Bladder Cancer in Men, Dark Black Spots, & BCG Treatment
Always Consult a Physician On the Matter of Cancer! But, in the Interest of Information, This Video is Offered
The dove is a symbol of peace and gentleness. In my opinion, after some 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 a significant other. May peace be with our health care professionals, patients, and bladder cancer survivors.
BCG Bladder Cancer Treatment
The purpose of this article is not to criticize the medical community. The purpose is to perhaps save others the frustration I have experienced in trying to help my father who suffered from superficial bladder cancer, and subsequently BCG infection. There will be three parts to this discussion: the basics of BCG treatment, symptoms of BCG infection, and my father's symptoms.
BCG stands for Bacille Calmette-Guerin vaccine (attenuated mycobacterium bovis). The bacillus used for this vaccine is a weakened (attenuated) form. It is live, but more easily killed by your body's immune system. BCG is used to vaccinate against tuberculosis or it can be delivered via catheter directly into the bladder (a treatment for bladder carcinoma). The solutions for the vaccine and immunotherapy for the bladder are different.
BCG Treatment for Bladder Cancer-
The idea behind treating bladder cancer with BCG is to get the body's immune system to react to what it sees as an invasion by something live and foreign. During the reaction, white blood cells attack the BCG causing an inflammation of the bladder. While fighting the BCG, the body also attacks the cancer tumor cells.
It is estimated that around 95% of patients treated with BCG have no symptoms of infection from the BCG. Furthermore, less than 1% of patients incur life-threatening or fatal reactions to BCG.
Common reactions to BCG are: frequent urination, bloody urination, painful urination, and urgency of urination. Rare side effects are: blood in urine, chills, itching , joint pain, fatigue, and/or nausea. An infection similar to tuberculosis can occur in very rare instances. Anti-tuberculosis drugs are required for treatment.
How it Started
In 2001, my father (age 79) was diagnosed with in situ bladder cancer. It appeared during cystoscopy as a red spot in the bladder. Initially, it was discovered by a standard urine test that showed the presence of red blood cells. In situ bladder cancer is a very malignant aggressive type of superficial cancer detected early and not beyond the lining of the bladder.
Soon my father began BCG treatment in Tucson, Arizona. His course of treatment was once a week doses of BCG for 6 weeks. Then he would have 6 weeks with no treatment. I believe he had cystoscopy to determine if bladder cancer was still present. Then he would have another 6 weeks of once a week treatment with BCG if the cancer was present. This is the pattern that repeated itself many times over a 4 year period when cancer was detected. After two courses of immunotherapy, my dad still had a very small red area, though smaller yet, and the doctor decided to use BCG and interferon. 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 urine analysis.
A Decent Interval
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 BCG at this point 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, and in turn, I felt confident in his medical treatment. He would stop at my house to lie down after installation of BCG because my house was closer to the doctor's office. He would roll from side to side periodically to make sure the BCG spread around. After voiding, we would put bleach in the toilet to kill the BCG before flushing.
This scenario 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 picked up again either with cystoscopy, urine analysis, or both. His only symptom after about 2 years (in retrospect) was loss of weight. He attributed it to aging and said he wasn't eating as much because he wasn't doing as much. He dismissed it strongly. He actually thought of it as a good thing.
BCG Bladder Cancer Treatment
In 2002, I moved to the central valley of California. My dad and his wife moved to Oregon. I went to see him several times over the next 3 years and we 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. Another symptom occurred perhaps in 2003-2004. This was that he had a low red blood count. 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 urine analyzes were coming up 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 treat.
One day I got a call from my sister. She said that dad had had a cystoscopy and that he had "black spots" on his bladder. At this point I thought that surely some other patient had exhibited these symptoms and 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. That is, twice as much BCG was used each week during the course.
It took me two weeks of searching, but I finally came across an article written by a doctor who was alerting other doctors to something he had noticed in several of his BCG infected patients. He had discovered "black spots". He also discovered that treating their bladder infections required antibiotics used against tuberculosis. The usual antibiotics used to cure bladder infection were not working. He declared that there was a strain of BCG that was DRUG RESISTANT. I have tried to find the article and cannot. The article was written by a urologist in the Midwest and also had a photo of the spots. It was written in 1992. 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 2 bladder infections that required him to be hospitalized. Each time the doctors treated 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 one or two weeks and then back in with another bladder infection. My father was having a couple more symptoms which he did not talk about. He was having "head sweats" at night; his pillow at night got sopping wet. I learned this later while in Oregon, and it had been going on for quite some time. He was also running a low grade fever of 99-100 degrees frequently and mysteriously.
I accompanied my dad to his last local urologist appointment. The doctor said that my dad's bladder was covered with granuloma. From Wikipedia, 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 was saying that his bladder was covered with it and that he could not see the normal lining of the bladder. While looking at dad's bladder he had scraped from the top to the bottom vertically, and from left to right horizontally in a cross-like fashion. None of the lab tests revealed any cancer in the material scraped. 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 dad could have his bladder removed. That was not received well by my father who honestly did not think he would survive the surgery (he was 83 now). By now his weight was down from nearly 200 pounds to 130 pounds.
Off to the OHSU Hospital
During this appointment I cited the article I had faxed the doctor. He said that it was possible that he had BCG infection. But when I asked to have dad put on isoniazid and rifampin (recommended in the article), the doctor was very resistant claiming the antibiotics for tuberculosis were "very powerful"? This is when I decided we had to do something else. The article recommended that 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.
The doctor at OHSU just looked at the labs that were sent and diagnosed my dad as having a drug resistant BCG infection. He sent me home with isoniazid and rifampin to administer dad. Other drugs for treatment are pyrazinamide, ethambutol, and streptomycin .He also took blood cultures 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 well die from a different infection caught in the hospital.
By this time (July 2005) my dad had lost the will to live. Dad had no appetite (he actually got the dry heaves 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 drink 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 was having light-headed spells. About two weeks after our appointment at Oregon Health and Science University, 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. An additional significant condition was bladder cancer.
What's the 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 urine analyzes are consistently showing red blood cells, it has to be cancer," it's time to seek other help. I fell into the trap of thinking our doctors knew all there was to know about BCG. Who among us knows everything about anything?
Let it be clear that I relate this story 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. These might not be bladder cancer symptoms. 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 infection, and only 1% have fatal or life-threatening reactions. BCG is the most common and effective treatment to date for superficial bladder cancer. There are other treatments.
© 2010 John R Wilsdon