PSA Rising

…whatever that means…

Every man—with or without a prostate—would like a PSA of zero or close to zero. For many prostate cancer survivors (like me) there can be a gradual PSA increase over the years. I have had regular PSA testing for the past 10 years. For more than eight of those years my PSA has stayed about the same; somewhere around four. This was before, during, and after treatment (there were brief dips after surgery and radiation). Zero would have been better but I can live with four. I have lived with four.

Then, in a 12-month period, my PSA started to rise. I switched medications. It kept right on inching up. Five wasn't so bad but in a couple months it was eight. A few months later it was 12, then 13, and finally (I hope) 14. It seems to be stabilized for the moment. Why does this happen? How does this happen? What does it mean? Nobody seems to know. It just happens. What I do know is that the next generation of medications will be a lot more spendy (spendy is a well-known medical term) and with no guarantees.

There doesn't seem to be a consensus about when a PSA number is “high” or “of concern” or “critical.” PSA numbers can range from zero to 2,000 or more. Lower is better, of course, but how high is high? As long as I wake up every morning (not early), walk to the bathroom by myself, visit friends, walk to the mailbox (and back), and drink a glass or two of wine I’ll consider my numbers to be in the “normal range.”

axman

A Change of Scenery--A Different View

...as long as I can find my glasses to see it

Like many of my blogs, this one is only sort of related to prostate cancer. But I believe there are many things related to my health and the progression of any disease. Medical and scientific proof may be lacking, but how I feel is how I feel.

We just returned from two weeks in Hawaii--with our two-year-old grandson (and his parents). It was relaxing, fun, entertaining, and pushed our physical limits chasing a two-year-old up and down stairs, up and down the beach, and up and down volcanoes.

Taking time away from home always has positive effects on me (losing weight is not one of them). I think less about my aches and pains and diseases, and enjoy the adventure of whatever happens wherever I am. And I don't have to spend even a minute thinking about my to-do list at home. The glow will fade but there's always  the next time. I will repeat my motto: Do as much as I can as long as I can. But more and more slowly.

axman

Bigger is Better, by Gosh!

…but does it really matter?

In a study reported by the Dana-Farber Cancer Institute and Brigham and Women’s Center in Boston, a small percentage of men who had been treated for recurring prostate cancer reported (complained, actually) to their doctors that their penis seemed to be shorter than before treatment.

A report, published in the January 2013 issue of the journal Urology, concludes that perceived penis shortening in men with recurrent prostate cancer may affect their quality of life.

The survey included 948 men who had been treated for prostate cancer and the prostate cancer recurred. 3.7 percent of the men surveyed had undergone prostatectomy and 2.7 percent of men who had radiation plus hormone therapy reported penis shrinkage concerns. No men who received radiation without hormone therapy reported penis length concerns.

Although the study seems a bit unscientific (to me anyway), it points out it is very important that all men facing treatment need to know what side effects they may face from each of the several possible treatments. The conclusions make good common sense but, in fact, no penises were actually measured before, during, or after the survey. No questions about penis length were included in the survey. All concerns about penis shrinkage were offered spontaneously by men being interviewed.

My unscientific take on this…

A large percentage of men who undergo any kind of prostate cancer treatment will eventually have an increased risk of incontinence and impotence—regardless of penis length. This certainly trumps penis size in my world. In the past ten years I have had a radical prostatectomy, gone through radiation therapy, and taken hormones more than five years. I have concerns about my health, side effects, and survival potential. I keep track of PSA increases, hot flashes, possible metastasis, nausea, fatigue, and weakness. I believe most men with prostate cancer adapt pretty well to whatever happens; the nastiest of side effects and the inevitable progress of incurable cancer.

For me it’s a matter of priorities. I gotta admit that penis length is way, way, way down on my list of what’s important in the treatment of my prostate cancer. But that's just me. What do you think?

axman

Merry Christmas and a Happy New Year—Really

Holidays are good—for me, anyway

Keeping busy has been a good way for us not to focus on health problems. Carol and I enjoy getting together with kids, grandkids, and old friends. We do that on a regular basis throughout the year but it’s a little more special during the holidays. Family has always been important to us (even when some of our kids were teenagers and didn’t like us very much). Now that they’re all in their 40s we’ve been forgiven.

As we navigate through our 70s there are more and more health concerns—many of them minor—and a noticeable slowing down (both mental and physical, I fear). That’s all normal and so far our slowing process hasn't resulted in a full stop.

It is taking me longer to write these blogs and draw the cartoons but they eventually get posted. I never actually thought much about getting older and slower. It just happened. Worrying about aging and health doesn't do any good, anyway.

My life reality includes: cancer still sucks, treatments are improving, clinical trials are often available, life is what it is, and I’m looking forward to a great 2013.

I wish all of you a healthy and active 2013 and “give ‘em hell.”

axman

What We can Learn from Kids

Children's cancers are treated different than adult cancers...

Cancer in children and teenagers is relatively rare, making up only about one percent of all cancer cases in the U.S. But according to the National Cancer Institute, that still means more than 12,000 children in the U.S. under the age of 15 will be diagnosed with cancer this year. Cancer is the second leading cause of death for children—after accidental injuries. During the past 20 years, the childhood cancer five-year survival rate has dramatically increased from 60 percent to more than 80 percent.

                              

Childhood cancers are usually quite different from adult cancers. They often form in parts of the body that are still growing and changing, such as the blood system, brain, nervous system, and kidneys. There is no known cause for most childhood cancers. Leukemias (blood cell cancers) and cancers of the brain and central nervous system account for more than half of all childhood cancers. Pediatric (childhood) cancers tend to be more aggressive than adult cancers.

So what does this have to do with prostate cancer in older men? In part it may relate to participation rates in clinical trials. In stark contrast to adult participation in clinical trials (less than five percent) well over half of all children with cancer participate in clinical trials. Improvements in treatments developed in clinical trials account for the rapid improvement in survival rates. Cancer deaths in kids have decreased dramatically in the last three decades. 

According to ASCO, the American Society of Clinical Oncology, many pediatric clinical trials are focused on new treatments, evaluating whether a new treatment is safe, effective, and possibly better than the current (standard) treatment. These types of studies evaluate new drugs, different combinations of existing treatments, new approaches to radiation therapy or surgery, and new methods of treatment. Researchers also focus on easing symptoms, reducing toxic side effects, and reducing side effects that may occur after treatment has been completed. 

Clinical trials have made a major contribution to the many advances in treating childhood cancer. Greater participation by adults in cancer clinical trials may lead to more rapid advances, too.

axman

Thanksgiving is for Giving Thanks

Life is short so take advantage of every opportunity...

As I get older (and believe me, I do feel older) I am finding a lot of things to be thankful for. For those of us fighting any kind of cancer I believe this is especially important. It can be easy to focus on life not being fair, treatment being expensive, conditions getting worse, and not being able to do what we used to do. True or not, there's not much we can do about them.

My wife Carol and I have been able to spend time with all our kids and grandkids during the past several weeks--not always the same time or the same place, but together nonetheless. It was great! I encourage you to spend time with family and friends, and not just during holidays. Most of the people I know who are living with a serious disease have a very positive outlook on life. It's fun to be around them. We laugh a lot.

Our motto is: DO AS MUCH AS YOU CAN AS LONG AS YOU CAN. So far, so good. I just do it a lot slower than last year.

 I sometimes think about the good old days but as far as I'm concerned, the good days are now. If this sounds like I'm out of touch with reality, maybe so. I know I won't live forever--neither will you. However long any of us survive will probably seem better if we focus on being active and happy and not angry and miserable. Just saying.

axman

Not Me--Just Get Some Results

Here I go again...

I read an article recently which pointed out that 20 percent of adult cancer patients in Great Britain participate in cancer clinical trials. The author was bemoaning the fact that the number wasn't higher. Most oncologists would be more than pleased with a 20 percent participation rate. We know that as many as 80 percent of young cancer patients (21 and younger) in the U.S. participate in clinical trials. But, still, only three to five percent of adults with cancer in the U.S. ever take part in a clinical trial.

I'm sure everybody who chooses not to participate has reasons that make sense to them.

A trial takes too much of my time, the distance to the trial center is too far, it probably wouldn't do me any good and I might even die sooner, I'd just be helping to make the pharmaceutical company richer, I'd be the one to get the sugar pill, and many many more beliefs and thoughts. Some of them might be accurate. Some of them merely myths.

Many trials that might possibly be beneficial are never conducted because of lack of volunteers. Others end up with unclear results because the number of participants is not large enough to conclusively prove whether or not the drug is effective or more effective than current standard treatments.

In my 10th year of prostate cancer I have a vested interest in trial results--as do 12 million other Americans with cancer. Somehow we need to make sure that everybody who could benefit, might benefit, or has no other options at least knows about clinical trial options. There are no promises and no guarantees but it might just be the best (or only) option for you.

axman

Hurricane Sandy--We can Help

Whatever our personal strengths, ideas, and  challenges may be, every so often Mother Nature reminds us that we're not really in charge.

Hurricane Sandy has affected millions of people, destroyed billions in property, and changed lives forever. Why am I using my often tongue-in-cheek Prostate Cancer Blog to talk about a natural disaster? Well, I have friends and family on the east coast. My grandkids are OK and only had to survive four days without power. I feel an obligation to help. My life is good so helping someone else is a no brainer.

A small donation to the RED CROSS is a good start. It's amazingly easy.

Be generous.

axman

New Technology for Old Geezers--and Even Younger Ones

...more information sooner

Whether or not you have prostate cancer, another cancer, other health concerns, of just yearly checkups, many medical offices now have an added service.

I can get the results of most medical tests--often blood tests in my case--in just a few hours online. If you already know all about this you can stop now. In the past I sometimes had to wait a few days or even a few weeks to find out what my latest PSA, cholesterol level, liver function, or whatever the tests happened to be. That is not necessarily a major hardship and you may consider that perfectly normal. But I'm not the most patient of patients.

The procedure is quite simple. If your doctor or clinic has this service they will give you a website URL and you will sign up and set a username and password (and then try to remember them). You might even be able to access your records through your smart phone. You will probably be able to access all or most of your medical records from the past. If you don't already have this service, ask next time you go to the office or phone in and check it out.

For me this is a good thing. I like to know what condition my condition is in. This service doesn't guarantee good results but it does guarantee timely results. Just saying...

axman

My Own Personal Prostate Cancer Dream Team

A new 'super group' of oncologists have been appointed to find out why many treatments for advanced prostate cancer are not very effective and then find better ones.

Stand Up To Cancer (SU2C) and the Prostate Cancer Foundation have combined resources to fund a Dream Team of Oncologists/Scientists to study personalized treatment for advanced prostate cancer. The three-year project will receive up to 10 million dollars from the sponsoring organizations.

Six doctor/scientists were chosen to work together to identify resistance pathways in advanced prostate cancer and find new and novel ways to overcome the resistance to treatment. Four campuses of the University of California (San Francisco, Los Angeles, Santa Cruz, and Davis), the University of British Columbia, and the Oregon Health and Science University are involved. 

My oncologist, co-author, and friend Dr. Tom Beer is one of the six chosen for the project. The full title of the project is: Targeting Adaptive Pathways in Metastatic Treatment Resistant Prostate Cancer (accurate but a tongue twister). It will concentrate on men with advanced prostate cancer who have no reliable treatment options. Current standard treatments to lower testosterone levels often don’t work or they stop working over time in men with advanced prostate cancer.

The long-term goal of the project is to improve outcomes for men with advanced prostate cancer (including me and possibly you). This would include increased length of life, reduced side effects, and a better quality of life. Clinical trials are scheduled to begin in 2013. 

Concentrating on speeding up this process sounds good to me. My prostate cancer is slowly advancing like it is with thousands of other guys. Getting the best minds in oncology to work together on this project could help find useful treatments and save lives.  I certainly hope so.

axman