Author: Dan

Month 34 – Perspectives on Prostate Cancer

On By DanIn Diagnosis, Prostate Cancer, Research1 Comment
September
is
National Prostate Cancer Awareness Month

Well, I really don’t have much of an update from a personal perspective.  Things are pretty much status quo, which is good.

I was amazed, however, that since the last post, this blog has surpassed the 10,000 page views mark, with readers from around the globe.  It’s astonishing to me given my original intent when starting this blog.

Speaking of readers, one of the blog readers (a fellow prostate cancer patient and now friend), forwarded me the article below shortly after my last post.

Again, there have been so many changes in guidance on testing and treatment in the last year that it will make your head spin.  If I were newly diagnosed today, I’m not sure what I would do.

I take that back.  One thing I would do is slow the decision-making process down and research, research, research.  But even at that, at some point you and your physician(s) are going to have to make a decision based on the best information available to you at that point in time, and there will always be some element of risk in whatever decision you make, no matter how thoroughly researched.

Does that mean that I rushed my own decision and regret having had the radical prostatectomy?  Generally speaking, no and no.

Yes, I could have kept on researching, but near the end, my head was ready to explode from all of the information that I had gathered, and that was taking an emotional and physical toll on me.

And, had my quality of life post-prostatectomy been not as good as it is, then I may have had a bit more regret about having had it.  Of course, any man would like to have full erections without drug assistance and no stress incontinence.  But my issues are relatively minor in the grand scheme of things and have little or no impact on my daily life.  That’s pretty good considering…

So read the article for a thought-provoking perspective, and use September to educate yourself and the guys in your life about prostate cancer.

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From Bloomberg

What If What You “Survived” Wasn’t Cancer?

What If What You ’Survived’ Wasn’t Cancer?

By Virginia Postrel – Aug 18, 2013
You’re feeling fine when you go for your annual physical. But your mammogram looks a little funny, or your PSA test is a little high, or you get a CT lung scan and a nodule shows up. You get a biopsy, and the doctor delivers the bad news: You have cancer. Because you don’t want to die, you agree to be sliced up and irradiated. Then, fortunately, you’re pronounced a “cancer survivor.” You’re glad they caught it early.

But maybe you went through all that pain for nothing.

For decades, the reigning theory has been that the earlier a cancer is spotted and treated, the less likely it is to be lethal, because it won’t have time to grow and spread. Yet this theory infers causality from correlation. It implicitly assumes that cancer is cancer is cancer, even though we now know that even in the same part of the body, cancer is many different diseases — some aggressive, some not. Perhaps people survive early-stage cancers not because they’re treated in time, but because their disease never would have become life-threatening at all.

This isn’t just logical nit-picking. Thanks to widespread screening, the number of early-stage cancers identified has skyrocketed. In many instances — including types of breast, prostate, thyroid and lung cancers — more early diagnoses haven’t led to proportionate decreases in mortality. (New drugs, not early detection, account for at least two-thirds of the reduction in breast-cancer mortality.) The cancers the tests pick up aren’t necessarily life-threatening. They’re just really common. So more sensitive tests and more frequent screening mean more cancer, more cancer treatment and more cancer survivors.

“We’ll all be cancer survivors if we keep going at the rate that we’re going,” says Peter Carroll, the chairman of the department of urology at the University of California at San Francisco and a specialist in prostate cancer.

Distracting Doctors

In a well-intended effort to save lives, the emphasis on early detection is essentially looking under the lamp post: Putting many patients who don’t have life-threatening diseases through traumatic treatments while distracting doctors from the bigger challenge of developing ways to identify and treat the really dangerous fast-growing cancers.

“Physicians, patients, and the general public must recognize that overdiagnosis is common and occurs more frequently with cancer screening,” argues a recent JAMA article by the oncologists Laura J. Esserman (a surgeon and breast-cancer specialist), Ian M. Thompson Jr. (a urologist) and Brian Reid (a specialist in esophageal cancer). They argue for limiting the term “cancer” to conditions likely to be life-threatening if left untreated.
That’s going to be a tough change for a lot of people to swallow. For patients and the rest of the public, getting tested offers a sense of control, encouraging an almost superstitious belief that frequent screening will ward off death. (A few years ago, when the actress Christina Applegate was making the talk-show rounds urging young women to get breast MRIs, my own oncologist told me he was getting calls from women who thought the tests would not merely detect but prevent breast cancer.)
Early detection of non-life-threatening cancers also produces a steady supply of “cancer survivors,” who work to support cancer charities and make their efforts look successful. There’s an entire industry devoted to celebrating “breast cancer survivors” in particular, and many women are heavily invested in that identity. It offers a heroic honorific as a reward for enduring horrible treatments. A term originally coined to remind cancer patients that their disease need not be fatal has become a badge of personal achievement.

Fearing Mistakes

Physicians, meanwhile, fear making a mistake. It seems safer to treat someone who doesn’t really need it than to miss something potentially fatal. But, warns Esserman, director of the Carol Franc Buck Breast Care Center at UCSF, “the cancers that grow and spread very quickly are not the ones that you can catch in time with screening.” If anything, emphasizing early detection misdirects research and funding. “We have to come up with better treatments, we have to figure out who’s really at risk for those and figure out how to prevent them,” she says. “We’re not going to fix it with screening.”

There are plenty of scientific unknowns. Take the commonly diagnosed breast cancer called ductal carcinoma in situ, which accounts for about a third of new U.S. diagnoses, 60,000 a year. In these cases, the cells lining the walls of milk ducts look like cancer, but they haven’t invaded the surrounding breast tissue. DCIS was a rare diagnosis before the introduction of mammograms, which are highly sensitive to milk-duct calcifications, and the JAMA article labels it a “premalignant condition” that shouldn’t even be called cancer. Arguably, a lot of women who think of themselves as “breast cancer survivors” have survived treatment, not cancer.

Yet oncologists who identify DCIS have been surgically removing it (and in many cases the entire surrounding breast) for 40 years, so it’s hard to know how dangerous it actually is. “Since we really don’t know the true natural history of DCIS we do not know if DCIS always progresses to invasive cancer or not,” says Colin Wells, a radiologist at the University of California at Los Angeles specializing in breast imaging. “There are some reasons to think not, but this needs to be worked out” with further research. If DCIS does spread to invade breast tissue, the question remains whether that cancer threatens to go beyond the breast, becoming lethal if untreated.

By contrast, we do know that a lot of prostate cancer isn’t dangerous. Autopsy studies show it’s quite common in older men who die from unrelated causes. “Out there in the street, if you remove the prostates in men over the age of 50, 30 to 40 percent would have some kind of cancer,” Carroll says, “most likely, low grade and low volume.”

Distinguishing Tumors

Thanks to more sensitive tests, he notes, the prostate “cancers we’re detecting today are totally different than the cancers we saw two decades ago. And our ability to distinguish these tumors is much better. We have the wherewithal now to be able to tell a patient that your cancer is highly likely confined to your prostate, of small volume, slow growing, and something that may not need immediate treatment at all.”

Carroll has more than 1,000 patients under “active surveillance,” getting regular PSA tests, imaging and biopsies. Only about one in three turns out to need treatment within five to 10 years. (An additional 10 percent opt for surgery simply because they get tired of all the tests or can’t take the anxiety.) The program is also working, Carroll says, to “decrease the burden of testing,” ideally by eliminating the need for repeated biopsies.

Prostate cancer illustrates the cultural barriers to abandoning what Esserman calls today’s “scorched earth policy.” Despite the widespread awareness that many prostate cancers aren’t life-threatening, many physicians are determined to find and treat it any time a PSA score comes in a little high. “I saw a gentleman this week who had had 12 biopsies, no cancer, and they said there must be cancer in there and they did 24,” says Ian Thompson of the University of Texas Health Science Center at San Antonio, who is one of the JAMA authors.

A prostate-cancer diagnosis is still terrifying to patients and their families. Thompson describes many of his conversations with patients — and especially with their wives — as “talking them off the ledge.” When he tells patients they’re likely to be fine without immediate treatment, they often worry how they’ll explain the good news to their children or neighbors. People expect a cancer diagnosis to entail trauma.

Although Carroll thinks calling slow-growing prostate tumors “cancer” is important to encourage vigilance, Thompson wants to change the nomenclature, using the term IDLE (indolent lesions of epithelial origin) to describe low-risk cases where waiting isn’t likely to make a difference. Just using the word “cancer,” he argues, creates unnecessary suffering.

“The number of people that will die from those slow-growing prostate cancers is really low,” he says, but the unacknowledged costs of giving them a cancer diagnosis are huge: “the person who can’t sleep for two weeks before his next test results, and all the follow-up biopsies and all the lost wages, and the people who can’t get life insurance because they now have a new cancer diagnosis, the person whose firm says, ‘Well, we’re concerned you have cancer and therefore you can’t be promoted to this job.’”

It’s a compelling case, but changing the vocabulary finesses the fundamental cultural issue: the widespread and incorrect belief that “cancer” is a single condition, defined only by site in the body, rather than a broad category like “infectious disease.” Someone doesn’t develop “cancer” but, rather, “a cancer.” How frightening that diagnosis should be depends on which one.

Special Post

On By DanIn Prostate Cancer, ResearchLeave a comment
September
is
National Prostate Cancer Awareness Month

Take time this month to learn more about prostate cancer, its effects, and the treatment options.

Much has changed in the last year concerning prostate cancer testing and treatment, and you need to be aware of those changes.  Get the latest information and guidelines from your personal physician, especially if you’re in an at-risk group.

It’s too important not to educate yourself about prostate cancer.  It’s your life we’re talking about, after all.

Month 33 – Bladder Endurance

On By DanIn Incontinence, Prostate Cancer, Research, Side EffectsLeave a comment

So here’s an interesting story on some research showing that men who take fish oil supplements for heart health may be putting themselves at increased risk for prostate cancer.

Fish Oils May Raise Prostate Cancer Risk

Granted, it’s only one study, so it’s something to take with a grain of salt, but it’s also something to keep an eye on for future studies.

*     *     *

Remember that next month, September, is…

National Prostate Cancer Awareness Month

Given all the changes in testing recommendations since last year’s Prostate Cancer Awareness month, it’s even more crucial to become educated about diagnosing prostate cancer and treatment options.  Make sure you spread the word and tell the guys in your life to take a few minutes to learn about prostate cancer in September.

*     *     *
BIOLOGY AHEAD

So a couple of weeks ago, I had a couple of surprises in the bladder control department.

Since the surgery, I have to admit that I get to be a bit more tactical and use bathrooms a bit more frequently than I should.  Typically, I’ll last 3-5 hours but may urinate a bit more frequently when I’m not sure when I’ll find the next toilet.

A few weeks ago, I was at a friend’s annual summer barbecue party, and I lasted just over 7 hours before having to go to the bathroom (and that was on a hot summer day when I was drinking plenty to keep hydrated).  So that was the first surprise.  I couldn’t recall the last time I went 7 hours during the day without using a toilet.  (I can sleep through the night fine most of the time.)

But at the end of the 7 hours when I did stand up to head to the bathroom, I sprung a leak.  This was more than the standard couple of drops during stress incontinence episodes, this was probably a good spoonful or so that left a two-inch diameter wet stain on my jeans.  Thankfully, by then, it was dark and my jeans were dark, too, so it wasn’t obvious.  Still, it was completely unexpected.

I guess the lesson learned is to keep emptying my bladder more frequently.  I really wasn’t conscientiously trying to set a “hold my bladder” record with the 7 hours; it just happened that way.

Month 32 – Robotic Surgery

On By DanIn Prostate Cancer, SurgeryLeave a comment

Those more astute readers of this blog may have noticed that I’ve added a new page, “Life After Radical Prostatectomy – 30 Months Later,” to give a quick overall update of where I’m at.

Check out the link to the right under the “Pages” section.

*    *    *

Here’s an interesting article about robotic surgery in general, its success, and its complications:

Robotic Surgery

The article is a bit alarmist, highlighting one really bad case, considering the thousands of perfectly good outcomes from a robotic surgery each year.  Still, it is good to see that perspective.

For me, one of the main and obvious take-aways from the article is that the surgeon’s experience level using the robot matters.  But then again, I already knew that when I drove myself nuts trying to find the best, most experienced surgeon possible.

If you’re having surgery at a teaching hospital, you may want to consider asking if there will be any “student drivers” at the robot’s wheel and, if so, for what parts of the surgery.  Because once you’re in anesthesia la-la-land, you won’t have a clue as to who’s doing what to your body.

Bottom line: research, research, research.

And don’t be afraid to question your doctor about his experience level.  If he or she hesitates when answering, or seems offended by the question, it’s time to look for another surgeon.  Which surgeon would you choose?  The one who says:

“I’ve performed 743 radical prostatectomies in the last 6 years, with the last one on last Thursday, and I have a 1.6% complication rate.”

Or the one who says:

“Well, um, I really don’t keep count, but I’m checked out on the robot and I know what I’m doing.”

It’s your body.  It’s your life.  You have every right to ask those questions before “hiring” your surgeon.

Life After Radical Prostatectomy: 30 Months Later

On By DanIn Life After Prostatectomy, Prostate CancerLeave a comment

So July 4th marks 30 months since my radical prostatectomy (and 30 months of independence from cancer!).

Where am I at in this journey?  Well…

Continue reading “Life After Radical Prostatectomy: 30 Months Later” →

Month 31 – Quiet Month

On By DanIn Prostate CancerLeave a comment

It’s been a quiet month this month, so there’s really not much to report.  That’s good.

I decided it was time to get a bit more physically active, so I’ve started doing some fitness walking.  And, while I’m in the early stages of it and my legs are a bit sore, I’m happy to report that there hasn’t been any problems with leakage as I’m speeding through the neighborhood.  (This morning I walked 4 miles in one hour–not bad for being 9 days into this.)

So, aside from my earlier special posts, that’s about it for this month.

Special Post – Safeway and Vons Support PCa Research and Awareness in June

On By DanIn Prostate CancerLeave a comment

I normally don’t like to plug specific companies, but when they go out of their way to increase prostate cancer awareness and help fund much needed research, I feel obligated to support them in their efforts.

Once again, during the month of June, the Safeway / Vons chains of supermarkets are asking customers to round up their purchase to the nearest dollar–or to make a larger donation–to help fight prostate cancer.

You can read about their efforts and where the money is going here:

Safeway Foundation

Press Release

Special Post – PSA Results

On By DanIn Prostate CancerLeave a comment

My PSA remains <0.01 (undetectable) 28 months after my surgery.  Translation: Still cancer-free.  Woo-hoo!

I asked my urologist about the recent studies that came out and the AUA’s recommendations for PSA tests going forward, and his reaction was interesting.  I’m not sure that he’s fully convinced that reducing screening is the right thing to do.  Still, he seemed open to the new thought process on the issue.

If anything, it told me that this discussion is far from over.

Month 30 – Genetic Test & PSA Guidance

On By DanIn Diagnosis, Prostate Cancer, ResearchLeave a comment

This will be a long post because there have been several important stories in the news about prostate cancer recently.

*    *    *

The first report talks about a new genetic test that will better classify the aggressiveness of prostate cancer, and that will allow patients and their physicians to better guide their treatment decision.  This progress is quite exciting.

New Test May Help Guide Prostate Cancer Treatment 
(Full text below in case article gets deleted by NBC News.)

Being able to know the aggressiveness of the cancer may give men on active surveillance greater peace of mind, and it may allow those who are recently diagnosed to choose active surveillance as their treatment option, avoiding the potential risks of long-term, significant side effects that can come with radiation or surgery.

Of course, the test is new and unproven in the real world yet.  Still, it is a step in the right direction.

The second article talks about the American Urological Association’s (AUA) change in guidelines concerning PSA testing, making the testing less frequent.

Urologists Recommend Less PSA Testing for Prostate Cancer
(Full text below in case article gets deleted by NPR.)

Funny that this article about PSA screenings would come out just before my next post-operative PSA screening (scheduled to get the results on 20 May).  I’ll have to ask my urologist what his thoughts are on all this.

*    *    *

What do I think about all of this?  Well, I’m glad that there is more and more research that is bringing the diagnosis and treatment of prostate cancer into better focus.  Don’t get me wrong, I still think there’s a long way to go, and if prostate cancer research had half the attention and support that breast cancer research does, we could make so much more progress at a more rapid pace.

What would I do if I were diagnosed with prostate cancer today given these and other recent developments in prostate cancer diagnosis, classification, and treatment?  Would I have skipped the radical prostatectomy?  I don’t know.

What likely would have happened is that I would have slowed the decision-making process down to allow for more time for research and reflection.

When you hear “cancer” for the first time, your immediate response is to say, “Get rid of it!”  That’s they way we’ve been conditioned all of our lives.  But now with these advances, we’re getting to the point where the initial response can be, “Can I live with it?”  But it’s going to take researchers and the medical community considerable time, effort, and facts to convince us that “Can I live with it?” should be the appropriate response.

*     *     *
Pricey new test may help guide prostate cancer treatment
By MARILYNN MARCHIONE
updated 5/8/2013 9:55:14 AM ET 2013-05-08T13:55:14
A new genetic test to gauge the aggressiveness of prostate cancer may help tens of thousands of men each year decide whether they need to treat their cancer right away or can safely monitor it.
The new test, which goes on sale Wednesday, joins another one that recently came on the market. Both analyze multiple genes in a biopsy sample and give a score for aggressiveness, similar to tests used now for certain breast and colon cancers.
Doctors say tests like these have the potential to curb a major problem in cancer care — overtreatment. Prostate tumors usually grow so slowly they will never threaten a man’s life, but some prove fatal and there is no reliable way now to tell which ones will. Treatment with surgery, radiation or hormone blockers isn’t needed in most cases and can cause impotence or incontinence, yet most men are afraid to skip it.
“We’re not giving patients enough information to make their decision,” said Dr. Peter Carroll, chairman of urology at the University of California, San Francisco. “You can shop for a toaster” better than for prostate treatment, he said.
A study he led of the newest test — the Oncotype DX Genomic Prostate Score — is set for discussion Wednesday at an American Urological Association meeting in San Diego.
The results suggest the test could triple the number of men thought to be at such low risk for aggressive disease that monitoring is a clearly safe option. Conversely, the test also suggested some tumors were more aggressive than doctors had believed.
Independent experts say such a test is desperately needed but that it’s unclear how much information this one adds or whether it will be enough to persuade men with low-risk tumors to forgo treatment, and treat it only if it gets worse. Only 10 percent who are candidates for monitoring choose it now.
“The question is, what’s the magnitude of difference that would change the patient’s mind?” said Dr. Bruce Roth, a cancer specialist at Washington University in St. Louis.
One man may view a 15 percent chance that his tumor is aggressive as low risk “but someone else might say, ‘Oh my God, let’s set the surgery up tomorrow,'” he said. “I don’t think it’s a slam dunk.”
Also unknown: Will insurers pay for the expensive test without evidence it leads to better care or saves lives?
The newest test was developed by Genomic Health Inc., which has sold a similar one for breast cancer since 2004. Doctors at first were leery of it until studies in more groups of women proved its value, and the same may happen with the prostate test, said Dr. Len Lichtenfeld, the American Cancer Society’s deputy chief medical officer.
The company will charge $3,820 for the prostate test and says it can save money by avoiding costlier, unnecessary treatment. Another test for assessing prostate cancer risk that came out last summer — Prolaris by Myriad Genetics Inc. — sells for $3,400.
Both companies can sell the tests without Food and Drug Administration approval under separate rules that govern lab diagnostics. Myriad Genetics has published nine studies on Prolaris involving more than 3,000 patients. Genomic Health has not published any results on the prostate test, another thing that makes doctors wary. Yet it has a track record from its breast cancer test.
About 240,000 men in the U.S. are diagnosed with prostate cancer each year, and about half are classified as low risk using current methods. Doctors now base risk estimates on factors such as a man’s age and how aggressive cells look from biopsies that give 12 to 14 tissue samples. But tumors often are spread out and vary from one spot to the other.
“Unless you can be sure your biopsy has hit the most aggressive part that’s in the prostate, you can’t be sure” how accurate your risk estimate is, explained Dr. Eric Klein, chief of urology at the Cleveland Clinic, who led early development of the Oncotype prostate cancer test.
For one study, researchers used prostates removed from 440 men. They measured the activity of hundreds of genes thought to be involved in whether the cancer spread beyond the prostate or proved fatal. A second study of biopsies from 167 patients narrowed it down to 81 genes, and researchers picked 17 that seemed to predict aggressiveness no matter the location in the tumor.
A third study used single needle-biopsy samples from 395 UCSF patients scheduled to have their prostates removed. The gene test accurately predicted the aggressiveness of their cancer once doctors were able to see the whole prostate after surgery.
Using one current method, 37 of the 395 men would have been called very low risk and good candidates for monitoring. Adding the gene test put 100 men into that category, said another study leader, Dr. Matthew Cooperberg of UCSF. The gene test shifted about half of the men into either a lower or a higher risk category.
“It went both ways — that was the remarkable thing. In any category of risk it added independent information compared to the standard criteria we use today,” Carroll said. “More work needs to be done, but, in my opinion, this is a very good start.”
However, Dr. Kevin McVary, chairman of urology at Southern Illinois University School of Medicine and a spokesman for the Urological Association, said the test must be validated in more men before it can be widely used.
“It’s not there yet,” he said.
UCSF just got a federal grant to see how men choose treatments and whether this test might sway them.
“We throw all these numbers at them. Are they really going to make a better decision?” Cooperberg said.
Dean Smith, 60, a retired marketing executive from Mill Valley, Calif., is following his doctor’s advice to monitor the cancer he was diagnosed with in March. He said a gene test may have made him more comfortable with that decision.
At least six of his friends suffered side effects ranging from urinary leakage to inability to have sex after having their prostates removed.
“I would suspect that having cancer and having to live with it would be very difficult for them,” but it doesn’t bother him, Smith said. “I will die from something other than prostate cancer, I guarantee you.”
*    *     *

Here’s a link to the American Urological Association’s latest guidelines for the detection of prostate cancer:

Detection of Prostate Cancer

(I’ve added a link to the AUA in the “Helpful Links” section, too.)

Urologists Recommend Less PSA Testing For Prostate Cancer

by Scott Hensley

May 03, 2013 2:49 PM

Terry Dyroff, of Silver Spring, Md., had a PSA blood test that led to a prostate biopsy. The biopsy found no cancer but did give him a life-threatening infection.

The men and women who often treat prostate cancer are now recommending that the blood test commonly used to screen for it should be given a lot less often.

The American Urological Association released new guidelines that, if they’re heeded, would dramatically reduce the ranks of men who would be candidates for PSA testing.
The prostate-specific antigen test can catch cancer early, but it frequently gives false alarms or identifies cancers that don’t require treatment.
So the urology specialists now say this about screening for prostate cancer:
  • Men under 40 shouldn’t get PSA tests.
  • Men ages 40 to 50 shouldn’t be tested, if they’re at average risk for the disease. Those at higher risk — such as African-American men and those with a family history of prostate cancer — should talk it over with their doctors.
  • For men 55 to 69, the test makes the most sense. The AUA panel recommends a shared decision by doctors and patient about the test. Once testing begins, the panel says it should be given every two years, rather than annually.
Finally, the group says men over 70 and with less than a 10 to 15 year life expectancy can probably skip the test.
Johns Hopkins urologist H. Ballentine Carter, chair of the guideline panel, acknowledged to USA Today that some men and doctors may be hesitant about less screening.

But the evidence reviewed by the panel supports the stance. PSA screening can prevent about 1 death from prostate cancer for every 1,000 men screened over a decade, the guideline says. But there are dangers from testing, including false positives and side effects from subsequent testing and treatment, including infections, impotence and incontinence.

“The public is very enthusiastic about screening, partly because of our messaging,” Carter told USA Today. “The idea that screening delivers benefits may have been overexaggerated.”

Almost a year ago the influential U.S. Preventive Services Task Force issued its own guideline saying healthy men should no longer get routine PSA tests.

The urologists disagreed then — and now. But the conversation has now shifted to how few men should get tested instead of how many.

Update at 3:55 p.m. ET: Dr. Otis Brawley, the American Cancer Society’s chief medical officer, and a longstanding critic of PSA testing, praised the urology group’s work in an email to Shots:

“I believe that the American Urological Association should be commended for a very careful evidentiary review and developing a statement that is truly consistent with the state of the science.

“The past 20 years represents some of the worst in public health in that we widely disseminated a screening intervention before adequately assessing it. I welcome any effort to explain to men the uncertainty, potential harms, and potential benefits of PSA screening. Use of this test should be a decision made by the individual patient in collaboration with his healthcare provider. The American Urological Association statement combined with the American College of Physicians statement of last month should mean the end of mass screening for prostate cancer.

“Now the American Cancer Society and five other independent organizations are calling for shared or informed decision making regarding use of this test.”

Month 29 – Blogging About Cancer

On By DanIn Incontinence, Prostate Cancer, Sexual Function, Side Effects, Social Aspects1 Comment

I stumbled across the article below a few weeks ago and found it to be quite interesting, considering that I’ve been blogging about my prostate cancer for over two and a half years and 8,000+ page reads now.

Blogging about cancer certainly isn’t for everyone, and there are concerns in this electronic age.  For example, how much do you want your employer to know about what you’re going through?  How do you protect your own privacy and the privacy of others in your blog?  All things to consider.

I haven’t looked at some of the sites mentioned in any detail, but the one that offers up a calendar to coordinate visits, meals, snow shoveling, etc., is something that could come in quite handy.

During my recuperation, I had very generous friends and neighbors who would help me out, but there was no coordination, and I’d end up with three meals on one night, and go for four or five days without seeing someone.  Would have been nice to have that calendar and the ability to coordinate better.

*     *     *
BIOLOGY AHEAD
Well, last month I reported having had an erection good enough for penetration, and I’m sad to report that, for now, it appears to have been a one-time event. Still, my erections are certainly better than a year ago, and it’s something I’ll discuss with my urologist when I go for my next PSA test in May.

Other than that, things are pretty good… I can sleep 7-8 hours through the night without having to use the bathroom, and I think I’m stuck with some very minor stress incontinence (a drop or two when I cough, sneeze, or squat) from here on out.

*     *     *

Why More Patients Should Blog About Illness and Death

by Eliza Barclay

March 28, 201310:05 AM

I entered the world of illness blogs for the first time when I learned through Facebook that a friend from middle school passed away last Friday from acute myeloid leukemia. In the three months between his diagnosis and his death, the friend, whom I’ll call Tom, blogged beautifully and intimately on CaringBridge, a Web tool designed to help the seriously ill tell their stories and manage communication with friends and family.

Tom was 34. In his Web journal, he wrote about the trauma of bone marrow exams and chemotherapy and his anxiety about finding a bone marrow transplant donor. He supplemented his dispatches from the cancer ward with funny and raw Instagram photos, defiant tweets and YouTube videos and lyrics of the songs he was listening to.

Altogether, it was a window, painful but so rarely accessible, into the exquisite horror of a harrowing prognosis and the burden of the toll of illness on his friends and family. Tom was desperately worried about his wife, his young son and his daughter on the way. Yet his love for them rang out so clearly through his writings that the blog itself may one day be a treasured memento of the ways Tom held them close in his final days.

We share so many milestones now through social media. And that includes health: A 2010 survey by Pew Research found that 23 percent of the users of social networking sites have followed their friends’ personal health experiences on Facebook. So is it any surprise that the outer reaches of our social networks now also deliver us intimate stories of dying?

Palliative care experts, who specialize in improving the quality of life for people with a life-threatening illness, say all this blogging and sharing about illness is helping to open up the conversation about death that we so often avoid.

“As more people tell their story of dying with a terminal illness, we’re seeing a change in how we look at illness and mortality,” says Christian Sinclair, national hospice medical director at Gentiva Health Services, a large home health care company. “Illness and death are still so technically driven, or medicalized. So getting a safe space, like a blog or social media, to talk about it can be very empowering.”

Blogging empowers patients to talk about illness outside the typical frame of “the battle,” Sinclair says, and reading the stories helps family members, too. “They don’t have to dodge the hard questions, because the patient is able to tell their story openly and frankly,” says Sinclair, who also edits the blog Pallimed.

The most prestigious medical institutions, including Johns Hopkins and the University of Michigan, now encourage patients to blog their illness through sites like CaringBridge and CarePages. In the hospice community, a longtime volunteer and software engineer started What Matters Now to offer similar services.

Other institutions, like the Georgetown Lombardi Comprehensive Cancer Center in Washington, D.C., run writing workshops. Nancy Morgan, who directs the center’s arts and humanities program, says she never instructs people to write directly about cancer. “There is a potential for wounding,” she says, especially if the patients are depressed or otherwise feeling too vulnerable. “Most of the time they do [choose to write about the cancer], but it’s their choice.”

While many illness blogs are read only by friends and family, some patients go more public with their stories. Right here on NPR.org, Leroy Sievers and his wife, Laurie Singer Sievers, blogged their way through Leroy’s cancer, which took his life in 2008. And David Oliver, a retired professor of gerontology at the University of Missouri, and his wife, Debbie, a palliative care and hospice expert at the same university, have kept a video blog of David’s illness on YouTube and this site.

Still, some bloggers keep their blogs private from certain people close to them during their illness. A 2011 survey of 41 illness bloggers by researchers at Tufts University School of Medicine found that only 1 in 4 of the writers shared their blogs with their health providers.

Holding back from doctors and nurses like that could be a missed opportunity — and not just for the patient, according to Sinclair. “I think these blogs help physicians and nurses see their patients as [people],” he says. “But there are boundaries, and some health care professionals are looking for opportunities to get closer while others want to shield themselves.”

Sinclair says that when patients have shared their blogs with him, he’s enjoyed them. “I think it helps us check up on our own mortality. Am I doing the things I want to do? Am I making a difference? These are positive questions that can get lost in the shuffle of the day.”