Prostate Cancer Before 50

Less than 0.1

2009-06-04T13:33:00.001-07:00

I couldn't wait any longer, so I called for my PSA results. Once again, less than 0.1!

The Question

2009-06-03T14:50:00.003-07:00

The Question comes up periodically, whenever it's time. The Question haunts my dreams, occupies my waking hours, and adds a tinge of uncertainty to everything.

What's my PSA?

If it remains less than 0.1, all will be well,and the Question will quickly recede in my mind, at least until the next test date approaches.

If my PSA is anything else, life will change radically, assuming it's not a lab error. It would mean my cancer was systemic, and incurable with today's medicine. There might be a second PSA test to confirm, with an interim waiting period of a few weeks to 3 months, or I might head straight to the medical oncologist--a prostate specialist. With a rising PSA after surgery and salvage radiation, there would be only one realistic option. Castration.

How's that for drama?

Now, I almost certainly would not choose surgical castration, but rather medical castration. Most people are squeamish about the word "castration" and so we say hormone therapy, or androgen deprivation--but the effect is the same. I would become a eunuch, lose all interest in sex, and hopefully the cancer would be stalled for years. And while it was stalled, I would probably stay on the therapy. If all went well, perhaps it would stave off metastasis for a decade or more. More likely, it would last a few years. There is intermittent therapy, where you get to take holidays from androgen deprivation, but it doesn't sound all that great to me either way.

In the next few days, I'll find out the answer to the Question.

Salvage Radiaton: Nomogram updates

2009-05-14T12:42:00.005-07:00

It looks like the Memorial Sloan-Kettering Salvage Radiation Therapy nomogram on Nomograms.org (direct URL: http://www.mskcc.org/applications/nomograms/prostate/SalvageRadiationTherapy.aspx ) has been updated. It's now easier to use and the response makes sense. It used to give your result as post-surgery rather than post-radiation.
I had been thinking that the nomogram was too pessimistic, compared to the paper version. But what I didn't realize was that four months after the paper version was released in the Journal of Clinical Oncology, an erratum was published that corrected a mistake in regards to pre-radiation androgen deprivation (hormonal therapy). The corrected PAPER version of this important tool is here: http://jco.ascopubs.org/content/vol25/issue26/images/large/zlj0150759390003.jpeg ; however, I see no reason to use it because the digital nomogram is much easier, quicker to use, and less prone to human error.

Now both paper and online versions tell me that I've got a 39% chance of being progression free at 6 years. That jibes pretty well with Catalona's research that showed that long term success with prostate salvage radiation is uncommon--only about 25% of patients overall are progression free at 10 years. Of those who had a complete response to radiation, as I did, Catalona found that 35% were free from PSA progression.

The full text of the original article (remember, the nomogram in this original article is not correct) is here: http://jco.ascopubs.org/cgi/content/full/25/15/2035.

If you have a rising PSA after prostatectomy, and you're considering salvage radiation, I encourage you to read the original article and use the online nomogram at Memorial Sloan-Kettering.

FLHW

2009-05-04T11:16:00.003-07:00

I just ordered some bracelets from FLHW.org (Faith Love Hope Win), a charity run by David E. David is a guy about my age with advanced prostate cancer. His blog is one of the most compelling pieces of autobiography on the web.

I urge you to visit http://www.FLHW.org, buy a few bracelets, and read David's blog.

I think you'll agree that David is a true hero.

Undetectable PSA and odds of progression after salvage radiation

2009-03-26T13:29:00.002-07:00

http://www.oncologystat.com/journals/journal_scans/Achieving_an_Undetectable_PSA_After_Radiotherapy_for_Biochemical_Progression_After_Radical_Prostatectomy_Is_an_Independent_Predictor_of_Biochemical_Outcome_Results_of_a_Retrospective_Study.html

If you achieve an undetectable PSA after salvage radiation, this study shows your odds of being progression free 3.5 years later are 75%. But if your PSA doesn't fall that low, your odds are only 18%.

ha!

2009-02-16T17:01:00.002-07:00

From the March 2008 Atlantic Monthly "What's Your Problem?" Q&A column by Jeffrey Goldberg:

Is life after college really as monotonous and depressing as it looks?
--Ben, Manhattan, Kan.

Dear Ben,
No. It's worse! Just kidding. It's actually a joy. Except for the prostate exams.

Good news on PSA once again

2008-11-07T09:15:00.002-07:00

Less than 0.1.

A deep sigh of relief. A new lease on life.

With that, as promised, I'm putting this blog to bed. Unless there is really big news in the area of salvage radiation, I don't plan on posting or updating. There is a news feed at the bottom of the page that's automatically populated by news from Google, but I won't be manually adding anything.

And if I hit the mark again on my next PSA, I will probably delete the blog, so that I'm not promulgating obsolete information.

In case you're wondering, YES, we will be celebrating. Magic Kingdom, here we come!

the background picture

2008-11-06T21:15:00.001-07:00

The background picture behind the blog title is a shot of the Milky Way I took out in the desert. One of my hobbies is amateur astronomy. I put my old 35mm film camera on a tracking tripod for 3 or 4 minutes.

biography of a prostate

2008-11-06T14:06:00.007-07:00

Here's my history, mainly focusing on the time up until salvage radiation began. I was only 38 when we found I had a PSA that was out of range. My uro tried an antibiotic (Cipro) and high dose Motrin with some success. We then tried Avodart in an effort to prevent cancer (chemoprevention) without luck. I had 3 biopsies over the years, and a few urine analyses here and there (urinalysis never found anything).

Age 38
8 Dec 2000
bothered by frequent urination, went to primary care phys.
PSA 4.5
PCP said prostate was boggy
referred to Urologist
Biopsy Ordered

Jan 2001
Biopsy: negative for cancer, findings consistent with prostatitis
Start hytrin for blood pressure control; drug also provides some BPH relief

Age 39
16 Jul 2001
PSA 4.1

20 March 2002
PSA 6.1
START Cipro 500mg daily for 3 wks, Motrin 800 mg daily

Age 40
30 May 2002
PSA 5.7
Free PSA 11.9%
CONTINUE Motrin
Urologist believes probably prostatitis

30 Sep 2002
PSA 7.3
Free PSA 11.3%
START Avodart
STOP Motrin
ORDER Biopsy

November 2002
BIOPSY: negative for cancer, but PIN III found

31 Jan 2003
PSA 2.2
STOP Avodart

Age 41
03 Sep 2003
PSA 4.9
Restart Avodart
Urologist thinks PSA is elevated from BPH

23 Jan 2004
PSA 2.2
Continue Avodart

Age 42
24 July 2004
PSA 2.5
Continue Avodart

26 Jan 2005
PSA 3.3
Continue Avodart

29 Apr 2005
PSA 2.9
Continue Avodart

Age 43
11 Jan 2006
PSA 4.8 (on Avodart)
Abnormal DRE
Biopsy ordered

7 Feb 2006
Biopsy finds cancer
PIN also found
No perineural invasion
Gleason 3+4
20% on right
5% on left

24 Feb 2006
Pre surgical CT scan of pelvis and abdomen, and whole body bone scan. No mets evident. However, it looks like my shoulders are starting to wear out! (Degenerative changes in both AC joints showed up in bone scan). Plus a bulging disk in my spine at L5-S1.

17 March 2006
Pre-surgical chest x-ray is normal.

Age 44
14 April 2006
SURGERY
Robotic prostatectomy
Positive margin at apex and left lobe
No perineural invasion identified
Extension into capsule, but not through
Gleason 3+4
70% of gland involved
Prostate was 22.5 grams
Bundles on both sides were preserved.
stage t2c NX MX

24 April 2006
Catheter out

16 May 2006
PSA less than 0.1

15 Aug 2006
PSA 0.2

14 Dec 2006
PSA 0.6

REFERRED FOR RADIATION

Day before radiation commenced, PSA = 0.7

Radiation Jan-Mar 2007. PSA quickly fell to less than 0.1 and remains there as of late 2008. Note from radiation oncologist to urologist: looks like assumption of local-only recurrence was valid, judging by PSA response.

blood draw

2008-11-05T15:49:00.002-07:00

Had blood drawn yesterday. Figured a lot of people would be at the polls--seems to have paid off. There was only one person ahead of me.

Now the dilemma that many of us face--to call the office or wait and get it in person? I usually can't stand the wait, and call. One time a nurse gave me an incorrect figure over the phone, leaving out the "less than", even when I questioned her..so I was needlessly anxious. That's the risk of getting it over the phone.

Reading "The Prize" by Daniel Yergin now. Recommended by a college professor I know. It's an enormous book, but so far very readable. It's about oil, in case you're wondering.

I'll post my PSA--which will be 20 months post-salvage radiation--as soon as I find out.

Wish I could skip the DRE...

Miscellaneous

2008-10-28T09:42:00.002-07:00

I ran in a local 10K (6.2 miles) event the other day. It's the first time I've run that far in years. I did pretty well, relative to my own past performance. I was still in the back of the pack, but I ran 12-minute miles, much better than the 14 minute miles I had been running up until then. I really got out of shape from just before surgery up until last month.

I usually don't eat before a long run. I use an energy gel (Carb Boom) about 15 minutes before, and if I'm going to be running for an hour or more I take another one with me. They taste pretty good--like pie filling. They're made from fruit and are fairly low in sugar compared to other gels. Just enough of a boost to do the run without getting shaky, and no stomach upset as long as I drink some water with the gel.

After running, I make a recovery smoothie in the blender that has ingredients like this--varying depending on what's in the fridge:

half cup frozen blueberries
half cup frozen strawberries
Half a banana
Cup of pomegranate juice
Cup of plain yogurt or cup of low fat vanilla frozen yogurt
Whey protein powder
a few ice cubes

OR--once in a while I have an Egg McMuffin.

Current reading list:

Nothing to Be Frightened Of (Julian Barnes)
2nd Chance (James Patterson) (tip of the hat to David E)
Moby Dick
Six Easy Pieces (Richard Feynman)

nail biting time

2008-10-17T10:53:00.002-07:00

So I'm one month away from my next appointment with the radiation oncologist. Which means I'm less than three weeks away from the blood draw for the PSA.
I find myself Googling for anything about the effectiveness of salvage radiation that I haven't seen before. So far, nothing new.
When you look at the graphs, most men respond initially to salvage with a drop to 0.1 or below. However, for the next several years, people "fall off" the curve, moving out of the "percent progression-free" category.
Thus the return of PSA anxiety.

With luck, I'll have another "< 0.1" report and go back to living my life fairly normally for the next 6-12 months, depending on when the RO wants to see me again. And, as I've posted before, if that is the case, I plan on starting a shut down of this blog, to be complete upon the NEXT good PSA report.

I have developed a backup plan, however. If my PSA rises, I have identified a medical oncologist who specializes in prostate cancer at a leading NCI cancer center that happens to be in a nearby city. I've decided not to see the medical oncologist I consulted before. Nothing wrong with him, but he does not specialize in prostate cancer.

I feel great, and continue to train for a marathon in January.

Us Too University

2008-09-23T09:51:00.001-07:00

This looks interesting!
Us Too! University

"Us TOO International is proud to bring you a vitally important event featuring leading experts in the area of prostate cancer issues and treatments, sharing the most current information you and your loved ones NEED TO KNOW. Topics range from emerging treatments, comprehensive treatment and care, post-treatment issues and solutions, and clinical trials currently underway.

Us TOO University Tempe will take place Friday, November 7, 2008 from 4:30-10:00pm at The Buttes Resort by Marriot. There will be free parking avaiable, free refreshments, excellent door prizes and overflowing goody bags. The night will include exhibitors with products & services and will end with time to discuss and answer your questions...."

cholesterol

2008-08-07T13:27:00.002-07:00

One month on South Beach reduced my overall cholesterol 26% to 189. My other numbers, out of whack a few months ago, have fallen into place as well--triglycerides, HDL, LDL, glucose.

However, my white blood cell count remains low at 2.2 (normal range 4-11). My primary care doctor is not concerned. Not sure if I should be. Nothing else looks strange, although absolute neutrophils are slightly low.

Life is good on the Beach

2008-08-01T09:11:00.002-07:00

I've lost 15 lbs. now in one month on the South Beach Diet. 30 minutes on the treadmill each day accelerates the disappearance of my belly.
South Beach also is easy on my digestive system--heartburn is very rare, and so is gas and bloating, which has been a continuing problem since radiation.
As I lose weight, I have more energy for the treadmill and for being active, and the more active, the faster I burn fat. It's a nice feedback loop.
Had blood drawn this morning for a total metabolic panel (main concern is cholesterol). Waiting room had a TV blasting, and if you don't think obesity is an epidemic in this country, you don't get out enough. Heavy people seem to be especially concentrated in places like labs, I guess because of the health issues related to weight. The chairs were barely able to hold some of these folks.
I think the country is on the verge of a health emergency from obesity. I can sympathize--a couple of months ago I was at the top end of "overweight" and heading quickly towards "obese" as defined by body mass index.
My first marathon training session will be in 3 weeks. I'm accumulating the gear now, like WrightSock running socks that are supposed to help prevent blisters.

I admit it's getting better...

2008-07-29T08:44:00.003-07:00

...a little better, all the time.

I've lost 12 lbs. on South Beach, and I'm progressing in the 100 Pushup challenge. I've been on the treadmill a little, and I'm pretty sure I'm going to sign up with 1stMarathon, a national network that prepares newbies to run a marathon--in my case, the PF Chang's Rock & Roll Marathon in January.

It's time to get my cholesterol checked. If it's still high, it's probably time for statins. That's not a bad thing--statins seem to help with prostate cancer (if any is left in me--hopefully not) and in preventing dementia.

I've been taking fish oil supplements, 900 mg each night at bedtime. I found that the ones from GNC don't cause any aftertaste or nasty fish burps like I've experienced with other products.

Maybe the exercise, weight loss, and fish oil will have brought down my numbers, but I doubt it will be enough. I've always had high cholesterol.

Life goes on

2008-07-15T16:48:00.002-07:00

I'm on the South Beach Diet now, and my gut is much better for it. I still have some issues post-radiation with the colon being a little over-active. It's very quiet on South Beach, except when I overdo artificial sweeteners like sorbitol (which can affect anyone if they eat enough of it). I lost 8 lbs. in 2 weeks so far on South Beach (a diet that has worked well for me in the past).

Working on the Internet 100 Pushup Challenge, too.

I have to go in before long to get cholesterol results. I have a feeling I'll be on cholesterol-lowering medication before long.

No PSA until November. At that point, if it's still less than 0.1, I'll probably stop posting to the blog and eventually shut it down, as I focus my energies and attention elsewhere and stop obsessing so much about salvage radiation.

An update to "Even Better Odds"

2008-06-13T10:01:00.003-07:00

Earlier, I reported on research by Loeb, et al., on the efficacy of salvage radiation (see "Even Better Odds" below).

It turns out their research really didn't turn up improved odds for me like me--pos. margins and/or extracapsular extension.

I read a more detailed abstract of this on the AUA website. (I've also ordered a full text copy of the article for my own use).

On the AUA site (where they make poster sessions available for free) it says (all caps is my emphasis) "In patients with SM+/ECE, SVI, and LN+, the 7-year progression free survival rates WITH OBSERVATION were 62%, 32%, and 7%, respectively. AMONG THOSE WHO FAILED, 56%, 26%, and 0%, respectively, maintained an undetectable PSA for 5 years after salvage radiotherapy."

Okay. This means--using positive margin patients like me as an example--that 62% did not progress in 7 years of observation. Of the men that DID see their PSA rise during observation (like me), 56% seemed to have a good response to salvage radiation, at least out to 5 years.

So I'm back to post-salvage progression-free odds in the neighborhood of 55-60% again, like Stephenson's research indicates.

The NEW Prostate Cancer Infolink

2008-06-05T20:47:00.003-07:00

If you haven't seen this revamped site, drop everything and check it out right now. Tons of good information, and it's watched over and run by medical professionals. My friend John, (aka) az4peaks@newpca.org, is there. John is a real "go-to" guy for information on this disease.
http://prostatecancerinfolink.net

Don't miss out on the social networking aspect of the site. If you want to talk about prostate cancer, it's the place to go.

Look for me (Galileo) there!

Survival Benefit

2008-06-05T15:39:00.002-07:00

A preliminary, retrospective study shows that salvage radiation may offer a survival benefit in a subgroup of patients. Looking at two groups--those with PSA doubling times greater than or equal to 6 months, and those with doubling times less than 6 months, both groups did better with salvage radiotherapy than without--BUT--those with relatively fast doubling times had a more pronounced benefit.

Ten-year prostate cancer survival was substantially higher for men given salvage radiotherapy alone or with hormonal therapy than for those who received no salvage therapy (86%, 82%, and 62%, respectively, P<0.0001),>

Trock B, et al "Prostate cancer-specific survival in men with biochemical recurrence after radical prostatectomy: impact of salvage radiotherapy vs. observation" ASCO GU Meeting 2008.
http://www.medpagetoday.com/MeetingCoverage/ASCOGU/dh/8357

Even Better Odds

2008-06-04T12:59:00.002-07:00

Eur Urol. 2008 Jul;54(1):88-96. Epub 2008 Apr 1.: Long-Term Rates of Undetectable PSA with Initial Observation and Delayed Salvage Radiotherapy after Radical Prostatectomy.

Loeb S, Roehl KA, Viprakasit DP, Catalona WJ.

Department of Urology, Johns Hopkins Medical Institutions, Baltimore, MD, USA.

PubMed citation:
http://tinyurl.com/4nclog

"The long-term rates of undetectable PSA associated with an SRT strategy were 83% and 50% for men with SM+/ECE and SVI, respectively. In the subset of 716 men who did not receive any hormonal therapy, the corresponding long-term rates of undetectable PSA were 91% and 75%, respectively."

91% long term rate of undetectable PSA. That's music to my ears, since I fall into that statistical group (positive margins, no hormonal treatment).

70 beats 60

2008-05-05T12:45:00.002-07:00

"Improved outcomes with higher doses for salvage radiotherapy after prostatectomy." King, CR, and MT Spiotto. International Journal of Radiation, Biology, and Physics. 1 May 2008, 71(1):23-7. http://www.ncbi.nlm.nih.gov/pubmed/18207668

"PURPOSE: To evaluate relapse-free survival with higher doses for patients receiving salvage radiotherapy (RT) after radical prostatectomy (RP). PATIENTS AND METHODS: A total of 122 patients with pathologically negative lymph nodes received salvage RT after RP from 1984 to 2004...CONCLUSIONS: A clinically significant dose response from 60 Gy to 70 Gy was observed in the setting of salvage RT after prostatectomy. A dose of 70 Gy to the prostate bed is recommended to achieve optimal disease-free survival."

Less than 0.1 again

2008-05-01T12:29:00.002-07:00

I had blood drawn last week, and just got the news that my PSA was again less than 0.1. Time to celebrate!

Nomogram posted...but with problems

2008-04-28T12:21:00.002-07:00

The Memorial Sloan Kettering site http://www.nomograms. org finally posted the salvage radiation treatment nomogram, but it appears to be full of errors. To begin with, the results are listed as progression free after surgery, not SRT. Even if you assume a simple mistake in labeling the results, the nomogram is still wildly different from that published in the original paper format. Hopefully this will get fixed soon. I've sent emails to both MSK and Dr. Stephenson about this.

blood drawn

2008-04-25T08:59:00.003-07:00

Well, it's been 13 months since I finished salvage radiation. Had blood drawn today--I'll see the doc on May 7.