Free for Kindle

I've put down my salvage radiation story and what I think are the most important facts in a Kindle single.

On New Years's Eve and New Year's Day this 6 page article will be available completely for free.  Don't have a Kindle?  You can get free Kindle software for your PC or phone.

Recalled to Life: Salvage Radiation for Recurrent Prostate Cancer

and it's always free to Amazon Prime members.

less than 0.1

For those of you keeping score at home, my PSA remains < 0.1, nearly 5 years after finishing salvage radiation.

an early look at my PSA

I'm not scheduled to see my radiation oncologist for a PSA check and DRE until late next month.  It is, however, time for my 6 month CBC & lipid panel with my primary care doc.  This is mainly to check my cholesterol in order to get a refill of Pravachol.  I noticed he had also scribbled "PSA" on the lab request, probably out of an abundance of caution in looking at my file.  So I figured why not get a sneak peek?  After all, if PSA tests were free, I'd get one every month!
I'll report back next week on the results.

To recap my situation, I was diagnosed in 2006 at the age of 43 with prostate cancer.  I had surgery early that year and the pathology showed Gleason 3+4, penetration into but not through the capsule, and I had a positive surgical margin.  My PSA, after adjusting for medication, was about 10.0 at the time of surgery.
At first my PSA was fine after surgery--less than 0.1, but that didn't last.  By 9 months, it was detectable and rising fast.  I consulted a medical oncologist and radiation oncologist, and started salvage radiation in the form of IMRT at my local hospital.  The day before radiation, my PSA was 0.7.    Within 6 months of the end of radiation, it fell to less than 0.1, and it has remained there since.  It's now been close to 5 years since my radiation treatments.
I continue to get 6 month PSA checks and exams from my radiation oncologist.

Guest Post by David Haas

Cancer Survivor Networks: Connecting with Others

When you have been diagnosed with cancer, it is easy to feel alone and isolated. You don't need to feel alone; there is hope. Other cancer survivors are ready and willing to help you. All you must do is seek out a support network either online or through a local group with regular onsite meetings.

Cancer survivor networks allow you the opportunity to share your innermost feelings about cancer and treatment with others who understand what you are going through. An article by the Mayo Clinic titled "Support groups: Make connections, get help," states that cancer support networks often have other benefits that you might not expected, such as providing a source of information about cancer and available treatments and an opportunity to learn tips and information from other cancer survivors who are further along in their treatment.

Online meetings have several advantages. For example, if you are undergoing treatment and you aren't feeling well enough to go out, you can attend meetings or participate in forums online. Many of the online meetings are conducted via a chat room and you do not need sophisticated technology to participate. The forums allow you to post questions and read the answers posted by other cancer patients. Online support groups have the additional benefit of allowing you to find a group of cancer survivors who suffer from the same illness that you have, for example, mesothelioma or colon cancer. In addition, many of these forums even have a doctor or nurse available to answer basic questions about treatment or recovery.

If you aren't technologically savvy or if you prefer to connect with people on a more personal level, you can participate in face-to-face meetings. During these meetings you can share experiences with real cancer survivors in your community. Many survivors find that the emotional support and feeling of belonging that they experience in a face-to-face support group makes recovery more tolerable.

If you are interested in finding a cancer survivor network, ask your doctor or nurse for a list of groups near you. Your local telephone book or newspaper might provide additional information as well. If you prefer an online group, search for a group or visit the website of the national foundation for cancer or for your particular type of cancer. You have nothing to lose by reaching out to others, but you have everything to gain. 

Thank you.

And I heard the voice of the Lord, saying, Whom shall I send, and who will go for us? Then I said, Here am I; send me.
Isaiah 6:8


To all those who served, thank you.

A Journal Entry From 2006

Two days after Christmas, in 2006, I started keeping a journal.  Here is an excerpt from that day:

Story so far--PSA rising after surgery. Diagnosed February 2006, surgery in April.  First PSA undetectable, second 0.2.  December PSA 0.6.  I think I'm in big trouble.  Meeting with a radiation oncologist and a medical oncologist January 9.  I will try radiation, I think, even though the cancer is probably distant rather than local, since PSA rose so quickly.  I imagine hormones and chemo are in the works before long.  Worried about how long I will live, but more importantly, what that life will be like, with all the effects hormone therapy causes.  Lots of thoughts passing through my mind, so figured it's a good time to start journaling.  Waking up at 4 am with anxiety, but doing okay during the day.  Read a part of Walsh's book yesterday--a study where a subset of men had PSA rise within one year.  Only 1 of 16 got any benefit (from radiation) and his PSA started to rise three years later. Worried about _____ growing up without me.  Everything is different now.  Should I bother putting anything into my career?  Should _______and I plan a romantic trip now, in case HT is going to destroy that part of life?  Should I start getting into pictures and videotapes more now so that in the future, ____________ can see me as I was, not sick?  Should we bank some family experiences now?  I think I have a 74% chance of surviving three years but only a 15% chance of ten years.  That's a pessimistic view (looking at "Risk of Prostate Cancer-Specific Mortality etc." from JAMA 2005; 294: 433-439.  

It was actually an overly pessimistic view.  I had thought, based on what my surgeon told me and the yellow Post-It attached to the record he sent the radiation oncologist, that my surgical margins were negative.  But when the oncologist read the file, he found that actually, my margins were positive.  Positive surgical margins mean that cancer was present right up to the very cut edge of the removed tissue, meaning that it's likely some bits of cancer were left behind in the region of the prostate.  And those cancerous leftovers were a likely culprit for my rising PSA.  Since their location could be approximated (the prostate "bed", or fossa), radiation was more likely to effect a cure, than if the margins had been negative.

I had salvage radiation in early 2007.  Within a few months, my PSA fell back below 0.1, where it has remained.  Am I cured?  It's too soon to tell.  It may always be too soon to tell.  But I'll take what I can get.

Diamondbacks CEO announces he has prostate cancer

Diamondbacks CEO announces he has prostate cancer

Sunrise on the Bike Trail

As I've blogged about before, I enjoy riding my bike along the local canal system. It's a stress-buster and helps me manage the weight.

I hit the trail just after sunrise this morning, and was rewarded with this view.


Healthwise, everything is just peachy.  Weight is level, right in the middle of my healthy range; blood pressure and cholesterol are showing the best numbers in decades.  Next PSA (and DRE) in January 2012.

blood donation

Donated blood today.

PSA update, 4 years, 4 months post-SRT

My latest PSA, now 4 1/3 years after completing salvage radiation, is still <0.1 .

blood draw yesterday

...but not for PSA.  That will be next month.  Yesterday the blood draw was a comprehensive metabolic panel, cholesterol, etc.  I expect my cholesterol numbers to be excellent again, given the Pravastatin and weight loss, and I'm curious about what my white blood cell count will be.  It was low last time, and my doctor was concerned. Specifically, my neutrophil count was low. But since I wasn't having trouble fighting off infections, he didn't refer me to a hematologist.  I still am very healthy in that regard--no problem with infections of any kind.

Weight and Risk

Overweight men who had prostatectomies, saw their PSA rise, and then were put on hormone therapy (aka ADT) were three times more likely to see their cancer spread. Obese men had five times the risk.

"Obesity May Raise Risk of Prostate Cancer Spread"

Several months ago I was overweight, and on my way to becoming obese, but I've shed 40 lbs. with Weight Watchers and now have a normal BMI. My blood pressure and cholesterol have improved as well. And if my cancer comes back, it sure looks like it would be better to have a healthy weight.

 

My weight since joining Weight Watchers. 

 

 My blood pressure and heart rate trend over time as a result of losing weight and exercising.

De-stress with chess

I still find online chess a great way to get my mind off the worries of the day, including cancer.

Martin receiving radiotherapy for prostate cancer

This is very similar to my experience. The video is sped-up, otherwise you'd be bored to tears. As you can see the treatments themselves are very easy on the patient. Over time, side effects may build up, but an IMRT treatment is about the easiest thing you can undergo medically.

Latest Salvage Radiation News

Researchers in Munich, Germany, studied 96 men at a single institution, and found that--as did earlier research done by William Catalona and others--that although most men show a significant drop in PSA after SRT, in the long run, most will see their PSA start to rise.  In this case, 35% remained free of PSA progression at 5 years post-SRT.

Outcome After Conformal Salvage Radiotherapy in Patients With Rising Prostate-Specific Antigen Levels After Radical Prostatectomy.

Klinikum rechts der Isar der Technischen Universität München

 

 

 

Clinical Trials

This was in an issue of the New York Times this week.  It's sort of an op-ed advertisement for Mt. Sinai hospital.   The authors call for increased funding for clinical trials for breast cancer.

Clinical trials are a crucial part of all cancer research.  I'm reading The Emperor of All Maladies: a Biography of Cancer by Siddhartha Mukherjee right now (highly recommended, by the way) and just happen to be on the part that describes how clinical trials for cancer came to be.  He opens with a quote by H.J. Koning: "Randomised screening trials are bothersome.  It takes ages to come to an answer, and these need to be large-scale projects to be able to answer the questions.  [But...] there is no second-best option."



Indeed, many cancer trials never get off the ground because they lack participants.

Encouraging New Study on Salvage Radiation

Varian linear accelerator.  

The March 2011 issue of Cancer, a journal from the American Cancer Society, carried promising news for all of us SRT (salvage radiotherapy) guys:  salvage radiation has been shown, for the first time, to confer a survival benefit across the patient population, and PSA doubling time did not matter significantly.   Some well-known doctors (D'Amico and Moul, for example) from Harvard and Dana Farber co-authored the study which looked at 519 men who had prostatectomies at Duke University between 1988 and 2008.  The median followup time was 11.3 years.  The way I understand hazard ratios, the results mean that the risk of death from all causes was roughly half that of men who did not have salvage radiation. 


http://www.ncbi.nlm.nih.gov/pubmed/21437885?s_cid=pubmed






















Photo courtesy digital cat: http://www.flickr.com/photos/14646075@N03/3798458685/. Used under Creative Commons license with thanks.

How Old is Too Old?

I know my father, a prostate cancer survivor nearly 80, has stopped PSA testing.  He was treated nearly 20 years ago and his PSA has been undetectable.  What's the point of testing?  If his PSA starts creeping up at this point, he's in no danger. 

Screening Prostates at Any Age

By GINA KOLATA

Published: April 11, 2011

Older men are getting screened for prostate cancer at a higher rate, though many experts discourage screening for men whose life expectancy is 10 years or less.

 http://www.nytimes.com/2011/04/12/health/12prostate.html

Gina Kolata is one of the best medical writers out there, IMHO. 

 

Kindle - a portable prostate cancer library?

I just got a Kindle--quite an amazing piece of technology.  Far lighter than an actual book, it can hold thousands of titles.  I started looking at what prostate cancer books are available in Kindle format, and there are quite a few.  Not all, but a lot of the ones I like and refer to often.  I will probably load up with a few, so I always have a reference library at hand.

If you haven't held a Kindle, you should give it a try.  The display is not a computer screen.  It's not LCD. There is no light shining from it.  It uses real ink particles on a surface that looks like real paper.  Battery life is impressive, since after arranging the text on the page, the device isn't using any energy to display it.  Books on Amazon are cheaper than the paperback versions (Walsh's book, for example, is $11.55 in paperback, but $9.99 in Kindle format) and they download very quickly.  I bought and downloaded a novel last night--Game of Thrones, about 600 pages--in a minute.  You can literally think of a book and be reading it in a few moments.  Want to read a major newspaper?  You can buy today's copy--just today's, if you want--for the newsstand price and take it on the plane with you without messing with newsprint and all the rest.

I got the one that is $139.  It doesn't connect via 3G, only Wi-Fi, which is fine with me, since I have wireless at home, work, and it seems to be in most coffee shops now as well.  I also bought the leather cover. 



Here are some prostate cancer books available in Kindle format.

Lifetime goal achieved

Yesterday I finished 6 weeks on the maintenance phase of Weight Watchers, and am now a Lifetime Member.  I won't have to pay any meeting dues again as long as I stay within 2 lbs. of my goal weight.  I have lost 37 lbs. since October.

My blood pressure is the same as last month (considerably down from October) but my resting heart rate has gone down to a healthier level.

I'm up to doing 3 sets of 9 reps in my pull-up workout, and expect to complete the 100 push-up challenge any day now.

My next PSA check is still a long ways off (end of July).

My bike is ready from the local bike shop after its tune-up, the weather looks great (in the 70's and 80's for highs next week) and the road is calling!

Another independent validation of the Stephenson nomogram

The nomogram developed by Dr. Andrew Stephenson was independently validated again, last year, by doctors at Loyola University.  The "Stephenson nomogram" predicts the outcome of salvage radiation and is the basis for the interactive tool on the Memorial Sloan Kettering Cancer Center (MSKCC) website.

The researchers followed men for a median of 71 months and found no significant difference between the outcomes for their patients and what the nomogram predicted.  At a median time of 71 months, 46% were progression-free (that is, their PSA had not risen after salvage radiation.)

Biking Through Cancer, and Life

About a year ago, with the help of my wife, I got a nice bike for my 48th birthday.  It was my first decent bicycle, a Gary Fisher Tiburon.   It’s a hybrid, meaning that it’s not quite a mountain bike, nor is it a road bike.  It’s ridden in a comfortable upright position, with plenty of springs and shocks to cushion the middle-aged rider.  It’s the bicycle version of a Toyota RAV4.  A little bit SUV, a little bit sedan.  It’s beautiful, and I love it unashamedly.

I chose this particular model because I envisioned myself using it to commute the two easy miles to work.  I do--sometimes.  But the real joy, like so many of life’s pleasures, has been unexpected.  It turns out that I do ride to work sometimes, and I do take my son on little outings; but the real mileage comes in the form of longer rides--one or two hours--along the many miles of irrigation canals that run through this metro area.



The canals, some of them started in the 19th century, follow ancient Hohokam Indian canals.  Paved bike paths run along each side, diving beneath intersections in tunnels.   Wide open spaces within an urban environment await the biker, calming the psyche and invigorating the spirit.  It’s easy to forget that you are in the middle of a three million-plus metropolis.  

I come across parents taking their kids for first-time bike rides, horseback riders roaming through vast, grassy  flood-control fields, disc golf players, runners, people fishing for white amur and catfish from lawn chairs, and inevitably, the homeless.  In one particular tunnel, early in the morning, I often see Reading Guy, who sits with a book in his little camp before departing for the day.   The tableau of characters and landscape recalls the childhood classics  by Lucy Boston,  the Green Knowe books.

Prostate cancer, as a challenge and worry, has faded over the years, with consecutive undetectable PSA tests and clean exams (if you’re reading this blog for the first time, I was diagnosed at age 43, treated first by surgery and then with salvage radiation when my PSA rose).  There are other issues now within my family in regards to health and well-being, and those, along with work pressures, and everyday anxieties are the reasons I get on my bike and ride miles from home.  



As the miles pass, the worries diminish behind me.  I stop to eat lunch beneath massive eucalyptus trees planted a hundred years ago by long-departed farmers.  In the Green Knowe book, the trees were sometimes more than trees, and I think about this briefly as I sit back against their cool trunks.  Then I relax and just exist in the moment.

GOALLLL!

I'm at my goal weight for Weight Watchers.  I actually hit it a couple of weeks ago, and I'm now on maintenance.  It's nice to have a bunch more points to spend each day.  So far, so good.  6 weeks on maintenance, staying within 2 lbs. of goal,  and I'm a Lifetime Member (no more $ for meetings).

I'm now up to 3 sets of 6 reps each for pull-ups (more if I don't hang 100% down in between, but I guess that's cheating).

Can Exercise Keep You Young?

From the New York Times:
Well: Can Exercise Keep You Young?

We know that prostate cancer is directly related to aging.  So this should be of interest to all men.

pull-ups

I can now do multiple sets of complete, full-hang pull-ups, 4 reps to a set--unassisted.  It wasn't long ago that a single pull-up was a challenge.  I'm already anticipating buying a dip belt so I can add weight to my pull-ups, once I'm doing 10 or more reps.

Prostate Cancer Genome Decoded

"By mapping the full genetic blueprint of the tumor, researchers hope the information will eventually lead to the development of more targeted drugs and a better understanding of which prostate cancers are likely to spread, one of the biggest challenges for physicians and patients."

http://www.businessweek.com/lifestyle/content/healthday/649762.html

Exciting news; if not for us, then our sons and grandsons.  Hopefully this is a first step towards truly  discerning indolent from aggressive prostate cancer.

exercise

I've been exercising a lot more in conjunction with my weight loss efforts.  Today I did 16 miles on my hybrid bike (earning 7 WW points).   I also just starting using an Omron heart rate monitorOmron HR-100C Heart Rate Monitor, which seems to work very well.  Now I now when I'm at an optimum level of exercise.
Three days a week I do dumbbell workouts and two days a week I do pull-ups on a pull-up bar I installed in the doorway of our laundry room.  When I started out I could do one, now I can do three pull-ups from a complete hang.

weight update, January 28

I have now lost 30 lbs. on Weight Watchers since I started in October 2010, and am nearing my ultimate goal.

Blood pressure

Since my weight loss, my blood pressure has fallen from an average of 122/73 in October to 114/73 now.