Who'd have thunk it...

I had my six months check-up on Monday and I forgot to update the blog.

Guess I really am cured! It was all clear again, and I'll keep having these every three months till it becomes every six months and then every year...

Three months all clear!

I think the cyctoscopy results I just had are about as good as I could possibly imagine - my bladder lining looks (and I'm using the doctor's own words here) "perfect".

Now, I was watching on the monitor and I saw it with my own eyes - I don't even have any scarring!  The lining healed completely.  Looks totaly smooth and healthy, no evidence of anything except a healthy bladder.

Whoo-hoo!

Sent from my BlackBerry

How easy it is to forget...

I meant to blog this back when it happened, but time kept getting away from me. So here is a multipart catch-up.

On July 12th I ran the LiveStrong Challenge 5K. I set my personal best time, so I think it's safe to say I'm completely physically recovered from the surgery.

The day before the event I was reading on the web how they have kids handing yellow roses to each cancer survivor who crosses the finish line. I told my SO Ben how cool that sounded and that I kind of looked forward to getting my yellow rose.

He started telling me that I probably misread the page, it's not every finisher that gets the yellow rose, it's only the cancer survi... oops. He stopped at that point, because he remembered that, in fact, I am a cancer survivor. The funniest thing is that I kind of understand why he "forgot" because I kind of forget a lot as well. Survivor seems like it should only apply to people who came within inches of dying, and I don't feel that was anywhere the case with me. But of course everyone who had cancer and is still alive is a cancer survivor...

Okay, so that event went very well, and a few weeks later I was at an event where a bunch of people hadn't seen me in a year. A lot of them came up to ask how I was doing, how my health was and at first I couldn't figure out why - yep, I also managed to forget that I had "the big C-word" and that they were concerned about my state of health.

Which is, of course, 100%.

In two days (Monday morning) I go to see Dr. Greene for my first post-surgery cystoscopy. If I don't have any recurrence this would be the first of about 14 over the next five years. Well, unless they discover a non-invasive test that's just as reliable...

Next update: Monday 11am.

Need a new doc!

Just got a call from the UCSF Urological Oncology department.  Seems my doctor is leaving them and moving to Minneapolis.

I guess it's not cold enough for him here?

Luckily it's a very large group so I just have to pick a new doctor.  I hope not to need surgery again, but still with the number of cyctoscopies I expect to have (4/year for 2 years then 2/year for three at least till they invent a less invasive and reliable method to replace it) I'd like someone I'm going to feel comfortable with.

Hair dying is a-okay.

Periodically, some rehash of the "is there or isn't there a link between cancer and hair dyes" issue shows up in my "Google news alerts". I decided to dig around this morning and I found this page which seems to make for a pretty good case that so far there's been no link established by any credible study.

The most important thing she points out is this: "The analysis also found that the majority of studies examined did not adjust for factors such as smoking, which is a major risk factor for cancer. If, for example, people who smoke are more likely to dye their hair (or vice versa), than the results would have to be interpreted differently."

This is basically the same problem the "Bacon causes cancer" study suffered from - not adjusting for factors like exercise, smoking, other foods you end up with a correlation study when what people want to see are causation studies. Unfortunately there's such a dearth of critical thinking/scientific skills and such a "need" for sensationalized headlines that we end up with these "common wisdoms" taken from half-studies...

Look for yourself, and you'll see that just about every page that warns of dangers of hair dyes and cancer (bladder cancer in particular) references either the one discredited UCLA study from a while back, or one single "homeopathic doctor".

On: "Life after Cancer"

A fellow BC Survivor made a post that resonated with me on "Life after Cancer" a few days ago.

I very much relate to this. Since I got the all-clear report from pathology (confirming low grade, etc) I've managed to even forget on some days that I have .. eh, I mean had this thing. But being earlier in the process and I'm currently on the every-three-months cystoscopy schedule, and it's hard not to catch myself having the "can I make plans for after the next one, what if they find something?" thoughts.

I imagine as I go through more all-clear ones, it'll become more routine and making plans without doubts will become common place.

I very much look forward to that.

Confirmation of all good news

I did see the doctor as originally scheduled for a quick follow-up yesterday but it was rather anti-climactic.

He confirmed what I already knew from the nurse, gave me a copy of the pathology report, told me it was highly unlikely that I would die of bladder cancer and said he'd see me for a follow-up cystoscopy in August.

The pathology report was the kind of boring you hope for:

Diagnosis:
Bladder, left, transurethral resection: Low-grade papillary urothelial carcinoma, no invasion identified, no muscularis propria present.
Bladder, right, transurethral resection: Low-grade papillary urothelial carcinoma, no invasion identified, muscularis propria present.

Left tumor was the small one (one centimeter) on a thin stalk and was already visually determined as being non-invasive. Right one was larger (4 cm) with a wide based stalk, and that's the side that they took muscle tissue biopsy from to make sure there's no invasion.

I found a pretty cool page to help understand the results.

That's pretty much it, till the next update which I expect will be in August. I'm off to train for the 5K and raise money for the LiveStrong/Lance Armstrong Foundation. Thanks to those who already donated! This organization helped me a lot when I was first trying to sort things out, and I think they are doing fantastic work.

P.S. A hearty shout out of congrats to a fellow BC club member Steve who got an all-clear yesterday. Whoo-hoo, Steve!

Pathology reports are back

I called the office last night (my time) and by the time they called back I was asleep (here in Europe) and they left me a voice mail.

Figuring they wouldn't have left a *voice mail* if it was bad news, I worked up the nerve this morning and listened to it. 

The pathology report said that every biopsy sample they looked at/took showed up the same: low grade papillary tumors, which the nurse reminded me is the superficial, slow growing, non-invasive kind.

She added that this was very good news, and the doctor was very pleased with that and that all I needed to do was make an appointment for three months from now for a follow-up /check-up/cystoscopy.  She did say that if I want to sit down with the doctor to go over the pathology report (which I do, d'oh) I can come in (I'm going to keep my May 13th appt for that).

So, in summary, this is best possible news this far. If I have no recurrence, then all I'm in for is frequent but eventually dropping to annual checkups.

Yay.

One Week Check

I guess I haven't posted much because no much is new.

I've been on a two week trip for work, traveling to Chicago tired me out somewhat, but as long as I remember to take it easy it's not too bad.

It is weird to try to remember to "take it easy" as I'm used to working out regularly, walking a lot and carrying heavy bags through many airports (turns out that might be more taxing than my regular workout!).   However, my body lets me know pretty quickly when I'm not taking it easy enough by making me feel tired.  It also lets me know when I'm not drinking enough water by making it painful to pee.  Or maybe that's also from not taking it easy.

In any case,  since Chicago, I'm taking it easy for my couple of days in London and now three days in Munich.  Too bad, really, as I prefer to see the sights by walking everywhere and this has forced me to find busses and whatnots.

In a few days it's back to London for more working/training and then another long flight back home, though it'll be more than two weeks since the TURBT by then, so I hope it'll be all fine.

Next real medical update is May 13th, unless they call me earlier if the pathology results are available - but they had told me they are seldom ready before two weeks after surgery.

Today was an excellent day

Today went about as well as I could have hoped for.

First thing in the morning the catheter went out, that felt good. Later in the day, I had dim sum nearby with my friends. That was good.

I got a massage in the afternoon, that was great.

I had some yummy snacks at the new Japanese restaurant in my 'hood this evening. That was good.

I took half a Vicodin first thing in the AM just in case the catheter removal would be problematic (it wasn't) and I haven't had to take any pain killers since, so I'm only on antibiotics (and the pro-biotic drinks that Jeanne made me get at Whole Foods today).

I honestly feel better than I did the days before the surgery and not just mentally/emotionally.

I'm trying to take it easy, but pretty much feel as normal as I ever have. Tomorrow afternoon it's off to Chicago and then Europe...

Thanks again to all my friends for all your supportive emails, calls and thoughts.

The Day After

Let's see, first a recap of yesterday.

After the requisite pre-op checks Dr Konety's chief resident stopped in my room to answer any questions I may have had and that's when I found out they were planning to give me a course of Mitomicin C intravesically after the resection to kill off remaining cancer cells and prevent reseeding. They actually ended up using Thiotepa instead.

They rolled me into the prep room after giving me a lovely sedative and prepared me while the lovely drugs kicked in and then put on a little mask and off to sleepy land I went. It was a little after 1:30pm.

About an hour later Dr. Konety came out to the waiting room and told Jeanne it went well and that I was being taken to recovery room.

I woke up in the recovery room about an hour and a quarter later. It turned out they had just told Jeanne I was still asleep and to check back in half an hour, so the nurse went and got her and Jeanne hung out in the recovery area with me for the rest of the afternoon.

Around 4pm they started me on the Thiotepa which involved pouring a container of it into my bladder and clamping off the catheter. It also involved giving me some pain drugs (it was fentanyl) as my bladder was not very comfortable and it's bad enough to have it spasming against the catheter baloon but having it filled for an hour was very uncomfortable. I'd say that was the most uncomfortable part of the last two days.

Somehow I made it to 5pm when the nurse came back and unclamped the catheter (*aaahhh*) and then after the chemo was out of me he set up a large saline IV bag which was going to wash out my bladder of all residue of Thiotepa which took another hour.

During that time Dr. Konety and his resident stopped by to tell me it went well and to explain that they switched the plan from Mitomicin to Thiotepa because of the thinness of the bladder where the larger tumor was removed from he didn't want it to get irritated and Mitomicin is rougher on the bladder as an irritant than Thiotepa and they seem to have similar effectiveness decrease against recurrence and reseeding. He also said that while normally they would take out the catheter before sending me home, they would set me up with a leg bag for it to keep it in for a few days to allow the bladder more time to heal before putting any "strain" on it.

So, the nurse set me up with the leg bag, gave me a larger overnight bag to switch it out to if needed, showed me how to remove the catheter on Saturday (that'll be tomorrow) and what to watch out for (basically no straining, take it easy, return to normal activities within 5-7 days as I feel up to it). They also gave me a prescription for Septra (antibiotic, five days' worth) and Vicodin (about three months worth at the rate I use it!).

We took a cab home around 6:30 and after a stop at Wallgreens and picking up my prescription drugs and some Perydium (magic stuff for any sort of urinary discomfort) and I settled in bed to watch some TV, check e-mail (of course!) and such. I felt some discomfort so I took half a vicodin and one perydium pill (half a doze of each) and then felt pretty comfortable for the rest of the evening taking the other half of the vicodin before going to sleep a few hours later. I wasn't up to solid foods so I just had some fruit/veggie juice that Jeanne picked up at Safeway. Ben came over after work and the three of us watched a little TV and then after hooking up the larger draining bag I went to sleep.

This morning I woke up feeling okay, still needed half a vicodin a couple of times, in the morning and then in the afternoon before taking a shower. I had some more juice in the morning and then half a banana, and half a pear cut up in some yoghurt which was my lunch. The antibiotics sadly have the side effect of causing gas which was putting a bit of uncomfortable pressure on the bladder but not painful just a little uncomfortable.

Around 6pm my friend Susan stopped by with her singing group - they sing at hospitals to lift spirits so they made a house call to me to lift my spirits and it worked! Thanks guys!

For dinner Jeanne made me some sweet potato which was excellent. I think I'm primed and ready for dim sum tomorrow! 11:30am, see y'all there!

I'm still planning on flying to Chicago starting a two week business trip/mini vacation this Sunday. My easy work week in Chicago will be just conducting some training there for three days and then I go on to Europe, rest up over the long weekend and I've got the same training to conduct in our UK office near London.

Thanks for the good thoughts and wishes everyone, it really cheered me up both here and on FB.

And big thanks to Jeanne for being my excellent surgery buddy!

She's done!

Well, sort of :)

I'm done with most of today's hospital tasks, just waiting for the "irrigation" to finish (yes, they call it that).

The doctor came and chatted with me briefly - he seemed optimistic that pathology would confirm Ta (low grade) tumors - while the larger one was large it was still "on the surface" and not the underlying layers.  They took some samples for testing to make sure 100% anyway.

They will still have to give me a bunch of instructions before they release me.

Posted by Asya, now "cancer free for 3.5 hours"

In recovery room

Asya's out of surgery. The doc said she did well; he removed one medium and one large tumor, and the bladder wall was not punctured, but is a little thin where the large one was. She'll have a catheter for a couple days to prevent any extra strain on the tissue while it heals. I should be able to see her in a few minutes, and take her home in a couple hours.

[Posted with iBlogger from my iPhone]

Running late

Op time was scheduled for noon, but there were some delays with the room. They finally wheeled Asya away at 1:30, and will be 1 to 2 hours before I expect any news. More when I have it.

[Posted with iBlogger from my iPhone]

All checked in and ready to go

Mobile Blogging from here.

This is Jeanne...
Asya is all checked in at the hospital, and is getting her IV hooked up now. She's got an hour before they take her away to the OR. I wanted to do a test post here to make sure it works! If you are a Facebook friend, check there too.

[Posted with iBlogger from my iPhone]

Tomorrow's the day

Well, tomorrow's the day.  I'm well rested, or at least I was till I tried to do a week's worth of work today, and Jeanne's in town to be my "surgery buddy" - she'll take me to UCSF/Mt.Zion tomorrow at 10 and they expect that they will let her take me home late that afternoon if I feel up to it.

Supposedly they will give her an update before I'm coherent enough to post it myself so I'll have her post it here.  If you want an individual personalized update, you'll have to negotiate it with her. :)

Send good thoughts between noon and 1pm Pacific.  And remember, we're all rooting for Ta (or T0).
 

Reporter idiocy

Am I misreading something or is this reporter confused about the difference between the phrase "survive" and "survive without recurrence"? The study talks about how long patients survived without recurrence and he translates that to a leading paragraph claim of overall survival???

I haven't posted in a few days because I'm in Hawaii recharging and what-not and getting mentally ready for my surgery on Thursday by not thinking about it and being distracted by the gorgeous scenery. So far, so good!

Other news are about cabbage and its relatives. Apparently these vegetables have been found to prevent the recurrence and spread of the disease in patients with early stage bladder cancer. Good thing I like cabbage, brussel sprouts and such...

Dim Sum outing

Just to pull this info out of the comment and into a post of its own:

On Saturday, April 25th around noon we'll go celebrate my successful surgery by having dim sum. The exact time and locale will be announced closer to the date. People should probably let me know if they are coming, so if we end up with a big crowd we can try to reserve a few large tables next to each other.

Another thought I had (especially if I feel like an extra day of recovering-do-nothing) is we can get dim sum brought into my place and have it here...

Fun with the internet

The internet isn't just for porn!!! It's also for finding cool educational websites.

Here is an animated lesson on the urinary system. How cool is that? Those wacky Australians!

Okay, now I know I'm spending too much time on the internet...

Third opinion

Tonight I had a 30 minute chat by phone with an uncle of a friend of mine (thanks, Eliot!) who was the nicest guy, a urologist of many years experience who asked me a list of questions about my medical history so far, and then basically confirmed that my outlook is very good, I should stop worrying myself so much with things that are very unlikely, and answered a lot of my questions.

He also confirmed that I picked a surgeon with good training, that UCSF is a great place for treating my condition and that in all likelihood the removal of tumors and frequent follow-up to watch for possible recurrence will be all that'll be necessary.

The funniest line from him was about patients he has who are in their 90's who have had the low grade bladder cancer and he's their fourth urologist to monitor them because they have outlived the first three!

He also pointed out that already we have tests now that can find evidence of cancer cells in urine that didn't exist even three years ago, so as time and research marches on, there will be more that science will come up with which may reduce the annoyance, discomfort and uncertainty of the current monitoring methods...

Recurrence, Progression, Staging, Grading

There is a lot of discussion "out there" about recurrence, progression, staging, grading (i.e. what stage is the cancer, what grade are the tumors) and the sad thing is that a lot of it is pretty sub-standard. Some of it is based on old, outdated information, some of it is bad interpretation of lots of statistics, sadly that's not limited to laypeople, some medical (or allegedly medical) sites are no better.

In a nutshell, I will summarize something here that I think I will probably write up in more detail at some later point.

There are only two kinds of bladder cancer tumors. Low grade and High grade. Low grade are non-invasive, and luckily are much more common than high grade. High grade are invasive, aggressive and need to be treated very differently than low grade tumors.

There is no such thing as intermediate grade tumors. Those are high grade tumors that were caught early or underdiagnosed/understaged. There is no such thing as superficial bladder cancer per se. There are low grade tumors which are superficial and will stay that way (in 98% of cases) and there are high grade tumors which are superficial because they are caught very early but they WILL become invasive in something like 50% of all cases (or more or less depending on how you interpret the numbers).

Basically, progression is the important thing to worry about. Low grade cancer tends not to progress. This is why it's less dangerous and even though it has high recurrence rate (though it's not clear to me how high, as the numbers drop a lot through the years probably due to better surgical techniques in getting it all during the first TURBTs) it's not as dangerous due to its seeming tendency to stay strictly in (on) the bladder lining.

So, when I post whatever results I post on May 13th (or possibly earlier as the pathology results may be available before that, but May 13th is when I go meet the doctor for the first time after that) the key finding will not be that the tumors are Ta (meaning superficial or non-muscle invasive) but that they are "low grade" meaning that their _potential_ for invading is extremely low. If they are high-grade, then it doesn't matter that they haven't invaded muscle yet, the latest research all points to immediate and aggressive treatment. It is the grade, not the stage that is most important to me now. If it's high grade and low stage, then I'm very lucky and I get to have more choices in treatment. If it's low grade, then it gets removed, we talk about chance of recurrence, and figure out what else we may do to minimize the chances of that.

Now, having said all that and probably scared some of you, the indications are very many that mine are low grade tumors. In addition to general statistics that say that
a) most bladder tumors are low grade
b) most pappilary tumors (the kind that I have) are low grade
c) tumors discovered in younger adults are far more likely to be low grade and in older adults more likely to be high grade
d) tumors on lateral walls tend to be low grade, tumors on the dome tend to be high grade (mine are on the lateral walls)
e) two experienced urologists suggested that on the surface/visually my tumors had the appearance of low grade tumors.

The final and definitive answer can only be found microscopically by an experienced pathologist (and hopefully confirmed by a second opinion if anything is at all in the "grey area"). But so far all the indications are that these are low grade tumors.

We'll know for sure somewhere in the first half of May.

What a difference a few days makes

It's been a few days, but they were a few very good days.

I got away from the negative and obnoxious acquaintances and had a few excellent days including going to an excellent concert. I also confirmed that eating bacon is only going to kill you if you also eat a lot of other crap, no good stuff, smoke and don't exercise. And that's definitely not news!

And I feel a million times better.

I've been telling people as quickly as I can, but it looks like some of them have now heard through the grapevine rather than through me, so for them I say: "Don't worry - I have a very curable type of cancer, and I plan to be cured."

I've also been amazed over the last couple of weeks how many people I've found out I know who also had some form of cancer they have now fully recovered from. I guess usually you only hear about friends and friends of friends when they DIE and when they get some "lesser" form of cancer, get the treatment and are declared cancer-free, that doesn't make as good of a gossip or maybe they themselves don't feel like it's important or appropriate to tell people (after all, medical stuff is usually considered private, and cancer in particular can make some people freak out where even if you're cured, they'll always think of you as "in danger").

So maybe that's part of the reason I'll continue telling people - even after my treatment, even if that's the end of it other than frequent check-ups, I figure that if I can get people to realize it's not always a death sentence, unless they don't get their symptoms checked out maybe it'll get some of them to their doctors and most of them will feel silly because it'll turn out to be nothing, but maybe someone else will catch this thing early and make a complete and full recovery.

Nothing going on till the pre-op appointment on Thursday to prod me and make sure that I'm fit for surgery. It's conceivable that I may have to decide if I want general anesthesia or "local" (spinal with a sedative). It's only a 30-45 minute procedure so I'm thinking general is probably the way to go - not long enough to make recovery difficult, but if anyone knows anything to suggest, drop me an email or leave a note.

Oh my $deity, are they serious???

It's a damn good thing I already decided to become (mostly) vegetarian or this link would make me cry.

Bacon link to bladder cancer risk

A potential health hazard?

Getting too hooked on a daily bacon sandwich may increase the risk of bladder cancer, research suggests.

Harvard scientists found people who ate bacon at least five times a week were 59% more likely to develop the disease than those who never did.

They also found people who frequently ate skinless chicken had a 52% greater risk. Chemicals called nitrosamines and heterocyclic amines may be to blame.

Are they kidding me??? Okay, I can see bacon - I already resigned myself to the fact that likely all smoked, fried and maybe even pickled things would probably have to leave my diet. But skinless chicken??? That's, like, what you see in the dictionary when you look up healthy lean proteins, no???

I'm going off and spinning up Joe Jackson's "Cancer" which had those all-too-true lyrics:
"Everything gives you cancer".

Lines in the sand

So I've been thinking, and reading, and thinking some more. And reading a lot of blogs of other people who've been through what I'm going through. Two of the ones I've enjoyed more than others are http://gotbladdercancer.blogspot.com/ and http://my-bladder-cancer-journey.blogspot.com/. One thing that seems clear is that going through this is going to change some things, like maybe my attitude towards my job, or some things I do or the way I interact with some people.

For example, the last few days at work, some negativity was being flung around that normally I might have ignored or maybe joined in on or maybe sneered at... but instead it infuriated me. And my feelings about it were that I just don't need this kind of crap in my life and I shouldn't have to put up with it. So I pretty much chewed out the person who was generating most of it, probably shocking and surprising the hell out of him and others in that meeting.

Thinking about work and things I've been spending time on in general it seems like this is a good time to reprioritize. It's not one of those major life-changing I'm gonna quit my job things - I really love my job and I like my company (most days!) and I don't want to change that. But it is one of those "life's too short to put up with stupid bullshit" minor-life changing things, and maybe it does mean that I work a little less and if that conflicts with expectations that some people have for me, then oh-well, they'll just have to learn how to deal.

I'm not really kidding myself that I'm going to completely change anything about my life - I briefly considered a raw vegan diet but it just doesn't seem very sustainable, not to mention I question the relative benefit-v-inconvenience/quality-of-life ratio for it. I'm already working out pretty regularly. I might consider a different life-work balance, but the fact is that when I love what I'm doing at work, it's not a chore to work long hours.

It's just that for-the-moment it's interfering with the hours and energy I need to do what I need to do to stay sane, and that is read every single webpage out there about what's happening to me and what I can expect next.

I guess if I need to deal with that by taking some vacation time, then that's what I'll do. Too bad my work combined vacation and sick time into one PTO balance. Still, mental health is as important as physical health.

So, enough work that I still feel normal and have something to distract me from too much obsessing. Not so much work that I no longer enjoy it. And absolutely, positively no taking any negative shit from anybody, especially at work.

Date is set

Got a call from the surgical coordinator this morning - there was a cancellation and she offered me April 23rd. If I couldn't take it then it would have to be scheduled in mid-May after a work/vacation trip I was hoping not to have to cancel.

I told her I'd take it, so it looks like April 23rd is the date for the TURBT for me.

Good days, bad days.

Today's not been a good day.

One thing about yesterday - the doc took a close look (with the scope) at both tumors and one of them is a lot smaller than the other - the first doctor labeled them both as "medium". The smaller one he could actually see it's attached to the bladder wall via a stem that's pretty thin.

The other one though is bigger and it wasn't visible how it's attached or even really much more than its surface. And the doc said that we won't really know more about it till he takes it out. We won't know its stage or its grade or whether additional treatment is going to be called for.

Of course all day in the back of my mind it's been echoing that we won't know all this for possibly a month - and all this includes whether or not this tumor is non-invasive.

I had a bad day at work and maybe it's a chicken or the egg thing - I have no patience for bullshit because of what I'm dealing with or maybe I'm upset about this because of too much bullshit at work.

But I just can't shake this sinking feeling at the pit of my stomach.

Today's update

Saw Dr Konety this morning. He confirmed the visual diagnosis and since he felt that it's possible that TURBT will be the only indicated treatment the plan is to schedule the TURBT and then based on pathology results from the removed tumors to decide whether we will just do the wait-and-monitor-closely-for-recurrence or do additional intervesical immunotherapy (or some other -therapy).

Of course it turns out scheduling the TURBT procedure isn't that simple - apparently first I have to have a pre-op exam at least a week before the "op" where they'll make sure I'm fit to undergo surgery. When I last had major surgery (a lot more major than this) in 2002 I didn't need to do this, maybe they've added this for CYA protection or maybe it's because I'm a few years older now :).

Once they check my blood, heart, etc and pronounce me fit for surgery I can have the procedure. So later this week I'll schedule the pre-op and then the op a week after. I'm guessing we're looking at roughly two weeks from now.

He did confirm that my CT scans were clean and my heart, lungs, etc. all seem normal and clean. My pain in the lower back which normally I would attribute to a pulled muscle was confirmed to be likely a pulled muscle. :) Funny how it doesn't seem to hurt that much any more now that my paranoia has been calmed down a bit.

He was surprised I had never been a smoker, but I do have a "risk" factor in the form of a huge amount of second hand smoke I was exposed to between the ages of 17 and 25 when I spent a lot of hours in smoky bridge clubs, smoky bridge tournaments, and even occassionally smoky bars. He said they are seeing more and more women non-smokers with bladder cancer whose only risk exposure may have been second-hand smoke.

Tomorrow's the big day

I'm too exhausted to analyze more statistics, not that there is much point to it other than intellectual exercise anyway. So I'll just summarize what will happen tomorrow morning.

Tomorrow morning I go meet the Specialist/Surgeon. I believe he'll recommend my next course of action either based on the films/reports of previous doctors or he will look at the tumors himself.

I'm guessing that the TUR will be scheduled but I have no clue for how soon. At this point, I'd like to do it as soon as possible not necessarily because I think a week one way or another is actually going to make a difference, but just because I want to get it over with.

At some point, either tomorrow or after procedure, or after the pathology is back another week after procedure is probably when we decide on whether or not I'll need any adjunct therapy.

Ben's coming with me to the appointment in case my brain gets full and I forget something I'm supposed to remember, and also for moral support.

Stay tuned.

Pharmaceutical companies push forward and other news

Here's a news item/press release from last week:

Bioniche Completes Recruitment in First Phase III Clinical Trial with Urocidin(TM)

A Canadian bio-pharmaceutical company is shepherding through the system a previously fast-tracked by FDA drug for treatment of non-muscle-invasive bladder cancer that is refractory (unresponsive) to the current standard immunotherapy - Bacillus Calmette-Guérin (BCG).

Speaking of bladder cancer in the news, we also have a former NBA player having surgery for bladder cancer, some positive news about recurrence concerns and FoxNews along with a few other lesser source can't resist the biblical puns in reporting of the frankincense oil bladder cancer discovery.

And in great news for dogs, Professors at Purdue University are researching causes of bladder cancer in some purebred dogs. The news isn't just great for dogs, as according to the researchers, they have already identified some regions of the DNA that is different between dogs with cancer and dogs without cancer, and the hope is that this will help them understand the genetic differences in humans that can lead to the development of bladder cancer. Hang in there, Westies, Shelties and beagles, science is on its way to save you!

Fun with numbers

Forget my lack of statistics savvy. I've been having a good time reading and trying to understand the numbers here.

This is National Cancer Institute's searchable cancer statistics data compiled from all of their studies over who-knows-how-many-years.

Here are a couple of favorite data points for white women and bladder cancer:

Median Age at First Diagnosis: 74

Median Age at Death: 80

That means that half the (white female) patients who are diagnosed with bladder cancer at any age live past 80.

I do have to admit I'm pretty shocked that it seems that half of patients are also over 74 at first diagnosis, but that doesn't mean it's the same half as the long living one...

Anyway, no wonder they think of it as an old person's cancer. I'm more than 30 years "too young" for first diagnosis not to mention I don't have the standard high risk factor which is smoking.

If you know any women who still smoke them then not only are they putting themselves at risk for lung cancer but they are also increasing their risk of bladder cancer by two to three times!

Why is bladder cancer underdiagnosed in women?

When bladder cancer is diagnosed in women, it's usually more advanced than when it's diagnosed in men. As a result, browsing around and reading about it, you get the impression that bladder cancer diagnosis in women is a much more dangerous thing than in men.

Bladder cancer is also more common in men than in women, but the gap is narrowing - it's believed that this is because smoking is a major contributor to cancer and women are smoking at a higher rate than in the past - closer to the rate men smoke. Well, that may be true in Asia or Europe, but in the US it seems all smoking is dropping so much, I'm not sure I can name a single woman I know who smokes!

But still, reading statistical summaries about survivability and whatnot, it doesn't seem to look as good for women as men. Apparently, the five year survival rate for women is equal to ten year survival rate for men.

That scared me at first. But then reading more about and thinking more about it, it seems to me that there are a few things going on.

First of all, no offense to men - they are kind of wimps. A little burning when they pee and some of them think their you-know-what will fall off and they run to the doctor. Since men tend not to go to doctors as much as women, when they do they are taken more seriously.

Second of all, women are much more prone than men to get urinary tract infections. Something about our biology and short urethras. So coming in with complaints like burning and blood in the urine frequently gets a woman an antibiotics prescription and since these symptoms tend to come and go (when they are caused by BC) they'll clear up and everything thinks it's all fine.

Third of all, blood in the urine is frequently dismissed as a symptom in women (both by doctors and by the women themselves) as it's assumed that maybe it's menstrual blood traces and some techs must have thought I was stupid as they've asked me if I recently had my period after they found blood in my urine and after I told them "not even close" still assumed that the right thing to do was to just ask me to come back and retest in a week. Since the hematuria is usually intermittent the symptom goes away before next time and the diagnosis isn't made.

So as a result, by the time the right diagnosis is reached, it might be a man's first complaint about a symptom and a woman's tenth in who-knows-how-many years. So he's early stage, and she's advanced stage.

I'm glad my primary doctor insisted on referring me to a urologist and badgered me into going within days after they decided my "infection" seemed to be something abnormal. I'm glad that I went to a urologist who insisted on doing a cystoscopy even after a clean CT and ultrasound - the initial suspicion was kidney stones, but those didn't show up.

I'm still a bit worried about the persistent UTI I had summer of '07 which didn't result in a referral to anywhere just a bunch of antibiotics. I'm thinking that might have been back when this started, but who knows. The urologist did tell me I could have had these tumors for years and not known it, as it's not really known how fast they grow - it probably varies by individual.

Here's a good webpage with a summary of these issues for women plus some cool stories from women who've had bladder cancer.

And here's another sobering statistic about bladder cancer, which has been considered the cancer of old white men till recently:

Women with bladder cancer - 143,000
Women with ovarian cancer - 162,000
Women with cervical cancer - 189,000

I don't know about you, but I was shocked to see these numbers - I've heard so much more about risk of ovarian and cervical cancer than bladder cancer - all those urges to get annual pap smears hoping to catch cervical cancer early... and then we go and ignore symptoms which strongly suggest being tested for bladder cancer.

So, there's a good chance I'm now going to turn into one of those annoying people - when I hear a woman complain about a persistent UTI that just won't go away, I'm going to tell her to go get screened for bladder cancer. I hope she doesn't freak out or think I'm a silly worry wart, and tells me in her best Ahnold Schwarzenegger imitation "It's not a toomah" and then goes to a urologist and gets it confirmed.

While digging around in statistical research, which I'll be the first to admit I'm woefully poorly equipped to understand fully due to getting a D in my statistical analysis class in college, I did discover this table:

5 year relative survival rates for 1996-2002 (the numbers get higher with the more recent years)

By stage (at diagnosis)

                     Total    Men    Women

Localized                94.2     95.0   91.8
Regional                 46.8     48.8   41.5


By age (at diagnosis)
__-45                    91.3     91.1   91.9
45-54                    86.9     87.4   85.1
55-64                    86.5     87.2   83.8
65-74                    82.6     83.7   78.8
75-                      74.0     76.9   67.3

Full tables are here.

So, looks like the younger women have narrowed the gap. In fact, the gender gap which widened through the 70's and 80's started narrowing in the 90's again. Not sure if this is just a side effect of the error margin, my own misinterpretation of what these mean or what, or that women are opting for more aggressive treatment like men, or they are not being misdiagnosed as much as in the past.

So what does this all mean for me? Absolutely nothing. I am not a statistic, though I do plan to make decisions based on the latest available research and I plan to get the most aggressive appropriate treatment for me based on my situation. And if needed, I'll get a third and fourth opinions too.

Damn pushy females, who do they think they are - men?

Tree from Boswellia kills bladder cancer cells

Interesting article popped up for me today. Looks like it's been accepted for publication but not yet published, and probably real applications of this, if it's valid is a ways away, but still cool stuff:

Frankincense oil induces turmor cell specific cytotoxicity.

Follow-up and surveillance

One thing about this cancer is that even if it's the most low grade non-invasive kind, it has a very high incidence of recurrence - something between 50 and 80% depending on which study you look at. While the recurrence tends to be of the same low grade tumors, at any point they may "turn" into high grade ones and become invasive and so vigilance is key.

There has been a lot of interesting research in various genetic markers that may or may not be present in some people when they have bladder cancer and may or may not be used instead of the more invasive cystoscopy or maybe with for higher accuracy detection of cancer early if it returns.

This is the best article I found on the subject, although it's a little science-y for me, so if anyone can provide a translation into English, that'd be cool: Bladder Cancer Follow-up at EMedicine.

Not a good day to tell?

I started telling my friends in the last couple of days (and directing them to this page).

I'm in Japan right now, so there's this whole off-by-a-day or so thing, and I realized at one point that it was April 1st in the US today (it's already April 2nd here). And of course I had that thought - is anyone going to wonder if this is some elaborate put on? So, of course, no one has so far, because that would be a pretty horrible thing to do to someone, but just in case, I'll put off telling more people till April 2nd...

Thanks for all the good wishes and happy thoughts sent my way. That's really the only thing right now that I need. Unless you happen to know someone who is on the cutting edge of treatment research and can offer some advice, or something...

P.S. stories about all your friends and relatives who had cancer and lived to 100 or are doing well otherwise at any age are also welcome.

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.