My father suffered from superficial bladder cancer and a subsequent infection from BCG treatment.
The purpose of this article is not to criticize the medical community. The purpose is to perhaps save others the frustration I experienced when trying to help my father, who suffered from superficial bladder cancer and, subsequently, an infection from Bacillus Calmette-Guerin (BCG) therapy. There will be three parts to this discussion: the basics of BCG therapy, symptoms of a BCG infection, and my father's symptoms and treatment.
Basics of BCG Therapy for Bladder Cancer
BCG stands for Bacille Calmette-Guerin. It is an immunotherapy used either to treat tuberculosis or bladder cancer. It is a vaccine that uses attenuated, or weakened, Mycobacterium bovis—a species of Mycobacterium closely related to the one that causes tuberculosis. It is live, but more easily killed by your body's immune system.
The idea behind treating bladder cancer with BCG is to trick the body's immune system into attacking cancer cells. BCG is introduced directly into the bladder through a catheter to concentrate the immune reaction to the bladder. The body will then send immune cells to attack the BCG, and consequently, the cancer cells lining the bladder.
Symptoms of a BCG Infection
It is estimated that around 95% of patients treated with BCG have no symptoms of an infection. Furthermore, less than 1% of patients incur life-threatening or fatal reactions to BCG.
Common reactions to BCG are:
- Frequent and increased urgency of urination
- Bloody urination
- Painful urination
Rare side effects are:
- Joint pain
An infection similar to tuberculosis can occur in very rare instances. Anti-tuberculosis drugs are required for treatment.
My Father's Experience With Bladder Cancer
In 2001, my father, age 79, was diagnosed with in situ bladder cancer. It was initially discovered by a standard urine test that showed the presence of red blood cells in his urine. A cystoscopy also showed it as a red spot in the bladder. In situ bladder cancer is a very malignant and aggressive type of superficial cancer when detected early and not beyond the lining of the bladder.
Soon after, my father began BCG treatment in Tucson, Arizona. His course of treatment was a weekly dose of BCG for 6 weeks. Then, he had 6 weeks with no treatment. After this, he had a cystoscopy to determine if cancer cells were still present. If so, he would have another 6 weeks of once a week treatment with BCG. This is the pattern that repeated itself many times over a 4-year period.
After two courses of immunotherapy, my dad still had a very small red area, though smaller yet, and the doctor decided to combine BCG with interferon therapy. The interferon also helps the immune system fight the cancer. After this course of treatment, my father had a scraping of the bladder, and the lab tests showed no cancer. My dad then had a period without treatment, but he had routine urinalysis.
Consequences of the BCG Treatment
It was a decent interval before my father showed red blood cells in his urine again. On inspection, the "red spot" had reappeared. I cannot remember if, at this point, BCG was accompanied by interferon or not. My involvement in his treatment was simply questioning him about what was being done, and like many fathers, he didn't explain everything to me. As a result, I felt confident in his medical treatment.
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He would stop at my house to lie down after BCG therapy because my house was closer to the doctor's office. He would periodically roll from side to side to make sure the BCG spread around. After voiding, we would put bleach in the toilet to kill the bacteria before flushing. This went on a number of times (I cannot tell you exactly how many treatments he had, but it was quite a few). He would "look good" for awhile, and then the cancer would be detected again, either by a cystoscopy, urinalysis, or both.
Symptoms of BCG Infection
- Loss of Appetite and Weight Loss
- In retrospect, his only symptom after about two years was loss of weight. He attributed it to aging and said he wasn't eating as much because he wasn't as active. He dismissed it strongly. He actually thought of it as a good thing. Later, I'll discuss how my dad became averted to all types of food.
- Malaise and Fatigue
- In 2002, I moved to the Central Valley in California. My dad and his wife moved to Oregon. I went to see him several times over the next three years, and we also talked on the phone. Dad hired an aide to help with cooking and house work. He explained that he didn't have the energy he used to have. This, I believe, was a second symptom of infection (malaise). Weight loss continued.
- Low Red Blood Cell Count
- Another symptom occurred sometime between 2003-2004. My father's red blood cell count began to decrease. Doctors attributed this to CIS and also considered the fact that he might have some kind of infection. The docs had him check his house for a natural gas leak twice. His urinalyses were coming back positive for red blood cells rather consistently, and he was getting more BCG. As I have said, I cannot remember the total number of courses he received, but when his urologist saw a suspicious spot, he would begin another treatment.
- Appearance of Black Spots on the Bladder
- One day, I got a call from my sister. She said that my dad had had a cystoscopy and that he had "black spots" on his bladder. At this point, I thought that other patients have surely exhibited similar symptoms, so I started an extensive Internet search for information. In the meantime, unbeknownst to me, my father's urologist decided that the "black spots" might be tumors, so he gave my dad a double dose of BCG.
There May Be a Strain of BCG That Is Antibiotic-Resistant
It took me two weeks of searching, but I finally came across an article written by a doctor alerting other doctors to something he had noticed in several of his BCG infected patients. He had also discovered black spots. He also discovered that treating their bladder infections required antibiotics normally used against tuberculosis. The antibiotics used to cure bladder infections were not working. He declared that there was a strain of BCG that was antibiotic-resistant. I have tried to find the article again but cannot. The article was written in 1992 by a urologist in the Midwest and also had a photo of the spots. I immediately copied the article and faxed it to my dad's urologist and internist. I took the first flight out to Oregon.
In the ensuing weeks, my dad had two bladder infections that required him to be hospitalized. Each time, the doctors treated him with a number of antibiotics that did not work. When one or a combo seemed to cure him, he would be out of the hospital for one or two weeks only to come back with another bladder infection. My father had a couple more symptoms which he did not talk about. He had head sweats at night—his pillow would get sopping wet. I learned this later while in Oregon, and it had been going on for quite some time. He also frequently (and mysteriously) had a low grade fever of 99-100 degrees.
My Dad's Bladder Was Covered With Granulomas
I accompanied my dad to his last local urologist appointment. The doctor said that my dad's bladder was covered with granulomas. From Wikipedia, a granuloma is a medical term for a roughly spherical mass of immune cells that forms when the immune system attempts to wall off substances that it perceives as foreign but is unable to eliminate. Such substances can include infectious organisms and bacteria.
The doctor said that my dad's bladder was covered with granulomas and that he could not see the normal lining of the bladder. The doctor sampled my dad's bladder by scraping vertically and horizontally to make a cross. None of the lab tests revealed any cancer in the sample. The tests did not reveal any infectious organism (it turns out that BCG is hard to culture and frequently does not show up on various lab tests).
The last recommendation the urologist had was that my dad could have his bladder removed. My dad did not receive that suggestion well. He honestly did not think he would survive the surgery (he was 83 at this point). By now, his weight was down from around 200 pounds to 130 pounds.
During this appointment, I also brought up the article I had faxed the doctor. He said that it was possible that my dad had a BCG infection. However, when I asked to have my dad put on isoniazid and rifampin (recommended by the article), the doctor was very hesitant, claiming the antibiotics for tuberculosis were too powerful?
This is when I decided we had to do something else. The article recommended people with these symptoms see an infectious disease specialist. I made an appointment at the Oregon Health and Science University in Portland, Oregon. Both the internist and urologist faxed my dad's records to the hospital.
Off to the OHSU Hospital
The doctor at OHSU just looked at the lab tests that were sent and diagnosed my dad as having a drug-resistant BCG infection. He sent me home with isoniazid and rifampin to give to my dad. Other drugs for treatment are pyrazinamide, ethambutol, and streptomycin.
He also took blood and urine for culture. He told me it was important that the blood cultures be incubated for a whole 6 weeks—no shorter period of time. Apparently, there are times when, if absolutely no growth is seen, samples will be discarded before the 6-week mark. I was warned that the cultures might not show anything even after this period of time. The doctor indicated that hospitalization was not a good idea since my dad's immune system was compromised. Dad might die from a different infection commonly caught in hospitals.
At this point, July 2005, my dad had just about lost the will to live. He had no appetite; he dry heaved when he smelled some hot food I took into the hotel we stayed at in Portland. We treated him with the antibiotics and continued to encourage him to take high protein drinks, which he could tolerate. He said that food had not tasted good to him for a long time. Loss of appetite is another symptom of BCG infection.
He couldn't walk without help and had spells of light-headedness. About two weeks after our appointment at OHSU, my father died (2005). The primary cause of death was sepsis—a systemic inflammatory response syndrome (SIRS) with the presence of a known or suspected infection. A contributing factor was drug-resistant Mycobacterium Bovis cystitis. The other contributing factor was bladder cancer.
Always consult a physician on the matter of cancer!
What's the Take-Home Message?
Here is the salient point to take from this story: If your urologist is saying things like, "I have never seen anything like this," or, "The black spots must be tumors, we'll give him a double dose of BCG," or, "His urinalyses are consistently showing red blood cells—it has to be cancer," it's time to seek help from other people. I fell into the trap of thinking our doctors knew everything. Who among us knows everything about anything?
I wrote this article in the hopes that if you see similar symptoms over a good period of time (remember, side effects can last 2 weeks), maybe you can get help from an infectious disease specialist sooner than I did.
Symptoms of a BCG infection might not indicate bladder cancer. If I were diagnosed with bladder cancer tomorrow, and my doctor recommended BCG treatment, I would take it as soon as possible. Recall, only 5% of patients show signs of an infection, and only 1% have fatal or life-threatening reactions. BCG is the most common and effective treatment to date for superficial bladder cancer, although there are other treatment options.
The dove is a symbol of peace and gentleness. In my opinion, after some personal experience, when we deal with cancer, we need to be gentle with the patient, the doctors, and ourselves. We all do the very best we can at any moment in time, especially when it is for someone close to us. May peace be with our health care professionals, patients, and bladder cancer survivors.
This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.
© 2010 John R Wilsdon
Dot on August 21, 2018:
I need to know more !!
Susan Zutautas from Ontario, Canada on February 04, 2013:
My father in law has bladder cancer and unfortunately it has spread. Like Dawn's dad he's been battling this for about 3 years now. He has had his bladder scrapped out so many times along with radiation and chemo.
So sorry to read this about your dad. I'm sure that your hub will help others.
James A Watkins from Chicago on September 02, 2012:
I am sorry to hear this sad story of your father's health problems and interactions with the health care system. I think we would all do good to remember that doctors are "practicing" an art that will never be perfected.
Three score and ten are the years of a man. That is just the way it is, as unpleasant a thought and as painful as it might be for us in this vale of tears.
The most important thing for all of us is to ready for eternity. Because it is coming.
John R Wilsdon (author) from Superior, Arizona on October 12, 2011:
I really do understand your feelings. Make sure you have consulted a university medical research center near you. I hope your dad gets some relief soon.
lynne on October 11, 2011:
your conclusion with your dad coincides with mine. he endures horrible pain. doctors did
the best to explain the new procedure to my dad which is new and contradictions and indications are not yet a dictation of every type of bcg procedure. my concern is how long can a man endure this? thank god he is so strong. i need a relief prognosis for him....
rwelton from Sacramento CA on December 05, 2010:
Thank you for your article. A lot of men live in denial regarding any health issues. I appreciate your hub.
John R Wilsdon (author) from Superior, Arizona on October 08, 2010:
The only center he went to was Oregon Health and Science University. In retrospect I should have been more forceful about going to a Center for Excellence early on. He did have 3 different urologists, all of whom seemed unaffected by what they saw.
I hope many people read your comment. CIS should be considered, as you say, aggressive and unpredictable. I was under the impression that it was a cancer similar to prostate cancer; CIS could be handled successfully 20% of the time, and for the 80% recurrance, therapy could simply continue to beat it back. This attitude didn't leave room for other possibilities. Had I been more concerned from the get-go, of course, things might have been different. But, as I have said before, we do the best we can at the moment. Increased concern was a moment late.
Thank you for leaving your wise comments. Reader, if you are connected, even tangentially in ANYWAY with bladder cancer, read h.a. borcich's comment above. Heed it.
h.a.borcich on October 08, 2010:
I feel for you and your Dad. The pain of a bladder cancer diagnosis and subsequent treatments can be devastating. As a advanced invasive bladder cancer warrior I know it all too well.
May I suggest The American Bladder Cancer Society website. They have wonderful resourses for patients and family fighting this cancer. There are Drs who participate and some very knowledgeable survivors who can find information and make connections to help. Pat is a great researcher who can find anything! Dr Lamm is considered the foremost authority on noninvasive bladder cancers and he is responsive on the site.
Did your Dad ever seek out a 2nd opinion from a Center of Excellence? Most pathology on bc (bladder cancer) is under/over staged. Knowing what the pathology is determines the treatment path and is paramount for successful treatment. Also CIS is considered aggressive and unpredictable - not to intimidate you - and really needs to be handled by very experienced urologists.
Thank you for getting the word out and be well. Holly
Funom Theophilus Makama from Europe on September 28, 2010:
Tnanks for relating the story Johnooo, I truly appreciate it and the awareness is well noted...
Roseann Cole on September 25, 2010:
Thank you for sharing your story about your dad. Very sad story and hopefully others will learn from your experience.
John R Wilsdon (author) from Superior, Arizona on September 18, 2010:
We all do the best that we can at the time. So sorry about your dad, and yes, the treatments are rough to deal with. Thank you for sharing, DawnM.
Dawn Michael from THOUSAND OAKS on September 17, 2010:
HI John, I feel your pain, my dad lost the fight last year. He was diagnosed with a different bladder cancer than your dad but, if I had known now what I did back then I think that he could still be alive.
My dad had a colon cancer growing in his bladder. My dad had half of his bladder removed with the tumor and that was the start of the spread. To his lungs, liver, colon, back to bladder. The worst part of this process was a four year battle for him with endless surgeries, chemo and much more. I believe that if the tumor was left in his bladder and we could have supported his immune system to help his own body eradicate the tumor he would have not be gone through the hell he did. Once the body is opened and body parts are removed the cancer just spreads. Thank you John for sharing your story and I do hope that it reaches others in time!
anitariley65 from Little Town Ohio on September 08, 2010:
Great information. Keep up the good work.