Link between bladder cancer and hair dyes

First there was a study that said use of permanent hair dyes especially dark shades was associated with higher risk of bladder cancer.

Then they said there was a genetic component: only women that had a certain genetic whatnot were the ones at higher risk.

Then they said there is no connection...

So, I guess I'll see what state-of-the-art science says by the time it's time to color my hair.

Whom to tell

I've been struggling a bit with the whole "whom to tell" and "how to tell" business. It's my nature to be pretty open about things, especially with my friends, and it's not like there's a stigma attached to cancer, especially when it's not one you can "give" yourself (smokers *are* at higher risk for bladder cancer, but I've never been a smoker, if you don't count all the second hand smoke from those bridge tournaments in the 80's before they banned smoking there).

But it's hard to tell people, especially face-to-face because, well, some of them are going to be upset by the news, even though the prognosis is likely very good, it's still a pretty big, ugly thing, and now that I'm starting to calm down about integrating this information myself, I feel like if they get upset, I'll get upset and I don't really want to get upset about it.

So this blog seemed like a good idea to refer people to for more details than what I'd share (and to keep from having to repeat myself, because I have a lot of friends). On the other hand, it seemed like a pretty impersonal way to actually first tell someone about it.

So my plan is to tell folks first - some by email, some by IM, some by phone, some in person, and then use this place to keep everyone up to date on how things are progressing.

If you found this URL before I had a chance to tell you about what's going on with me myself, my apologies, it was not my intention to let people know _about_ this via this page, just the details and FAQs, as they are.

I'm not planning on emailing every mailing list I'm on with the news though, nor do I plan to twitter about it, so I guess it's very likely that I'll miss telling some people and they'll find out from someone else.

Oh well!

What is Bladder Cancer

There are about five million pages out there that describe in great level of detail what bladder cancer is, how it's treated and what the prognosis would be for someone newly diagnosed.

I'll include links to some of the better ones below, but in a nutshell, for me I will summarize this:

Bladder cancer is a common, recurrent condition that may exist as superficial or invasive disease. Superficial bladder cancer will recur often and patients who are found to have superficial tumors should be surveilled (followed with cystoscopy and X-ray examinations) to catch any recurrent tumors at an early stage where they are easily treatable. Only occasionally will superficial bladder cancer progress to the more dangerous invasive bladder cancer.

Invasive bladder cancer is the other kind that I hope I don't have.

• I am not in a high risk group, so maybe I'm genetically predisposed. I might never know.
• I have not yet had any biopsy or pathology done on the tumors so everything I know now is an opinion of one doctor based on visual examination.
• Actual pathology will be done when I have them removed.
• The procedure used to remove them is called TURBT and I should be out the same or next day.
• I do not have the procedure scheduled yet, I will know more when see my doc on April 6th.
• Whether or not we use adjunct therapy at the same time or as a follow-up isn't known yet.

This is one of the most comprehensive pages on the subject: EMedicineHealth.
This has some good discussion and summaries: UCSF Urologic Cancer page.
So does this page: NCI Bladder Cancer Patient Information.

How it all started

Last September I got a UTI. Well, it was probably a UTI - I had those kind of symptoms. They gave me antibiotics, it seemed to clear up, then maybe come back, then again, then again in December, then they tested me after another course of antibiotics and verified that there was no more infection yet I still had symptoms. And I've had a history of hematuria, so my primary doctor got worried.

So they referred me to a urologist. The CT scan was clean so last week they did a cystoscopy. That's when they put a scope in with a light and a camera and the doc (and me) watched the results on a high-res LCD screen.

What he saw were two tumors which on-sight he declared "low grade" and "non invasive". He said they are not the kind that spread, but should still be removed. "So, it's not cancer?" I asked. "Oh, it's cancer" he said. But he assured me then, that I shouldn't freak out because, well, it's the kind that won't spread.

I'm pretty rational and when an experienced specialist tells me that something isn't life threatening and that I shouldn't freak out, I believe them. Rationally.

Emotionally, I'm no different from anyone else when they are told "You have cancer".

So I freaked out a little and then did what I always do - immersed myself into the web to learn everything I could about bladder cancer.

I also found myself a doctor to get me through this. A Dr Konety at the UCSF Urology Cancer center. He specializes in bladder cancer, so that's a good thing.

I don't plan to keep this secret from anyone except my mom (so if you know my mom, please don't tell her). I'm starting this page to let people who want to hear about the details and the progress of my treatment to follow it here.

Thanks for reading.