Worldwide Updates - November 12, 2010

It's been a bit over a month since my last post and over six months since I last updated all of you on the progress of our little bladder cancer "fraternity." The news is mostly good. In my case, no activity until March, and then only CT scan and flexible cystoscopy. If all clear, nothing for six more months - meaning NO BCG. That means my news is all good news indeed.

David F. in England is busy starting up a new business, having mostly freed himself from wage slavery in a bureaucratic but well-intentioned charity job. He is having crazy days and dramatic mood swings - both quite normal for a start-up business. Medically speaking, his biggest battle of note was coming to grips with having dental work done (including a root canal), sending us all an important message about not putting such things off. His bladder cancer news is entirely good, as in August he was told that, after four years, dozens of BCGs, and nine surgeries, that he was officially
ALL CLEAR and would be going to flexible cystoscopies (and no BCG) annually. Huzzahs all around are in order for David!

HK in Toronto, as some may recall, was having a truly awful time. He had constant pain, well after the timeframe that any of the rest of us had, and particularly bad side effects from BCG - to the point that he could not continue them. Last month he was ALL CLEAR on his flexible cystoscopy, and while his doctors considered doing some BCG, they decided the agony was not justified by the potential benefit. They will wait six months and do another cystoscopy, and they advised him to "take it easy and try not to have stress." Good advice for all of us!

We have a new member, Patrick from SoCal (Southern California), who reports, "I am a 44 year old married African American with 3 beautiful kids and 1 year ago this month I was diagnosed with carcinoma in situ (I never smoked either). I have had the 6 week initial treatment along with 1st 3 week BCG, I am currently going through my 2nd series of 3 week treatments. I have taken the trip to Arizona to see Dr. Lamm and he along with my doctor confirmed I am cancer FREE. I pray and hope the BCG continues to do the job." CIS is nasty business when inside the bladder, but it often responds well to BCG treatments. More on this in Brian's report below.

Brian S. in Atlanta is receiving excellent care with the best tools available. He suggests any in the area should contact him (via this blog) for a referral to his clinic, which he describes in glowing terms: "My clinic has this new scope and it's got an LED light (very bright), a still camera, and of course full motion video. The scope cost $17K! Having the pictures really helps when I go back in a few months later and we ask, "was that there before?" My wife was in the room too and both of us could see inside my bladder as he was doing the procedure. He took pictures of the suspicious area. He even turned the camera back to see it entering my bladder. He described that as, "looking at ourselves". It was surreal, but very cool. This clinic is the best in the area. And to top it off, it's non-profit and backed by the co-founder of Home Depot. Needless to say, they aren't pushing you through to get to the next guy's co-payment!"

Brian's news is not as good as we hoped. His urine cytology came back "suspicious," and the scope revealed what looked to be a white patch of peeling skin. His Emory-trained doctor, who has been in practice for a long time, had never seen anything like it. I suspected it might be CIS (Carcinoma in Situ) that had been damaged (perhaps killed) by BCG. They biopsied him via TUR surgery followed by a mytomycin chemo bake of the bladder. It was the size of a silver dollar, and the biopsy did confirm CIS, which is good news for other cancers and not so much for bladder cancer. CIS is relatively rare, comprising approximately 10% of cases, and is considered to be a superficial tumor (does not penetrate the bladder lining). It is a high-grade and aggressive manifestation of bladder cancer that has highly variable outcomes. David F. above had CIS in addition to other tumors, and clearly he has responded well to BCG. And so Brian will have SIX more BCGs to be followed by scopes.

Roy from Alabama had a minor scare with 2 "spots" detected during the cysto on his very first judgment day, having completed his six initial BCGs. We are all thankful that the biopsies showed them benign.

Mike from South Carolina reports that he
had three tumors removed in June and six BCGs. Now he will have flexible cystoscopies every six months for two years. If all goes well, annually thereafter. He is not going to have maintenance BCGs at this time.

Robert S. in New York is now 22 months ALL CLEAR and goes to annual flexible scopings. No BCG maintenance for him either.

I have not heard from Ed B. in Washington, Asya in California, or Jeff in the UK since last April. Let's hope that no news is good news for them all. Perhaps they will give us updates in comments below...

1 comment:

Anonymous said...

Sorry that I haven't checked in. I read the entirely of your articles, that you so kindly share, and feel obligated to share my status with you and the others who read your column. The least I can do is keep you informed. Well I passed my 73 birthday a couple months ago and this month is my three year anniversary since finding bladder cancer. I had a cystoscopy on 10 November which was 7 months and two weeks since my last one. It was clear. There was a scheduling problem which delayed the normal six month check. A urine sample was also taken to check for any dead cancer cells. The results of the urine test hasn't come back yet but I hoping it is also clear. I'll try to keep you informed in a more timely manner. Take care and God Bless. I think about our comrades who are also victims of our disease and pray for them daily.
Ed B. in Washington