Author Archives: Scott

Paging Doctor Octopus

The surgery is tomorrow (Wednesday). I should get a call today between 1:00PM and 5:00PM to find out exactly what time. So it’s a little like waiting for the cable guy, but not quite that bad. It’s not like they told me to lay myself out on a table, make my own incision, and wait for them to come by sometime during the day. Actually tomorrow’s service should be well above the average cable company. I’ll be vacationing at the Henry Ford West Bloomfield facility. I understand it has been transformed into a gorgeous place. It will all look the same to an unconscious person, of course, but hopefully Sarah and my Mom can enjoy the waiting room. If there are no significant complications I can expect to be released to the care of Nurse Sarahjane the next day. 


If you’re the exceptionally persistent, sadly inefficient kind of thief who scans random blogs looking for news that the resident will be away for prostate surgery, keep moving. The kids, cats, and house will be well taken care of while I’m gone. We’ve grown an extended family of friends, sitters, and drivers, so the kids will be taken care of, busy, and having a good time. Also I’m a big home automation geek so if someone tried to break in I would know about it and have their picture and probably their social security number before they even left.


I’ll be having the robotic “da Vinci” surgery that’s all the rage now. I wasn’t so much committed to the type of surgery as I was to having a skilled, experienced surgeon. The surgeons who were recommended in this area (and we have more than our share of good ones at Henry Ford, U of M, and probably elsewhere) all appear to use the robot. So I get to have surgery via a tool that can truly be called a “gadget”, albeit a very expensive one (that’s the best kind of gadget, BTW). 


This type of surgery was written up in a Time magazine article in January. The surgeon they interview is Dr. Menon of Henry Ford Hospital. My surgeon trained with and works with Dr. Menon. This is the link:


http://www.time.com/time/specials/packages/article/0,28804,2032747_2033111_2033133,00.html


Our best news recently was that my bone scan on Friday was clear. Odds were good that it would be clear, but if it had not been the surgery would likely have been cancelled and I would have moved immediately to a later part of the prostate cancer treatment process. Just the fact that the doctor thought it was necessary (it’s not usually done in people with PSAs like mine) scared Sarah and me.


We are still scared, of course. This will be major surgery, even if it is done by a fancy robot through a bunch of little holes. After that, there is a less-than-50% but still frightening chance that the cancer has spread. The major indicators of that will be:

  • What the surgeon sees during the surgery. It’s unlikely but possible that he would see an extended tumor or enlarged lymph nodes.
  • The post-op pathology report, expected about a week after surgery. We want clean margins (no cancer on the edges of where they cut), nothing in the seminal vesicles (if cancer is living there it is more likely to be living elsewhere, too), and nothing in the lymph nodes (that’s a favorite route to the rest of the body). 
  • PSA tests starting four weeks after surgery. The PSA should be undetectable and stay that way.
And obviously, I want to wake up to the news that he was able to spare as much nerve as he expected!

So this is likely my last post before Doctor Octopus (Sarah’s name for the bot) does his thing. I’m hoping Doc Ock takes it easy tonight and shows up tomorrow ready to do his best work.

What Lies Ahead (?)

The meeting with the first surgeon scared us even more. But surgery is scheduled for February 9th. That’s much sooner than we expected. About a week later we should have the post-operative pathology report, which will either boost our confidence or dash our hopes.

We were hoping for a cocky surgeon who would say “No problem. I can do this. You’re going to be fine.” Instead we got grim looks and no eye contact when we asked about prognosis. Still, this surgeon does a lot of these. We liked him and trusted him. Although we’re going for a second opinion with another surgeon tomorrow (Thursday) morning, we think we’ve found the right guy.

As for what we heard:
On one hand, my highest PSA of 6.4 (most recent was 5.2), is only moderately high in the prostate cancer world. You would expect something in the 20s or more if the cancer had spread. The bad news is at age 43 my PSA should be much lower. So my PSA is higher than it looks. That means the online calculators (“nomograms”) that show my odds of 10-year survival at 89% don’t really apply. If I make a completely unscientific adjustment of my PSA to a 12, that takes my odds down to 84%. Still not bad, but scary. And I’m not done.

Given the PSA, the surgeon wanted to do a bone scan to see if any cancer is visible in my bones. A positive bone scan would be very bad news. Already stage 4, my cancer would most likely be inoperable and incurable. The bone scan is Friday (the 4th). I probably won’t know the results until shortly before surgery.

The next troubling part of my case is the “Peri-Neural Invasion” (PNI). Cancer cells have moved into the nerve areas within the prostate. The nerves come with blood vessels, and that’s a route out. It doesn’t mean it has spread but it might have. As the doctor said, “We just have to pray we got it in time.”

Also troubling is the amount of cancer found in the biopsy core with PNI. The entire needle (100%) was cancer. Fortunately 80% of those cells were the less aggressive Grade 3 cells. The rest were more aggressive Grade 4 cells. It could be the biopsy doc just got lucky and hit a tumor right on. Or it could be there’s a big tumor in there that could extend past the prostate “capsule”. That would take about 10 points off my odds.

Finally, that scary biopsy core was on the apex, right near the seminal vesicles (kids, ask your parents what those are for). If it’s in the seminal vesicles then the cancer is living out of the prostate and free to enter the lymph nodes. In that case take off another 15 points.

As for side effects (which are low on our list of priorities right now) things still look pretty good. Continence is a matter of re-training a muscle. The other side effect depends on the nerves (for function, NOT sensation). The nerves that give the orders to inflate the lifeboats run along the outside of the prostate. They’ll have to take out most of the nerves on one side due to that 100% core. But the other side will be mostly intact. It may take months or a year for things to be functioning, but at my age the odds are good, and if you watch T.V. you know there are things that can help. If everything else goes right that will be important. If not it won’t really matter.

So the high-stakes events coming up are:

  • Second opinion consult with another surgeon Thursday AM. We don’t expect better news and we’re apprehensive it will be worse. So far everything has been worse.
  • Bone scan Friday. That NEEDS to be negative. Odds are good, but the odds have been in my favor all along and the bad news just keeps coming. If it’s positive surgery will probably be cancelled.
  • Second opinion on my biopsy slides. I’m not even allowing myself to fear a different result.
  • Surgery – I want to wake up to good news. We don’t want them to see anything scary and we want them to save as much nerve as possible.
  • Post-op pathology report – About a week after the surgery. We want clean margins, no cancer outside the capsule, nothing in the seminal vesicles, and nothing in the lymph nodes.
  • Post-op PSA test – About four weeks after surgery. If there’s any measurable PSA it suggests there are still prostate cells in me somewhere. And they’re obviously not in the prostate. So that would be bad.
  • Follow-up PSA tests – Every four months for years.

Bad news at any step could change what happens after, of course.

So now you know what we’re hoping for. It’s going to be a LONG month or so.

A couple of suggestions

First, if you’re a man, get your PSA checked at least once a year. If your doctor doesn’t do them, find another doctor. If you’re over 40 and your doctor says they don’t start PSA tests until 50, say you know a guy who’s 43 and has a tougher-than-usual case of it.

If your PSA is at all elevated get a biopsy. Don’t let them scare you away from that. Done by a good doctor it hurts less than having a cavity filled. If you get a negative biopsy, great! If the PSA keeps rising, though, get another one. It’s probably nothing. But you need to know.

blog of my friend Amy Rauch Neilson. Amy is a great writer and mom who is currently going through the worst of treatment for her second round of breast cancer. Her blog is called “It’s in the Genes.” Miserable as her situation is right now Amy maintains an inspiring positive attitude. If you like the blog, please consider subscribing to it. Amy is trying to get a publisher for her book about the genetic condition that puts all the women in her family at risk. The more subscribers she has, the more likely a publisher will pick it up.

Cancer

I think most readers here at this point have been following my progress on Facebook, but for those who haven’t or those who want more detail:

It’s cancer.

I got the dreaded call on Tuesday and have been in anxiety/panic mode ever since. The urologist who did the biopsy called me and told me this is a “garden variety” prostate cancer, moderately aggressive, and the kind they treat and even cure regularly. I asked if he could tell anything from the biopsy about the chances the cancer had spread, and he said no but statistically it was unlikely. Now as I have read the odds since (they actually have something called the Partin Tables that break the odds down by PSA and Gleason score) it’s not that unlikely to have spread. In fact, the Partin tables say there is a significant chance it has gotten out of the prostate capsule, although even in that case a skilled surgeon can sometimes get it all or it can (maybe) be cleaned up with radiation.

The doctor said I should explore all my options, but at my age and with this more aggressive form of the disease (Gleason 7) he would advise that I:

  1. Treat it. With the least aggressive prostate cancers (Gleason 6) and older men, sometimes the patient can make a choice just to “keep a close eye on it”. The odds of it actually spreading to the point of being life threatening before the man dies of other more-typical things are low enough that it’s not worth risking surgery, radiation, or the side effects of either. But that’s not true for a 43 year-old with a Gleason 7. The doc said that untreated, the chances of it “causing me problems” in my lifetime are quite good. In other words: It will likely kill me if I don’t do something.
  2. Get the prostate removed. I’m learning this is something of a religious debate in the prostate cancer world. There are those who strongly prefer surgery (the “get this out of me now!” crowd – of which I am currently a member) and those who prefer radiation for various reasons (lower risk of side effects, similar outcomes, etc), and those in-between. There is also androgen-blocking therapy (drugs that limit the production of testosterone can limit prostate cancer cell growth and maybe even kill early cells in some cases), and chemotherapy, which is really only useful against the most aggressive types of prostate cancer. This doctor said I should explore my options and the decision was up to me, but his advice was to have the prostatectomy.

I’ve since had advice to do the prostatectomy from two other doctors we know socially. I haven’t really given the radiation oncology advocates equal time yet but I will.

On Friday afternoon I visited the U of M Hospital records area (basically a nice woman with a web browser and a printer) and got my actual pathology report. The good news is my Gleason 7 (moderately aggressive) is made up more of less-aggressive 3 cells than of more-aggressive 4 cells. So I initially felt better on reading the results. But the results also show that one of the twelve cores is actually pretty scary in a few ways. Cancer is in a nerve area, which can be a route for it to spread. It also suggests a tumor that goes right to the surface and maybe beyond. And it appears to be mostly in the apex of the prostate, which is where positive margins most often occur.

Fortunately, last week I was able to get an appointment for Monday the 31st (23 hours from now) with an excellent surgeon at Henry Ford’s Vattikuti Urology Institute. I’m really looking forward to hearing what he has to say. My hope is he’ll be able to soothe our anxieties, but I don’t know. We’ll see.

Calm is of course a relative term for me now (and probably for the rest of my life). The best survival outcomes, for biopsies better than mine, are in the 90% range projected over years. As cancers get more aggressive and if the surgery leaves some behind those numbers drop sharply. So this is very scary.

I’m looking forward to asking my questions tomorrow . . .

Waiting by the Phone

The title doesn’t really hold up anymore, of course. Nowadays the phone is waiting by me wherever I am. But you can bet I’ll answer it quickly. This week would be a telemarketer’s dream except that I’m going to have zero patience for calls that aren’t about my prostate biopsy results.

I had the biopsy on Thursday and it sounds like it really will be Thursdayish before I get the results.
The biopsy itself wasn’t nearly as bad as it could have been. The anesthetic shot hurt a little, but it was more “OW!” pain than the “AHHHHH!!” kind of pain I was expecting. After that, although it was still a humbling procedure, there wasn’t any pain. Well, until the anesthetic wore off as I followed Sarah through Ikea. That pain really put a damper on the joy of picking out exactly the right comforter.
An ultrasound probe is used to guide the needle(s) of a biopsy. Prostate cancer can’t usually be seen on a regular ultrasound, but the fact that none was seen gives me some comfort. If there was something really advanced and ugly in there it might have shown up. The fact that the prostate looked about normal-sized was mixed news. The good news is I don’t have a cancer in there so advanced that it’s making the prostate lumpy and misshapen. The bad news is the “normal-sized” observation probably rules out benign prostatic hyperplasia (BPH), which was probably my best bet for explaining the high PSA numbers without cancer. To get my PSA numbers with BPH alone the prostate would have to be considerably enlarged.
We’re hoping to get news of a negative result of course. By negative I mean positive news (negative in the cancer world is positive). But that hope is more complex than you might expect. People are sometimes surprised to hear that under some circumstances I’m actually hoping for a positive result for cancer. Here’s why.
Prostate cancer can’t usually be seen via ultrasound, so taking the core (needle) samples involves a bit of luck. It is possible to have cancer in the prostate but miss the cancer with the needle. Some men will have multiple biopsies before they finally get a positive result. Meanwhile their PSA continues to climb, indicating a worsening cancer. Sometimes the cancer isn’t actually found until the PSA has risen to a level that suggests it has spread.
So here’s some possibilities of the news we might get, put roughly in order by best news to worse news:
1) Negative biopsy followed by a falling PSA level. If the biopsy is negative we’ll probably do my next PSA check in a few months. If that is dropping, or even if it is staying steady over a period of years, we’ll be able to relax a lot with the knowledge that it probably isn’t cancer. That would be WONDERFUL news.
2) A few of the twelve cores positive for a low-grade cancer. This would allow us to get the thing out. If cancer is in just a few cores and it doesn’t appear to be aggressive, the odds of it having spread outside the prostate are low. And if it hasn’t even spread much in the prostate itself then odds are good I would be eligible for a “nerve sparing” prostatectomy, which would greatly reduce the odds of the dreaded side-effects of surgery.
3) Negative biopsy followed by PSA tests that show rising PSA. If PSA in the blood rises steadily, or even worse if it doubles every year or so, that is highly suggestive that there is cancer in there. But no surgeon is going to remove a prostate based on PSA scores. You’ve got to show some cancer to buy yourself a prostatectomy. Some men are stuck in this loop of high PSAs and negative biopsies for years, and because the cancer can hit a critical mass, start growing rapidly, and escape the prostate relatively quickly, the cancer can start to spread before it is found. We really don’t want it to spread and don’t want to have to worry about it spreading for years.
4) Lots of cores positive for cancer. If it has spread all over the prostate then odds are higher it has spread outside of the prostate. It would also suggest the nerve-sparing surgery would be more difficult (but not impossible) to do.
5) Aggressive cancer in some cores. That would be bad news. No way to tell if it had spread outside the prostate or not.
6) Aggressive cancer in lots or all of the cores. That would be scary news. I really hope that’s not the case.
So we’re hoping for #1, but of course if the biopsy is negative we won’t know for months (at best) if we’re in a #1 or #3 situation. If the biopsy is positive we’ll have some idea of staging but won’t know if it has spread until other tests are done.
Either way, the news this week will be but one step in a longer journey.

Prostate terror


My first post here in a long, long time will be a simple one about the cheery topic of prostate cancer. When I started this blog I saw prostate cancer as an old man’s disease. In the intervening years (a) I have learned it can strike (and strike hard) at younger men, too, and (b) I have gotten older. So here I am. Mainly this post will be a way to get everyone who has asked up to speed in advance of Thursday’s biopsy and — more importantly — the results.

So here’s the scoop in Q & A style. Unlike most of my posts, in this case the As are based on actual Qs.

What is a prosrate?
A prostate (note the lack of an ‘r’ in the word — common mistake) is a part found only in the male model of the species. It is wrapped around the urethra. It actually serves a reproductive function but I’ll let you have that discussion with your mother or father. What’s pertinent here is that sometimes it gets bigger. That can generally be due to benign (i.e. not cancerous) prostate hyperplasia (BPH), prostatitis, or prostate cancer. When it gets bigger it can cause problems with the flow of liquid through the urethra (i.e. difficulties peeing). A bigger prostate also tends to produce more PSA.

What is PSA?
PSA stands for Prostate-Specific Antigen. It’s a protein that only prostate cells produce. PSA actually has a reproductive function but that is of absolutely no value whatsoever to me now. Some BPH naturally gets into the bloodstream. However, if the prostate is under stress it may “leak” PSA at a higher rate. And if cancerous prostate cells have escaped the prostate and lodged themselves in bone or elsewhere in the body, the PSA level in the blood can go quite high.

All men 50 or older should have their PSA level checked annually. A high number or even a low one that is rising can indicate BPH, prostatitis, or cancer.

What is a high number?
PSA is usually reported as nanograms per milliliter of blood (or ng/mL). Generally numbers above 4 ng/mL are considered high enough for concern and possible biopsy. Sources differ, but “they” say a man in the age range 50-60 with a PSA between 4 and 10 has about a 25-30% chance of having a positive prostate biopsy for cancer. Above 10 ng/mL the odds start to go higher than 50/50 that it’s cancer. From my layperson reading of people describing their cases anecdotally, it sounds like above 20 you really need to get on it right away, because there is a more significant chance that PSA is being produced by prostate cells that have moved to other parts of the body.

Fifty? But aren’t you . . .
Forty-three. Right. So at my age the “high” category lower limit is adjusted downward to 2.5 due to the fact that prostates (and therefore PSA levels) tend to increase gradually as men age. I can’t find any references to the the 10 or 20 limits being lower for a younger guy but that would make sense. I just don’t think there’s much if any research on it.

Unfortunately my PSA has been above the 2.5 level 40 year-old limit since we started testing it when I turned forty.

But didn’t you say men should be tested at age fifty? And aren’t you . . .
Forty-three. Right. But testing is also recommended in men starting at age forty if they have a family history of prostate cancer.

Oh, so you must have a family history of prostate cancer.
Actually no. But when I turned forty and my doctor asked that question I thought I did. My maternal grandfather had a long history of BPH starting in his early fifties. I didn’t know the difference at the time, so I erroneously said I had a family history, and I got tested. As the urologist said, “the horse is out of the barn.” If it turns out to be cancer I’m going to be very glad I made that mistake. In fact, contrary to the much more qualified experts on the subject, my less qualified layperson opinion is that all men should start getting tested at age 40.

And your first tests said no cancer?
A PSA test doesn’t actually tell you if you have cancer but it does help make the decision of when you should have a biopsy. My initial numbers were a little high for my age but my doctors determined they were not high enough for a biopsy yet. Here’s how it went:
2008-03 – 2.6 – First test was just over the limit for someone my age
2008-06 – 3.4 – Uh oh. Repeat is significantly higher. Off to the urologist.
2008-07 – 2.5 – Different lab. Urologist calms me down and talks me out of a biopsy.
2009-11 – 2.9 – A little higher but still in that high-two range.
2010-12 – 6.4 – WTF!? Total freak-out. I force a repeat just one week later.
2010-12 – 4.7 – Okay . . . that’s better than 6.4. We hope it’s “trending down” and wait 30 days
2011-01 – 5.2 – Sh*#. That’s not trending down. Urologist orders a biopsy.

So that’s where we are now.

Can’t lots of things cause a high PSA though?
Yes, there are other causes. BPH can cause a higher number, but generally not as high a number as mine, particularly in someone my age. BPH doesn’t cause prostate cells to leak PSA at nearly as high a rate as cancer. Prostatitis can cause it, but prostatitis is usually painful. I don’t have any pain. Some believe that some forms of exercise (especially cycling) can cause a temporary increase in PSA, but it wouldn’t cause a 5.2 in a normal 40 year-old prostate. Activities in which the prostate is put to work (ask a parent) can also temporarily cause a higher number but we . . . made sure that wouldn’t be a problem before the last two tests.

So while a PSA as high as mine can be caused by things other than cancer, and in fact statistically it appears that the odds are against it being cancer, the lack of other explanations is very troubling. And the fact that it seems to be following a rather steep trend line up also seems more suggestive of cancer than of other causes.

If it is cancer, though, don’t worry. Prostate cancer is very slow growing and men almost never die from it.
Prostate cancer is most often slow growing. My numbers are pretty high for my age, though, and worst of all they seem to be following a rather steep trend line. That would suggest a more agressive kind of cancer. One recent study suggests that the rate of change, known as “velocity”, is the best predictor of agressive cancers and poor outcomes. That study weighs heavily on my mind.

I know a guy who has prostate cancer and they’re just leaving it alone and keeping an eye on it.
That “watchful waiting” is sometimes done with men who are significantly older than I am. In my case, if they find cancer, and if it’s anything less than the worst kind that has already spread all over, I’m going to be eager to get that prostate out of there.

Can’t that surgery make you incontinent? Or was it impotent??
Both, actually. In some cases. In my case, because of my age, odds are pretty good of overcoming both. But those are high stakes so I would rather not have to make that gamble. That’s just part of the reason I want so badly for the biopsy to be negative.

If the biopsy says cancer, though, I want the thing out. I’ll deal with the consequences if and when they become a problem.

There are alternatives to surgery.
Yes, there is radiation treatment and even the placement of little radioactive rods in the prostate to kill the cancer. In general, though, once radiation is done surgery is no longer an option. And “watchful waiting” is generally done with older men.

No, if there’s cancer in there, and if it hasn’t spread to the point that it’s too late, I want the prostate out.

Hopefully the biopsy will be negative for cancer and then you’ll know you’re free and clear.
I SO hope it’s negative, and I’ll feel MUCH better if it is. A negative biopsy would certainly rule out advanced prostate cancer and mean the odds were even lower that it had spread. But just to put a negative spin on that hopeful perspective, a biopsy that is negative for cancer doesn’t necessarily mean no cancer is in the prostate at all. It just means that cancer wasn’t found in any of the little samples they pulled out of the prostate. If my PSA numbers stay high, or even worse continue to rise, I can expect more biopsies and more anxiety in the future.

When will you get the results?
The biopsy is Thursday morning. The urologist said to expect a week to get the results. I hope it isn’t that long. I’m hoping that the urologist doing the biopsy can also tell us something based on what he sees on the ultrasound used to guide the biopsy.

We’ll see!