgery, with a doctor available if needed. The anesthesiologist sitting by knitting said: "What am I, chopped liver?" I apologized, as I had thought she was too specialized to handlle such emergencies. Turns out they were ready for any emergency, even though it was strictly an outpatient surgery center. I told them I was ready to get up and go, and they sat me in a chair for a while and gave me crackers and juice. I mentioned pain, which was caused by removal of the stent. She gave me a Percoset (sp?) pill, which I broke into quarters, as pain medicine has caused me nausea in the past. Was wheeled to car again where my faithful son and car awaited, and took another piece of pain pill on way home. Started feeling a little nausea, but it passed. Later at home, nausea and pain came back big time, and I spent the rest of the day retching snd hurting. Called uro, as I couldn't keep pain pills down. He called in prescription for anti-nausea suppositories, which eased nausea and made me sleepy. Pain lessened without any further medication. Believe the pain pill is what caused my extreme nausea - will try to avoid it in future and see what happens.

Had minimal bleeding for a day or two, then urine cleared up, and all symptoms of urgency, frequency and burning disappeared.

Waited about 10 days, and uro called with pathology results. He said grade 3 cancer was still present, still stage Ta. He said cessation of symptoms was probably due to removal of stent, which had been causing inflammation. He said next treatment would be weakened BCG + interferon, starting in about a week, and to continue till 6 treatments complete..

To be continued --------

 
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