Bring on Those Magical Cures!

When prostate cancer keeps coming back…

Logic, science, medical expertise, and common sense be damned; there comes a time when all that remains is faith, dumb luck, or magic.

So, we try the mud baths, salt water enemas, massive doses of Vitamin C or B, 20 cups of green tea each day, and even those hallucinatory mushrooms. And if it seems to work – even a little – we consider it a miracle.

When many types of cancer (such as prostate) come back after a shot or two at a cure, the rest of your time is spent being a ‘survivor’. “I’m still surviving; still alive.” That survival might be a few months or many years or somewhere in between.

If you want to know more about ‘miracle cures’ just go online. Google ‘non traditional cancer cures’ or ‘curing your own cancer’ or just ‘cancer cures’ and you’ll find hundreds of individual anecdotal miracles. “How Potato Peels Purified my Prostate” or “How Bungee Jumping Cured My Cancer.” Are any of these stories true? Is there any scientific evidence? Probably. Probably not. Maybe. Nobody knows. Everybody’s cancer is different from every body else’s.

Would I try a magical mystery cure? If the time and circumstances were right – yeah, probably.

Besides, I believe in magic.

axman

Prostate Cancer don’t get NO Respect

Sick Old Men Unite!

There are numerous runs, walks, auctions, pledge drives, dinners, and T shirt sales to support research and treatment for breast cancer. That’s as it should be, of course.

But where are the public relations people and events when it comes to prostate cancer? What’s the matter with all you guys with prostate cancer? Are you shy, indifferent, or embarrassed? Do you truly believe that real men DON’T (or shouldn’t) get prostate cancer? Yes they do (read Real Men Get Prostate Cancer Too – http://www.axmaker.com/ and convince yourself)! Big hairy bikers, iron pumpers, CEOs, vegans, pilots, bowlers, marathon runners, accountants, and even lawyers (as if anybody cares) do get prostate cancer.

One reason for prostate cancer’s seeming lack of public popularity is almost certainly men’s reluctance to discuss anything personal - and another reason may be that your prostate doesn’t show (do you know where your prostate is tonight?). Whether or not you have a prostate doesn’t do much to change your appearance (at least on the outside).

So speak up, educate people, and do your part to make sure that research continues to look for better treatments and even a cure!
axman

I Don’t Want to Live Forever…

…but just a little longer would be nice

Every part of our bodies wears out, short circuits, or ceases to function sooner or later. It doesn’t happen at the same rate for everybody. You know people who look and act years younger than their biological age – and you know some relatively young people who act old and decrepit. Of course we all see ourselves as looking younger than our real age…

Aging sneaks up on you. You’re joints get stiffer in the morning, you get a cramp after your walk, there’s a new pain in your shoulder, and don’t forget the arthritis in your hands. Then there is the need for stronger and thicker glasses every couple of years, a hearing aid (mostly its that others mumble more), and trying to save those few remaining teeth.

Your heart, your strongest muscle, seldom lasts more than a century or so, livers do better without too much alcohol (a little wine might even be beneficial I tell myself), and your lungs don’t much like smoke. And who knows when you might get hit by a bus!

We cope by making small adjustments, then larger ones; from there it's relying on medications, and often more serious treatments like surgery, chemotherapy, or getting new parts. As a last resort we look for miracle cures (as if surviving this long hasn’t been a miracle) – it all seems to be part of the plan.

axman

The Most Unpleasant Side Effects

…Still Slightly Better Than Being Dead

I routinely complain about the side effects from my surgery, radiation, and medications. But the fact is I am more than willing to endure the fatigue, weight gain, strange growths, hot flashes, and pain – as long as I can stay vertical or at least above ground. Surviving trumps lots of other stuff; no matter what others may tell you.

Time, research, and improved medications are resulting in fewer side effects – or so I’m told by highly educated medical practitioners. At the present time I’m still alive and more or less able to lead a normal life. Normal for an old duffer anyway... And I can use my current side effects as an excuse to avoid working in the garden and cleaning out the gutters (please don’t tell my wife).

I’m betting that all my elderly friends who bemoan the strange side effects they’re coping with wouldn’t trade those side effects for a pine box – just yet. Senior life, living with incurable diseases, and normal wear and tear requires choices and compromises – and a little hell-raising if you’re lucky. I am.

axman

A Morbid Curiosity with the Latest Cancer Research

…as if it made any difference

I subscribe to several email and Blog programs that send daily updates on all sorts of cancer research – and I read them all. Then there are the medical journal reports, Cancer Center articles, and anecdotal information. Reading all this stuff probably doesn’t make me even a little bit healthier. Even if there is a miracle cure in there someplace I’d probably get hopelessly confused by the medical gobbledygook.

All the headlines accentuate the positive: Mice with Prostate Cancer Treated with XTZ666 Live 27% Longer than Control Group, or New Chemo Cocktail Shows Promise, or Exploitation Drugs Ltd to Unveil Revolutionary Prostate Drug! As good as these headlines sound there isn’t any real information in there.

If I had not read any of those articles or studies nothing in my life would be much different – except for knowing a lot more about cancer ridden mice. I wonder if someone notifies the next-of-kin mouse.

So should we all read everything we can find – fact or fiction – about our particular disease? Will it help? Nobody knows.

I will likely continue my obsessive search for cancer information – I guess it’s in my nature. You, on the other hand, may be emotionally healthier than I am and able to resist the urge.

axman

Sometimes a Lumpy Boob is Just a Lumpy Boob…

The word boob is used here to denote an enlarged male breast and not the affectionate term my wife sometimes uses when referring to me.

My mammogram/manogram is now history. I discussed the basics along with my cartoon idea of the process in my October 10 Blog entry. I was right on – except the Mammo-Monster was smaller and slightly more innocent looking – and it didn’t talk to me.
The X-Ray Tech, Lisa (an altered name to protect the innocent and keep me from being sued), was calm, quiet, and gentle. Thank you! The process was slightly uncomfortable and required me to stand in some awkward positions but was much less traumatic than I had expected.
Some of my fellow patients in the Women’s Imaging Center waiting room may have been slightly surprised when the nurse called me in and left my wife sitting calmly and wishing me good luck.
Post-Gram I was visited by the Radiology Doc (and his lovely Intern) who explained, as he poked and probed, that I was cancer free – for now, but at increased risk from the hormones. The lovely young Intern seemed a bit uncomfortable as she was directed to check out my lumps (I’d use the word fondle but I may be fantasizing).
So now it’s back to worrying about prostate cancer and letting my breasts bounce where they may.
axman

Go to a Prostate Cancer Conference, Old Man

I recently attended a large prostate cancer conference at OHSU in Portland, Oregon. There were about 100 people in attendance – mostly old men with prostate cancer (like me) and their significant others (like my wife). The day-long affair consisted of short presentations by doctors from a variety of prostate cancer backgrounds – surgery, radiation, research, nutrition, and new treatments. There was a lot to learn.

The good parts:
· There was a lot of information and handouts and slides
· Some presenters were articulate, clever, supportive, and even inspiring
· Everyone was allowed to ask questions in an informal atmosphere
· There was more than adequate coffee, snacks, and lunch
· Rest rooms were large and nearby – a very good perk

The other parts:
· Some presentations were techno-babble heavy and hard to follow – Doc Talk was abundant
· There was little about “What might help us guys with prostate cancer right now”
· Much of the focus was five or ten years down the road – we don’t all have ten years…

Bottom Line:
It was worthwhile and I’ll go again next year. You can check out a complete video of the proceedings by going to: http://www.ohsucancer.com/index.asp?fuseaction=prostate.conference.
Check it out – you might learn something. You can fast forward through the parts you’re not interested in.
axman

The Ever Popular Man-O-Gram

Of all the things I though would never happen to me, a mammogram was near the top of the list. It was listed right after giving birth and having a hysterectomy. In doing my homework I found that when a man is involved the test is whimsically called a Man-O-Gram.

My breasts have grown steadily since I started hormone therapy more than a year ago. They’re tender, too. Maybe that’s too much information.

Every year a few thousand men have mammograms and a few hundred are diagnosed with breast cancer. My oncologist recommended I get a mammogram because of growing lumps or mass in my breasts – most likely caused by my hormone therapy, but… I discovered that some Imaging Centers won’t even accept male patients. My referral specifies the “Women’s Imaging Center”.

You’d think I’d get a little pity from my wife. Nope. Just, “Now you’ll know what it feels like!” And I will. I’ll share more after the deed is done. Nothing is impossible and never say never – I’m learning.
axman

Ego, Physical Decline, and Self Worth

I ain’t as good as I used to be. But then, few of us are...and maybe I never was!

Whether you’re healthy, relatively healthy, or ravaged with disease you will be going through a physical and probably mental decline if you live long enough. Whoopee! Getting your strokes by being faster, smarter, or more successful than somebody else doesn’t last forever. New parameters are needed – like being happy with still being alive.

Sometimes I sit around with my geriatric buddies and we inevitably get to talking about the good-old-days. Ironically, I used to make fun of my parents, aunts, and uncles when they did the same thing. Now, good-old-days means when I could do the things I did as well as I could do them – at least in my mind. Maybe it’s a matter of, “The older I get the better I was.”

There is some comfort in reminiscing about the past – it takes your mind off the trials and tribulations you’re dealing with in the present.

I’m not advocating living in the past. Carpe Diem! I enjoy living in the present – most of the time. Do what you can for as long as you can. Of course it would be nice to be young and strong and fast and have more hair - again.

Now that there are so many things I can no longer do I need to focus more on what I still can do. There must be something - besides writing a blog, that is. As long as I have loving (more or less) friends, kids, grandkids, and a tolerant wife, life is still pretty good. Different - but good. Painful - but good. Slower - but good.
axman

Setting a GOOD Example in those Declining Years

Or not… Since I published my book I have met with a dozen or so small groups of men and their wives to discuss prostate cancer, their survival, my survival, and of course my book. The groups are generally small (often really small) and the talk is very interactive – with others asking questions and making comments as I proceed. It’s all very calm and relaxed.

More often than not the questions sound like, “What should I do?” “What’s the best treatment?” “Does my Doctor know what he’s talking about?” “You must know what works – so share it with us!”

I really don’t know what they should do (except to buy and read my book). Sometimes they think I’m withholding information from them. After all, I have prostate cancer and I wrote a book so I must be an expert. Don’t I wish…

I tell than that if I knew of a cure for prostate cancer I would first cure myself and then share that information with the rest of the world – for a small fee, of course.

What I can do, and try to do, is to live my life the way I say that I do (in the book and during the talks). Whatever it is that I do must be working at least a little - I’m still alive. Basically that consists of good nutrition, staying active, keeping a positive outlook (most of the time), and thinking pure thoughts (OK, probably not the pure thoughts part). I’m not a saint, not even a little bit saintly, and would not recommend that anybody emulate me – unless they came to that conclusion after checking things out for themselves.

Men with prostate cancer should (probably) get as much information as possible, make choices based on their best judgment, and be willing to change direction if something doesn’t work. As far as I can determine, nobody knows for sure what anybody with prostate cancer should do.

axman

Men and Doctors – Keeping One from the Other

I’ve never known a man who would willingly go to see his doctor unless blood was gushing from a manly wound someplace. We all know it’s a good idea to get checkups, vaccinations, and prescriptions from time to time. But I put off doctor visits until my wife yells at me (inducing greater fear than seeing the doctor) and sometimes (usually) she even calls to make the appointment.

Most of the women I know make regular doctor appointments, write them down, and then actually show up at the appointed time. They don’t even make a big deal about it. Rumor has it that women (in general) live longer than men (in general). Could there be a connection between seeing a doctor and living longer? Nahhhh.

Don’t get me wrong, I get along just fine with my doctors. I even like them. I see four or five different physicians from time to time. Not one of them has ever mistreated me, lectured me, or even pointed and laughed. Maybe it comes down to some primordial need or urge to be manly and take care of myself. Or it may be inherent stubbornness or laziness – more likely. My wife would agree with all these reasons.

axman

Get 'er Done!

Rule #1 of Retirement: If you can do it yourself - you MUST!

Well, that's more my wife's rule than mine, but there is this mindset that as time gets shorter you hurry faster to get it all (whatever all means) done.

This summer we needed a new roof over the back deck and new siding on the house. You'd think that your average decrepit, sickly, elderly couple could find a younger and smarter and stronger handyman (or handywoman) eager for the job. After a brief (very brief) discussion we decided that we could easily do it by ourselves over the course of the summer. How hard could it be? And we'd save a bundle of money!

But the real reason we choose to do it may have more to do with that dratted work ethic instilled in us by our depression-era parents and grandparents. Hard work is good for the soul! Even though it may not be so good for the rest of the body.

It took two or three weeks to complete most of the work and probably double that to heal. Next comes the painting - yup, we're doing that part, too. At least paint is less dangerous than skill saws, electric drills, and hammers - if you don't inhale too often. And there IS that feeling of satisfaction, impressing the neighbors, and owning the family bragging rights; "Look what WE did during our summer vacation!" Nobody seems all that impressed and a few brave souls even asked why on earth we didn't get somebody else to do it.

I've noticed that quite a few of our geezer friends, some of them in much worse health than we are, still feel the need and obligation to do all their own repairs and building and painting and mechanical work. Maybe we'll make a smarter decision next time - but not likely.

axman

Q - How Many Body Parts can Hurt at the Same Time? A - LOTS

It has come to my attention that the number of body parts that exude pain at any given time is gradually increasing as my age gradually increases. You may be experiencing the same thing.

A few hours of yardwork can lead to several days of sore knees, back pain a 'crick' in my neck, and hands that ache and won't respond to normal directions from my brain.

I know that all those things come with advancing age. But what about the effects of my cancer and cancer meds? According to my doctors (more than one) the pains don't have much to do with the cancer - yet. As a matter of fact my urologist told me, "What do you expect; you're 69 years old!" He always manages to say something to make me feel better (or not).

My day is usually better if I start off in the hot tub, walk a couple miles, and limit strenuous labor (involvling hammers and saws and chain saws and hauling fireplace wood) to a few hours a day - and not every day, That way I can better manage my pains such as sore knees, back pain a 'crick' in my neck, and hands that ache .

Feeling pain tells me I'm still alive - and most of the time that's a good thing.

axman

Oh No! It's Back! Not Fair!

My PSA started to increase almost immediately after my prostatectomy in 2003. So other than the immediate shock, anger, and feeling sorry for myself, I have lived with the reality of recurring prostate cancer from the start.

In the past several months two old (with prostate cancer the 'old' part goes without saying) friends who underwent treatment five and eight years ago discovered that their PSA had started rising again. In fact their PSA had doubled every several months for quite a while. Both thought they were cured. For years their PSA had been near zero. They were sure they were cured.

When confronted with 'recurrence' they were understandably devastated. This happens to thousands of men every year - recurrence after five or ten or more years of being cancer free.

Being diagnosed with prostate cancer 'again' can be more emotionally difficult than being diagnosed the first time.

"It can't be happening again!"

"It must be a mistake!"

"I'm going to check with another doctor - one who will get it right!"

"I'm sure it will be OK when I get re-tested next month."

"OMG, I'm gonna die!!"

What can You Do?

First of all, stay calm. In the world of prostate cancer there is usually no reason to hurry up and take action. There are many treatments and the options vary depending on what treatment or treatments you had originally. Surgery or radiation or radioactive seeds might be options if they were not done previously. Hormone therapy may be appropriate. Or maybe your oncologist will recommend watchful waiting - at least for a while. There is bound to be SOMETHING you and your doctor can agree on. Don't panic. Don't rush to do something before you think it through. Keeping a positive attitude (not always easy) may be the best therapy of all.

axman

To Pee or Not to Pee...

...that is the question. Of course you recognize that line from the famous Shakespeare "Prostatectomy" soliloquy - or maybe not. But the question is relevant to anyone who has had one or more prostate cancer treatments in the past.

You've no doubt seen some of the numerous late-night TV ads for men who have trouble with urination (enlarged prostate/BPH). They tout all sorts of pills and liquids and ointments to make passing water easier. Us men who have been treated for prostate cancer have no such problems. As a matter of fact you can probably go pee any time you want - and sometimes when you don't.

After six years of various treatments - ranging from surgery to radiation to hormone pills - I have had reason to be concerned. Even though I long ago decided that living in a diaper was better than being dead without one, I did NOT want to go in that direction.

The bad news: You probably know that your likelihood of incontinence increases in the years after treatment.

The good news: There are some things you can do to improve your odds, so don't give up hope. I didn't.

For years I have done Kegel exercises (when I could remember) and that probably did help. More recently my Urologist prescribed some pills to relax my bladder. How could that help, I asked? He said that sometimes a more relaxed bladder makes it easier to control those unintended leaky moments. After a month I saw no difference, but after six months there has been a major improvement. It could all be psychological but that's OK, too. And I have a relaxed bladder - assuming that's a good thing!
axman

Think I'll Take a Nap

Every couple days I get the urge to take a nap. I don't necessarily want to take a nap - it makes me feel like the old Grandpas you see on TV snoring away in their rocking chairs. It tarnishes my self-defined macho image.
My Doctor assures me (or reassures me) it's just that I'm old as dirt (almost 69). That's true, of course, but I don't actually feel that old.
Fatigue is listed as a possible side effect for each of my several medications. Now that's something I'm more willing to believe.
And there's the possibility that it's the biological process of my ancient immune system fighting off the Prostate Cancer that tires me out a bit.
Whatever it is, my energy level is definitely below par (at least below what I want it to be). It could be that the old geezer nap might not be such a bad idea after all - maybe. I'll let you know.
What is your experience with fatigue - and overcoming it? Let me know.
axman

More About Clinical Trials

Back on April 8th I talked a little about my experience with clinical trials. I'm doing some research on who particpates in clinical trials - or more likely who is NOT participating. Fewer than 5% of those with cancer ever join a clinical trial.

Why don't people participate? Nobody knows for sure but there are some interesting survey restults. More men than women participate - a bit of a surprise because women are much more likely to seek medical treatment. About half of those doctors surveyed reported not even telling their patients about clinical trials. They cited being uncomfortable about discussing trials as a major reason. You may have to ask THEM!

Some people who know about trials opt not to participate - everybody has that choice. Some Health Insurance carriers refuse to pay for any cancer treatment if you are participating in a clinical trial. In about half of all states there are laws that now require Health Insurance carriers to pay for 'normal' treatment costs that would occur whether or not you were in a clinical trial. Medicare (if you're covered) pays for most regular treatment costs if you participate in a Clinical Trial.

Some trials have been cancelled because they couldn't get enough participants. That delays approval of potentially helpful drugs.

I definitely want any drug that might help me to be tested and approved if it actually works. So if you're so inclined and eligible - at least think about participating.

The NIH (National Institutes of Health) has a comprehensive site listing trials abailable all over the U.S. http://www.clinicaltrials.gov/ct2/results?term=cancer.

axman

Don't Read the Fine Print!!

Like many of you, I've been taking several medications to "manage" my prostate cancer for a while now. There are dozens of drugs in several categories that are supposed to slow prostate cancer growth in strange and unique ways. That's old news.

If you have a slightly perverse mind - like me - spend an entertaining half hour googling your meds and checking out the Side Effects section (sometimes called contraindications). No matter what the drug, there will be a list of possible side effects as long as your arm - it's required by law.

After reading about the possibility of hot flashes, constipation, incontinence, diarrhea, cramps, swelling, headaches, weight gain, memory loss, and impaired vision it seems I might be better off with the cancer than the side effects! My oncologist says different but HE isn't taking my pills. But to tell it like it is, I haven't actually experienced MOST of the possible side effects.

So, I have decided (for now) to ignore those lists until I actually experience a contraindication or two.
axman

Watch Out for that BUS!

Just after I found out my prostate cancer had 'recurred' after the surgery to end all surgeries and cure me forever, I was feeling pretty sorry for myself. Why me? It's not fair! I'm going to die a horrible death! My urologist didn't seem so upset. I was just one of 50,000 American men who was diagnosed with recurrent prostate cancer every year.

He told me, "Don't worry, you'll probably get hit by a bus before your prostate cancer kills you." Somehow that was reassuring. Nobody knows what will happen next. I actually could get hit by a bus tomorrow or I might live to 97. Men with prostate cancer die every day of all sorts of reasons other than prostate cancer. And most men with prostate cancer survive every day.

All I can do is get up every morning and do something I want to do and then repeat the process tomorrow morning. Easier said than done, but my level of anxiety is much reduced over these six years even though I still have prostate cancer and it is relentlessly, but slowly, progressing.

So I do what I can, try not to worry about what I can't control, and I stay far away from rogue busses. So far - so good!

axman

Just When You Thought...

...you could trust your oncologist, an article turned up in the NY Times that may cause you to be more cautious. Check this out at the Zero Cancer website http://www.zerocancer.org/site/News2?page=NewsArticle&id=10874. At a VA Hospital in Philadelphia there were serious errors in 92 of 116 treatments when radioactive seeds (brachytherapy) were inserted into the prostate (supposedly) of men expecting professional prostate cancer treatment. Seeds were actually injected into the colon, bladder, and other areas instead of the prostate. There have been serious and painful side effects.
This whole process took place over more than six years and nothing was done to intervene or protect the patients who were put at risk during that time.

Why do I include this here? I'm not trying to scare you; only to strongly suggest that you don't make hasty decisions. Talk to doctors, patients, friends, and clergy. Check hospital and doctor reviews online. Read the blogs and medical journals and reliable websites. While most doctors and hospitals and treatments are high quality you want to be sure.

The best treatment is what we all deserve. Demand it and expect it and let your doctor and hospital and insurance carrier know when that doesn't happen.
axman

Waiting for Symptoms

I am convinced most men (including me) operate in a state of denial at least part of the time. In my discussions with guys who have prostate cancer and those who's wives think they might be at risk there is a common thread: "I'll go see a doctor as soon as I have some symptoms." "What symptoms?" I ask. Many of these guys are convinced (or want to be) that anything as serious as prostate cancer would definitely have some warning signs. Pain or difficulty in urinating would be symptom number one. No pain - no disease.
If only... In fact (and most men know this deep down someplace) prostate cancer usually has NO early signs, signals, or symptoms. It would be nice to have symptoms BEFORE going to a doctor. If you go for a prostate cancer exam and DON'T have prostate cancer are you a wuss? Would Real Men and Real Women point and laugh? ...they might anyway, but that's another story.
Six years after my initial diagnosis and subsequent treatments I still haven't had even ONE small symptom that might be connected with my prostate cancer. Not one. And that's the norm.
Bottom line? Don't wait for symptoms. Be a wuss and get a checkup now and then.

axman

Bucket Lists

A couple years ago, when it became obvious that my prostate cancer and my wife's diabetes were not going to get much better or go away, we made some not-so-difficult decisions:

We were going to spend our kid's inheritance (the stock market has been amazingly helpful in this)

We were going to do as many things and go as many places as possible (bad backs and poor memories be damned)

We were going to spend time with kids and grandkids and friends (as long as they could put up with us)

We were going to read books and drink wine and take naps (so far so good).

When I shared this sort-of philosophy with some of my prostate cancer survivor friends, they didn't necessarily share my goals. In fact, several of them had an almost-opposite goal: stay home, relax, enjoy what you have, and fade away gracefully. It made me think a little (I didn't want to overdo it) - everybody has their own idea of what their retirement years should include. Fair enough. Just make sure you actually make a decision. Don't just let time slip and slide away and then wonder where it all went...
Do what YOU want to do before you "kick the bucket."
axman

Positive Attitudes - Bah Humbug

I keep running into guys with prostate cancer - I actually seek them out. My mercenary side tries to sell them a book or two. My warm and fuzzy side wants to share information on the secrets of survival.

To a man, they seem genuinely optimistic. "I'm figuring they'll find some better treatments in a year or two." "I feel better than I did six months ago!" "I'm not dead yet!"

I've even noticed subtle changes in my own skeptical, curmudgeonly life style. For a couple of years now I've made an effort to reconnect with old friends I hadn't seen in 20 or 30 years - or even more. The reunions have been great - even a little emotional sometimes. And, a high percentage of those old geezers have prostate cancer or some other cancer. Nobody ever complained; just shared. Maybe that cup is half full after all.

axman

And the BEST Treatment is…

OK, OK, nobody really knows, but in a new research study there may be an indication – if you’re young enough. If you’re older than 50 when you’re diagnosed the jury is still out.

Researchers at Henry Ford Hospital in Detroit, Michigan reviewed more than 8,200 cases where men were diagnosed with prostate cancer before they were 50.

The Study in a Nutshell

"When given the choice between surgery, watchful waiting or external beam radiotherapy, patients younger than 50 with moderately and poorly differentiated prostate cancers have better long-term overall and cancer-specific survival when they opt for surgery," says study author Naveen Pokala, M.D., an urologist with Henry Ford Hospital.

In 5, 10, 15, and 20 year follow-ups those men who opted for radical prostatectomy had a better survival rate than those who received external beam radiation (X-ray) treatment or chose active surveillance (watch and wait).

So tell your younger friends (more and more ‘young’ men are being diagnosed) to check out this study if they are diagnosed and BEFORE they opt for treatment. Long term survival rates keep getting better and better. I consider that pretty good news now that my post-treatment recurrent prostate cancer is at six years and counting. I try to count very slowly.

axman

Losing Friends

In the past few months I’ve lost some good friends – two of them to cancer and one to a senseless accident. Even though they’re gone I haven’t quite accepted it yet. Every so often something will happen and I’ll think, “I’ve gotta share that with…” Only then do I remember he’s gone.

In each case I was shocked and surprised; even though the two guys with cancer were in the later stages of the disease. But it can’t be – denial. Then sadness and concern for their families. And finally concern for myself. If it can happen to them…

I wish I’d had more time with them. And it strengthens my resolve to do the things I want to do and not wait until the weather’s better or I can afford it or I finish painting the house.

axman

Second Opinions? Why?

I know, I know you’ve heard this a million times (well a lot anyway). “Always get a second opinion.” Is it necessary? If you get the same information the second time you may think it wasn’t necessary. But without more information how are you to know?

There are some benefits you might want to weigh…

• The first diagnosis may be wrong. It could happen. PSA tests are not 100 percent reliable, DRE exams are not always reliable either. Without more information you may be making a decision that you could regret later.

• A second opinion could suggest that, although you do have prostate cancer, no immediate treatment is necessary (watchful waiting).

• Another doctor or another clinic may suggest more or different alternative treatments. Surgery, radiation, hormones, freezing, pellets… Of course that means more decisions for you.

• And maybe a second exam and opinion would give you more peace of mind and support in making the very difficult decision about what you should do – and the decision IS yours.

How did you decide? What decisions are you contemplating now?

axman

Hereditary Guilt Complex

If it's not bad enough to have an incurable disease of some sort; you can now worry about what you'll pass on to your kids - if you want to.

Shortly after I was diagnosed with prostate cancer I discovered that my sons were at increased risk for prostate cancer because I had it. My father was also diagnosed with prostate cancer.
My wife has diabetes and it is common in her family. Another genetic trait that can be passed on.

As it turns out, we can pass on all sorts of conditions, diseases, and predispositions to our kids. Does that mean we shouldn't have kids? Probably not. I have made sure that my three sons have had prostate cancer screening and one of them found he had a higher-than-usual PSA at age 38.

I hope none of my children get prostate cancer, diabetes, arthritis, or any of the other conditions they may inherit. And I hope none of the grandkids do either. I can encourage them to live healthy, get checkups, and pay attention to symptoms. The rest is up to them.

Maybe in another generation or two there will be medical breakthroughs that allow everybody to avoid genetically inherited diseases. In the meantime we all take our chances. I don't actually feel guilty but I wish my sons weren't at increased risk because of me. If I knew when I was 20 what I found out at 63 would I have even had kids? I don't know for sure but I probably would still have fathered a gaggle of kids.

Life is unpredictable, strange, and amazing.
axman

Look for the Good News

My definition of health, happiness, and quality of life has undergone some significant changes over the past seven years. Since I was diagnosed with prostate cancer my health news has not been consistently good. There have been snippets of good news along with the progression of my recurrent cancer. This week I experienced one of those snippets of good news that has me smiling - at least for now.

Progressions - Good News has Many Definitions

• Seven years ago - the good news was that I had NOT been diagnosed with prostate cancer and there was no possibility in my mind that I ever would be! I was invincible.
  



• Six years ago - the good news was that my surgeon told me the tumor was encapsulated and the tumor and my cancer had been successfully removed. Survival is always good news.



• Four years ago - the good news was that after 37 external beam radiation treatments my recurrent cancer was gone - again - and my PSA was near zero. And the sores and weakness would pass.
  



• Two years ago - the good news was that I was accepted into a clinical trial that looked promising for slowing my ever-increasing PSA. Potential good news, anyway.
  



• One year ago - the good news was that I started taking two hormone medications that almost immediately started to lower my PSA. Good news, but no cure.
  



• One week ago - the good news was that my PSA was low enough that I could stop taking ONE of my hormone pills - for a while at least.



• Next month - who knows? As long as my definition of Good News is flexible I can keep looking.
  

So now I'm happy to be as healthy as I am for as long as I can. The rules and the reality keep changing. I hope I can keep up. I'm sure I can.

axman

What About Clinical Trials?

There are hundreds of thousands of men who have been diagnosed with prostate cancer. In many cases (like mine and maybe yours) there is no known cure. So what do you do next? Often the answer is to do nothing. That's not a very good answer.

Whatever the stage of your cancer there are probably clinical trials available that are testing new drugs or procedures. In most cases there is very little or no cost to you. But very few of us who have cancer ever participate in a clinical trial or clinical study. Why?


Maybe you don't know about the trials. Maybe your doctor recommends against them. In fact, only three to five percent of those with cancer ever participate in a clinical trial. A trial has no guarantees of success. Most trials are quite safe - the medications have been extensively tested for safety before they're ever tried on humans. But nobody knows what the ultimate results will be.

I have been in two clinical trials. Neither of them cured my prostate cancer or even slowed it down. But I'm glad I participated - I got free testing, I learned more about my own cancer, and I made contact with others going through what I was going through. And I'd participate in another if it looked promising.

Talk with your doctor and google Clinlical Trials with the name of your cancer. Find out what's available and then ask lots of questions. You have to apply and fill out endless forms, but you might get lucky and land in a study that tests the new super cancer drug. It could happen.

What is your experinece with clincial trials? What are your reservations?
axman

What's New in Prostate Cancer?

The latest controversy in Prostate Cancer is whether or not men should even be tested - particularly using the PSA test. Recent published studies suggest that PSA testing is not all that accurate and may lead to unneeded treatment and the risk of serious side effects such as incontinence and impotence. And, the studies suggest, diagnosis and treatment may not extend your life anyway.

It is true that treatment (surgery, radiation, freezing, radioactive seeds) can lead to serious side effects. Most men who are diagnosed with prostate cancer do not die from prostate cancer. So is there any benefit in being diagnosed?

Being tested and/or diagnosed gives you some choices. You can always choose NOT to have treatment, but you might also choose to change your lifestyle, try a different diet, or look for alternative treatments.

Every man has to decide whether or not to be tested. It would be nice to know ahead of time whether you were at risk for a fast-growing tumor or if you would likely not even need treatment (watch and wait). If your father or brother has prostate cancer your risk is higher. If you are African American your risk is higher.

I was diagnosed with a fast growing tumor and had it removed. My cancer came back but I'm still alive. For me it was better to know and have a choice. I believe that I'm alive today because I had treatment. I have been able to manage my condition with medication, diet, weight management, and by remaining active. So far so good.
axman

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